After 5 years of remission, we are back.

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?

Hey, Peg -

Yes, I definitely remember you and Aaron! Sorry to see you back but nice to hear from you again! I think our boys were diagnosed around the same time - Brady is 15-1/2 now and was diagnoed in 2002, right after he turned 5. There are still a few people on here from those days but not too many kids still regularly dealing with it.

Brady is experiencing a remission of sorts, I guess. He hasn't been treated in two years and his count when we last checked in December was around 65k. We pretty much forget about ITP now and have him checked when we're heading off to do something that would be dangerous for Brady at low counts. It would be a gut punch to go backwards, even after only two years.

I hope that Aaron's counts go up again soon and you don't have to treat or anything. In the meantime, there's a lot of great information on this site now and some newer drugs that you may want to read about.

Hang in there - we're pulling for you and Aaron!

Oh, Peg! I am so sorry to see you back on here - I am actually crying! I just "chanced" to check on here tonight because the past few months, I have been seeing things on Braden that have made me a little fearful that his remission may be slipping as well. He has his annual physical coming up in a couple of weeks, and I plan on having his platelets checked then. I started scrolling through posts on here to see if anyone else had come out of remission. My prayers will be with Aaron and your family! Kathy

Peg - Yes I remember you! I am so sorry to see you back. I felt like I got punched in the gut when I read your post. Wesley has been maintaining normal/near normal counts for a little over 4 years now. He was diagnosed in 2002 and will turn 13 in July. He's been doing great. I'd like to believe we are done, but the fear never really goes aways. I totally understand how you feel about the meds and hope that you will not need them. It's good that there are more treatment options now than there were 10 years ago, but still I hope you won't need them. I hope Aaron bounces back on his own and there is another remission.

Kathy - I hope Bradens physical goes well and his counts come back normal.

Beth - It's nice to hear that Brady is doing well.

Hi Guys. It is nice to see old friends but sad too. Thanks for all your well wishes. Aaron was 31k 2 weeks ago but went yesterday came back at 10k. I am going away for weekend with a bunch of women from gym to do Renegade Playground. A little nervous because my husband and younger son will be also out of town Sunday for a hike. Thank God he is 16 and I dont have to worry as much but you never stop worrying. Hemo wants me to call today and wants to treat. They do know zi dont want to treat so I will just call and tell them we will check him again next weekend. Both boys home with.upset tummys so..

Kathy- I hope you are wrong and Bradens counts are great.

Beth - Brady was dx a year after Aaron, both dx at age 5. Aaron right after his vaccinations. Wish his.counts were higher but remember how good it felt to be above treatments levels. I hope he is able to enjoy his teenage years. I sent Aaron to the Boy Scout World Jamboree in Sweden last summer. So glad I did. Tried to let Aaron live as much as possible because ITP is so unpredictable and we did San Diego last year. He.did Quebec in January with HS band. Hope we can get him better.before next trip. Does Brady do any sports? Aaron is a homebody. He missed out on making a good.friend during those.years when people were afraid to have him come over. Our hemo never wanted to release Aaron nor would he call it remission. Couldnt get.him to explain why.
Cathy - From your lips to ... I hope Wesley continues to do well. It is great to see some familiar faces on here. I will keep posting. Aaron is down to 10k but no bleeding symptoms so we will cross our fingers.

Hoping no issues occur when I am away. Aaron will be spending a quiet weekend at home.

Keep in touch. Thanks for your love and support. Keep those prayers coming and back at ya. Cathy - sending many for a great dr. appt.