It’s been quite some time now 6-7 months of this roller coaster ride we just cannot get off of. Looking for some hope.
Everyone keeps saying it’s 6-12 months for the most part but I would like to hear from real life cases so that it becomes more real in my head. Please anyone who has been through this with their children give me your experience with this battle.
You might not consider this to be a success story, but I do .
My son has been diagnosed since he was 10, he's now 20. He probably had ITP before then as he had a lot of symptoms I didn't recognise at the time. Of the years since he was diagnosed, his count was generally under 15 for the first five, and it is now generally between 30-40.
The reason that I think this is a success story is because he's had very few issues in that decade, and he's led a really normal life. On occasion he's needed treating to get his count up for a medical procedure, and medication has enabled that to happen. He's participated in most of the sports he's wanted to, he's always attended school, and ITP is now a very minor part of his life (he sees his haematologist a couple of times a year).
I guess what I am trying to say here is that you shouldn't define health with a platelet count - good health is whatever allows you to lead a normal life.
The following user(s) said Thank You: maria3132, Turbo01
Thank you for sharing your sons wonderful success story alisonp! Gives me hope that even if it doesn’t go away she can live a normal life.
To give you a little background of our situation she holds normal platelet counts but every 2-3 weeks they drop very low, especially when she gets sick they plumit to dangerous levels. The hemotologist has advised to keep her out of school for a while to avoid sickness as those were the times we were hospitalized and they administered her ivig treatment.
Every time I think we will see the light at the end of the tunnel it goes away, which is why I wanted to hear some of the success stories with hopes that will be us.
My daughter is a success story, although she was a little older. She was diagnosed at 16 but I am quite sure she her counts were low for a while before that. Her major symptom was fatigue and they were actually doing work up for the fatigue when they picked up on low platelets. Her counts were around 40k for a year then they started dropping with each lab test (monthly) until they were under 5k. Even that low she did not have significant side effects - she was bruised like crazy and her lips and gums would bleed. She had extremely heavy periods so she went on birth control pills but her overwhelming issue was fatigue. There were times where I think if I yelled fire she would not have moved. She also was never sick as a kid and during this time it seemed like she always had a cold or sore throat or stomach pain. She went to school, she was not really into sports but she did keep up with her hobbies. We were very lucky we had a very low key and supportive pediatric hematology group. Eventually she had GI bleeding symptoms and her count was basically 0, so we did a round of steroids and IVIG. She responded well but 2 months later her counts were back under 5 and we decided to try Promacta. She responded very well, had some nuisance symptoms at the initial high doses but they went away as we decreased the dose. She was on it about 15 months and went into remission. She is 22 now, in school, no issues. She kind of aged out of her doctors - she now needs to find a new primary care doctor and have her count checked. I consider us very lucky because even with very low counts she did not have many bleeding issues, but I do feel bad about her fatigue ( I can also admit I can see it so much clearer looking back than at the time, I would get a little frustrated with her). And I did worry - she was not a bad kid but she was a teenager and they can do things which exhibit poor judgement...
Two of my cousins, and their father (my uncle) all had ITP as children. My uncle had chronic ITP as a child and eventually got a partial splenectomy back in the 1950s, which worked (we think it was partial, or his spleen somehow regenerated eventually, because he definitely has one now). Two of his three sons had brief ITP episodes around ages 8 and 10, both went into remission in a matter of a few (under 3) months, with prednisone pulses.
Hi Maria, I pray for it will never come back to your son.
As far as your uncles family wow strange how they all had a short bit with itp I feel like I’ve read somewhere that it is not hereditary but boy in their case it does seem like it.
I’m also starting to feel like it can be environmental I’m not sure if I’ve mentioned this before but a pediatric hematologist mentioned that when he works in my location they seem to see a larger number of patients with itp (children) than in a different borough literally 20 minutes over the bridge. The number he said astonished me I believe he said 2 cases per year vs 15. Which makes me think can it be the air or water how is this possible when they say it’s a fairly rare disease.
Yep, when my son was first diagnosed they ran a bunch of factor tests to see if there was a familial link, and found nothing. We live on a different continent than my uncle, so there was no geographic link. There are some geographic clusters, e.g. Mediterranean thrombocytopenia, which is prevalent in Italy. We seem not to know much about familial thrombocytopenias other than they seem to be autosomal recessive (but even that's not 100% certain). onlinelibrary.wiley.com/doi/pdf/10.1111/jth.12196
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association 8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141 Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003 E-mail: firstname.lastname@example.org