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Back after 5 years of remission

  • pegstirling
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  • My son, Aaron, dx at age 5 (5/2001), though he was in remission for 5 years after a vaccine, came out of remission and lives at 3k. Did 5 years of treatment with but then stopped working, back at 3k. He is basically non responsive to all regular treatmen
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13 years 8 months ago #24623 by pegstirling
Back after 5 years of remission was created by pegstirling
My son Aaron was dx at age 5. We treated for the first 6 months and then I went the watch-and-wait route. We did naturopath, diets, and homeopathy. We can a great response (370K) from an elimination/rotation diet, but one slip sent him crashing (19K) first time. Back up to 225K and that night Daddy let him eat something not approved and he crashed down to under 10k and we couldn't get him to recover. We opted to do the Child Rituxan Study in Boston. Though he didn't get a response, we had to not treat during that year and speaking to the hemo there, gave me a renewed assurance of what I believed. He slowly went up over the next year to 30K and hung there for a couple of years. When he turned 11, his counts jumped up to 90K and continued to go up and he had been in remission for 5 years. This last January, he had nose surgery and his count was 130K (good but last counts had been in the 200K's). In March, it came back 69K (Happy 16th) and has continued to drop slowly. Last count 13K. Still waiting and hoping he will stop the decline and level off (and, of course, go up). I went back to work 5 years ago and have not been on this site since then. I do not want to treat. His body is handling the low counts very well, he is not tired and no bleeding (his nose surgery - deviated septum - has helped with the nose bleeds). Don't want to start the roller coaster of highs and lows because I believe it is harder on the body and makes him more symptomatic with the drops. I think this is a great site, but I am not thrilled to be back here. I am glad that I got the nose surgery when I did and Aaron was able to attend the Boy Scout World Jamboree in Sweden last summer (without parent worry about ITP). Now, for the first time Aaron has 3 cavities that need filling and they want to pull his wisdom teeth. Yikes, now. What timing! Just going to try to be positive. So, how many of you remember us and are still here?

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