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 ...
Hi everyone not exciting news:( we are in the hospital transfusing IVIg. she had only 17 today so our hemo decided not to wait and start IViG .. So now in total its a third transfusion since diagnosis and already fifth month started ...
Anyway we try not be depressed and we are hoping thats its a last time her counts dropped ...
we also had our third ivig treatment March22 she woke up with a very high fever and petechia all over. Turns out she got the flu(of course the 1st full weak back at school after 3 and a half months) we rushed to the er and were admitted with 9,000 Long story short after a few hours of finishing ivig we were released with a fever and the flu at 17,000 platelets. Hematologist was pleased with the fast result and was positive they would go even higher. By March 29th we were at 199k. She is in great spirits but I have been a mess trying to fight this sadness I’ve been feeling.
Nanuka I hope that you are ok we are so focused on the little ones and staying strong for them that we forget to mentally take care of our selves. Feel free to reach out to me should you need to just talk I couldn’t even find the strength to blog about it until I read that you were admitted as well.
I just can’t seem to come to grips as to why her body is attacking its self when she has a virus and destroying perfectly good platelets.
Hi Turbo, I am so sorry you are undergoing all these ... fingerscrossed .. we still have couple of months before their condition will be considered chronic and still even if it is cronic we can handle with the help of IVIG ... her counts yesterday was 55 we maid another transfusion and am waiting for todays results .. Our hemo says if its above 100 k we will be released ... She mentioned bone marrow analyses ... we have not made it previously wanted to just watch before starting the hormone ... now I am confused I do not know what to do ... because she is only 10 months old, ofcourse I prefer not to do the bone test ... I also discussed promacta Hal mentioned in the post that promacta for the cildren could be effective . However with the guidelines they should start promacta only after the IVIG and Prednisolone are inneffective and thats not the issue in our case ... I was reading some articles yesterday and encountered to some article reading that there is correlation between lactose intolerance and ITP, now I am thinking maybe we will do allergie test to find out if my LO has some alergies towards the lactose.. I do not know, I really do not know ... I have several thoughts in my mind and no proper solution
Nanuka, if you don’t mind me asking where are you located? My hemotologist only treats with IVIG only 10,000 and below. Since for us it’s a known factor that her numbers drop below that with a virus I’ve contiplated maybe next time I should wait a few days before getting ivig because I know that if we treat the virus odds are her numbers will go up. Maybe someone can give advise on this I’m just nervous about her numbers being below 10k and not treating.
Have you noticed any patterns with your little one? Do her numbers stay steady at a reasonable number on a regular basis. Just as a suggestion if and hopefully it will never happen again if her numbers drop and you are admitted in the hospital please ask the doctor to do a viral test they swab the nose. That’s how we have determined that her numbers drop when it’s a virus the 1st ivig she had some sort of influenza virus (not the flu), 2nd time was rsv and this last one she had the flu.
Well day before yesterday her count was 5 therefore we treated with IVIG only after first transfusion it went to 55 and than after second it was 97 .. We leave in small country Georgia its in Caucasus region . After the second IVIG her counts were above 100k for the first month , than next teo month she had different counts from 20 to 60 ... So I do not think it is because of fever or smth alike .... but thank you for your adice we will ask our doc ..
I live in New York,USA the reason I was asking is to see the different methods used in different states or countries. The only time my daughter got 2 doses of infusion was the first time as we didn’t know how her numbers would improve but the following 2 ivig she only received one dose and we were discharged right away as it takes more than a few days for the numbers to go up to normal range.
My personal opinion is give it some time before you think of the bone test hopefully she will outgrow till the time comes.
Your child is in my prayers along side with my baby girl to get healthy.
Nanuka, what a coincidence, I travel to Georgia (mainly Tbilisi) for work a few times a year. Beautiful country!
I also don't think you're anywhere near needing a bone marrow biopsy. The diagnosis of chronic ITP is now officially only given after a year has gone by, but even then it doesn't mean much as it can go into remission even after a year. Hope the time between IVIG treatments keeps lengthening. A virus can knock down the counts very quickly...
Nanuka, I won't be there again before late this year (am pregnant with #2), but it would be nice to meet if we can swing it.
Didi madloba for your support, too.
By the way, how are your daughter's petechiae now? My son also had a lot of those, even without bruises sometimes. They tended to pop up around or under 50K, but would heal relatively quickly unless he was really low.
Hi all , wanted to post updates since 4 April (last IVIG) .. She had flue two weeks ago and had count of 80 , than dropped to 50 and now she has 120 ... I am happy because its the first time since November when her counts are so high without IVIG effect .
How wonderful I’m so happy to hear that your little ones numbers went so high.
March 22 my daughter got her 3rd ivig her numbers dropped to 8,000 due to getting the flu in school. Thankfully tamiflu got rid of the flu fast and the ivig brought her numbers up high and seems to be doing pretty well on her own. Her last CBC was May 17 with a not normal but good number of 123,000.
Within the 2 months we had very few symptoms of petechia just 1-3 dots here and there. The good news is that we saw another hemo in NYU in Manhattan NY. She was very helpful although couldn’t tell me if my daughter will outgrow she gave me relief in telling me that it isn’t anything else wrong other than itp.
Please keep me posted I. Your child’s progress as I will too. Be strong!
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