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TOPIC: My just turned 10 year old daughter diagnosed with ITP

My just turned 10 year old daughter diagnosed with ITP 4 months 2 days ago #68631

  • raj369459
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My 10 year old daughter has been diagnosed with ITP in this Jan 2020. Her platelet count is not going more than 2000. She spent 14 days in hospital with none of the treatments working. The hematologist tried IVIG, but it had reverse effect and her antibodies started to attack red blood cells. Then they gave prednisone for 5 days but not much help from this either. Later they changed to Promacta 50 mg and sent home saying her platelets should be back up within 2 weeks. After 2 weeks when she didn't respond to Promacta, they increased to 75 mg since 4 days. Her platelet counts are still <2K. Yesterday she had internal bleeding and started vomiting blood from her mouth. When we took her to ER, they noticed bleeding in her brain, so she is in ICU right now. The hematologist gave her several platelet transfusions which seem to work as her platelets increased to 128K. However, within 6 hours, they came down to 61K. So they started platelets transfusions again. Today they are talking of giving her Rituximab for 4 weeks and if this doesn't help they are going to remove her spleen.
Does anyone had this experience with your child? I know the side effects of Rituximab, but we are reluctant for splenectomy given her tender age. Can you please share your experiences with these two options?

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My just turned 10 year old daughter diagnosed with ITP 4 months 1 day ago #68640

  • JJ
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It seems to me that where brain bleeds are involved you have to do whatever it takes to get her count up, and in such circumstances even splenectomy should be considered. Here's hoping the rituximab works and the splenectomy isn't necessary.
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My just turned 10 year old daughter diagnosed with ITP 4 months 1 day ago #68642

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Thank you JJ! They just started Rituximab today and hope it works. Any idea how long it takes for Rituximab to work on platelets? The hematologist said it may take 2 to 3 weeks for it to start kicking.

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My just turned 10 year old daughter diagnosed with ITP 3 months 4 weeks ago #68656

  • JJ
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It can work straight away or it can work several weeks after the last dose.
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My just turned 10 year old daughter diagnosed with ITP 3 months 3 weeks ago #68706

  • Hal9000
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raj369459, about the IVIG. Was that actually 'WinRho' and not IVIG? I ask because a possible side effect of WinRho is attacking red blood cells. Either way, is the immune system still attacking red blood cells?

From what I've seen around here with adults, sometimes Rituxan can work when neither IVIG or steroids are working. It is a bit rare but it does happen. Also, those that have taken steroids with Rituxan (and don't respond to IVIG alone or steroids alone) seem to have a bit better odds of success with the combination.

A more recent Promacta treatment regimen (not FDA or manufacturer approved) is to go to an even higher dose, as much as 150mg. Some folks appear to need a dose higher than 75mg.

Oh, and another recent advent around here. User 'Carcamoc10' took 75mg of Promacta all through Rituxan treatments. Then upped Promacta dose above 75mg after Rituxan. After a very rocky platelet count road, she appears to now be in full remission.

Again for adults, what often has happened around here is to go on Nplate when Promacta 75mg fails. Nplate doses run from '1' to '10'. Usually an Nplate dose higher than 6 or so is needed when Promacta hasn't worked. It is pretty rare for someone to not respond to an Nplate 10 dose.

You might want to go to the PDSA search page and look through 'maria3132' comments. Her son had ITP. She did a lot of research on children with ITP. As I recall, odd as it sounds, not responding can often imply a good outcome.

Hope this helps.
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My just turned 10 year old daughter diagnosed with ITP 3 months 1 week ago #68818

  • raj369459
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Thank you Hal! My daughter came back home after more than 2 weeks in hospital. She had 3 doses of Rituxan and tomorrow she has the final dose. She is on 35 mg of Prednisone (2 times a day), 100 mg of Promacta (one time daily). Along with this they gave her Protonix and Carafate to rule out chances of irritation in her stomach due to these heavy doses. Her platelet counts started showing some improvement last week - from 45 to 63 to 120 in 3 days.

However, since she started these heavy doses of steroids and Promacta, she lost appetite and hardly eats anything and whenever she eats she vomits. We spoke to her doctor and asked if she can wean down on any of these two medicines and she reduced Prednisone to 30 mg from 35 mg. Even this seems not helping her as she is still getting dehydrated. I will ask her Gastroenterologist and hematologist tomorrow if they can do some more blood tests to check on her Pancreas and Liver.

Do you know if steroids and Promacta have these side effects? I am not sure what would be the preferred treatment option for my daughter. I meant if dehydration is ok as long as she maintains her platelet counts to reasonable level (>100)?

Thanks,
Raj
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My just turned 10 year old daughter diagnosed with ITP 3 months 1 week ago #68820

  • JJ
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Steroids cause the body to have excess glucose, to almost be diabetic. This causes a lot of peeing and so causes dehydration.

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My just turned 10 year old daughter diagnosed with ITP 3 months 1 week ago #68822

  • mrsb04
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If I had a child on that much Pred I'd be pushing to get it reduced and tapered off it as quickly as possible, horror horrid drug

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My just turned 10 year old daughter diagnosed with ITP 3 months 5 days ago #68849

  • RR01
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Hello Raj,
I am new here , recently diagnosed with ITP , trying to digest and get used to this diagnosis. Being young and going thru all this should be really tough.. How is your daughter doing right now ?

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My just turned 10 year old daughter diagnosed with ITP 2 months 3 weeks ago #68923

  • Hal9000
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Oh wow Raj. You went with all three: Rituxan, steroids, and Promacta. I think that is a first around here. Certainly a count rise like that after 3 weeks of Rituxan is a strong sign of success. It's been a couple more weeks now. Did platelet counts go through the roof and forced to back off both steroids and Promacta doses? Or ?

Vomiting when eating would be a new adverse event for me. What does the doctor attribute it too?

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My just turned 10 year old daughter diagnosed with ITP 1 month 2 weeks ago #69167

  • raj369459
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Hal,
Sorry for the delay in response. Actually I wanted to wait for at least a month before I give an update. My daughter's weekly platelet counts trend - 120->246->338->413->285->10->24->58->197->25->15 (latest on 5/21). I know it's kind of a bumpy ride. She is completely off of Prednisone, but after her counts dropped to 10, they started Promacta 75mg (on 4/27).
Starting this week, she stopped eating anything and always complain about mild to medium pain in her belly. We spoke to her hematologist and Gastro, and they started Carafate (sucralfate) again. When they started Promacta 75mg on 4/27 for the 1st 2 weeks her appetite and health was good. But this week onwards she started to lose appetite and throw up whatever little she eats. I guess Promacta has started to work after 2 weeks and causing these side effects. We are in a catch 22 situation - if we stop or reduce Promacta, there is a chance that her platelets go down and if we continue she will have adverse side effects.
It's been almost 8 weeks since her last dose of Rituximab and I asked her hematogist for her Lymph details so we know if the effects of Rituximab is reducing in her body. We have that scheduled coming Monday.
RR01, our experience with our daughter's ITP has been a very dreaded journey so far. I never thought ITP would be so painful and more painful to see our child go thru these. I will pray to God that your ITP would cure quickly and never come back.
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My just turned 10 year old daughter diagnosed with ITP 1 month 1 week ago #69204

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Wanted to give quick update on my daughter - the hematologist stopped Promacta 75mg for now and her platelets increased to 66 yesterday. I have a feeling she might have some other auto immune condition like IBD related to Crohn's disease which is causing her to drop platelets. I have read an old article in BMJ that there is a chance that one auto immune condition may cause another condition. I think we are treating and focusing on ITP rather than the underlying condition of IBD. I asked for her GI to do endoscopy and colonoscopy once her platelets are stable at >100K. I wanted to make sure that this might be the root cause of her ITP although the doctors wouldn't agree with me. I sent them the study from BMJ and they said there is not much research in that area. I will keep you all updated on this. For now it's just wait and watch until her platelets go upwards to 100k.

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My just turned 10 year old daughter diagnosed with ITP 1 week 6 days ago #69343

  • Hal9000
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Raj, that is quit a downturn in counts - down to 10. Hope they can get a handle on what is going on.

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My just turned 10 year old daughter diagnosed with ITP 1 week 5 days ago #69348

  • mrsb04
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Raj
Has your daughter been tested for h pylori?

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My just turned 10 year old daughter diagnosed with ITP 1 week 5 days ago #69350

  • raj369459
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Yes, they tested for H-Pylori 2 weeks back and got negative on that.
Another thing I asked them to test is for her iron levels and Vitamin D levels. Not surprisingly she is severely deficient in both. The doctors gave her Iron and Vitamin D supplements. She has an endoscopy and colonoscopy procedures scheduled on July 15th to check for IBD and other conditions.
Thanks,
Raj

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My just turned 10 year old daughter diagnosed with ITP 1 week 1 hour ago #69377

  • teenwithitp02
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Raj, I hope your daughter gets better soon! I know it's hard to deal with an auto-immune condition like this at such a young age. When you mentioned the infusion that she received in the hospital that started attacking her blood cells, was it WinRho or IVIG?

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My just turned 10 year old daughter diagnosed with ITP 4 days 16 hours ago #69384

  • RR01
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Raj I suppose you are in US , have hospitals opened up for regular visits? Hops your little one feels better soon , I also was having low ferritin and was put on Iron supplementation .Not sure if it made any change but will let you know after my next blood work.. I am in Texas and things are getting worse here and people are advising not to go to hospitals .

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My just turned 10 year old daughter diagnosed with ITP 4 days 15 hours ago #69385

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It was IVIG which was attacking her platelets. But this was only from one of the IVIG doses and not all. Perhaps this one was a bad one for my daughter. However, subsequent doses didn't attack her platelets and they improved count. Hence, whenever the platelets are down (below 10K), the hematologist gives her low dose of IVIG, followed by Prednisone which will get her platelets to a reasonable levels.

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My just turned 10 year old daughter diagnosed with ITP 4 days 15 hours ago #69386

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Yes, the hospitals are open here in IL. We were in hospital for 2 weeks in Feb and 3 weeks in March/April and have been visiting regularly since then. For these kind of emergency issues we have to go to hospital even though it's risky.

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