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.