jayla rose newly diagnosed

Hi my name is jana the mother of my 6 year old daughter. She has been diagnosed with ITP and has been at a blood count of 4000.The doctors said its up to her father and i if we want to start treatment she has had the ITP for about 1 month now and treatment sounds nice but we are scared if it will work or not we are loking for a parent who has put their child through the treatment and can give us some insight on this matter if its worth doing or if we should wait it out.The doctors have mentioned doing a bone marrow then following that a steroid treatmentthat goes along with the whole bone marrow.Other thing has been mentioned as far as treatment but this is the most effective but its a 50/50 that it will bring and kepp her blood count level up.We really need some insight on our little girls treatment.Please if anyone can help us with our dilemma please feel free. It would mean a gret deal of happiness for a mother that feels so helpless for her daughter.

Sincerly jana rochel

Hi Jana,

It depends on whether or not your daughter has bleeding symptoms beyond bruising and petechiae - if so, I would personally treat.

My 13 year old son has had ITP for getting on three years now, with counts which are generally under 20. I just wanted to say that we haven't really treated during this time and despite him being a very active kid, and he has been fine. Not treating is a viable "treatment" plan for ITP. That being said, we are now looking to treat him, but this is being driven by the activities he wants to participate in rather than any real medical need.

Good luck with Jayla. Hopefully the problem will just disappear quickly and not continue to be a problem for her because thats what happens to most kids.

All the best, Ali

Thank you so much ali. We are going to the hospital tomarrow and i didnt know wether or not to tell them to start treatment but based on what you said it makes sense. Jayla did have one nose bleed but nothing serious. And i like how you are treating your son like you said based on the activities he wants to play that makes sense.I hope we can keep in touch you sound like you have much experience in this unfortunely.

Thank you sincerly jana, jayla

Hi, sorry to hear about your daughter. My daughter now six was first diagnosed when she was almost 4. her platelets were 5,000 and she had not one symptom. It was found by accident due to mommy gut instincts I thought a fever she had with no symptoms was strange and requested a cbc. Anyway, She had winrho adn had normal platelets for a year. She then after a year began to drop slowly adn had winrho again. The effects didnt last as long but her platelets stayed in the 50's unless she got sick. She has since in two years after the second drop in counts had ivig one time which worked very well and for a few months, and prednisone 3 times. Each time never longer than 3 weeks. I prefer the prednisone. You dont have to be admitted for it and other than hunger there arent any side effects in my daughter and she gets a super high dose. If you go with the winrho or ivig I would say to be super hydrated adn get her pretreated. Side effects during infusions can be nasty but the hydration and benadryl work wonders. With ivig my daughter got a fever that lasted about 2 days but she had a fever when starting it so I dont know. With winrho her urine was dark brown adn I freaked but later learned that it is actually expected since the winrho destroys some red blood cells. Hopefully you wont have to get to accustomed to these treatments and i is short lived for your little girl. Most kids it is gone in a few months. I chose to treat at 30,000 but thats just so activities can be maintained but others and it is safe, go much lower. Just watch for bleeding or head bumps. I think the worst part of it in the beginning is all the blood tests. My daughter likes the infusion treatments since the hospital has a playroom I prefer not being admitted and having my bed adn shower You will find your comfort level eventually and what is in yours and your daughters comfort zone as far as treating or not. It took me a year to relax but I am a hypochondriac by nature :silly: This site is amazing for info. Sometimes I think better info than any doctor can give since its straight from the mouths of people and kids going through this. Hope this helps and I hope your daughters counts recover soon.

I would personally get a second opinion before the bone marrow biopsy. Over the past 5 years living with ITP I have been to 3 respected hemotologists in the San Francisco area and they all agreed that bone marrow biopsy is not necessary for ITP. They say all the information they need is in the CBC.
Here is a link to Childrens Hospital in Boston and their recommendations:

www.childrenshospital.org/az/Site1138/mainpageS1138P3.html

There is more info about ITP and the necessity of bone marrow biopsy on the Natl. Institute of Health website (they say its not necessary for ITP). Anyway, you can take your time and do your research to find out what is right for you. Also steroids can be given without bone marrow biopsy, the two are not connected.

Hope that helps. All doctors are different it seems when it comes to ITP. good luck!