My 4yr old son recently diagnosed so far with ITP

At the end of November, I took my son into the ER due to big bruising all over his body and constant stomach pains. They ran a CBC test and everything came back normal but his platelets were at 7,000. The doctors said his white cells and red cells were normal and that it looked like to be ITP. The doctor said he was confident on sending him home the following day and that his body should heal on its own. We went back in 2 days later for a followup and his platelets were even lower, down to 5,000. His doctor STILL insisted that he didnt need treatment and that we should just keep him supervised at all times. At this point, I was not confortable nor his dad, in taking him home and trying to keep him from running around and possibly bumping his head. He is a very active 4 yr old. So she said we could do the IVIG treatment if we wanted and we decided to go with that. He had treatment the next day with a couple side effects the following day (vomiting and slight fever that lasts a couple hours) and that was it. We went back 3 days later and his count went up to 233,000. We were so happy but didnt realize how fast they could drop. Since we are still very new to this disease, we didnt realize how quick they could fluxuate. We had another followup the following week and his platelets dropped to 63,000. We were told to watch for the signs again and scheduled for a followup a week later. This past Thursday we went back in and they dropped to 44,000. Now this past week, the bruises are everywhere again. His legs, his back, even his face. Like I said, he is a very active toddler. Yesterday he ran right into our kitchen counter and half an hour later, he had a big bruise on his cheek. He hasnt gotten the petechia dots yet, like the first time when we took him in, but I know his platelets are dropping from the bruising. His next followup is this Thursday and I have a feeling there gonna be below 10,000. Is this how life is going to be from now on? I feel like its just a waiting game and im just waiting for my son to get sick again. Ive done so much research on this disease but it seem slike their not even sure that its ITP. They said they dont think its cancer because his red and white cells came back normal. But is that the case all the time? Doesnt your blood change all the time? And when would the doctors suggest doing a BMB to rule out any other blood diseases or cancers? And how long is this treatment IVIG supposed to last? Im sorry this is alot of questions. I am just so overwelmed by all of this. My son has had health problems since he was born. RSV, breathing problems, asthma, bad allergies, and now this. I just feel so helpless and worried for him. Im just afriad there is something else going on and I want to be sure they are ruling out any other diseases but I dont know what to have him tested for? And I feel like his doctor is basically just brushing this off by not suggesting treatment in the first place, when his platelets were at 7,000. Also, my son has state insurance. I wonder if this is a reason why they didnt suggest treatment? Please, if anyone has any more information that will help, id love to hear it. I am a single mom and this is really taking a toll on me. His dad is suggesting we get a second opionion at University of Ann Arbor Michigan...to be sure they are testing him on everything else. Is this something everyone has done before?

Jtaylor:

ITP in children is different than ITP in adults. Children usually have acute cases that go away within a year or so, although not always. Also, children are not treated all the time like adults tend to be. I wouldn't be too alarmed with the doctors tendency to not treat. Sometimes it's acceptable to watch and wait if there isn't any bleeding.

Also, additional tests are not necessary to diagnose ITP. Some doctors will suggest a bone marrow biopsy, but that is usually just for peace of mind and not required. You might find that there are two types of doctors: some that overreact and some that barely react. Since treatments can have bad side effects and don't usually last, treatment in children is sometimes controversial.

You do want a doctor that you feel comfortable with, so getting another opinion isn't a bad idea. Hopefully, other parents will chime in with their experiences.

Hello

I just wanted to add that since the IVIG did work so well (even with a fast drop, that is VERY common) it is most likely ITP..One of the biggest reason they do BMB's on children is if treatment does not work..So that is a good sign!!

It is common for dr's and parents to not treat children unless they have active bleeding, and many save IVIG as a rescue treatment if bleeding should occur.

I was not comfortable with not treating at first, I was terrified! Now I am more afraid of treating:)
You should be comfortable in whatever is chosen, always remember it is YOUR child, if the Dr isn't willing to listen, find another..


I hope you have read some of the post here, you will learn alot and likely find some comfort.
It does get easier, and he has a great chance of recovering quickly, with or without treatment!

Take care and if you have questions or just wanna vent remember that is why we are here!!

Hi,

What you've experienced is pretty much what my son went through 3 years ago, and I think that's standard for children who don't have overt bleeding symptoms. You don't need a bone marrow test to diagnose ITP, the doctor will have excluded anything else from looking at your son's blood.

The trouble with treatments for ITP is that none of them are risk free, so you've got to balance the risk of the ITP against the risk of the treatment. For the majority of children who haven't got active bleeding symptoms, the risk of treatment is greater. Good doctors tend to treat the symptoms and not the number - however low that is. Those doctors are quite conservative in their treatment. It might or night not make you feel better, but no treatment is the norm in the UK, and there is very little or no difference to the outcome.

So I dont' really think that your doctor is being neglectful, but As Crystal rightly points out, you've got to have confidence in him. If you aren't, go and find another one!

Good luck, hopefully your son will recover soon. Ali

I just read your post, and wanted to tell you about my daughter. When she was 6 (she is now almost she was diagnosed with ITP. Since birth she was a sickly girl, just like your son. 2 months after her diagnosis they did a blood test and found that she was IgA Deficient. This means she is more suseptable to illness (colds, viruses, infections, sickly, ect) and autoimmune disorderes. Also, its quite common (1 in 400 approx.), just most people are never diagnosed as IgA def, they are just sickly people. I wanted you to know cause I went through so much telling the drs over and over that I think everything is related and they kept telling me it wasn't...but I knew better. Ask your dr to check the Ig levels.

Sorry for spelling mistakes. i'm in a hurry. Good lick adn hope the ITP goes away soon!