Immune Thrombocytopenia Purpura (ITP): What helps?

My 7 ear old grandson was just diagnosed with ITP last week. He’s been on steroids but his numbers have gone down. Who’d like to find out more info about it.

Hi @uhealthier2024, You sound very concerned that you may have ITP again. Your experience with acute ITP as a child 50+ years ago, was likely after a viral infection. From the articles I posted for you in my previous reply, it is usually a once and done event. So that occurrence is long past. That would be a matter of “Looking for trouble where there isn’t any.” ☺️

However, ITP can occur at any age. Here are some worthwhile articles to read which may help you identify if you are having any symptoms of a newly developed condition.

https://www.healthline.com/health/idiopathic-thrombocytopenic-purpura-itp
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https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325

You’re wondering what tests would be necessary to check for ITP. Your doctor would most likely order a complete blood count (CBC), electrolyte levels, liver and kidney function, platelet antibodies. This would give a good overall picture of the health of your blood and liver, kidney functions. The lab results would be good indications of your overall health.

These would be some of the symptoms of ITP:
easy bruising, even if you don’t remember bumping something.
pinpoint-sized petechiae, or reddish-purple dots that almost look like a rash on your skin, usually on your lower legs.
spontaneous nosebleeds.
gum bleeding.
cuts that take a long time to stop bleeding or scab over.
blood in the urine.
blood in the stool.

Do you have any unexplained bruising?

Just wanted to share that I started Doptelet and
In five days my platelets went from 30 something up to 61 (thousand) and my liver numbers are going down. There are side affects that I am experiencing and hope I can live with them and overcome them!

What type of testing should I ask my doctor to do?

Yes it can come back , I had it when I was achild then they gave a medication called CVP with Vitamin K and it disappeared until now at 74 years old but mild .

Welcome to Connect @uhealthier2024. Your name caught me off guard. I thought it said ‘unhealthier’. No one wishes for that. ☺️

Immune Thrombocytopenic Purpura (ITP) is blood disorder that causes a decrease in platelets. From my understanding there are two types of ITP. Acute ITP can develop in Children who have had a viral infection. The age range is more common between 2 and 6 years. So you fit right at the age of 4. From what I’m reading on several sites, it’s usually a ‘once and done’ event, like yours.
Sometimes patients need steroids to help return the body to normal. More often, according to the articles the condition clears on its own.

Here’s a link to one of the sites, Stanford Medicine: https://www.stanfordchildrens.org/en/topic/default?id=immune-idiopathic-thrombocytopenia-purpura-90-P02315

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Chronic ITP can occur at any age. An annual physical with a CBC would let you and your doctor know if there are any potential problems with your platelet levels. If they are low, your doctor can also run a specific test for clotting times.

Are you having any unexplained bruising or symptoms?

Hi, as a 4 year old child in 1965 I was diagnosed with ITP. I remember being in the hospital for weeks. I was supposed to have my spleen removed. But they started me on prednisone and my platelet levels cane up. I had no further treatment. Can it
Return as an adult? What tests should I ask my dr. To perform? I’ve had labs done, but I’m not sure if it was one that would detect a low level.

Welcome to Connect, @endoman246. If you’re having an over production of platelets, your hematologist would be the best person to consult about the next step to take if the Tavalisse hasn’t worked as expected. Taking any over the counter supplements can be pretty iffy as they can cause side effects, drug interactions and other issues.

Were you diagnosed with Essential thrombycythemia? How long were you taking the Tavalisse? Has your doctor discussed other options with you?

I just tried a drug Tavalise that blocks spleen receptors that destroy platelets. It did not work with platelets dropping 30 points each week. Anybody tried otc stem cell stimulation

Hi Emma,
The name Eltrombobag fills me with dread...My Husband was put on this four years ago, the first weekend he was on it, he had a stroke, but he did have un-diagnosed high blood pressure.
He continued to take it (altered strength) for a few years it was fine and then his levels began to drop so was put onto avatrombog, he finds it very difficult to get any for of stability with this med, he still takes it, but weekly blood test and ranges from 1 to 500 within one week isn't ideal.
His Specialist is going to try the Ref????(forgot the name) infusion in the coming months, so fingers crossed.