Son with ITP, looking for advice

My 11 year old son came down with ITP 2 1/2 years ago after the onset of a virus. He has gone through IVIG, Steroid treatment, Win RO, Dapsone (which kept him stable just under 100, 000 for almost a year) recently did 4 rounds of Rituxin, and now we are back to Win RO. After today's treatment I'm just at a breaking point. I am not ready to remove his spleen and the 2 drugs I have heard about eltrombopag and Nplate make me nervous and my dr isn't fond of putting an 11 yr old on them. I did see a homeopathic dr last year who ran an independent urinalysis and told me she would try to treat him with 4 different enzymes to see if his platelets came up. I saw in one discussion on here another homeopathic pill that someone had used ...I was curious about that. Well I just thought I'd reach out to others in my situation. This blood disorder really has little known to help, especially for kids because most seem to outgrow it as fast as they got it. I always try to say to myself, it could be worse but regardless of the disease when you see your child so greatly effected by something there is little control over you feel it is far worse than he/she deserves.

I guess I really didn't ask any specifics so here are a few questions:
My husband wants to try the not treatment approach to see what happens...I fear some type of spontaneous bleed. Anyone let them sit and how low did they get? My son's lowest was last Saturday at 4,000.
Anyone have good/bad with nplate or eltromopag?
Anyone opt for or against splenectomy and what where the results?

hi
my daughter Brianna has had ivig and was put on a high dose of prednisone which she had all the side effects you can have. we now do the wait and see approach. unless she is bleeding we usually don't treat her counts as of Friday morning were 4. she has been hanging around here for about 3 weeks now. we just try to keep her safe she does a lot of swimming and if she rides her bike she wears a helmet. she is 11 and she was dx in 2010 thanksgiving its a roller coaster you just got to hang on for the ride
Dawn

Hi, My (nearly) 11 year old daughter responds pretty well to prednisolone. At present we are tapering and are sitting on alternate days of 7.5mg and 5mg - with counts pretty stable at 130. Once we get lower than that, she drops substantially, generally below 20. We are still pretty new at all of this (only dx 6 months ago).

We've had a round of IVIG - which pulled her levels up super quick, but then dropped after 1 week. We live in Melb, Australia, and a splenectomy is not the preferred course of treatment. My daughter also has another rare disease that means surgery would only be for an emergency.

My husband and I are also at 'pulling out our hair' stage. Steph is an extremely active girl, and we are more worried about her low counts and having an accident (tackling in footy).

What are your son's symptoms? ie what do you see when his counts are at 4?

Jackie

Jackie,
Thanks for your response. I am very optimistic for your daughter as she has had it for only 6 months. It seems odd but as my son has dropped lower and lower over the 2.5 years it seems his platelets "work" differently. When he used to be 25,000 he'd get huge bruises and the petechia, now his bruises aren't as big at much lower numbers. My recent thought after his last Win Ro is to have them do low dose steroids. Im not sure of how long kids can be on low doses without risk of future problems as a result of the steroids.
I think part of my biggest worry for my son Jeremy is emotionally this is really taking a toll on him. He plays sports, hunts, and is just a BOY who wants to be active. He's missed out on trips to Disney with friends, hunting season 2x's and now we are at the start of football season. He wants to be on he team and is hoping to play. How do you say NO.
I recently was in contact with a homeopathic dr who has had success with ITP but I don't know I can take the financial commitment not knowing it will work.....I also had a nutritionist willing to treat him with 4 different enzymes. All of it is very confusing, especially when you've done traditional medicine your whole life.
Jenny