My little man is going on 3 in May, he was diagnosed after his 18month immunisation.
He had a bone marrow biopsy done just to rule out leukemia. I was glad to have that out of my mind.
His platelets have been as low as 9 and at that time it had been 6 months and we were looking at treatment, I was told to do the watch and act. Keep him safe. Ensure he didn't fall. It was hard but the hemotolgist advised me the treatment can be worse than the disease itself.
My son got sick and there were many factors I could not put my finger on it but maybe it was a coincidence..he had a bad case of croup, I gave him dimetap and his platelets went from 9 to a random 250+ without any treatment! That only lasted 3 months though until he relapsed. But it was good having that break.
My son had been sitting around the 40 mark after the 3 month break. I went on holidays so we decided to do treatment so he could do fun water sports. That only lasted 8wks until they began to drop. They were at 58.
My boy started coughing one night so I gave him dimetap. He immediately didn't cough again the cold subsided instantly so I decided to get his bloods done. I never thought in a million years his platelets would be OK as he was covered in bruises. His platelet count is at 238! One of his symptoms is his poop, when they are low his poop has a distinctive smell, it's gross.. You can smell it a metre away! Does anyone else have this symptom? I know it's not a common symptom but it is with us. It goes mushy and has no shape.
When I think back to the first time my son went into remission I recall him having dimetap when he was sick and his platelets went from 9 to high! This time I also have him dimetap. Is it a possibility an ingredient in it could make his platelets rise? I know if he relapses and get sick again, a 3rd time surely it's the dimetap. My understanding is they get low platelets from a virus or infection. Why does my son recover when he is sick? Do your platelets go lower when you are sick? I'm hoping he will be in remission but we will know in 3 months.
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Shoni89
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Hi I also have noticed the same symptoms and when I’m sick my platelets go up it seems that if I’m ill my body leaves my platelets alone and fights whatever sickness I have. Hopefully as your son is young he will grow out of it
I have found that my platelets drop considerably when I have a viral illness but go up if I have an infection that requires antibiotics. My haematologist says that this is a bit unusual as he would expect my count to drop with any illness.
I hope your little boy’s count will continue to improve.
My son had tonsillitis and was put on antibiotics and he went into remission for 3 months..his platelets bounced from 9 to normal but at the same time so many things went on such as gluten diet, detox, antibiotics...I couldn't point my finger..I wish I wrote it all in a diary.
We have been dealing with it since his 18 month immunisation and now he is almost 3.
It's definitely the same here, I've noticed his platelets increase after an illness and viral they decrease.
I am not in high hopes that this will be gone forever as I thought last time, to have a secondary itp for him is quite rare. I'm praying he stays In remission for longer! It's nice having a break from it. My sons count is normal at the moment and I'm so happy about it.
It was such a dreadful feeling to know it had come back last time, that's why I'm not having high hopes it's gone forever.
It would be nice to know how everyone got it though.
ITP is such a strange disease and it affects everyone so differently. I have had it for over 7 years now and I was very anxious about it at first. Some of the best advice I was given was not to get too hung up on the count but be watchful for symptoms of bleeding. I don’t really get any bleeding symptoms at all even when my count is under 10 ( just bruising and bleeding gums with small blood blisters in my mouth). I respond quickly to steroids and only get treatment when I see these symptoms. It really doesn’t affect my life too much and I’ve recently had a good two years without treatment. It probably took a good couple of years of trial and error with different treatments before we worked out the best way of treating it for me. I found that the treatments were far worse than the ITP itself so I would definitely go for watchful waiting as long as your little boy is not showing active signs of bleeding. I do get a bit tired when the count is low.
Just take him to the hospital and get his count checked if you’re at all worried, especially if you think he’s bumped his head. I know it must be a lot harder for you with him being so young, but try not to worry too much. He may still even manage to grow out of it as most children do.
Dear Janran. I am interested in the way you treat yourself with stéroïdes from time to time. I also respond well and quickly to stéroïds but my hemao doesn’t want me to take some in case my court is too low. I had in mind to take 10 or 20 mg for 2 or 3 days and then stop. How do you proceed? Thank you
We found out by accident that it only takes a very small amount of prednisolone to bring my count right up. I had a count of 11 and my haematologist wanted me to start on romiplostin but I wasn’t sure that I wanted to do that. He gave me a 10mg dose for a week just to keep me safe while I thought about it. The following week my count was already at 100. I have practically no bleeding symptoms so we don’t treat until my count is in single figures and then I take 10mg for two weeks then 5mg for six weeks followed by two weeks on 5mg every other day. I get my count checked regularly during this time. My count usually goes up to well over 200 during this time and then very slowly goes down again. My haematologist says he’s never come across anyone who reacts like this to this such a low dose.
Thanks for answering my question and sharing this information. I may try this low dose of cortancyl next time if need be and see how I react. Last time I took 50mg for 2 days and my platelets increased from 33k to 190 and then took a dose of 40, 30, 20, 10 and then 5 and stop the following days. My count decreased to 95 two weeks after.
I don’t really know but as immunisation is designed to have an effect on the immune system, I wonder if it’s that activating of the immune system rather than the chemical itself that lowers the platelet count. I have stopped having the flu jab as I’m convinced that it makes my count drop. Of course it’s a calculated risk as catching the flu would not be great for my ITP either. I certainly wouldn’t want to advise anyone to stop being immunised.
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