Hi everyone.
I am new to this forum and looking for some kind of support and advice.
My little lovely daughter, now 11 months old, has been diagnosed on the 1st of February this year. Since that day I have been living in a hospital with her (!) and now I am at the point of losing hope that this nightmare will ever end. What bothers me most is that her responses to IVIG and steroids have been very poor so far and that such resistance to treatment might indicate that her ITP is more likely to become chronic. I hope you don't mind if I put here some details of our story. I would be interested to know what is your personal recommendation in terms of turning to "watchful waiting" at our stage.
To the point. On the 1st of February I saw “deep” and dark bruises on my daughter’s face which appeared after small trauma. I rushed to our paediatrician and from there I was directed straight to the emergency ward. The blood test showed 9.000 PLT and immediately we were admitted to the hospital.
The next day we started 3-days long course of IVIG. On the second day of IVIG her counts were 11, two days later it was 5. No response at all! Our doctor said it is not typical for a child not to improve after IVIG and she recommended steroids. She said though that a bone marrow biopsy was required before starting steroids. The biopsy was done on the following day and it confirmed the diagnosis of ITP. It showed there are many megakaryocytes in the bone marrow, however most of them did not produce platelets. This, as I was told, is typical in ITP since the antibodies attack not only platelets but megakaryocytes as well. Nothing alarming in spite of that.
So we started a 3-days long round of high dose metyloprednisolone infusion…. On the second day blood test results showed no improvement, two days later it was 40 plt. We were to be released in the next two days provided that the counts wouldn’t go down. In two days her counts were back to 11!
After that it was just playing “guess which steroid will help” game. She was given different doses of prednisolone, dexamethasone and hydrocortisone. Some of that went in form of pills, some as infusions through veins. Her counts were between 20-30 at this point and my frustration grew. The only thing I saw were horrible side effects. I was reading a lot about the disease and did not understand why would they treat so aggressively when the counts were above 20 already. Moreover, all the bruises had already disappeared by this time. But the doctors insisted on treating…
Finally we did the second round of IVIG preceded by high-dose dexamethasone infusion. Right after IVIG there was no response. How great was our surprise when 3 days after IVIG, i.e. on the 28th of February the counts shot to 117! We were released from the hospital on the same day with the feeling that the struggle was all over. It wasn’t.
The blood check was planned for 11th of March. My daughter had no single bruise or petechiae on her body so I went for the blood test pretty reassured. She was still on the lowered dose of dexamethasone with all the side effects of that so the only thing I was waiting for was to confirm that her counts were high enough to go off the steroids finally. The count was 6….
When we came back to the hospital I started to openly undermine the doctors’ opinion regarding steroid therapy. They continued administering dexamethasone which gave more and more side effects and no real improvement in counts at all (it went up from 6 to 16 then back to 5 and so on). I regret I was not brave enough to refuse steroids. Finally in the second week of hospitalisation my daughter’s blood pressure became so high (one of the steroids’ side effect) that doctors got a bit scared and started to lower the steroid doses with intent to go off them finally.
In the third week of hospitalisation we did IVIG for the third time. It raised the counts up to 40 but we had to stay in a hospital due to extreme hypertension caused by previous steroid treatment. At this stage I finally reached some kind of a consensus with doctors. It was agreed that my daughter wouldn’t be treated with counts of 20 PLT or above and provided that she has no bruises or petechiae at the same time.
We were released last Thursday (4th of April). The relief was short-lasting. On Saturday we saw some petechiae on our daughter’s body for the first time! It scared us so much that we rushed to the hospital fearing that her counts would be near to 0. It was 23…. Not so bad as for her at all….
So here we are again in the hospital. The doctors say that with the counts so low and petechiae we can be released only on our request.
I don’t know what to do. During last weeks I kind of got used to ITP and I am not scared of hemmorhage. Living in a hospital during spring months seems unbearable. On the other hand the truth is that I cannot guarantee that 11mo toddler doesn’t hit her head. I cannot tie her up to the bed. Living in a hospital means safety. Then ….. I go online and read that in the UK children are only treated when there is active bleeding. My daughter’s little petechiae seems nothing like active bleeding at all! From that perspective our doctor’s recommendations seem like a miserable joke.
I live in Europe and I know some doctors in the US have much more liberal approach.
I am so sorry for such a long post. If anyone ever reads it through, please tell me, what would you do????
