TODDLER WITH ITP: My son is three... - ITP Support Assoc...

ITP Support Association

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TODDLER WITH ITP

Bens_mom2013 profile image
10 Replies

My son is three. February 2016 he came home from daycare, it was a Friday, with bruising down his back and buttocks. I thought he might have scrapped it on the slide . Friday night he was sitting with my mom and his thigh turned dark purple. More bruising Saturday and Sunday. He then Sunday night lightly bumped his head, and a huge purple goose egg appeared. Monday went to see the nurse practitioner. Count 12. He was sent to children's hospital. Ruled out leukemia. Treated his ITP with IVIG. My question is -did any of you audults maybe have this when younger and it was not diagnosed. I am afraid that he will have this as an adult. His platelets have been good since February after treatment. The doctor believes he may never have a problem again

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Bens_mom2013
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10 Replies
Notorious_IVIG profile image
Notorious_IVIG

Never had it when I was younger.. surely not at three years of age.. Was diagnosed at 38 years last year. It's a first for me to hear that a toddler could have it at such a young age. I have an appointment with my Hemotologist tomorrow and will ask for you if it's common in toddlers. All the best to the lil man ❤️

Bens_mom2013 profile image
Bens_mom2013 in reply toNotorious_IVIG

Thank you

Bens_mom2013 profile image
Bens_mom2013 in reply toNotorious_IVIG

Did they treat you with IVIG? They told me that it worked, one doctor said he was cured, the others say we wait- but we wait to see if it happens again. 😭😭 He had gotten a very high fever from a viral infection a few months before he was diagnosed. I am so frightened that it will happen again after another virus. I will pray for you.

Robert1959 profile image
Robert1959

ITP in children is surprisingly common and they mostly get the 'acute' version which generally lasts less than 6 months (as against the 'chronic' version that most adults get which lasts longer than 12 months). I once read that out all ITP cases diagnosed, half are children. The remaining half are adults with 2/3 being women and 1/3 are men. So as an adult male diagnosed at age 54, I was in the minority of people who developed this rare illness.

While there are no guarantees, if he only has the acute version I understand that there is a good chance that his ITP may not re-occur but if it does, it can be managed so that he can still lead a full life. As a parent I appreciate your concern so you will just have to keep an eye on him until it either goes away of its own accord or your doctor and modern medicine resolve it.

Bens_mom2013 profile image
Bens_mom2013 in reply toRobert1959

❤ thank you

JJMcLaren profile image
JJMcLaren

My daughter was diagnosed just before her 3rd birthday. Usually this disorder usually has 1-2 episodes and then your body kicks back in and adjusts. Some however, like my daughter, continue to drop and after a year they consider it chronic. At that point special testing including lab work and bone marrow biopsy are done to determine the exact cause. If there are autoimmune disorders in the family then the probability of having it for a lifetime is high. As for us my mother has rheumatoid arthritis and I have Crohns Disease. Addison- has a antibody that fights her platelets so if she is fighting off any bugs, which cause the immune system to step up its game, her platelets drop. Unfortunately, alot is still not known as to why some people grow out of it and others do not. The majority of people get to grow up normal, others have to live with this forever, but I'm lucky that it was not worse. My thinking is this is much better than leukemia. Yes we have activity modifications, yes we have hospitalizations and treatments, but we know after our daughter is coming home!! I try and see the positive in it. There is always someone dealing with much worse. I hope that your son is one of those cases that never has to deal with this again.

Bens_mom2013 profile image
Bens_mom2013 in reply toJJMcLaren

Thank you. Prayers for your family.

henryk4 profile image
henryk4

i was diagnose at the age of 4! i am now 26 and have been now diagnosed with chronic ITP! It is only a 1 in 10% chance to carry ITP from childhood into Adult hood!! If it helps i have led a relatively normal life and have not let anything stop me so far! There have been hurdles but you can get through anything!!

Bens_mom2013 profile image
Bens_mom2013 in reply tohenryk4

Thank you. It really helps me knowing how positive you are!

DBplatelets profile image
DBplatelets

I have always bruised easily but never to the extent of Ito bruising. No idea of a problem until diagnosed at age 47

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