18 months with ITP

Hi all. I posted this in wrong section, so I am reposting here.

Last March my son was diagnosed with ITP. He was two and a half at the time.
He had bruises and petechiae and his count was 1,000. IVIG was administered. The specialists all said it would go away. It hasn't. The first couple months we would treat whenever he dropped below ten. Alternating steroids and IVIG. The treatments never kept his number above 20K for more than a week or two. Then he stopped responding to steroids. Without IVIG his number hovered around 20K-30K, then we had to move to Canada, that was a year ago... since we have been in Canada his number has been between 5K-10K never going above that. We would always treat when we would see doctor, but the IVIG side effects got worse and worse for him and the numbers would only go up for a few days. We stopped treating. He doesn't get blood blisters in his mouth, nor nose bleeds, nor body aches. But he always has bruising and petechiae. This week his bruises seem to be a tad bit fainter, and though the ones he has are fading slowly, the petechiae is not as severe as usual. I can't get my hopes up, I think it is probably just best to begin the process of acceptance that my son will have this condition for life. I can't seem to find any testimonials here of children who have had it for this long and gone into remission. My son is happy, he doesn't complain of aches and he says his bruises don't hurt. I feel like a bad father sometimes; not pumping him full of experimental drugs, but I am too afraid that the cure will be worse than the disease. I know his count is below 5 right now and it has been for some time, my wife and I live on eggshells worried about every corner he could bump into, every step he could slip on. I really wish some miracle would just make this go away. I know I am rambling, but it has been such a long 18 months, if anyone here has had any similar experience to ours, I would love to talk with you.

Thanks for reading,
Dan

Dan, AFAIK children are less at risk to brain hemorrhage than adults so you've got that working for you. Taking a small bit of Promacta or Nplate keeps platelet counts out of the danger zone, generally considered as less than 10. Keep in mind that side effects are usually dose dependent and that is certainly true with those drugs. Similarly. The higher the dose, the higher the counts. The lower the dose, the lower the counts.

I wouldn't necessarily think ITP is forever. Medical science is making breakthroughs all the time. My personal opinion is that CRISPR technology will revolutionize medicine and could be the key to solving/resolving ITP. There is hope.
pdsa.org/discussion-group/6-general-itp-discussion/30308-can-crispr-resolve-many-chronic-diseases-like-itp.html#66112

Please feel free to ask questions.

Hi Dan,
our story is a bit shorter (8 months with ITP) but similar. My daughter was 9 months old when diagnosed. At the beginning IVIG and steroids did not raise her counts at all. We decided to never ever repeat steroid tretment because of it's unbearable side effects. Last few IVIG infusions managed to help a bit - numbers went up to about 40-60 each time. However, just like in your son's case, her numbers are always back to below 10 just within couple of days. So in general .... we stopped treating. Trying to keep numbers up would mean to much pain and toxic medicines to her. I know we're supposed to wait another 4 months to get the label "chronic", but I already know it is chronic. But "chronic" doesn't mean lifelong. My doctors told me that some children fight ITP for a couple of years, but it usually goes away finally. I personally met parents whose children got better gradually and the disease was the worst during the first 2-3 years. Then numbers sat stable in a safe range and continued to improve.
We cannot lose hope, the younger the children are the better is the chance that they will grow out of it some day. And also, I put some home in Eltrombopag (US Promacta), we're gonna try it soon. Didn't you?

Hello Dan,
My daughter is almost 6 and we have been going through ITP for 12 months. Please know I understand how upsetting and scary it is as my daughter is in kindergarten. I live in fear everyday not being there to want her her but her hemo wants her to be a normal child. Our case is a bit different in the sense that her numbers drop only when she is fighting a cold/infection/virus. The first 8 months it felt like every other week her levels would plummet, but she was very responsive to ivig which was administered 3 times. Since we have gone to a new hemo things have been a bit different we don’t treat since we know that her levels go up on their own after she recovers from being sick. Its the absolute worst feeling that we cannot cure them and I lose hope all the time and go into extreme sadness. Even though it’s hard for me I’m hoping that she will still outgrow it even though she is now considered chronic.
Your little one and all ITP’ers will be in my prayers and I hope for them to outgrow ITP forever!

Hi there, thanks for sharing. I am a dad of 2 boys under 5 and my youngest was diagnosed in April 2019 with ITP at the age of 15 months. He is now almost 26 months old so we are approaching his one year anniversary and it has been a year of highs and lows. Like yourself, I am finding it stressful, always watching out for him running around near sharp corners, hovering nearby at the playground, going up and down stairs, etc.
We recently took our son out of daycare as his platelets fell from 72K in December 2019 to 3K in January 2020. Both my wife and I work and so he’s been going to daycare the past 2 months and coming home with bumps on his head and bruises. It was evident that the daycare couldn’t give him the attention he needed as he is very active and his classroom has a caregiver to child ratio of 5:1
After limited responses to prednisone and to IVIG, we recently took the leap and are trying NPlate (Romiplostim). He’s had 2 treatments via injection and each treatment has brought his platelet count up by 1,000 so not much of a response. Today he had his 3rd treatment and the dosage was increased to 7mcg/kg. We’ll see next week if it’s had any effect.
I’m currently on my second week of a three week compassionate leave from work to care for my son. I’m not sure what to do after next week if his platelets are still under 10K.
How are you and your family holding up? Also, in what part of Canada are you living in? It would be good to connect with other parents going through a similar situation. We are living in Toronto and have yet to meet other families with children with ITP. I hope your little one’s situation improves.

Cedar7, a 7 Nplate dose is getting up there. Hope his counts are starting to move up. Or at the very least, bruising is less.