Humira sucks. It is the devil in our house. Any medication that makes my child angry is not ok with me. Humira has been THE biologic that has helped Jackson but the time has come for us to move onto something else......something less painful. It's been about 2 and 1/2 years and while we are thankful it is still keeping him pretty much flare free, we agreed that the battle we face each and every week is not something we want to continue. Jackson flat out refuses to get the shot. Now I know that some people will say things like "You're the parent, MAKE him get it" or "Why are you letting him dictate whether or not he gets it?". I have answers to those......he is 10, old enough to make the decision if he wants to get the shot or not. He has been told many times that without the Humira, he has a chance to flare. He still refuses. In fact it's been well over a month since his last dose of Humira and he has been doing rather well. He is really good about letting us know when he hurts and he has been taking his mobic as needed and it seems to be doing the job.
Having said all of that, I have been in contact with his rheumy about our concerns and it was agreed that until his appointment next month, we will hold off on Humira. The idea is to see how his joints fair without any sort of biologic. Then one of two things will happen, if he is not showing any signs of his arthritis creeping in we will stay the course of mobic as needed and only that. However, if at his appointment it is discovered that his joints are acting up we will then talk about Remicade, another biologic that is given through IV only. That would likely mean monthly trips to Gainesville for infusions. Surprisingly Jackson would rather do this than get his weekly 40mg of Humira.
Moving onto the IEP. Jackson had a 504 plan in place and the school and his teachers were following it very well. I was noticing some problems in the education department however and felt that maybe Jackson needed an IEP with all his 504 accommodations rolled in. Over the last few months they have been testing him to see where he stands academically. This morning we had the meeting where we learned the results of everything. It was determined that he does indeed need the IEP and it will be under the classification of other health impaired. ALL of his accommodations from his 504 have been rolled into this IEP and therefore his 504 plan is discontinued. I was VERY happy with how the meeting went and I am over joyed that everyone is so understanding. I was prepared for a fight, having heard the horror stories from friends. Currently there isn't a need for a fight but when he starts middle school in August, I will no doubt have a fight on my hands but I am prepared. :)
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