Our daughter is newly diagnosed

Hello Everyone,

Our daughter has just been diagnosed with ITP, she's 11 yrs old. She also has Hirchsprung's Disease. We're just trying to get a feel/understanding for all of this... She got sick about 3 weeks ago with a fever, sore throat, blisters on her toes, and an ear infection. The doctor ran a strep culture on her, which came back negative, a CBC, and some other blood work. He's puzzled about the blisters that have for about a year and half been appearing on her toes right before she gets sick. He initially thought it was due to strep throat, but out of the 4 times she's been sick, only once has she tested positive for strep throat. (we still don't have an answer why these blisters appear)

When her labs came back her platelets were at 31,000, and her WBC was at 4. The doctor got in touch with the hem/onc clinic at Children's Hospital in Seattle. We got an appointment a few days later, which they ran even more labs and her platelet count was at 81,000! Which was such a relief! They told us they were leaning towards the low platelet count being from a virus. But we will go ahead with weekly counts until her level hits 150,000 and stay for at least 2 blood draws.


On our next weeks blood draw her level was at 22,000. Again we go back down to Children's hospital. Once at Children's she has more labs drawn and her level is at 33,000. This weeks( Jan 30,2013) draw which is week #3 for her it's down to 20,000... I get a call the following day from Children's and the triage nurse tells me, that the doctor(which she has never seen, nor do we know) looked at the labs off the fax machine and wants us to now go to every other week blood draws.

Our daughter is a high energy child ever since she's been sick( 3 weeks ago) she has not had energy, she wants to take naps all the time, and is tried through school. Nothing in her sleep pattern has changed she still goes to bed at 8 pm, and wakes at her normal time. She is cold all the time (wears a jacket all day and night) she sleeps under 3 heavy blankets, with footed pajamas on. She's also having upper left quadrant pain, she says that she feels like someone is pushing down in that area.

We have ruled out sickle cell anemia. Some of her other labs have come back high Basophils absolute, Eosinophils absolute, and Immature granulocytes. Her WBC is now in the normal range. I've looked into these labs, and find some pretty scary stuff. Does anyone have any good information on these?

So here's our questions;

1. Is fatigue normal?
2. Would you still go ahead with weekly blood draws?
3. Is this treatment normal (i.e. just waiting and seeing)?
4. Is it possible to be diagnosed with ITP with the only symptom being low platelets?
5. Is it common to not ever have any other symptoms?
6. Do you ask for a bone marrow biopsy just to rule out other things?
7. At what point do you look into medicine?
8. Any diet changes that work?
9. Anyone else have whitish blisters on your person with clear fluid?
10.Has ITP been linked with any other illnesses?



I want to thank everyone ahead of time for any thoughts or information.

Thank You!

Welcome to the site. You get a lot of good information here. I just want to caution you that there's no replacement for a doctor you trust. It's wise to get a second opinion if you are not confident that your first opinion doc is familiar with ITP.

1. Is fatigue normal? For some people. It sounds like your daughter' fatigue is extreme.
2. Would you still go ahead with weekly blood draws? Since this is new to you, it's up to you if you go frequently. As people get more used to the diagnosis, they will often stretch the time out between labs unless bleeding symptoms appear.
3. Is this treatment normal (i.e. just waiting and seeing)? Yes, especially without bleeding symptoms.
4. Is it possible to be diagnosed with ITP with the only symptom being low platelets? There is no way to definitivey diagnose ITP. ITP is what you end up with when you have low platelets and no other identifiable cause.
5. Is it common to not ever have any other symptoms? Yes
6. Do you ask for a bone marrow biopsy just to rule out other things? No, especially not in younger people. However, if the white count and other counts are abnormal, this might be a good idea
7. At what point do you look into medicine? If symptoms are bothersome
8. Any diet changes that work? There's lots of opinions on this. I'd say no.
9. Anyone else have whitish blisters on your person with clear fluid? I haven' heard of that one.
10.Has ITP been linked with any other illnesses? Yes, with other autoimmune conditions, and there are several people here on with ITP and Lupus.

I agree with Tamar, but will answer your questions also.

1. Is fatigue normal? Not for everyone. The virus may also be contributing to that.
2. Would you still go ahead with weekly blood draws? It can't hurt at this point.
3. Is this treatment normal (i.e. just waiting and seeing)? Yes. Doctors don't usually treat above 20k anyway. Treatments can be harsh.
4. Is it possible to be diagnosed with ITP with the only symptom being low platelets? Yes, that usually is the only symptom. That's what ITP is.
5. Is it common to not ever have any other symptoms? Yes. Especially above 20k. Symptoms can increase if the count goes lower.
6. Do you ask for a bone marrow biopsy just to rule out other things? Only if other labs are abnormal also.
7. At what point do you look into medicine? If bleeding becomes a problem.
8. Any diet changes that work? It can take years of trial and error to come across something that works. Not really - this isn't like anemia where you can increase iron.
9. Anyone else have whitish blisters on your person with clear fluid? No. Have you tried having those biopsied?
10.Has ITP been linked with any other illnesses? Sometimes. Thyroid disorders and Lupus are the two most common.

Hi
My daughter was diagnosed with itp a little over a year and a half ago. He counts go up and down with every blood draw I use to worry all the time. Her counts go from 5000 to 65000 from week to week. She plays basketball 4 nights a week not counting any games.
I use to have her in a bubble but I had to let her out she couldn't handle being stuck in the house any longer. She is very active. We go about every second wk or so unless she is showing many signs of being low.
We only treat symptoms now not numbers
Hopefully she only has acute itp
Dawn