4 year old, failed treatment. What to do?!?!

I had never heard of ITP until exactly two weeks ago. My 4 and a half year old son came down with ITP symptoms on April 8. He was fine one minute and within a few hours suddenly had bruises on many parts of his body. He also broke out in the red pin dot rash. The following morning the rash was worse, the bruising more intense. He also had bleeding on his tongue. We were admitted to Childrens Memorial in Chicago that day for treatment. They told us it didn't look like Leukemia, all his blood work was excellent except for his platelets. They were at 5,000. My husband and I were terrified and felt like we had been hit by a freight train. His symptoms came out of no where.

He was given two rounds of IVIG over two days. We were told this almost always works for ITP and that we'd be on our way with his count. We were discharged and they phoned us halfway home to tell us that unfortunately his count was still at 5,000. We were saddened and scared by the news. We were told to give it a few more days and when we checked his bloodwork, he was down to only 1,000. We then began steroids, 20mg two times a day and after 7 days his count was only 2,000. We are presently weaning off of those as they were not helpful.

We met with the hematologist at an outpatient appointment. He recommended that we take a wait and see approach. This seemed rationale but also terrifying as he only has 2,000 platelets. The interesting part is he doesn't seem to bleed heavily when he cuts himself. It clots very well. He has some blood when he has a bowel movement, a few dots of blood. And we are still having some clotting on his tongue. The hematologist also said given that he is a boy he wanted us to have a genetic test for Wiskott Aldrich Syndrome. When I researched this disease I was terrified. He does not seem to fit the profile but he wanted him screened seeing that he's had some ear infections in the past and he didn't respond to treatment that is usually successful. He still believes we have ITP but I guess it's just crossing things off the list as frightening as they may be. With the Wiskott syndrome the children seem sick within the first year of life and my son didn't have any illness until he got his first cold at 14 months of age.

If anyone has any advice or encouragement, I would love to hear your thoughts. We are at a loss and of course are terribly worried about him. I feel like our world has turned upside down. The hard part is he feels just fine and it's so difficult seeing him unable to do the things that he enjoyed just a few weeks ago. He just doesn't seem to understand. We are hopeful his body turns around on his own but I feel like a fish out of water with all of this, I have no idea what to expect with any of this and I don't know if we are even doing the right thing or not as far as treatment is concerned.

Geneva:

I'm so sorry to hear about your little boy. I know it is scary. Most of the time, ITP is acute in children and resolves in time. It can be triggered by an infection or immunization.

Watch and wait is a viable option; they rarely treat children in the UK - the U.S. is a bit more aggressive. If they decide to treat again, there are a few more things you can try. He may respond very well to another treatment.

A lot of the time, people with ITP do fine as far as bleeding because they have new, large platelets that work very well. Platelets shrink as they get older and people with ITP don't have the older platelets for very long. If he is clotting, that is great!

Hopefully a parent will chime in soon and help you out. In the meantime, just try to breathe and know that very few people die from ITP.

My 4 1/2 year old was diagnosed with ITP on January 22, 2012. I'm sure my post is still somewhere on the boards.

We are still dealing with it. In fact, today we got the news that his platelets are back down to 19,000. We always treat with ivig. His numbers are usually okay for about 4 weeks.

I don't have much advice, as we are still on the roller coaster as well, but you aren't alone. If you have any specific questions I can try to answer them. I am willing to share any and all the details of Ryan's experience if you think it'd be of any help or comfort.

Hi Geneva

I just wanted to let you know that I've got a 13 year old son who's had ITP for 3 years now, and although we have very rarely treated him, he has been just fine. His count generally goes from 5 to 15 ish, although its been down to 1 on a number of occasions. He has a very nearly normal life, plays sports, rides his bike, goes to scouts, play fights with his brothers etc etc. He went to scout camp once with a count of 1 - admittedly, he looked a bit of a mess when he came home, but he'd had a great time and the bruising and marks were only cosmetic.

I am really satisfied that he is safe without being treated. As Sandi says, very few children in the UK get treatment for ITP and the outcomes are just about the same as in the States where most children seem to get treated. I think your doctors advice is quite good, especially as the treatments don't seem to be having much effect anyway. Take some sensible precautions - a helmet when he is on his bike, talk to the PE teacher at his school, don't let him climb too much. But then try and chill as much as possible - hopefully it will just go away.

Good luck, Ali

Hi I have my little daugther she is five she star with itp in july 2011 she was 4 evrething star to fast like you son her platelets was 2000 they give her ivig that work for 3 days after that was 1000 they star with prednason 15ml 2 times a day an work after that they began to lower the dose. In august 2011 she stopped taking medicine her platelets were well. In january 2012 de hematology say she is fine does not need more blood test.
In march 9 she star with bruise in her body again and some red dots on the mouth and tongue we knew that the platelets were low , we went to the emergency room , her platelets was 2000 the hematology send steroid by the vein that helped for a few days she went home 3 days later with 24000 and 15ml of prednason per day, 3 days later we went to the appointment of followup and her platelets were in 1000 she returned to the hospital .this happened four times nothing worked, they put 250 mg of prednason at day for 3 days , work for 2 days after that 1000 again, the drs decided to put an infusion of tmedicine called rituximab, was 4 times 1 a week, they said after the third work, las monday april 23 was the las and my daughter platelets are 4000, i'm no sure if it will work. It has not beeb easy for us and less for he life change, she knows that she can't do many things like before now we are just praying God for her.

I was diagnosed with ITP in march of 2012. my counts were 9. I am taking the prednisone, I started at 100mg and now am taking 10mg, 8mg from next week etc. I found an amazing natural product called Maharishi Amrit Kalash nectar and Maharishi amrit kalash ambrosia. I found out about it through this PDSA website.

I started taking the Ayurvedic medicine which IS SUITABLE FOR CHILDREN about 3 weeks ago and now my counts are 217. I can not prove this is the reason for my fantastic counts but I feel it is definitely a contributing factor.

Good luck with your journey

Geneva,
My daughter was diagnosed with ITP in Sept 2011, she was 5 at the time, she is now 6. We are also in Chicago, but our hospital is Lutheran General in Park Ridge. Her hematology team was excellent. She also received 2 rounds of IVIG that did nothing really for her counts, she was at 1K, it went up to 3K. They ruled out leukemia with a bone marrow aspiration and then started her on steroids. She was monitored with weekly cbc's and eventually she was weaned off the steroids and she went in less frequently until her last visit in Jan 2012 when she had normal counts for a whole month and then got to stop them completely and also return to gym class at school. She did experience up and down counts while weaning off of steroids, but then they rose and leveled off. So our time with this was pretty typical for acute cases in children. Although it didn't seem that quick while we were going through it. I turned to this board frequently for support and now return to it to return the favor. If your 4 year old is not responding to ivig or steroids there are other treatments. It all feels overwhelming at first, but you will adjust to the new normal. Hang in there!

Hi Geneva,
Our 11 year old daughter was diagnosed with ITP just over a month ago with counts of 6k. She had the dots on mainly her arms and legs. Plenty of bruises with a few realy ugly big ones. As there was no active bleeding and because of her age the doctors decided not to treat and take the wait and see approach. This was still the case when the counts went down to 2k. At this point I got frustrated with the waiting approach. I looked in to what nutients I felt she may have been lacking and increased her intake of vit K and vit C foods...I felt I had to do something. I took her off of milk products as well. Less than a week later her numbers started to rise. I was thrilled ofcourse when I went to see the haematologist for the first time thinking that what I had done helped my daughter. The haematologist said it would have gone up anyway and to put her back onto milky products to prove her point. Her counts were 17k then. So I put her back on dairy and her counts still rose...they are now at 70k.

So obviously I now am relieved that she hasn't had any of the treatments, as from what I hear the side effects are not pleasent.
Although I panicked ....I found this blog very helpful and reassuring. It helped me to understand more about ITP and I have become more patient. The waiting is hard I believe more for the parent than the child. The child will slowly get to understand what they are and are not allowed to do. It just takes time. For me, the support here has been amazing.

I pray that his ITP is acute and the numbers go up soon.
Good luck
Leat