18 month old... ITP going on 6 monthse

My son was diagnosed with ITP at his one year well check. He was completely asympotomatic and had a platelet count of 13. This was in June of 2017. His counts dropped to 6 and he received a round of IVIG. Initially his counts rose and then dropped down to 13. They reached 123,000 by November 21, and we thought we were done! Then last week I noticed some purple spots and took him and his platelets were at 3! He received another round of IVIG and we discharged with a count of 32 the following day.
One week post IVIG his spots look worse. Friday his counts were at 22. He looks significantly worse today. He has an appointment Tuesday afternoon. Should I call the pediatrician in the morning and try to get him in a day earlier? Does it Really matter? Can 22,000 go down to below 10,000 again in a matter of 72 hours?
Has anyone ever received IVIG on two different occasions and the response been different?
I don’t really want to do IVIG again as it made him very sick, but there is no convincing a toddler to “take it easy”. Any feedback or similar experiences welcome!
Thank you,
Concerned Momma!

Hi. Yes, counts can go from 22 to 10 (or less) in a matter of hours. It's not the count that matters so much though, the symptoms matter more. Only you can decide by looking at him whether or not you think he needs more immediate attention. Does he have any bruising or bleeding?

IVIG can cause aseptic meningitis which is horrible to go through. It can cause severe headaches and vomiting. It would be very hard for a toddler because he probably can't verbalize how he feels. There are ways to try to avoid it: keep him very hydrated, insist on a very slow drip, ask for pre-meds. There are other treatments to try such as steroids. They all have side effects, but IVIG is such a temporary treatment so it might not hurt to try low dose Prednisone. Just a suggestion for the doctor.

Thank you for your response! He doesn’t have any significant bleeding. His little body has lots of new Petechiae and new small bruises all over but nothing major?? He has been completely asymptomatic up until this point, so that is why I am concerned. I am going to try and get him in with his pediatrician in the morning for a CBC.

From what I've seen, once they see a no response from IVIG, it won't be tried again. Or, if it is tried again it will be with steroids. If they want to do that, might ask for Prednisolone instead of Prednisone as a steroid. Some folks respond to the former and not the later.

Platelets can drop fast for some people (like me), Others stay pretty steady but bounce around a little. watch out for additional symptoms like bleeding otherwise I am normally told to wait it out. if you are really worried or if new symptoms come up reach out to the DR!

I hope his ITP resolves soon!

Not having symptoms is a good thing. Sometimes symptoms can appear with a count higher than you'd expect it to be, so it's hard to predict what a count might be based on symptoms.

Let us know how he is doing.

We just admitted through the Hematology clinic at our local children’s hospital. His platelets were down to 2 today

I'm sorry to hear that. Are they treating him?

Yes, they are treating. We are going to try WinRho. If anyone has any experience with this or feedback shoot it my way! Hoping this helps those platelets climb up and his body can maintain a safe count!

Curious. Did the doctor feel that his response to IVIG the second time wasn't good enough to warrant trying IVIG again? Or, was it the bad side effects of IVIG prevent using it again? Or, a little bit of both?

A little bit of both. He didn’t have good results with it the second time around. He went from 3 to 32 after IVIG; 7 days post IVIG was down to 22 and 10 days post IVIG back down to 2. He also got a fever of almost 103 and vomiting. Our doctor gave us the option to try IVIG a third time or to try the WinRho. I really didn’t want to do the IVIG again after he got so sick with such little success.

Ok, thanks. Those IVIG symptoms sound really, really bad.

Are you aware that ITP in most children resolves on its own given time? That statistic is something like 80% do within one year. It is like ITP is a different animal for them.

Has the doctor mentioned Promacta or Nplate yet? They have their protocols/sequences so maybe those are next after WinRho. In an adult, going to those would be a good idea with no IVIG response. But in children, that might be a good idea just to give ITP a chance to resolve on its own.