Our little guy (now 2years, 9 months) was diagnosed 5/2019. Received steroids twice with response lasting around 1 week each time. IVIG elicited a positive response for less than 2 weeks. Months of NPlates with no response. Now on 50mg of Promacta. No real positive response. (One lab found a count of 32 but dropped the next week.) Most recent count was 10. Not unusual for him to be <10. He does have bruises but no "wet" bleeding. My question is this: Can anyone share with me what kind of parameters they were comfortable with when practicing the "watch and wait" policy? Thank you.
My daughter was diagnosed with ITP September 2018. We are still struggling after a year and a half.
Our cases are a bit different as her platelets drop when her body is fighting a cold, virus etc. besides that hers stay pretty high not normal range but close enough. The first year was very difficult as her numbers would suddenly drop for about every week and half to 2 weeks. Her hematologist was very aggressive with wanting CBC done and any time she’d fall 10,000 and under we would be sent to the emergency room for IVIG. She had it 3 times and her numbers would go up to normal for about a month and a half to 2 months. It was very scary having to get blood drawn so often. We decided to see a different hemo in NYC at NYU. The doctor was very confident that she doesn’t need treatment since her numbers stay leveled till she gets sick. So we are on the wait and see program now. No meds, no steroids, no ivig. We only get blood drawn when we get too concerned and her bruising and/or petechia gets too much.
Our stories are very different but hope this helps a bit our hemo said as long as their is no wet bleeding most itp children do just fine.
Turbo, Thanks for your response. It is helpful even if situations are different. I completely understand the anxiety related to lab draws. Our little guy has them weekly, and it is very hard even though he tries to be strong. I wish you all the best with this new course.
gpT2, do you happen to recall what the dose was of Nplate that they got up to? Nplate doses are a number between one and ten. I ask because some doctors stop at 6. But the manufacture of Nplate says that 10 is the maximum dose.
Hal, I do not recall the dosage. Though it was a typical dosage in that is was a measured amount, ie. "mg". It was not a scale number. The RN administering the injection told us he was getting the maximum dosage. He is now up to 62.5mg of promacta. It is the package version dissolved in water. The suspension is given orally via syringe. To rule out any possible dietary interference, he is being wakened in the middle of the night to get the med. Not a great solution, but giving it a go. So far, after 2 weeks of this practice, count was 7.
gpT2, the dose number is the dose amount divided by one's weight in kilograms.
With adult reports I've seen here, going all the way up to Nplate 10 dose and failing would imply one would likely not respond to 75 mg dose of Promacta. That a higher dose is needed.
But as you know, what really is important is no bleeding. If platelet destruction is going on then having a lot of 'micro platelets' around can significantly lower the risk of bleeding. As I understand, micro platelets occur because the immune system destroying platelets is an imperfect process. That is, when platelets are destroyed pieces of platelets, called micro platelets, are left behind. When one is taking high doses of Nplate or Promacta, and platelet destruction is going on, there are lots more of little micro platelets around which reduces the chance of bleeding. The result is no count increase but bleeding / bleeding risk goes down.
Our little guys most recent count was 4. This on 62.5mg promacta. He is to increase to 75mg. He is a few months shy of 3 years, and weighs 29lbs. Anyone had experience at this dose level with a small child such as him? I know a number is just a reflection of that moment in time, but my concern is his trend has been downward for weeks now. Previously it was always very low, but up and down. No wet bleeding. Moderate bruising.
As I recall from her posts, statistically, low (sub 10?) count numbers are associated with increased chances of remission. Yes, it does seem counter intuitive. From my own observation of adults on this forum, the general association is also true with adults.
I am the mother of a one year old, happy boy whose ITP is officially in remission. He was diagnosed at 10 months with a count of 2. Today he is around 360. I am grateful for this group and the comfort of knowing we were not alone on this rollercoaster
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Are you still "watch and wait" during this pandemic? How often are your child's blood checks? I asked the hematologist if we could just stop for a while to limit germ exposure and he would not let us go past 3 weeks. In that 3 weeks, my son's count went up by 8 (which to me is basically no change) and he is now at 34. Thank God, he hardly cries and has zero tears. He's also well-known in the lab we go to as the cute little baby who leaves his mask on. Made mommy proud! But I don't want to go back if we're not treating unless wet bleeding, <10. I don't see the point (during pandemic). What do you all think?
Unfortunately, we have never been "watch and wait". Initially tried courses of steroids, then IVIg which elicited a brief (about 8-10 day) response. Then NPlate followed by Promacta. While still on 75mg of Promacta, he still had significant bruising, petticchiae, and then finally, some small oral bleeding. His count was 2, so doctors have placed him on cell cept. Initial count at one week, was unchanged. At 2 weeks it was 19. Doctors are going to wait for 4 weeks after that last lab. Objectively, he does not look improved.
If you are able to do "watch and wait", I think that is a great thing. I wish you good luck. I understand your concern about no unnecessary exposure during this pandemic. The panel that PDSA hosted was somewhat reassuring, but no need to take unnecessary risks.
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