5 Year Old - Newly diagnosed, significant bleeding episodes (NPLate)

My 5 year old daughter was diagnosed with ITP on July 28. We were rushing her to the ER for what we thought was a bad case of the croup when she started to vomit blood on the way. She went to bed with a sore throat and by the time we got to the hospital she could barely breath, had a mouth full of blood blisters and small bruises and petechiae were appearing quickly. She required multiple rounds of epi to open her airways and experienced significant blood loss in those few hours due to multiple episodes of vomiting blood and a persistent nose bleed. Her platelets were at 1. She was given a strong steroid and platelets in the ER and once in the PICU, she was given multiple doses of IVIG over two days and required another bag of platelets. Her platelets went up to 84. She was moved to the oncology ward on day 3 and stayed there for 3 days. On day 3 post diagnosis, she was still having serious long last nose bleeds and her platelets were back down to 15. In one nose bleed incident, she lost quite a bit of blood and her hemoglobin and red blood cells dropped back down. ENT was finally able to cauterize and pack the nose. She was started on a 4 day round of prednisone and she was released on August 2 with a platelet count of 15 and the next day we returned for a CBC and they were back down to 9 and the nose bleeds were back. Her white blood cells were at 28,000 and her red blood and hemoglobin were back in the low normal range.
On August 7, with the return of the nosebleeds and some petechiae and blood blisters in her mouth and a platelet count of 4, it was decided that she be given an NPlate injection to get her out of this critical state that she was in. She had not responded well to IVIG, steroids or a combination of both and was still have significant bleeding issues. A 5 day 1/2 dose of Prednisone started on the same day as the NPlate injection. She had been on tranexamic acid since day 1 as well.
3 days post NPlate, her counts were at 110 and no bleeding, white blood cells were elevated. 7 days post NPlate and her platelets are at 483!! Her white blood cells are still elevated and red blood cells and hemoglobin remain low. The prednisone is done and we also stopped tranexamic acid.
We go for a CBC on August 21 and I am terrified as I have no idea what to expect. Has anyone had a child receive NPlate this early on the diagnosis? If so, or even if later, how has your child responded? Have the counts dropped significantly? Has anyone had the low hemoglobin and red blood cells with high white blood cells as well. She is experiencing mild headaches and some bone pain from the NPlate. If her count is 50 or higher, she will not have another injection on the 21st. We will wait and observe.
I'm looking for anyone with a similar journey as my daughter. I have read through a lot of the discussion and have not found another post about a child initially presenting with significant bleeding. I look forward to hopefully hearing from someone travelling a similar path. Thank you.

Mumofjess wrote:
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On August 7, with the return of the nosebleeds and some petechiae and blood blisters in her mouth and a platelet count of 4, it was decided that she be given an NPlate injection to get her out of this critical state that she was in. She had not responded well to IVIG, steroids or a combination of both and was still have significant bleeding issues. A 5 day 1/2 dose of Prednisone started on the same day as the NPlate injection. She had been on tranexamic acid since day 1 as well.
3 days post NPlate, her counts were at 110 and no bleeding, white blood cells were elevated. 7 days post NPlate and her platelets are at 483!! Her white blood cells are still elevated and red blood cells and hemoglobin remain low. The prednisone is done and we also stopped tranexamic acid.

483 sounds terribly high after 7 days. Did they start out at the lowest dose, a '1' mg per kg dose?

We go for a CBC on August 21 and I am terrified as I have no idea what to expect. Has anyone had a child receive NPlate this early on the diagnosis? If so, or even if later, how has your child responded?

AFAIK, when there is bleeding, like mouth blisters, administering drugs like Nplate or Promacta for those above one year of age would be typical.

Have the counts dropped significantly?

Nplate takes about a week to fade away and counts begin to drop. Hence the reason why it is given once a week.

Has anyone had the low hemoglobin and red blood cells with high white blood cells as well. She is experiencing mild headaches and some bone pain from the NPlate.

From what I've seen around here, headaches from Nplate can be from the drug itself, or, from high(er) counts. That is, some folks can have headaches with lower Nplate doses.

If her count is 50 or higher, she will not have another injection on the 21st. We will wait and observe.
I'm looking for anyone with a similar journey as my daughter. I have read through a lot of the discussion and have not found another post about a child initially presenting with significant bleeding. I look forward to hopefully hearing from someone travelling a similar path. Thank you.

Try not to worry. Some of the worse sounding ITP journeys end up with remission. I would expect the current goal would be to prevent bleeding and give the immune system time to sort out things. Get self versus non-self detection of platelets correct again.

Did she get a good count for today?

Hope this helps.

Thank you for your response. Her counts on August 21 were back down to 86. She had the NPlate injection on August 8 with a platelet count of 4. They peaked at 483. She will have a CBC tomorrow. We do notice some bruising and some perichiae in her mouth, so are expected tomorrow’scount to be lower.

Mumofjess, I don't frequent this place as often as I used to when my son (then 3 years old) was diagnosed, but wanted to say he definitely had significant bruising (not bleeding, except for a few nosebleeds that were easily stopped). As Hal said, her young age and severity at diagnosis are actually correlated with higher rates of remission. I hope she is doing well and not too aware of/stressed out by ITP, and I hope you are also managing to relax between all the appointments and stressful moments. It sounds like she is in good hands and a count of 83 (or anything above 30 really!) is good news. Please keep us posted!

Mumofjess,
I wouldn't worry about needing periodic Nplate treatments. But, with a 483, half the dose she got before should be better. Less risk of a blood clot from having too high of a platelet count. Half the dose should roughly produce half the platelet count.
Nplate can keep symptoms at bay while the immune system works things out. What is the statistic for children? 80% go into remission in less than 12 months?