TOPIC:

Hello everyone, this is my first post so it's going to be a long one.

My daughter was diagnosed with itp one year ago. At the same time she was having very bad diarrhea. She was doing diarrhea anything up to 30 times a day. She dropped in weight very badly. Hospital started her on neocate milk. She was also diagnosed with ebv. It seems that she does not absorb much if anything from her oral food intake. She is ng tube fed as she does not take the neocate orally. She still has diarrhea but it is about 6-8 times a day.. For the itp she was treated with prednisone and mycophenolate moffetil(mmf). She has also had ivig. None of the medicines made any difference, apart from give my daughter distress and side effects. At the moment her platelets are 17k. Doctor is suggesting rituximab. But i am against it as somehow i think the itp is connected with my daughters diarrhea.

Is there anyone that has had these symptoms?

Thankyou.

I'm not a parent but I wanted to respond with this: my ITP appears to have been closely related to my chronic diarrhea, and when I cleared up the underlying issue with the diarrhea I also had a prolonged remission from ITP. To be upfront I also had rituxan which kicked off the remission. But I have another auto immune disorder, and my ITP was secondary to that and it seems the chronic inflammation of my intestines was causing the immune reaction that included ITP.
In my case the diarrhea was caused by fructose malabsorption.
Erica

My daughter is on wheat free, soya free, gluten free and dairy free diet. The only food she has is fish, meat, chicken, rice, some vegetables and some fruit puree.
Even if she has a bit too much oil in her food, it flares her up.
But i have noticed that once when i gave her apple juice, it flared her up.
I might try her without the fruit puree.

Thankyou for sharing your story.

I have started my daughter on the low fodmap diet. Also have emitted nightshades from her diet. I will update regarding her platelet count and digestive symptoms.

Thanks, I am interested to know if that helps. It was apple juice that finally tipped me off to the solution too. I felt it had to be related some things I was ingesting and the only one I knew for sure that set me off was apple juice. Googling that finally let me to fructose malabsorption and fodmaps. Onions are a huge culprit with fodmaps, as well as wheat - but not for the gluten. I can eat plain gluten.

I always try to tell my story because I think fodmaps diet could help a lot of people.
erica

My daughters platelet count from last tuesday is 10.
This was the day before i started the fodmaps diet and omitting nightshades also. Her next bloodtest is coming tuesday. Praying for double digits.

It could take a while to see results if a diet change is going to help. Let us know how it goes.

Hi, things have changed quite drastically. The immunologists just called. My daughters ebv levels are very high. They said there are 180,000 copies. They are saying rituximab will help her ebv viraemia. And she will have ivig for her b cells. Any advice is appreciated.

Thank you

Is there anyone who has ebv and itp?