Hi Nanuka, everything was going fine since her last 130 count went to school for a few days and today I found petechia and some bruises on legs. It’s at exactly 2 weeks of her last episode. I’m seriously so sad over this, I just can’t get use to it even though it’s been a long time of this. It makes me sick to my stomach that she is going through this I just want it to go away!!!
Her numbers have obviously dropped I’m just praying that they aren’t under 10k because I’m not sure I can handle seeing her in the hospital again I may lose it. Not sure if it’s a real thing but I seriously think I have ptsd from our hospital stays.
Going to wait a few more days if it gets worst I’ll have to go to the hemo before our next appointment which is this upcoming Monday.
How is your little girl?
Unfortunately I do not have any news , still she has many many petechie ,, few bruises and count 40 on average .. I started Papaya extract two days ago.. It seems it has neither positive nor negative effects on my child’s ITP ... This morning her petechie were much more than yesterday , I just cant get why they decrease or increase ... am on my nerves and hooe I wont burst one day ...
Tell me about your child? what did doc say? did you make blood count?
I know exactly what you are feeling with every new spot it feels like someone is twisting that knife. It’s the most helpless feeling I have ever experienced in my entire life and people keep saying to be strong but it’s almost impossible when your child is going through this. I always try to say to myself it can be way worst. So let’s try to stay positive and pray for it to just go away. Please know that you and your child are in my prayers.
When was your LO’s last count?
We made count today platelets were 108k and second run 98k not great but not terrible.
I mentioned that last week we had some petechia and that they would disappear after about a day and a half. She said that they should last about a weak and that’s just not the case for us. Hoping someone else on here can tell me if they had petechia last for a few days and not a weak. To be honest they were even some that would be visible today and gone tomorrow. I just hope that something else isn’t going on... of course I think of the worst.
The hemo said that it might be a good idea that next time when she gets them even if they fade to get a count just to see the number. This has the 7th month of practically weekly/bi weekly blood work that we have been trying to not run in every time she gets a few spots. So this past month and a half we have been waiting for the actual appointment even if she presents with some symptoms.
We actually started to think maybe she is fighting it and it will go away sooner than later because the spots are fading so much quicker, but after speaking to her I guess it was just wishful thinking. I don’t know and sorry for the rambling.
When at my baseline count of 12, a bruise would take close to two weeks to fully disappear. In the 50 to 60 range, a bruise takes about a week to fully disappear. Over 100, I can't recall ever getting a bruise, LOL.
Petechia is less of a problem in my case. They only occur below about 20 I suspect. Very small and infrequent. Yes, they do seem to last only a short time. Maybe a few days. Being so small (a single capillary?), I could see how counts going up quickly might also cause them to go away quickly.
Thanks you for your response Hal9000. I guess a good idea would be to take her in for a blood draw to see exactly how low her count is. I just wanted to believe that her body was fighting this and was correcting itself. Maybe it’s just wishful thinking.
The biggest challenge will be when she gets sick again. Keeping fingers crossed that they won’t drop.
I was just using myself as a point of comparison. It is very possible, even likely, that others have different thresholds. As another example, I never have had nose bleed issues. Others have that problem a lot. Essentially, for those with 'wet bleeding' ITP can become a daily struggle instead of a nuisance. In those cases finding something that works, like Promacta or Nplate, becomes more of a necessity. Of course with children, IVIG treatment is more the norm because of the likely temporary nature of ITP with them.
With counts bouncing, I'm sure its a bit of a guessing game.
Keep in mind, one can't stop technology. Nothing you can do to stop medical science working on ITP everyday. It is reasonable to expect major curative-like advances as the immune system becomes understood.
Stepping up on soap box. Same argument with things like the 'new green deal'. Those that profess such things assume technology never changes. This is profoundly wrong and misguided. Not 'progressive' thinking in any way. Stepping down from soap box.
Hi everyone am so excited ... Today she had 80 ... I cant believe that two months since last IVIG and she has 80 ... Maybe its Papaya ☺️☺️ But I just cant get it she has so many petechies but no bruises at all ... I hope the number remains or increases in few days ... fingers crossed
Turbo count in a range of 70-100 is very safe, even petechies if they fade away in a day ... its wonderful .. mine has so many petechies I hardly find clear place on her body .. I will see our Hemo tomorrow and will ask about petechies fading away in a day ...maybe she will say smth interesting ...
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