My name is Peg and my son Aaron has his 2nd bout of ITP after 5 years of remission. Last time around he was never really under 20K (for most part and 10K was about the lowest) and he responded to 1st line treatments until the last year when we started homeopath and he went into remission. Saying this, I can't say what we did that did it and whether it was the treatments or a multitude of different things we did. Earlier this year, he started going down slowly and by summer he was 7-10K and I had him working at summer camp (7 weeks 6 days/24) and he was up at 5:30a and bed at Midnight. Low he was tired, looking at his hours and work, it is nothing to the last few months. We opted to test the treatments to see what worked and since that time, his normal seems to be 1K and occasionally jump to 4K. He got severe headaches from all the treatments. We had one end of August (IVIG), double dose of IVIG in late September, prednisone mid-October and WinRho early November and Rituxan through December. No results. He finds him extremely tired now, which I accept as the norm. He has missed more than 60% of school this year (11th grade) and when he is in school he visits the nurse for an hour or two trying to get rid of headaches. Most of these I have associated with treatments. He then got a headache that lasted a few weeks and Tylenol just baring touched it. Sought out help with another medicine. We got a CAT Scan (just to be sure) and Floricet (Tylenol, Codeine and Caffeine). It did dull the headache so he wasn't miserable but then he got stomach issues so I had him stop about 3 days ago. But, he is still sick and now his headache is back. I know low platelets affect energy. He goes to school and then goes right to bed (I accept that), unfortunately, then the next day he misses school because then he's got a headache. He has spent alot of time and sent home with nausea as well. For those of you that have lived with constant extremely counts like Aaron, what experiences do you have. I have accepted energy but the constant headaches and nausea is a problem and keeping him home from school and not feeling well at home to even do the school work at home. School is working very closely with me and he has only been to school 2 days in the 2 weeks. So, homebound with tutor or shortened school day are on the table. Aaron does not want to be home, he wants to go to school, so 2nd option is more palatable. Unfortunately, it's all doesn't matter if we can't get headache/nausea under control. Ped is going to get an MRI, something in the CAT Scan that is probably nothing but have to check it out thoroughly and got a referral to a neurologist. I was ready to deal with "ITP", been there, done that, but this is crazy. I know that ITP affects adolescents and adults much more and I would like to hear your experiences if they mimic Aaron and how you handled it. Thank you. Peg
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