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Immune Thrombocytopenia Purpura (ITP): What helps?
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (174)Comment receiving replies
My son was diagnosed on his 6th birthday, he is now 24, and also autistic( he is verbal, but developmentally he will never be above a 10 yr old) he has had flair ups and bouts of remission all of his life with platelets never dropping below 10. Until this past Christmas 2023, when I noticed bruises and petica, took him for blood work platelets were at 4, he also got the 1st time also had bleeding on and in his brain causing a debilitating headache. He has been getting weekly IVIG, as well as oral Prednisone, metrophenalate, on May 15 2024 he had his spleen removed and is now still going for the weekly IVIG, on all same meds as well as Doptelet and his platelets stay between 0 to the highest of 2. It is almost the bugging of August 2024, I just wanted to know if anyone else has had a similar experience that maybe got better to give me and him some type of hope to hold on to because it's getting really hard to trust a hope.
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Welcome to Connect, @jennleeman. My goodness, your son’s condition must be so frustrating and worrisome for you. I swear there’s little worse than feeling helpless when it comes to taking care of our kids…no matter their age!
Hopefully someone with ITP experience will pop into the conversation and be able to offer you some assistance. It sounds as though your son has a good team behind him and giving him care with the Doptlelt to increase his platelets and IVIG infusions to help his weakened immune system. But you’re obviously concerned that he isn’t having as positive of a result as you’d hoped for.
Have you considered a 2nd opinion for him from a large medical/teaching facility like Mayo Clinic?
If you’re interested in requesting an appointment at any one of the 3 locations in Rochester, MN, Phoenix, AZ or Jacksonville, FL here is a link you can follow to get you started: http://mayocl.in/1mtmR63
It’s easy to lose hope when you feel like you’ve run out of options for your son, but please, never give up. The only thing stronger than fear, is hope. So try to stay postive while advocating for your son’s health.
From my understanding it’s important to distinguish ITP from other causes of thrombocytopenia, (low platelets). They can have similar presentations but may require different treatments. Has his doctors determined if this was primary or secondary to an underlying condition?