Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Hi ya'll, My son has been getting IVIG for a while now. He has CVID, Chronic Neutropenia, Kearns-Sayre Syndrome, he has a feeding tube and a mediport...he will be getting a Pacemaker in 3 weeks. He needs a wheelchair about 50% of the time. He has chronic pain form a spinal cord syrinx...and he has Ophthalmoplegia, some paralysis of his eye muscles, part of the mitochondrial disorder...it is progressive and is affecting his vision and this is so upsetting, his books are like his best friends. e also has Asperger's syndrome. If routine is thrown off, well, things don't go well! Those of you with kids on the spectrum totally get it! For example, two weeks ago when going to the clinic to get his IVIG, someone else was in " his " recliner.and the internet wasn't working..he freaked out and melted down..almost couldn't do the IVIG! well, since e is getting a Pacemaker in a couple of weeks, the electrophysiologist cardiologist said he will be at increased risk of infection to the heart muscle every time the port is accessed (every 14 days now with the IVIG) Using the Subq will reduce some of this risk, so we have decided that's what we need to do. e has a history of sepsis and also he has low white blood cell counts and neutropenia, ...so this is a no-brainer to switch, in order to reduce the risks. However...with his autism spectrum challenges and his routines, and he is very difficult to deal with in these things a lot....I am so worried about the Change! Plus he is real skinny and I am concerned about this with the subq. (He receives Granulocyte-Colony-Stimulating Factor injections every Mon-Wed-Fri and has been for years now, and we still need to chase him sometimes!) I so much need your help!!!! I need ideas, guidance, advice....help!! If anybody deals with an ASD kid and Subq or if you just can give me whatever ideas might help....please I would very much appreciate these!!! Please write here or if you can, call me....504 400-1994 Thank ya'll so very much....Sue Quote Link to comment Share on other sites More sharing options...
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