TOPIC:

03:45 in the morning and I've slept 5 min...

The side effects mentioned does seem like a viable cause for how she is. She's in pain and discomfort... She pointed at her knee earlier and signed "pain". =/

She can't fully relax and just sleep.

If you go to the hospital, can they at least help with the pain and take care of her while you sleep for a bit? Can a nurse come to your house? ☹️

Poor little girl! A few years ago, I was getting high dose steroid IV's for Lupus. I never expected this, but the main side effect for me was bone pain. For two days after the IV, I didn't sleep all night because the bone pain was so intense. If she is going through something similar, no wonder she is miserable. It must be hard for both of you, especially since she can't verbalize how she feels or understand why she feels that way.

Johnny, if that Bactrim (which blocks Folate) caused her ITP I'd be tempted to get some B-complex vitamins.

From the PDSA website on Vitamins and Folate (aka Folic acid / Vitamin B9):
www.pdsa.org/treatments/complementary/vitamins-and-supplements.html
"
Folic acid deficiency may cause thrombocytopenia. In a study of 14 ITP patients given high doses of folic acid, 64 percent had a complete or partial response and the others showed some transient improvement. However, if someone has a low level of vitamin B12, high doses of folic acid may cause anemia and cognitive impairment.
"

A B-complex should have both B9 and B12 in it. I think foods like Oysters have a lot of B vitamins (and iron for hb level) too.

Been hospitalized for two days now and today she vomited partial blood and her hb value went down even more today to low 50 and dropping. She's bleeding internally, which we knew. But the vomit also meant they rushed for an emergency operation to put in two ivs. In case one fails.

I'm currently in the waiting room and thought I'd update you.

She will get blood afterwards for her hb to increase some. The itp part, no real plan there. Just treating the blood loss.

Hal she has not been given Bactrim. I said no to that. She mightve gotten Bactrim earlier this year, before the itp got worse.

If we get home from this and she gets her appetite back I'll use vitamim supplements daily. Even though doctors say there is no foundation in science that it will help her itp in any way.

She was given stronger pain medication yesterday so she's been able to sleep more.

I'll see when I'm back next time. In a morbid way I feel it's time she doesn't have to undergo this anymore =/ it's been just a thought before but now with this.. I feel sad for her. I cried along side her all morning yesterday because she was in such discomfort. =/ there was nothing I could do. More than going to the hospital of course which I did.

Thank you for the update. You are an amazing father. I am crying in my office here in the US reading your words. I hope her suffering is lessened by the pain medication, and that they can stabilize her. I also understand completely your hope for her to be pain free and at peace.

Sadly she's had two cerebral hemorrhages today. And she's no longer responsive. The first came after another vomit with blood. She collapsed and stopped breathing a few minutes after. Then 12h later another more severe where her pupils no longer reacts. And she's not expected to make it.

We had a hard talk on our (parents) initiative after first incident. We felt something was wrong.

She's been at unrest for days. And currently she's sleeping and not reachable, with heavy breathing. It's the middle of the night and a wait for the inevitable.

I've cried so much today I'm out of tears. There's a a sense of relief as well, as she's no longer in pain. This is hard feelings to deal with.

I thank you for your lovely words and support. It has helped to get through some of the tough moments.

She passed away not long after last message. =( It was as peaceful as it could get with mom and dad next to her all the way to her last breath. She had no pain or discomfort her last time here and she's in a better place hopefully. I wish I could post an image easily here but I can't find a way right now. I so miss her already and I'm in tears writing this.

As I said this thread was a bit in last hope of finding a cure. It was probably not just ITP in her body but something else, very aggressive.

What's tough is our other daughter has her birthday... today. So me and mom will spend time with her and explain what's happened.

You have helped me through this. I thank you for writing and replying to me.

Johnny, I am so sorry to hear that she passed. Thank you for sharing her story. You and your daughter have inspired me to be a better parent. Thank you for that. She was placed in your care for her relatively short time here because you are the best a child could hope for in a dad. I am heartened to hear she was relatively comfortable and surely completely comforted by your presence. I wish your family much rest and peace in the coming days and weeks.

Johnny. Thank you for posting. I am very sorry to hear this.
Best of luck to you.

Johnny, I am so, so sorry to hear this. My heart is breaking for you. She sounds like such a special little girl. You're right, try to take comfort in the fact that she is at peace. As unfair as it was, it seems that life was very hard on her. I'm sure that you gave her the best life possible.

So sorry for your loss. I will pray for you.