Parental advice on ITP please???

Can anyone tell us if we as parents can do anything to help our son with his ITP? His count 3wks ago was 8 then a week later it was 32 but just 2 weeks (5 days ago) it was 10. He is not bleeding but extensive bruising and rashes, doctors decided he didn't need seen for 2 months even though he had another appointment in 10 days!

Is there anything we can give him to help or not give him? Doctors not being very helpful

4 Replies

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  • This is very much similar case of mine. What you should do just keep patience. My daughter platelet count was 26 > 11 > 32 > 48 > 41 > 19 > 10 > 8 > 250 > 117 now. you son will ok within 2 months. Now you closely observe your son and if he bleeds then quickly go to the doctor.

    Platelets count => 100 ---no bleeding ---- no treatment

    Platelets count => 50 ---no bleeding ---- no treatment

    Platelets count = 20 ---no bleeding ---- no treatment

    Platelets count = 10 ---no bleeding ---- no treatment

    Platelets count < 10 --- bleeding ---- treatment

    When platelet count increase all the rashes remove automatically.

    ITP cure within 2 to 6 months.

    Finally you should go to a good hematologist and follow his advice.

    Food for ITP Patient

    Eat More : Fresh, natural, Leafy green foods.

    Leafy green foods : [kale, collard greens, spinach] [citrus fruits, kiwis]

    Whole grains : Brown rice, dried beans, wheat berries, farro , quinoa (piaju/boot) and other whole grains are full of fiber and nutrients.

    Dairy products : eggs, milk, cheese, liver, mutton and other dairy

    Blood-thinning foods : Onions, dark grape products (juce), garlic, ginger, tomatoes and large amounts of fish oil. Eat these only in moderation.

    Sugary items : Read food labels carefully to cut back on hidden sources of sugar, such as fructose, corn syrup and other sweeteners. And limit table sugar, honey and other known sources.

    Reduce activities that can cause bleeding

    Problem Foods : tonic water, bitter lemon , bitter melon, diet soda, sugar-free and low-fat candy and cakes

    Take Care......

  • Thank you for your advice, we don't mind that he's not getting any meds but what really annoys us is that the doctors don't even seem to realise that we as his parents exist so we're not being told anything except what they want, we feel surely there are things we could do to help

  • Hi Richnsusie. You have the sympathy of all readers I am sure, but rest assured he is on the right route. With many children ITP will develop and then it corrects itself for no reason. I am afraid there is no way of knowing. However Professor Jim George from Oklahoma says the condition is far worse for the parents than the child and I suspect you will agree with this. The only thing I can say is, be patient, hopefully it will rectify itself Carry an alert card to say he has ITP ( available from the ITP support group )and give him love and support. I am encouraged that your doctor is obviously knowledgeable about ITP and is following the correct treatment and is not panicking to give drugs even if he leaves you wondering what to do and in the dark. He is doing the best for your child so go with it BUT do not be afraid to ask any questions and if you do not understand the answer, ASK AGAIN and AGAIN until you do understand. ITP is a funny condition and all sufferers react differently to the condition and the drugs that are available. I have had it for 20 years with a steady count around 10; take no medication unless I need surgery and I lead a normal lifestyle modified to exclude dangerous sports, skiing etc. I am nearly 70 now so past most dangerous activities but I have just had heart surgery with no problems

    Sameen's response is excellent and I think we could all take her advice regardless of whether we have ITP or not.

    Keep positive, don't worry and be patient.

  • Thank you sailor for your help, yes it probably is far worse for us than it is for our son, I guess it's knowing there is something wrong and nothing you as a parent can do about it. We are trying to be understanding towards the doctors but couldn't understand how they said to wait 2 months for his next app when he had one in 10 days which they cancelled even after his count had gone from 32 to 10. If it had gone up then we would be far more understanding. At least he's not bleeding.

    Thanks again for your advice its VERY much appreciated at this stressful time :-)

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