So, I had written a very positive upbeat status of where Sadie was... it was all about how therapy is going well (despite the fact she doesn't enjoy any of it), but that she was progressing well. I wrote about how she is back in shoes and for the first time in many, many years she is without brace. I wrote about how we as a family realized that for many, many years we have been telling her when in pain to "stop", but for the first time we are telling her to push through and this is why therapy seems so hard on everyone physically and emotionally (at least we have an understanding). I wrote about how excited we were that with such positive progress the therapist was okay with her not doing therapy at Children's twice a week, but once was fine!! I wrote all this with an amazingly happy and hopeful heart. However... it sat and I didn't get a chance to get what was written into this journal before she hit a bump in the road.
On Friday the 21st Sadie went to see the surgeon for her 1 month follow up (really it was 5 weeks, but who's counting). He could not believe that she was walking in without a boot and was feeling no pain and was doing as well as she was! He was so amazed he raised his hands and said "Thank you for the miracle". We discussed the leg difference and the possibility of surgery to correct this in the larger picture (more to come another day). He said he was very happy with her progress and that we should come back in six month - we booked an appointment for JULY! We left soooo happy!!! What an amazing gift to have the surgeon confirm the greatness of her recovery.
On Sunday the 23rd, my grandma noticed that when checking out her "scar" that it didn't really look right (now keep in mind... we just saw the surgeon only two days prior). Sadie had just showered and walks around the house barefoot all the time, so prior to this we had noticed nothing. I went to look, expecting to see nothing really, maybe some redness from her walking that day. Rather what I saw was the center of her outer incision, black and very red and tender. We put some medication and a bandaid over it and then moved on with the day. It wasn't causing Sadie pain unless we touched it, so we left it be. That evening after a dinner at our place with some friends we were looking at it again as it seemed her ankle was more swollen. The "spot" looked even worse and appeared that if we pressed on it we would be able to get some pus out of it. The swelling, redness, the fact it was very tender to the touch and the appearance itself lead Bill and I to decide that a visit to the ER was warranted. So, Sadie and I packed up and headed to Children's ER as our local ER had a four hour wait! We arrived at Children's at 9:30 and were taken right back (quite night in the ER when we arrived). The resident doc looked at it and decided he just wasn’t' sure... he wanted labs and x-rays. The put an IV in case they needed to treat her and in case they wanted to drain anything from her ankle. After HOURS... the labs came back inconclusive... her levels showing fighting infection were elevated, but not dramatically as they would expect if she had an infection. Her inflammatory rates were just a tad elevated too... so basically they weren't sure and didn't feel comfortable saying the swelling was the start of a "flare" verse an infection. They were concerned with the open sore and not sure with no trauma why that would have presented. So, they called the surgeon over the phone. He was obviously surprised as he had just seen Sadie. He sent his ortho resident on call to come look at her. Another hour plus rolled by and he came too look. He felt the same... not sure!!! So, they decided at 2:00 am that she should take some oral antibiotic and keep it wrapped and elevated! At 2:30 they sent us home, but allowed Sadie to keep the IV in as we had to come back for Remicade by 8:00 in the morning.
We got home Monday 24th (Christmas Eve) at 3:00 and both crawled into bed. We got up at 6:30 and crawled back to Children's. Once we arrived there the nurses in the infusion center weren't so comfortable knowing she may or may not have an open infection and called a rheumatology doc to come look at her. So, we waited.... patiently, but on the verge of falling asleep. The rheumatology doc came and looked and decided she felt infusion was fine, but she wanted her to soak her foot three times a day and use an antibiotic ointment... so she gave us that prescription and we then started our day. Because it was Christmas Eve, Bill was able to meet us at Children's and we traded places... I took Syrah home and took about an hour nap and he stayed with Sadie. That evening we were able to celebrate Christmas with my dad's side of the family without skipping a beat (well, I was a tad tired, but had fun none the less).
Christmas Day we were home and had a nice dinner with my mom, brother and sister-in-law. About 6:00 Sadie started to look very flushed and just generally not well. We took her temperature and she had a small fever 99.9. I gave her some Tylenol and she went to bed. When I went to check on her a few hours later... she was at 103 and that was on medication! I of course started to worry that we were talking full on infection and the day after Remicade (remember that is an immune suppressing medication); I was concerned. We discussed waiting to morning to see how she felt.
Morning came (on the 26th now) and she still was running 103 with alternating Tylenol and Aleve; so I called her Rheumatologist. They called right back stating "we want to see her at 3:30"; I responded with no problem! Within 10 minutes they called again and said "actually we would like to see her now"! So off we went again!
The good news... they didn't think it was an infection. Her labs didn't show and increase in numbers since the ER visit and if it was an active infection... they would have jumped. They said she probably has some type of bug and we needed to wait it out. Obviously this is good new. While we were there Sadie's Rheumatologist (who we planned to see on the 31st) came in to see her; I told her we were suppose to come back Monday and she said; lets just to the rest of the exam and then you don’t' need to come back. So, more news followed... her arthritis appears to be in control everywhere right now. The ankle swelling appears to not be in the joint and only time will tell with that, but the rest of her looks great. So, we are reducing the steroid she gets at infusion (huge praise!) and stretching out infusion from every four weeks to every six. This has been tried before and wasn’t successful, but I have huge hope that the New Year is going to be a NEW start for Sadie. This is a huge direction of prayer for those of you who pray for Sadie... that the stretching out of infusion and that the reduction in steroid only affects her in positive ways!
The Rheumatologist asked that we make sure to see the surgeon ASAP to follow up with the ankle. So, we went down to make that appointment before we left. The earliest we could get in was the 11th; so we took it.
Thursday - Sadie still had a consistent fever and felt pretty yuck. Children's called several times to check on her and the surgeons nurse called and advised they wanted to see her sooner than the 11th; so we made an appointment for the 2nd. They want us to keep the 11th for now too.
So, therapy has been on the back burner, but hopefully we will be back to routine by next week. Please pray for healing for Sadie and for rest for our family (as now it's going around us). It has been a long few days with lots of stuff... obviously good came of it, but in the mean time, it was a lot.
I hope that you all have a wonderful New Year and I pray that rather than reflecting on the changes you want for the future, you are able to look back at the year and count your blessings!! I know I have many!!!
Showing posts with label 2007. Show all posts
Showing posts with label 2007. Show all posts
Tuesday, October 27, 2009
December 12, 2007
The Jingle Bell Walk/Run was once again a very fun morning and a great turn out of family and friends! I appreciate all who contributed their support in the ways that they could… each and everyone has an impact in our lives and you are appreciated.
Sadie is doing fairly well; she went to therapy on the 6th with the expectation to get fitted for new orthotics so the process of getting those ordered would co-inside with new shoes needed to come out of her boot. Instead, she was meet with intense therapy and sent home with a long list of exercises that were required of her in addition to a new therapy schedule. We should have expected this, we should have know that there would be some work ahead, but we both were taken back by this news. To say therapy has been easy would be far from the truth. She is very comfortable in the boot, but get her out and start making her work… well, it's work! The biggest concern at this point is that her nerves seem to be "asleep". When the therapist looked at her foot she said "this purple dis-coloration is not from surgery, it's from the nerves not being awake". She told Sadie that she needs to take a rough wash-cloth and rub her foot vigorously for 15 minutes twice a day. So far, the longest she has made it is 4 minutes and that was with small breaks. It is extremely painful and she lets us know!
She had therapy again yesterday; the good news is that the nerve ending issue seems to be resolving. She still needs to continue to work on "waking" them, but at least it appears to be working. The therapist added some additional things to do at home and today she will get in the water for pool therapy also.
The future appears to be therapy 2 to 3 times per week and tons of at home exercises. I know that Sadie will get past this and I know we have tons to be grateful for in regards to many thing (the surgery went so well, we are so blessed to live within an hour to Children's, etc), but we are all a little tired of this routine. As it stands in the next few weeks we have 6 more visits to Children's between appointments and therapy in the remainder of this month. Please pray for our patience and mostly for therapy to be quick and effective so that Sadie can start the new year on a new foot (pun intended!). There will probably be one more update before, but I just want to wish all who support us - be it through cards, phone calls, listening, caring, loving and praying a very Merry Christmas. Remember the reason for the season! God Bless!!
Sadie is doing fairly well; she went to therapy on the 6th with the expectation to get fitted for new orthotics so the process of getting those ordered would co-inside with new shoes needed to come out of her boot. Instead, she was meet with intense therapy and sent home with a long list of exercises that were required of her in addition to a new therapy schedule. We should have expected this, we should have know that there would be some work ahead, but we both were taken back by this news. To say therapy has been easy would be far from the truth. She is very comfortable in the boot, but get her out and start making her work… well, it's work! The biggest concern at this point is that her nerves seem to be "asleep". When the therapist looked at her foot she said "this purple dis-coloration is not from surgery, it's from the nerves not being awake". She told Sadie that she needs to take a rough wash-cloth and rub her foot vigorously for 15 minutes twice a day. So far, the longest she has made it is 4 minutes and that was with small breaks. It is extremely painful and she lets us know!
She had therapy again yesterday; the good news is that the nerve ending issue seems to be resolving. She still needs to continue to work on "waking" them, but at least it appears to be working. The therapist added some additional things to do at home and today she will get in the water for pool therapy also.
The future appears to be therapy 2 to 3 times per week and tons of at home exercises. I know that Sadie will get past this and I know we have tons to be grateful for in regards to many thing (the surgery went so well, we are so blessed to live within an hour to Children's, etc), but we are all a little tired of this routine. As it stands in the next few weeks we have 6 more visits to Children's between appointments and therapy in the remainder of this month. Please pray for our patience and mostly for therapy to be quick and effective so that Sadie can start the new year on a new foot (pun intended!). There will probably be one more update before, but I just want to wish all who support us - be it through cards, phone calls, listening, caring, loving and praying a very Merry Christmas. Remember the reason for the season! God Bless!!
November 26, 2007
GREAT NEWS!!! Sadie has had a great few weeks since surgery. She stopped taking pain medication on Friday and hasn't had any problems at all to speak of. Today was her post-opp appointment and the doctor was AMAZED that she hasn't had any need for pain medication and that she has been feeling so well. They took the cast off and for the first time we got to see evidence that they actually did do surgery on her ankle. The stitches are going away, but she still has lots of swelling and discoloration which the doctor said should go away in the next two to four weeks. They put her in a walking boot and because she is doing so well they told her to slowly work up to normal activity. She can start to put some pressure on her foot until she is comfortable going to a full walk. He would like to see her attempt to not use a brace at all once she is out of the boot (he said coming out of the boot should take the next three - four weeks). When we got home she took two steps and then into the tub she went. She was very brave and took the tape strips off her stitches (which was really, really yucky to watch).
We did get the pathology report... it read like this:
Sections show skeletal muscle, cartilage and synovium. The synovial surface has a papillary appearance, more prominent in part B, and fibrosis, with no acute inflammation. In part B, many portions of synovium are necrotic, and in other areas, shown reactive charges with tall pseudostratified epithelium, calcifications and dystrophic bone, and histiocyte-rich infiltrates. Portions of cartilage in part B have focal cystic changes, irregular endochondral ossification and hypocellular marrow space.
Chronic Synovitis with necrosis
Synovial Chondromatosis
Did that make sense to you??? So basically in normal language; she has several things going on - 1) old DEAD inflammatory tissue (this is good, meaning non active arthritis).
2) some excess connective tissue.
3) excess bone grown with calcification (no understanding as to why this was happening).
Chronic Synovistis with necrosis - means: chronic inflammation with dead tissue.
Synovial chondromatosis - means: too hard to explain, this is the best link I could find although it does say that this does not happen in children (interesting since this is in the report as the diagnosis). www.bonetumor.org/tumors/pages/page71.html
Because there is no way to know why this is happened, there is no way to know how to prevent it. Obviously keeping the arthritis under-control is key!
During this Sadie has gotten out of the bath and is a tad uncomfortable, but mostly because her ankle is moving for the very first time. I will keep you all updated. I appreciate the prayers and support. We feel very much that God has put a blanket of protection over Sadie as this could have been a much longer, more painful process and thus far she has had a miraculous recovery!
We did get the pathology report... it read like this:
Sections show skeletal muscle, cartilage and synovium. The synovial surface has a papillary appearance, more prominent in part B, and fibrosis, with no acute inflammation. In part B, many portions of synovium are necrotic, and in other areas, shown reactive charges with tall pseudostratified epithelium, calcifications and dystrophic bone, and histiocyte-rich infiltrates. Portions of cartilage in part B have focal cystic changes, irregular endochondral ossification and hypocellular marrow space.
Chronic Synovitis with necrosis
Synovial Chondromatosis
Did that make sense to you??? So basically in normal language; she has several things going on - 1) old DEAD inflammatory tissue (this is good, meaning non active arthritis).
2) some excess connective tissue.
3) excess bone grown with calcification (no understanding as to why this was happening).
Chronic Synovistis with necrosis - means: chronic inflammation with dead tissue.
Synovial chondromatosis - means: too hard to explain, this is the best link I could find although it does say that this does not happen in children (interesting since this is in the report as the diagnosis). www.bonetumor.org/tumors/pages/page71.html
Because there is no way to know why this is happened, there is no way to know how to prevent it. Obviously keeping the arthritis under-control is key!
During this Sadie has gotten out of the bath and is a tad uncomfortable, but mostly because her ankle is moving for the very first time. I will keep you all updated. I appreciate the prayers and support. We feel very much that God has put a blanket of protection over Sadie as this could have been a much longer, more painful process and thus far she has had a miraculous recovery!
November 15, 2007
Thanks for your patience for the update; I attempted to update a few times from the hospital, but when I hit save, it would just disappear.
The surgery went very well (long, but well). We arrived at about 11:30, check in and at 12:00 we took her back. We meet with pretty much every person that was going to be with surgery. They gave Sadie some anti-anxiety medication because she was feeling understandably nervous about the entire situation. The medication was suppose to make her feel a little drowsy and loopy, but it really just made her very emotional. She spent about 15 minutes very upset before they took her back. This made it a little harder than it all ready was to leave her. They took her back to the operating room and then we waited. It was nice that my mom and grandma were there and we just talked about all kinds of things to help time pass. A good friend showed up with Starbucks to get us through the hours and that was much appreciated! At 3:30 they paged us to tell us that the surgery was over and we then waited in a small conference room to meet with the surgeon.
We met with Dr.M (the surgeon) who told us that he didn't find what the expected. He said there was very little inflammatory tissue, but rather several marble like (although not smooth spheres) crystallized masses that came out of her ankle. He said there was a lot of them and that they filled a specific location in her ankle which he said was probably the complete reason for her pain. He removed them all (enough to fill one half of a large baby food jar) and sent them off to pathology. There is no clinical name for them and any idea of what they are is now speculation. We have been told not to worry, that they don't think they are anything to be concerned with. He then told us that they did take a little bit of fluid out of the back of her ankle, but again nothing like he expected.
After the meeting we waited again to be given a room where we could meet Sadie. That didn't happen until almost 5:30; it was a long wait! Once we arrived in the room, Sadie arrived moments later. Although she was a little tired, once she got settled and woke up a bit, she immediately wanted food. They told us that in order to go home the next day she needed to be eating, drinking and taking her pain medication by mouth (she was on a block so she could not feel her right leg from the knee down at all!). She had an incredible night other then being woken up every few hours for vitals and in the morning the doctor came in to check on her. With the doctors okay the block was turned off and oral medication started. She did amazing.. you would have never known she had just undergone surgery. She wanted to get up on crutches and walk (she was a bit stir crazy) and was just generally ready to go. They checked us out at 2:00, but we still had to wait for her medications, so we went to the pharmacy and waited for another hour and a half before we left.
She was so happy to be home! Last night went pretty well; we still had to get up to give her the medication every four hours (but this is much better then every 2!); about 3am she started feeling sick. At this time (now 8:00 she is starting to feel a bit better, but is defiantly a little more run down today). She is not experiencing any pain in her ankle which is just a huge answer to prayer. The doctor did say that the amount of stuff that was taken from her ankle may cause her to feel better immediately and therefore the surgery won't feel like that big of a deal.
What is next.. Sadie will be in a cast for the next 2 weeks; she will have that removed on the 26th and we will see how she is healing. She will hopefully start therapy at that point also. Therapy will be a visit to the therapist every 2 weeks with a new program set in place for that period of time. Once out of the cast she will be put in a boot and will be on "non-weight-bearing" for four to six weeks. From that it will be a gradual process to work back up to walking. In all of this we will also continue the treatment plan for her arthritis which means her next remicade is on the 30th.
We are hopeful that with the outcome of the surgery being different than we expected that this also means that the recovery may go faster, but only time will tell. We are just so pleased that she isn't in pain!!
Thanks for all your prayers and support and care for Sadie and our family! We appreciate you all so very much!
The surgery went very well (long, but well). We arrived at about 11:30, check in and at 12:00 we took her back. We meet with pretty much every person that was going to be with surgery. They gave Sadie some anti-anxiety medication because she was feeling understandably nervous about the entire situation. The medication was suppose to make her feel a little drowsy and loopy, but it really just made her very emotional. She spent about 15 minutes very upset before they took her back. This made it a little harder than it all ready was to leave her. They took her back to the operating room and then we waited. It was nice that my mom and grandma were there and we just talked about all kinds of things to help time pass. A good friend showed up with Starbucks to get us through the hours and that was much appreciated! At 3:30 they paged us to tell us that the surgery was over and we then waited in a small conference room to meet with the surgeon.
We met with Dr.M (the surgeon) who told us that he didn't find what the expected. He said there was very little inflammatory tissue, but rather several marble like (although not smooth spheres) crystallized masses that came out of her ankle. He said there was a lot of them and that they filled a specific location in her ankle which he said was probably the complete reason for her pain. He removed them all (enough to fill one half of a large baby food jar) and sent them off to pathology. There is no clinical name for them and any idea of what they are is now speculation. We have been told not to worry, that they don't think they are anything to be concerned with. He then told us that they did take a little bit of fluid out of the back of her ankle, but again nothing like he expected.
After the meeting we waited again to be given a room where we could meet Sadie. That didn't happen until almost 5:30; it was a long wait! Once we arrived in the room, Sadie arrived moments later. Although she was a little tired, once she got settled and woke up a bit, she immediately wanted food. They told us that in order to go home the next day she needed to be eating, drinking and taking her pain medication by mouth (she was on a block so she could not feel her right leg from the knee down at all!). She had an incredible night other then being woken up every few hours for vitals and in the morning the doctor came in to check on her. With the doctors okay the block was turned off and oral medication started. She did amazing.. you would have never known she had just undergone surgery. She wanted to get up on crutches and walk (she was a bit stir crazy) and was just generally ready to go. They checked us out at 2:00, but we still had to wait for her medications, so we went to the pharmacy and waited for another hour and a half before we left.
She was so happy to be home! Last night went pretty well; we still had to get up to give her the medication every four hours (but this is much better then every 2!); about 3am she started feeling sick. At this time (now 8:00 she is starting to feel a bit better, but is defiantly a little more run down today). She is not experiencing any pain in her ankle which is just a huge answer to prayer. The doctor did say that the amount of stuff that was taken from her ankle may cause her to feel better immediately and therefore the surgery won't feel like that big of a deal.
What is next.. Sadie will be in a cast for the next 2 weeks; she will have that removed on the 26th and we will see how she is healing. She will hopefully start therapy at that point also. Therapy will be a visit to the therapist every 2 weeks with a new program set in place for that period of time. Once out of the cast she will be put in a boot and will be on "non-weight-bearing" for four to six weeks. From that it will be a gradual process to work back up to walking. In all of this we will also continue the treatment plan for her arthritis which means her next remicade is on the 30th.
We are hopeful that with the outcome of the surgery being different than we expected that this also means that the recovery may go faster, but only time will tell. We are just so pleased that she isn't in pain!!
Thanks for all your prayers and support and care for Sadie and our family! We appreciate you all so very much!
November 13, 2007
Thank you to everyone for your prayers.... Sadie's surgery went well and she is now in the recovery center resting. She is feeling really good and all ready eating. The doctor did not find as much inflammatory tissue as he expected, but instead found many small to large marble sized cyst like masses that were removed. At this point we aren't sure what they are, but there is some speculation. They have been sent to the pathology lab for confirmation. The doctor did feel that those were probably the cause of most of her pain. This should all be really good news as it means that her arthritis is more under control that we thought. If she is able to eat and start taking her medication by mouth and has peaceful night she should be able to leave tomorrow afternoon!!! Please pray for this because being home is really where all of us want to be. Thank you again for your prayers, love and support!!
November 12, 2007
Quick update: The surgery will be at 12:00 (well, we have to be there at 12:00 which means the surgery is probably around 1:00). The procedure can take anywhere from 1.5 to 3hrs depending on how things go (longer doesn't mean worse, just there is a lot to clean out!). There are some bone spurs that are moving right now (which is new, they were just kinda lodged before) and they hope to be able to get some of those out.
Cell phone service is not great at the hospital, but as soon as I (or Bill) can update here we will.
Thanks for the prayers and support!
Cell phone service is not great at the hospital, but as soon as I (or Bill) can update here we will.
Thanks for the prayers and support!
November 6, 2007
There isn't a lot to report in regards to Sadie right now. She has a blast (we all did) in Disneyland and we were so very grateful for the wheelchair. Honestly, I didn't realize how grateful I was until yesterday. After work I had two places to run to in the mall; Macy's and JC Penney; they were just quick runs, no browsing, so off we went. We parked at Macy's and did what we needed, then headed to Penney's (if you know Alderwood mall, you know that the distance is maybe about two blocks). Sadie was exhausted and in a lot of pain. Her limping got increasingly worse and she has to sit several times to make it. While in Disneyland I didn't really notice this, but then I remembered that Sadie sat in the wheelchair 85% of the time and those times she was out she was standing or riding on some ride. As painful as this was to witness yesterday, it actually served as an affirmation for me. I have been second guessing the surgery; what parent wouldn’t go over it in their minds to make sure they were doing the right thing? After watching her yesterday, I realize how much pain she is in and how just simply walking a few blocks does affect her.
On that note; the surgery is schedule for next Tuesday, which seems to be approaching quickly. We have all the pre-opp appointments on Monday and at that time will find out the time of the surgery (yes, we have to wait until the day before). I will try to do a quick post on Monday evening to just fill you all in on what I know. I should get a clear picture on what recover will look like, how she will be feeling, etc. I do know that they told us to prepare for one to three nights in the hospital (one if all goes well) and that she will spend two full weeks in a cast; meaning she should be coming out of the cast on November 26th. After the cast she will go into a boot, but will not be weight bearing at that point, but should be able to start some therapy. I am not sure what therapy looks like at this point, again, that is something we will find out on Monday.
I have had some people ask about visitors at the hospital. I know that they have visiting hours and I will post those Monday; I think that until I know the time and length of the surgery it is hard for me to know when people could come. I do know that Sadie will be medicated (obviously) so what she does or does not remember, only time will tell. I will be discussing Sadie's feelings about visitors with her and I will post that too. So far she has told me she doesn't mind and would enjoy visitors, but I also am not sure how clear she is on how she will be feeling.
For a the intent of a quick little post, that sure was long!!!
There is only 33 days until the Jingle Bell Run; I hope you will consider joining our team! You can follow the link above and join Sadie's Stars; it is a guaranteed good time, for a good cause!
On that note; the surgery is schedule for next Tuesday, which seems to be approaching quickly. We have all the pre-opp appointments on Monday and at that time will find out the time of the surgery (yes, we have to wait until the day before). I will try to do a quick post on Monday evening to just fill you all in on what I know. I should get a clear picture on what recover will look like, how she will be feeling, etc. I do know that they told us to prepare for one to three nights in the hospital (one if all goes well) and that she will spend two full weeks in a cast; meaning she should be coming out of the cast on November 26th. After the cast she will go into a boot, but will not be weight bearing at that point, but should be able to start some therapy. I am not sure what therapy looks like at this point, again, that is something we will find out on Monday.
I have had some people ask about visitors at the hospital. I know that they have visiting hours and I will post those Monday; I think that until I know the time and length of the surgery it is hard for me to know when people could come. I do know that Sadie will be medicated (obviously) so what she does or does not remember, only time will tell. I will be discussing Sadie's feelings about visitors with her and I will post that too. So far she has told me she doesn't mind and would enjoy visitors, but I also am not sure how clear she is on how she will be feeling.
For a the intent of a quick little post, that sure was long!!!
There is only 33 days until the Jingle Bell Run; I hope you will consider joining our team! You can follow the link above and join Sadie's Stars; it is a guaranteed good time, for a good cause!
October 19, 2007
Quick update: the doctor called after reviewing the neck x-ray's with the radiologist and they believe that her neck is fine... no arthritis. She has some range of motion issue, but its "the way she is made", not anything else.
Sadie did her labs re-test for her liver and kidney function testing on the 17th; results came back yesterday. They are in normal range. This is obviously good news, but also means the supplements may have caused the elevation. It could be a combination of the supplements, a supplement reacting to her medications or just too much. We have a plan on how to wean her back on, but we need to discuss that with both of her doctors so we can get some guidance on which supplements are most vital for her. We will get those appointments scheduled when we get back from our trip and we will start getting her back on supplements after the surgery (she has to come off all medications before surgery, so seems silly to try and start this process now).
That is our quick update... we are off to DISNEYLAND on Sunday. Sadie is obviously super excited.
Hard to believe that my baby girl will be 10 in 9 days!!
Sadie did her labs re-test for her liver and kidney function testing on the 17th; results came back yesterday. They are in normal range. This is obviously good news, but also means the supplements may have caused the elevation. It could be a combination of the supplements, a supplement reacting to her medications or just too much. We have a plan on how to wean her back on, but we need to discuss that with both of her doctors so we can get some guidance on which supplements are most vital for her. We will get those appointments scheduled when we get back from our trip and we will start getting her back on supplements after the surgery (she has to come off all medications before surgery, so seems silly to try and start this process now).
That is our quick update... we are off to DISNEYLAND on Sunday. Sadie is obviously super excited.
Hard to believe that my baby girl will be 10 in 9 days!!
October 4, 2007
Just a quick update to say that I had a dear friend that had much, much more on her plate in regards to physical needs of her family. We would chat about the frustrations we had when trying to get our kids well. She once said "you are allowed to visit the whow is me place, but you never get to pack your bags and stay". Well, I took a trip there Wednesday and feel much better today. Like I said in the last email; I rarely use this place as my venting board, but what I posted was real, raw truth of where I was.
Sadie is a great child, who is strong and courageous and who is going to beat this! We are a strong family that is blessed in so many ways and we are lucky to have the care we have, to have the resources we have, the support we have, we are blessed.
Thanks for allowing me to share Sadie's story, for allowing me to most often come here and give updates rather then having to tell the latest over and over, but most of all, thank you for allowing me to have a place to just be real about how painful it is to watch Sadie have to deal with this. I know there is worse out there, but as a parent (any who are reading would agree) to want the best for your child is normal... I just want the best for her and I trust that she is in His good hands.
Sadie is a great child, who is strong and courageous and who is going to beat this! We are a strong family that is blessed in so many ways and we are lucky to have the care we have, to have the resources we have, the support we have, we are blessed.
Thanks for allowing me to share Sadie's story, for allowing me to most often come here and give updates rather then having to tell the latest over and over, but most of all, thank you for allowing me to have a place to just be real about how painful it is to watch Sadie have to deal with this. I know there is worse out there, but as a parent (any who are reading would agree) to want the best for your child is normal... I just want the best for her and I trust that she is in His good hands.
October 3, 2007
I rarely come here and post when I haven’t had a moment to sit and really think out how to say what I want to say. Today however, I am posting to use this as my sounding board and to vent. I am feeling pretty frustrated! My frustration comes from an over whelming desire to have Sadie well. Oh, what it must be like to not have to think daily about the health issues of your child. Oh, what it must feel like to have a child know what pain free is!
Someone asked Sadie the other day if she was excited for surgery so she wouldn't feel anymore pain. Her response "I don't know what it is like to not feel pain, so I don't know what I am excited for". How heart-breaking is that!!! That is MY baby, who doens't want their children to live a pain free life???
Sadie saw her Rheumatologist on the 24th. She looked good with the exception of her ankle (like I have said in the past, this is its own problem now) and her range of motion in her neck. When I asked about the results of her neck x-ray she (doc) wasn’t sure so we looked them up and read the report together. The report does show some issues, but Dr. W needed further clarification as she wasn’t sure what they meant; why this wasn’t done in June when they x-rays were done… well, moving forward. So, besides those two issues Sadie looked good. She feels good, is over-all full of energy, she has avoided all illnesses (so far no colds, etc). BUT…. The liver enzyme and kidney function tests on her last labs were elevated and so a discussion ensued over this. Her doc would like her to come off all her supplements for the next week or so to see if those have an impact. I explained I felt it that it could have been her zithromax and we took her off that after the labs so I would like to re-test her labs before we remover her from anything else. She strongly “encouraged” that I take her off the supplements. Then she said “maybe we should just take her off everything and then run labs” (meaning supplements and the one and only anti-inflammatory she is on). My response was (literally) “are you kidding?” My issue here is that Sadie is FINALLY doing good. From experience I know that if she was to go into a huge flare it takes a LONG time to get that under control and I am not willing to just throw her back into that.
Okay, so fast forward to today… Remicade. We had the greatest nurse on earth (love her!). She was awesome with Sadie and just in general a very kind and caring person. She had her IV line done (took two times, better then three as it has been the last few times) and her blood drawn. Right before we left from there, the lab report came back and to my surprise – her liver enzymes are elevated even further then before. The kidney function is about the same as last time. I am floored; I really thought taking her off the zithromax would get her back to normal, but it didn’t.
So, I had to call the rheumatology department talk to the nurse about the labs and explain that I didn’t take her off the supplements yet. She wasn’t nice… I felt like a horrible mother for going against the doctor’s recommendation. The fact is… I am super scared to take her off the supplements. I was super scared to take her off the zithromax. I do realize she needs the liver/kidney functions back to normal range; they have been elevated since June. So, I will take her off all supplements except a multi-vitamin and her anti-inflammatory starting tonight. She will re-do labs in about two weeks and we will see if it makes a difference. There is a third step if that doesn’t work, but I am not even going to worry about that step until we get there.
The next step with her neck is either a CT scan or an MRI… I am patiently waiting the answer on that issue.
Please pray for Sadie’s health… I can’t even put into words the relief it is to see her feeling like she can function. The relief it is to not have her catching every cold that walks by her. The relief to see her have energy. I am concerned, so I guess prayer for my mind to be laid at ease and trust that God has her in His hands. Thanks!
Someone asked Sadie the other day if she was excited for surgery so she wouldn't feel anymore pain. Her response "I don't know what it is like to not feel pain, so I don't know what I am excited for". How heart-breaking is that!!! That is MY baby, who doens't want their children to live a pain free life???
Sadie saw her Rheumatologist on the 24th. She looked good with the exception of her ankle (like I have said in the past, this is its own problem now) and her range of motion in her neck. When I asked about the results of her neck x-ray she (doc) wasn’t sure so we looked them up and read the report together. The report does show some issues, but Dr. W needed further clarification as she wasn’t sure what they meant; why this wasn’t done in June when they x-rays were done… well, moving forward. So, besides those two issues Sadie looked good. She feels good, is over-all full of energy, she has avoided all illnesses (so far no colds, etc). BUT…. The liver enzyme and kidney function tests on her last labs were elevated and so a discussion ensued over this. Her doc would like her to come off all her supplements for the next week or so to see if those have an impact. I explained I felt it that it could have been her zithromax and we took her off that after the labs so I would like to re-test her labs before we remover her from anything else. She strongly “encouraged” that I take her off the supplements. Then she said “maybe we should just take her off everything and then run labs” (meaning supplements and the one and only anti-inflammatory she is on). My response was (literally) “are you kidding?” My issue here is that Sadie is FINALLY doing good. From experience I know that if she was to go into a huge flare it takes a LONG time to get that under control and I am not willing to just throw her back into that.
Okay, so fast forward to today… Remicade. We had the greatest nurse on earth (love her!). She was awesome with Sadie and just in general a very kind and caring person. She had her IV line done (took two times, better then three as it has been the last few times) and her blood drawn. Right before we left from there, the lab report came back and to my surprise – her liver enzymes are elevated even further then before. The kidney function is about the same as last time. I am floored; I really thought taking her off the zithromax would get her back to normal, but it didn’t.
So, I had to call the rheumatology department talk to the nurse about the labs and explain that I didn’t take her off the supplements yet. She wasn’t nice… I felt like a horrible mother for going against the doctor’s recommendation. The fact is… I am super scared to take her off the supplements. I was super scared to take her off the zithromax. I do realize she needs the liver/kidney functions back to normal range; they have been elevated since June. So, I will take her off all supplements except a multi-vitamin and her anti-inflammatory starting tonight. She will re-do labs in about two weeks and we will see if it makes a difference. There is a third step if that doesn’t work, but I am not even going to worry about that step until we get there.
The next step with her neck is either a CT scan or an MRI… I am patiently waiting the answer on that issue.
Please pray for Sadie’s health… I can’t even put into words the relief it is to see her feeling like she can function. The relief it is to not have her catching every cold that walks by her. The relief to see her have energy. I am concerned, so I guess prayer for my mind to be laid at ease and trust that God has her in His hands. Thanks!
September 22, 2007
Sadie's latest labs came back elevated again. I feel that if it was enough to alarm anyone I would have received a phone call. All doctors have a copy of the lab report, so we will wait and see. In the mean time she has been taken off her antibiotic until I consult the doctors about the labs. Sadie has a Rhuematology appointment on Monday morning and this should be a good time for me to get more information.
Sadie started pool therapy again, she loves all the time she can get in the water and it is great exercise for her! Overall Sadie seems to be doing really well, which we are grateful for more than words can express.
P.S. CHECK OUT TEAM SADIE'S STARS...
www.seattlejinglebellrun.org. We hope you will consider joining our team for this very fun and special event.
P.S.S. Check out all of Sadie's newest photos updated and leave us a note on her guest book; we love to hear from you!
Sadie started pool therapy again, she loves all the time she can get in the water and it is great exercise for her! Overall Sadie seems to be doing really well, which we are grateful for more than words can express.
P.S. CHECK OUT TEAM SADIE'S STARS...
www.seattlejinglebellrun.org. We hope you will consider joining our team for this very fun and special event.
P.S.S. Check out all of Sadie's newest photos updated and leave us a note on her guest book; we love to hear from you!
September 7, 2007
Sadie's blood work came back from the latest Lymes testing and it actually did the opposite of what it should have done to confirm Lymes. There could be legitimate reasons for this (being the Remicade could be suppressing her system to have the tests read negative) which is what we think happened, or she could not have Lyme. The issue now is... she is doing so well, what do we do. So, at this point we added one more supplement and we are going to keep on the protocol. We will monitor her very closely and we will consider retesting in a few months (probably after the surgery). Whatever is going on with her, I know that she is doing better than she has in a long time. What I don't know is... what is causing that. She was taken off a Arava, could be that. She is taking a ton of supplements, could be that. The high dose antibiotic, could be that. The Remicade dosage increase, could be that OR it could be a combination of all of the above. We are really not interested in testing a system that is working. Now, that said, Sadie has her Labs drawn on Monday during Remicade and IF her liver function test comes back high, we will re-evaluate are feelings on this.
In other news... Sadie's surgery has once again been rescheduled; this time due to the doc being out of the country. So, now she will have the surgery on November 13th. This really isn't that big of a deal, but you would be amazed at the circle of phone calls this creates... from the surgeons office, to the rhuemy office, to the Remicade scheduler, to the teachers and staff. It seems like yesterday the phone was attached to me. Sadie will be seeing a Physical Medicine doctor next week; this doctor can help get the ankle ready for surgery; they have several things they do to help in the cell rejuvenation process to help healing easier.
She starts her weekly pool therapy the third week in the month and then we see Dr. W (rhuemy again). No break in appointments, but at least I feel like we are able to report at least a little more positive information lately.
God Bless,
Theresa
P.S. If you have signed up on this site you are automatically getting these updates. I have no way to disable this option, so I do apologize if you are getting too many things in your in box.
P.S.S. Check out the all new photos!
In other news... Sadie's surgery has once again been rescheduled; this time due to the doc being out of the country. So, now she will have the surgery on November 13th. This really isn't that big of a deal, but you would be amazed at the circle of phone calls this creates... from the surgeons office, to the rhuemy office, to the Remicade scheduler, to the teachers and staff. It seems like yesterday the phone was attached to me. Sadie will be seeing a Physical Medicine doctor next week; this doctor can help get the ankle ready for surgery; they have several things they do to help in the cell rejuvenation process to help healing easier.
She starts her weekly pool therapy the third week in the month and then we see Dr. W (rhuemy again). No break in appointments, but at least I feel like we are able to report at least a little more positive information lately.
God Bless,
Theresa
P.S. If you have signed up on this site you are automatically getting these updates. I have no way to disable this option, so I do apologize if you are getting too many things in your in box.
P.S.S. Check out the all new photos!
September 1, 2007
August 17-19th our family was able to attend KAT-FISH ("Kids & Teens' Families Investing Support & Hope") camp. This was our third year and the we all enjoyed ourselves very much. The kids had a great time playing games, making crafts, singing songs. We parents had a great time meeting others and be able share with each other the latest with our kids. For many of the new families it was their first time to talk to others who understand what they are going through. There were several speakers who are very informative and we even got some good tips on having a good laugh!
Sadie's surgery had been scheduled for September, but due to our trip and the fact that recovery may be more than we are prepared for; we have rescheduled this to November 1st. This will give Sadie the opportunity to enjoy her trip to Disneyland and have some wonderful memories locked away during recovery.
We have many appointments coming up, but all and all I feel that Sadie is doing really well. If the right ankle wasn't an issue, I think Sadie is doing amazing. She has no complaints about her neck, hips, knees and she seems to have increasing energy. I am hopeful; I am loving this time... she is loving this time and it helps that she can feel good to start off the school year.
We visit with Dr. N (Lymes) to discuss her latest labs this Thursday; I am looking forward to talking to her about all the positive progressions I feel she is making.
Sadie has Remicade on the 10th and will visit Dr. W (Rhuemy) on the 24th. In this she will start up therapy again and continue to swim.
Sadie has a great positive attitude and outlook about her health and I am feeling more confident in the treatment plan than I have in the past. Thank you for your kind words, encouragement, prayers and support. Our family often is lifted up by the encouragement of our family and friends.
Keep posted for updates regarding Jingle Bell 2007, I hope you will consider joining our team for this fun event that helps support the Arthritis Foundations goal to finding better treatments and ultimately a cure all types of arthritis.
Sadie's surgery had been scheduled for September, but due to our trip and the fact that recovery may be more than we are prepared for; we have rescheduled this to November 1st. This will give Sadie the opportunity to enjoy her trip to Disneyland and have some wonderful memories locked away during recovery.
We have many appointments coming up, but all and all I feel that Sadie is doing really well. If the right ankle wasn't an issue, I think Sadie is doing amazing. She has no complaints about her neck, hips, knees and she seems to have increasing energy. I am hopeful; I am loving this time... she is loving this time and it helps that she can feel good to start off the school year.
We visit with Dr. N (Lymes) to discuss her latest labs this Thursday; I am looking forward to talking to her about all the positive progressions I feel she is making.
Sadie has Remicade on the 10th and will visit Dr. W (Rhuemy) on the 24th. In this she will start up therapy again and continue to swim.
Sadie has a great positive attitude and outlook about her health and I am feeling more confident in the treatment plan than I have in the past. Thank you for your kind words, encouragement, prayers and support. Our family often is lifted up by the encouragement of our family and friends.
Keep posted for updates regarding Jingle Bell 2007, I hope you will consider joining our team for this fun event that helps support the Arthritis Foundations goal to finding better treatments and ultimately a cure all types of arthritis.
July 2, 2007
Last Thursday we went and met with the Lymes doctor again. I found myself having a million questions and starting to become skeptical of it all. I really needed an opportunity to get all of these questions answered to help me feel more confident in a treatment plan. Her doctor was amazingly patient trying to help me understand and giving me very clear answers. Some of my questions ranged from: if we can’t get ride of the arthritis, then why are we treating the Lymes and if we didn’t treat the Lymes what would that look like for her. We discussed effects of long term antibiotics and the combination of medications she is currently on. We discussed why she didn’t have any herxing. We talked about other symptoms of Lymes that we can clearly see in Sadie and how treatment will help those. We discussed the test results and if she could have positive bands, but not really carry Lymes. All of this and much more was answered and I feel very confident in what she told me. She would like her to re-do the blood work and add one more test to confirm. We found out just this weekend that our insurance is only covering this at 50% and that is causing us a little tension as all of this is adding up really quickly. We are seeing what (if anything) we can do to get them covered as an in-network provider which would change this. Dr. N (Lyme doc) did give Sadie some more supplements for liver function, which helps me ease my mind a little, but would like to retest her liver function soon as the last testing it was high. I am waiting for a call from her Rheumatologist as I have requested that I have a meeting with her to discuss all this. I will probably do the same with her pediatrician to make sure that we have as many eyes watching all of this as possible.
Sadie also had an MRI of her right ankle on Thursday morning. The actual MRI takes about 30-40 minutes; she actually started to fall asleep during the first half and then they came in to inject the dye; this woke her up and then she was in obvious discomfort. I could not hear what she was saying, nor could she look at me to communicate (she has head phones on and I have ear plugs in because the machine is very loud). At the point she realized there was nothing I could do but run her shoulder, big, heavy tear drops came down her face and all I could do was wipe them away for her. When it was over she said her ankle was hurting a lot from having to keep it in the same position.
This weekend we had a nice time, Sadie was able to ride her bike for about and hour, but by the evening she needed some pain medication to help her get to sleep (too much pain).
I called today to see if we could get her into the surgeon sooner, but at this point we can’t. Dr. W (Children’s) may have some other way of getting her in sooner which I will discuss with her and get a copy of the MRI results too.
This has you updated to now. Next on the calendar for medical stuff are the labs for the Lymes (which will probably be next week) and Remicade on the 19th. I am hoping to talk to Dr. W within the next few days and this may prompt at least a liver function test and hopefully some further answers on the path of treatment for everything.
Sadie also had an MRI of her right ankle on Thursday morning. The actual MRI takes about 30-40 minutes; she actually started to fall asleep during the first half and then they came in to inject the dye; this woke her up and then she was in obvious discomfort. I could not hear what she was saying, nor could she look at me to communicate (she has head phones on and I have ear plugs in because the machine is very loud). At the point she realized there was nothing I could do but run her shoulder, big, heavy tear drops came down her face and all I could do was wipe them away for her. When it was over she said her ankle was hurting a lot from having to keep it in the same position.
This weekend we had a nice time, Sadie was able to ride her bike for about and hour, but by the evening she needed some pain medication to help her get to sleep (too much pain).
I called today to see if we could get her into the surgeon sooner, but at this point we can’t. Dr. W (Children’s) may have some other way of getting her in sooner which I will discuss with her and get a copy of the MRI results too.
This has you updated to now. Next on the calendar for medical stuff are the labs for the Lymes (which will probably be next week) and Remicade on the 19th. I am hoping to talk to Dr. W within the next few days and this may prompt at least a liver function test and hopefully some further answers on the path of treatment for everything.
June 19, 2007
I find it hard to write on here when in my own mind I have questions over Sadie’s treatment or I am not so sure myself of what is going on, the road we are on and where it is headed. It is hard to communicate cut and dry when it really isn’t that simple.
Sadie is still struggling with her right ankle. Her pain level has increased and her activity level is decreasing more each week. She is in a lot of pain and when she does make the choice to live like a kid, she pays for it in a pretty major way. She is getting old enough that she is very aware that her actions today will affect her physical ability tomorrow (and sometimes for the week ahead). What this has created is a child that is not motivated to be a child. She really is resistant to do much of anything active right now out of fear of the result. She has had some problems with her hips and back, but my belief is this is due to compensation and the leg difference. She has been having some problems (maybe once a week complaint) of pain in her neck. That pretty much sums up where she is right now physically.
We had been looking at some other possible treatments for Sadie; when you start looking around, realized the road you have taken isn’t leading you anywhere… I think you just have to start to wonder if the roads that you have glanced at before may be a better option. We looked into trying to find a doctor willing to talk to us about anti-biotic therapy. I have done quite a bit of research on this in the past, but found so many dead-ends… I convinced myself that it probably wasn’t a realistic avenue. However, when I started to open more to this door again, I found similar road blocks, but had a new connection I did not have in the past. I was able to ask a friend of mine if she would talk to her doctor about the possibility of consulting with me and Sadie (I had found several docs not interested in seeing a pediatric patient and several that wanted so much money you had to wonder why - $490.00 for a 30 minute consultation seems a little steep to me!). So, our friend spoke with her doctor and seem to have a plethora of knowledge regarding JRA, the drugs used to treat the disease and said she would be more then happy to speak with us. We made an appointment and the doctor asked some questions that lead her to believe a possibility that Sadie actually has Lymes disease which can mimic arthritic symptoms (has other ways of appearing, but this is a very common way to present itself). She really didn’t want to “talk-me-into” believing her; she wanted the blood work to talk for her. I agreed. I felt that the blood tests can’t lie and we would be able to make a better choice based on those facts once we had them. So, we went forward with the Lymes testing. It took about 4 weeks to receive the results and what we found was quite a bit of information. The first was that although the overall test showed negative; she has two positive bands and two indeterminate bands. The doctor explained that “: indeterminate” often (almost always) means positive, usually on the high end of normal and tittering on that line. In a secondary blood test it showed that Sadie has several antibodies for viral infections (I will try to make this as clear as possible). This is what I understand… so, please bear with me. We are all carriers of certain anti-bodies, for example… Mono. If you have the anti-body and you are exposed, you will more than likely get mono. If you do not have the anti-body and you are exposed, you will not get mono. So, Sadie has several that she is a carrier for which came as no surprise to me or to the doctor. The things she carriers, I carry also and therefore this is pretty typical. However, what was alarming is that there is a scale that rates the activity level of that “anti-body” and all of hers were well above “normal” range – some off the charts. So, what that tells us is that she is actively fighting things like Chronic Fatigue, Epstein Bar, etc.
What does this have to do with her arthritis?? Well, although it has been very clearly communicated to me that any damage done can not be repaired, there is hope that it could stop the progression of the disease. However, once the arthritis becomes “chronic” there is a less likely chance that the arthritis will go away. Now that said, I don’t fully get all that – I do know that there could be some further consequences for Sadie should she not be treated for Lymes, but after hearing all I just wrote out… I didn’t have the mind to think to ask what that looked like for her (looking back I wish I had).
So, at this point we have choices to make. Do we treat the “Lymes” and what do we do about the other viral issues. The doctor gives her recommendation which is to add more supplements to her and things called “pro-biotic” which help her stomach handle medications and helps boost her immune system. She also recommends we treat the Lymes; her suggestion is that we use high dose anti-biotic for six weeks; four weeks into treatment, have her Lymes blood work done again, come back and see her and review from there. That said she also advised that we continue on all treatment that we are currently on for Sadie’s JRA. She could not see her coming off these treatments for quite some time and there was a possibility from her comments and my research that she will never be able to dismiss the use of those medications. After careful consideration (and a heck of a lot of prayer); we decided to treat this. Although, I have seen with my own eyes the results of the blood work, heard all the explanation (which makes so much sense), I am having my doubts. The doctor did advise that Sadie would have something called “herxing” (there is a more clinical name, but herxing is easier). Herxing is when there is a die off of the Lyme and it basically binds to in your stomach and can make you very sick. This sounds horrible (and it is), but it is actually a good sign. The doctor said she thought this would happen to Sadie within 2 to 7 days. The day after her first treatment, she was sick, she had vomited and had some other stomach issues, but those all dissipated very quickly. She has had an upset stomach here and there, but it has not stopped her appetite or her attendance to school, swimming or other activities. I am watching this thinking that there has been no “die off” resulting and I am concerned that this is a sign that she really does not have Lymes.
This has taken you from May to current… let me give you the information from our appointment yesterday at Children’s.
Sadie had seen her physical therapist from Children’s last week and there was a lot to determine in only an hour, especially with her brace and lift on her shoe. That took up almost all of our time together so she has asked that we stop by on Monday to discuss her thoughts after she reviews Sadie’s chart further. She was going to discuss with Dr. Wallace the possibility of other aids for Sadie due to her pain level and the fact it is prohibiting our family from many activities (never, ever take a walk for granted!). So, first we stopped by to see her. She said she had not heard back from the doctor, but gave us some suggestions to talk to her about. She wants her to come back in soon to have her orthotics looked at and we will wait to re-do her brace until after summer (for many reasons including ones you will read shortly).
With Dr. Wallace; she did her normal ask questions to find out activity level and pain issues and without even looking at Sadie was concerned with what we were telling her about her ankle pain. She did the physical exam and feels the neck range of motion has decreased from our last visit. She did think her hips looked good and that her pain is probably as we thought caused from the leg length difference and from compensation. She felt the rest of her looked pretty good (excluding the ankle). She wanted Sadie to have x-rays of her neck to see what is going on in there, which we did yesterday (not sure when we will have results or what we will do with them). She talked about the right ankle and the fact that it does look very swollen and appears to have active disease, but she is very concerned that the structure of the joint has changed in appearance a lot over a short period of time. She wants Sadie to have another MRI (which is schedule next week) and then would like her to see the surgeon again. She feels that waiting much longer to do the surgery is not the right choice for her right now. To get Sadie mobile again she would like the use of a wheelchair for long days (such as zoo trips, walks, etc… none of which we are able to do right now).
Another big thing is that she has taken her off her Arava; she feels that her lethargic, low energy, moopiness (is that a word) could be related. She also feels that the loss of hair (yes, she is loosing tons of hair) is due to the Arava too. That medication stays in your system for about eight weeks. She gave us the option to schedule a “flush”, but we are opting out of that because it is not a procedure you would want to undergo unless it was life threatening (IMO). Dr. Wallace has also suggested that we do a long term steroid (prednisone); low does, just to help her with pain and swelling. I have opted not to do this right now, but she put it in her file for my consideration so that a prescription could be given if needed. We are adjusting her Remicade dosage to reflect her current weight as this hasn’t been done for a while and she is 10lbs heavier then the last time we did that.
Obviously her and I discussed the Lymes stuff and she had her own things to add to my thought process. She was very kind about everything, very loving and patient, but did want to give me her gentle feed-back to think about. She does have some concerns regarding the high dose, long term anti-biotic and what that may do. At this point, I am not feeling like sharing those concerns here, I will at a later time, but I am doing some research and will be looking further into all this to make a choice soon on what to do with all the information given to me.
At this point Sadie has Remicade Thursday, 21st. Her last day as a third grader is Monday the 25th. She has her MRI on the 28th. We were unable to get into the surgeon until the 6th of August, but will be on their cancellation list. We are waiting for calls back from PT and we have two appointments regarding the Lymes to get on the calendar the first week in July.
Sorry the update is so long. We continue to ask for your prayers. We appreciate them so much. I thank each of you who care for Sadie.
Sadie is still struggling with her right ankle. Her pain level has increased and her activity level is decreasing more each week. She is in a lot of pain and when she does make the choice to live like a kid, she pays for it in a pretty major way. She is getting old enough that she is very aware that her actions today will affect her physical ability tomorrow (and sometimes for the week ahead). What this has created is a child that is not motivated to be a child. She really is resistant to do much of anything active right now out of fear of the result. She has had some problems with her hips and back, but my belief is this is due to compensation and the leg difference. She has been having some problems (maybe once a week complaint) of pain in her neck. That pretty much sums up where she is right now physically.
We had been looking at some other possible treatments for Sadie; when you start looking around, realized the road you have taken isn’t leading you anywhere… I think you just have to start to wonder if the roads that you have glanced at before may be a better option. We looked into trying to find a doctor willing to talk to us about anti-biotic therapy. I have done quite a bit of research on this in the past, but found so many dead-ends… I convinced myself that it probably wasn’t a realistic avenue. However, when I started to open more to this door again, I found similar road blocks, but had a new connection I did not have in the past. I was able to ask a friend of mine if she would talk to her doctor about the possibility of consulting with me and Sadie (I had found several docs not interested in seeing a pediatric patient and several that wanted so much money you had to wonder why - $490.00 for a 30 minute consultation seems a little steep to me!). So, our friend spoke with her doctor and seem to have a plethora of knowledge regarding JRA, the drugs used to treat the disease and said she would be more then happy to speak with us. We made an appointment and the doctor asked some questions that lead her to believe a possibility that Sadie actually has Lymes disease which can mimic arthritic symptoms (has other ways of appearing, but this is a very common way to present itself). She really didn’t want to “talk-me-into” believing her; she wanted the blood work to talk for her. I agreed. I felt that the blood tests can’t lie and we would be able to make a better choice based on those facts once we had them. So, we went forward with the Lymes testing. It took about 4 weeks to receive the results and what we found was quite a bit of information. The first was that although the overall test showed negative; she has two positive bands and two indeterminate bands. The doctor explained that “: indeterminate” often (almost always) means positive, usually on the high end of normal and tittering on that line. In a secondary blood test it showed that Sadie has several antibodies for viral infections (I will try to make this as clear as possible). This is what I understand… so, please bear with me. We are all carriers of certain anti-bodies, for example… Mono. If you have the anti-body and you are exposed, you will more than likely get mono. If you do not have the anti-body and you are exposed, you will not get mono. So, Sadie has several that she is a carrier for which came as no surprise to me or to the doctor. The things she carriers, I carry also and therefore this is pretty typical. However, what was alarming is that there is a scale that rates the activity level of that “anti-body” and all of hers were well above “normal” range – some off the charts. So, what that tells us is that she is actively fighting things like Chronic Fatigue, Epstein Bar, etc.
What does this have to do with her arthritis?? Well, although it has been very clearly communicated to me that any damage done can not be repaired, there is hope that it could stop the progression of the disease. However, once the arthritis becomes “chronic” there is a less likely chance that the arthritis will go away. Now that said, I don’t fully get all that – I do know that there could be some further consequences for Sadie should she not be treated for Lymes, but after hearing all I just wrote out… I didn’t have the mind to think to ask what that looked like for her (looking back I wish I had).
So, at this point we have choices to make. Do we treat the “Lymes” and what do we do about the other viral issues. The doctor gives her recommendation which is to add more supplements to her and things called “pro-biotic” which help her stomach handle medications and helps boost her immune system. She also recommends we treat the Lymes; her suggestion is that we use high dose anti-biotic for six weeks; four weeks into treatment, have her Lymes blood work done again, come back and see her and review from there. That said she also advised that we continue on all treatment that we are currently on for Sadie’s JRA. She could not see her coming off these treatments for quite some time and there was a possibility from her comments and my research that she will never be able to dismiss the use of those medications. After careful consideration (and a heck of a lot of prayer); we decided to treat this. Although, I have seen with my own eyes the results of the blood work, heard all the explanation (which makes so much sense), I am having my doubts. The doctor did advise that Sadie would have something called “herxing” (there is a more clinical name, but herxing is easier). Herxing is when there is a die off of the Lyme and it basically binds to in your stomach and can make you very sick. This sounds horrible (and it is), but it is actually a good sign. The doctor said she thought this would happen to Sadie within 2 to 7 days. The day after her first treatment, she was sick, she had vomited and had some other stomach issues, but those all dissipated very quickly. She has had an upset stomach here and there, but it has not stopped her appetite or her attendance to school, swimming or other activities. I am watching this thinking that there has been no “die off” resulting and I am concerned that this is a sign that she really does not have Lymes.
This has taken you from May to current… let me give you the information from our appointment yesterday at Children’s.
Sadie had seen her physical therapist from Children’s last week and there was a lot to determine in only an hour, especially with her brace and lift on her shoe. That took up almost all of our time together so she has asked that we stop by on Monday to discuss her thoughts after she reviews Sadie’s chart further. She was going to discuss with Dr. Wallace the possibility of other aids for Sadie due to her pain level and the fact it is prohibiting our family from many activities (never, ever take a walk for granted!). So, first we stopped by to see her. She said she had not heard back from the doctor, but gave us some suggestions to talk to her about. She wants her to come back in soon to have her orthotics looked at and we will wait to re-do her brace until after summer (for many reasons including ones you will read shortly).
With Dr. Wallace; she did her normal ask questions to find out activity level and pain issues and without even looking at Sadie was concerned with what we were telling her about her ankle pain. She did the physical exam and feels the neck range of motion has decreased from our last visit. She did think her hips looked good and that her pain is probably as we thought caused from the leg length difference and from compensation. She felt the rest of her looked pretty good (excluding the ankle). She wanted Sadie to have x-rays of her neck to see what is going on in there, which we did yesterday (not sure when we will have results or what we will do with them). She talked about the right ankle and the fact that it does look very swollen and appears to have active disease, but she is very concerned that the structure of the joint has changed in appearance a lot over a short period of time. She wants Sadie to have another MRI (which is schedule next week) and then would like her to see the surgeon again. She feels that waiting much longer to do the surgery is not the right choice for her right now. To get Sadie mobile again she would like the use of a wheelchair for long days (such as zoo trips, walks, etc… none of which we are able to do right now).
Another big thing is that she has taken her off her Arava; she feels that her lethargic, low energy, moopiness (is that a word) could be related. She also feels that the loss of hair (yes, she is loosing tons of hair) is due to the Arava too. That medication stays in your system for about eight weeks. She gave us the option to schedule a “flush”, but we are opting out of that because it is not a procedure you would want to undergo unless it was life threatening (IMO). Dr. Wallace has also suggested that we do a long term steroid (prednisone); low does, just to help her with pain and swelling. I have opted not to do this right now, but she put it in her file for my consideration so that a prescription could be given if needed. We are adjusting her Remicade dosage to reflect her current weight as this hasn’t been done for a while and she is 10lbs heavier then the last time we did that.
Obviously her and I discussed the Lymes stuff and she had her own things to add to my thought process. She was very kind about everything, very loving and patient, but did want to give me her gentle feed-back to think about. She does have some concerns regarding the high dose, long term anti-biotic and what that may do. At this point, I am not feeling like sharing those concerns here, I will at a later time, but I am doing some research and will be looking further into all this to make a choice soon on what to do with all the information given to me.
At this point Sadie has Remicade Thursday, 21st. Her last day as a third grader is Monday the 25th. She has her MRI on the 28th. We were unable to get into the surgeon until the 6th of August, but will be on their cancellation list. We are waiting for calls back from PT and we have two appointments regarding the Lymes to get on the calendar the first week in July.
Sorry the update is so long. We continue to ask for your prayers. We appreciate them so much. I thank each of you who care for Sadie.
May 9, 2007
I know it has been a long time since our last update. We (the family) have been very, very busy. It is hard to find anytime to sit down and update more or less sort out thoughts. We did a sort story for a local news station here which you can see at:
http://www.king5.com/health/children/stories//NW_050507HEKjuvarthritisSW.3d481da0.html
I am not sure how long that link will be good for, but hopefully a little while.
Sadie seems to be quite swollen and in a lot of pain once again. Mostly the ankle. Dr. Wallace has put Sadie back to every 4 weeks for Remicade and started oral steriods again. We are on week three of that right now and it has helped, but not as much as it has in the past. It is hard for me to know what is arthritis and what is damage in that joint although the swelling makes me think it is the arthritis. Her hips and neck have been bothering her on and off too. On the other hand she has not slowed down at all. She is still swimming twice a week and doing pool therapy and still continuing to take in each and every sunny day like a kid, playing!
Please just keep her in your prayers, we appreciate everyone who prayers for her physical and mental well being, but I also ask that you pray for her spiritual being too as it can be hard to really feel strong when you are fighting pain.
I hope to update sooner than later, again, thank you for the notes and thoughts!
http://www.king5.com/health/children/stories//NW_050507HEKjuvarthritisSW.3d481da0.html
I am not sure how long that link will be good for, but hopefully a little while.
Sadie seems to be quite swollen and in a lot of pain once again. Mostly the ankle. Dr. Wallace has put Sadie back to every 4 weeks for Remicade and started oral steriods again. We are on week three of that right now and it has helped, but not as much as it has in the past. It is hard for me to know what is arthritis and what is damage in that joint although the swelling makes me think it is the arthritis. Her hips and neck have been bothering her on and off too. On the other hand she has not slowed down at all. She is still swimming twice a week and doing pool therapy and still continuing to take in each and every sunny day like a kid, playing!
Please just keep her in your prayers, we appreciate everyone who prayers for her physical and mental well being, but I also ask that you pray for her spiritual being too as it can be hard to really feel strong when you are fighting pain.
I hope to update sooner than later, again, thank you for the notes and thoughts!
March 14, 2007
Sorry for the long delay in updating the site. Sadie had her appointment with Dr. Wallace on the 11th and for the first time since March 05' we heard: "NO INFLAMMATION"!!!!!!!!!! If that doesn't make you want to throw a party and celebrate, nothing will. We are so happy to hear that news!!
Sadie will now be able to push out her Remicade infusions a little bit at a time. She will go every five weeks for a few sessions and then progress to every six weeks.
Sadie is doing very good - our entire house was hit with a cold that seemed to linger for quite some time, but Sadie actually pulled through pretty quickly which means her immune system is fighting (she usually is sick the hardest and longest). Sadie's right ankle has been very sore the last few weeks. She has been limiting her activity (she does this on her own when needed), but still participating in swimming three days a week (two times a week for lessons, once a week for therapy). She has been going to bed with an ice pack pretty much every night. I am pretty confident that this is a result of the damage in that joint, but never 100% sure and honestly not always sure about how to help her with the pain.
At this point we have very, very few appointments on the calendar which is just how we like it.
Thank you for the continued prayers for Sadie's mental and physical health. We feel the prayers and appreciate the support and love.
Sadie will now be able to push out her Remicade infusions a little bit at a time. She will go every five weeks for a few sessions and then progress to every six weeks.
Sadie is doing very good - our entire house was hit with a cold that seemed to linger for quite some time, but Sadie actually pulled through pretty quickly which means her immune system is fighting (she usually is sick the hardest and longest). Sadie's right ankle has been very sore the last few weeks. She has been limiting her activity (she does this on her own when needed), but still participating in swimming three days a week (two times a week for lessons, once a week for therapy). She has been going to bed with an ice pack pretty much every night. I am pretty confident that this is a result of the damage in that joint, but never 100% sure and honestly not always sure about how to help her with the pain.
At this point we have very, very few appointments on the calendar which is just how we like it.
Thank you for the continued prayers for Sadie's mental and physical health. We feel the prayers and appreciate the support and love.
February 2, 2007
Thank you all so much for the prayers about Sadie; the appointment today went better then I could have ever imagined, it is an answer to prayer. The orthopedic surgeon was probably one of the most straight forward, clear cut doctors I have ever met and I appreciated him so much. There will be no surgery for Sadie in the near future!!! The two options available for surgery are not options because of her age and because it would increase her pain more than decrease her pain at this point. Both options would slow down her growth and limit her mobility for the remainder of her life and at this point those are not things she needs to deal with. He did say that he does expect that at some point in the coming years we would need to move forward with surgery, but he felt not until this gets much worse for her. He was very honest and very clear with both Sadie and I that her day-to-day pain is just something she will need to deal with for now and that quite possibly in the years to come she will have further pain issues at which point moving forward with fusing or replacing the joint will become more of a reality. He was very happy and surprised to see her range of motion as good as it looked; saying that with the damage the MRI and the xrays show he would not expect such mobility. He also said that he does not see any active swelling - this is GREAT news! The reason we started this path in the first place is because her current rhematologist was very unclear at what she was dealing with regarding her ankle; she could not decide if she was looking at active arthritis or damage done. The answer was given today - damage done! As strange as it sounds for this to be good news, it is... it answers a lot of questions and gives us some ground to work from.
All and all I feel today's appointment was very positive; we at least know where we are and where we are head and on our map, surgery isn't in the immediate road ahead - AMEN!!!
Next appointment is with Dr. Wallace (her rhematologist) on February 11th!
Much Graditude and Love
All and all I feel today's appointment was very positive; we at least know where we are and where we are head and on our map, surgery isn't in the immediate road ahead - AMEN!!!
Next appointment is with Dr. Wallace (her rhematologist) on February 11th!
Much Graditude and Love
January 19, 2007
It has been a while since I have posted anything, but for good reason. We really took in the spirit of the season and enjoyed our time with family and friends. Quite honestly Sadie has been in a really stable position. When I say stable; she ranks pain from 1 being nothing to 5 being the worst and she is pretty much "stable" at a three daily. I feel like we have just come to accept that as what it is, until today....
We knew that when she had the MRI it showed a cyst in her bone and we knew we would see and orthopedic surgeon to talk about what his ideas were on not only the cyst but the entire MRI. Today was that day. We talked about the cyst; we even got prepared to schedule a surgery date to remove the cyst (knowing that we had six weeks to really sit on that choice). He said it was a 50/50 shot that it would help with her day to day pain and his reasoning was that she shows a lot of active swelling. To make a long story short; the ortho doc decided at the last minute that it would be a good idea to do a new set of x rays as it has been about 18 months since the last ones. Well, the x rays showed some pretty bad news... the talon joint which is the joint that is at a 45 to 60 degree angle connecting from your leg to your foot (best way I can describe it on here) on her right side is at a 0 angle... it appears to have collapsed.
The kicker is... we have no further information. We are onto another specialist hopefully very soon. This obviously could account for her daily pain level; it could also account for some of the swelling. The internet is both a blessing and a curse in my opinion because I have spent some time reading tonight and nothing that I have found has been very fun to read. It has actually been very scary, but we are going to just wait until we hear what we hear from the next doctor.
Please pray... we could be looking at all kinds of possible situations... the unknown is a bit scary. We are pretty grateful that we have God on our side.
More soon, I am sure.
We knew that when she had the MRI it showed a cyst in her bone and we knew we would see and orthopedic surgeon to talk about what his ideas were on not only the cyst but the entire MRI. Today was that day. We talked about the cyst; we even got prepared to schedule a surgery date to remove the cyst (knowing that we had six weeks to really sit on that choice). He said it was a 50/50 shot that it would help with her day to day pain and his reasoning was that she shows a lot of active swelling. To make a long story short; the ortho doc decided at the last minute that it would be a good idea to do a new set of x rays as it has been about 18 months since the last ones. Well, the x rays showed some pretty bad news... the talon joint which is the joint that is at a 45 to 60 degree angle connecting from your leg to your foot (best way I can describe it on here) on her right side is at a 0 angle... it appears to have collapsed.
The kicker is... we have no further information. We are onto another specialist hopefully very soon. This obviously could account for her daily pain level; it could also account for some of the swelling. The internet is both a blessing and a curse in my opinion because I have spent some time reading tonight and nothing that I have found has been very fun to read. It has actually been very scary, but we are going to just wait until we hear what we hear from the next doctor.
Please pray... we could be looking at all kinds of possible situations... the unknown is a bit scary. We are pretty grateful that we have God on our side.
More soon, I am sure.
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