I’m seeking advice and support regarding my 4-year-old son’s condition. He is an incredibly active child with no major symptoms apart from a persistently low platelet count. Here’s a summary of what we’ve been through:
Initial Hospitalization: Around 15 days back, my son was admitted to the hospital when his platelet count dropped to 8,000. At that time, he had no other concerning symptoms—no fever, liver function tests (LFTs) were normal, and he felt perfectly fine.
IVIG Treatment: He was given two bottles of IVIG (intravenous immunoglobulin) along with Dstron. His platelet count increased from 8,000 to 56,000 within a two days, and he was discharged.
Platelet Count Fluctuations:
• After a week, his platelet count dropped again to 18,000.
• On last Friday, his platelet count rose to 25,000.
• However, today (Monday), his platelet count has dropped again to 23,000.
Despite these fluctuations, my son remains very active, showing no signs of bleeding, bruising, or fatigue. He’s running, playing, and is his usual energetic self.
Recent Blood Work:
• Platelet count as of today (Monday): 23,000.
• Eosinophils remain elevated at 13.7% (normal range: 1-6%).
• He tested negative for dengue (NS1 antigen, IgG, IgM antibodies).
My Concerns:
• Is it normal for platelet counts to fluctuate like this after IVIG treatment?
• Should we consider another round of IVIG if the doctor recommends it?
• His eosinophil count has been persistently elevated—could this indicate an allergy or something else we should investigate?
• We’ve been advised to consider a bone marrow test before proceeding with steroids. I’m hesitant due to the potential side effects of the test. Should we go ahead with it, or are there alternatives?
I’m worried but trying to stay optimistic because he is so active and healthy otherwise. I would really appreciate any advice or shared experiences from parents or individuals familiar with ITP or fluctuating platelet counts.
Thank you in advance for your help!
Written by
karthik1
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I am sorry to hear your little boy is going through such uncertainty. ITP hit me, a healthy woman of 68, four years ago out of the blue. I was told my platelets were down to 1 (or is that 1,000?) and I was immediately hospitalised and given steroids. A bone marrow biopsy was suggested by my consultant but only if the platelets did not respond to the steroids. They did up to a point but the doctor said I couldn’t stay on them for longer than six weeks. ( He was reluctant to do the bone marrow biopsy which is apparently quite a painful procedure). At that point I was put on a drug called Eltrombopag which has kept my platelets in or just below the normal range. Initially I suffered some hair loss but that is no longer the case. I do get a bit tired but I am lucky not - so far - to have other side effects.
Good luck to your young son. I hope you have doctors as good as I have had these past four years. I’m monitored regularly
The ITP Support Association website has videos of previous conferences (with presentations by experts, including experts on pediatric ITP), and previous support groups (including a group on paediatric ITP). These might give you some useful information.
My experience with IVIG is that its effects don't last for too long.
Regarding the eosinophil count, it could indicate an allergy, but it depends on how high it is. In my case, it tends to be a little high, but it's not an allergy.
The bone marrow test doesn't have any long-term effects other than it is very uncomfortable and painful. It would definitely help with a final diagnosis.
I hope your son is having an acute itp crisis and that it resolves by itself.
Your reply has given me the strength and confidence. We are going for CBC again on thursday. We hope the platelets count increase a bit atleast. Thanks for your suggestions and prayers
Hi.Ibam an adult with ITP and have no experience with children.
I know with myself over the last 18 years, through various medications ( not ivig) and often on none that my platelets vary from day to day, week to week, month to month.
For me, like your son, i dont bruise or bleed on low platelets . Generally aim for about 30. Fine for me to hover around that as i dont bruise or bleed. others do on much higher counts...
So you have to know yourself.
From what i have read, childhood ITP unlike adult itp is often acute, and they mostly grow out of it.....
My heamotologists in uk are much more concerned with the symptoms not the number...
Hang on in there, roll with the waves , discuss sll your worries with the medics things will become clearer with time .
Spunds like your boy enjoys his life. Which is brilliant .
Any update? How are you all holding up? If you proceed with the BMB it shouldn't be too bad with an experienced practitioner. Just some pressure. I've had two.
We have consulted doctor this week. Platelets count fallen down from 23k(Monday) to 22k(Thursday). We are thinking of to go with BMB probably next week if it falls further. Despite the count going down no symptoms observed and kid is active as usual.
By your name I assume you're a fellow Indian firstly I would like to ask which hospital or hematologist are you consulting? And regarding your concern about your kid's ITP did he have any illness before the onset of his ITP? I am a young adult will get 19 in few days and got ITP after a very severe immune response to a pathogen in Feb 2023. I was in ICU for weeks and then discharged after many days and later 2 months later when on tapering steroids discovered I have ITP. It's been a year and few months since I have had ITP. See IVIG will give you a transient result. The major role of IVIG is as a rescue meditation when the counts are very low it's given to lift it up but again it will go back down to the baseline in few days to week. I had IVIG last year with my counts peaking 364K as I had a full course of 5 days and in 44 days I got back to 20K. Since then I have been on a drug named Mycophenolate Mofetil which is an immunosuppressant and My were above 150K for the last 8 months but I am again back to 20K after a nasty cold. See the major thing in ITP is to treat symptoms and as you mentioned your kid is too young to undertake the consequences of low platelets and I am happy he is asymptomatic at such low counts. The first line treatment is Prednisolone that's a steroid which mostly here in our country will be started at 1mg/kg and then tapered off . If response remains off the drug , well and good else you switch the drug. But I have a Good News For You Mostly Doctors don't treat unless you have a count less than 30K and as your son is young there is a very high chance he will recover. I don't know if your doctor has told you the pathophysiology of ITP. But yeah I hope that your son recovers without any medicine in coming days and as per the decision of choosing drugs to maintain his count majorly there are two options one are the TPO-Ra namely eltrombopag which is tablet and romiplostim which is a weekly injection which basically in layman's just boosts the platelet production. And the second broad category comprises immunosuppressants and some other drugs like dapsone etc. Here in India we don't have other drugs like fostmatnib and another tpo avatrambopag. I have been seeking consultation form Pgi Chandigarh and was shocked when they started me on MMF as it's an off label drug. I have been living a normal life even on the lows but just make sure your son does not bumps himself somewhere especially his head. And rest I pray that he will recover fast surely😃. And yeah pls answer my questions
I am Emmanuel. My age is 42 now.From my 13 years still now I am facing itp .It will be like that only.But u should encourage ur son in positive way.Follow ur doctor instructions. But But steroids are not that much good for body.it will lead to diabetics finally. So what I saying is try to maintain the platelet level so that u can avoid steroids medicine. I have spend around 60 lakhs still now and still 25000 inr in monthly basis for normal life and if count reduced it's going 50k per month.So plan ur career and his career and financial position according to that or some good insurance .why because no one guided as so still now I am struggling.
1.Avoid white sugar complete (It will lead to spleen enlargement
2.Avoid packed and processed foods.
3.Avoid hotel and outside food.
4.Be sure protein and fiber content there in daily food.
5.Good and quality sleep.
6.light exercise and yoga on daily basis.
7.Try to avoid infections as much as possible.
Be positive and keep him positive.
If u had any doubt contact me emmlatelecom@gmail.com
my daughter has had ITP for almost 10 years now (she's 25). She's been treated at Stanford Childrens hospital in California since the diagnosis. They, like one of the other people who responded here, treat the symptoms not the platelet number. My daughter uses steroids before surgeries to boost her platelets. She was a rower in college and was fine. As long as there aren't any underlying problems that are causing the ITP, maybe your son is ok to wait to see if it goes up. The only thing that could be an issue is if he is so active he seriously hurts himself. My daughter had a couple of bad falls and ended up being fine after I panicked 😁.
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