This last few weeks has presented all kinds of challenges for our family. We have been spending most of our time focused on making decisions regarding Sadie’s pending medication changes. Going over every detail, talking to everyone we can to get feedback and help. We have gone from thinking of leaving the dosage where it is and just trying the “pulse” of steroid, to going forward with all the proposed changes, to seeing more naturopathic doctors, to pulling her off all medications to give her a break and then back to going forward with the dosage changes.
We have received some feedback from some other parents with kids with Sadie’s condition in regards to the dosage and the success they have had. This is promising to us. Our option to pull her off all her medication is one that is also very frightening as we don’t know if her current medication is actually helping and if we pull her off what to expect with not only her pain level, but additional complications in respects to other joints being involved. We have not completely shut the door to seeing another kind of naturopathic doctor, however this week (or last few weeks) have been very draining emotionally and I personally am going to hold off on this for a few weeks.
An update with the reaction she was having and her finger nails. So far, from my last post there are no additional nails added; three fingers and one toe. This to us seems like maybe the end of it as those four all were within days of each-other. Bill and I were talking more about this reaction the other day (as this has been a major factor in our upcoming choice in regards to the medications). There is one key thing that happened last time that was different than the past infusions. This last infusion we gave Sadie her methotrexate after the infusion was over by IV. Usually we give her the methotrexate by injection at home hours later. We are now questioning if this could have been the culprit for putting her body in “shock”. Obviously we will not make the choice to give the methotrexate w/ the IV again.
As far as Sadie’s first few days of school… she has been having good days and is glad to be back. We are seeing a very “typical” reaction to school, she holds it all together all day and when she gets home a little thing can trigger a larger negative response. The first day of school she had one little over-reaction, but quickly turned it around. The second day, there were several and she spent a little time in tears, just tired and over done. This is a touchy subject for me as Sadie is in need of some good down time after school is over and the logistics of that are not fully working out. On other note… we did know to expect this and it changes as the year goes on. Once she feels she can trust the people around her (new classmates, teachers, ect) she will start to give more signals that she is in pain, or tired at school too. As the year goes on she lets down her guard more and more as this is a hard thing to keep up, acting like everything is fine, when it is not. Imagine as an adult what that feels like; then take yourself back to those exciting first few weeks of school. It is a lot of pressure for one little girl!
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