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ITP found us again

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14 years 8 months ago #11893 by Kaylas mom
ITP found us again was created by Kaylas mom
Guess we weren't hiding very well, Kayla's count is down to 12k today. The strange thing is along with the petichiae and bruises, this time she also has hives that are moving across her body. I say moving because that's what's happening. They started on her chin last night and have moved all over her body. They diasapear from one spot and triple on another spot. Weirdest thing.

This crazy roller coaster never gets predictable.
Krissy
Mom to Kayla 10 dx 2/2009 with a count of 1,000
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14 years 8 months ago #11894 by shen08
Replied by shen08 on topic ITP found us again
Hi, sorry to here Kaylas counts are down. Two days before I went into A & E with petichiae I had got a really strange rash it was like hives and a nettle rash together it came up two nights in a row and it travelled from my neck and shoulders down to my feet, it was on the third night the the petichiae came out. I was convinced they were connected but the docs werent.

When I got that hives thing it felt like my skin was on fire, i found that moisturising helped cool it down a bit. maybe it will help your daughter.

Hope her counts start to climb.

Shen.
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14 years 8 months ago #12003 by Kaylas mom
Replied by Kaylas mom on topic Re: ITP found us again
Today she came up to 30K so she was able to go to school, the hives are still hanging around. One minute she looks good the next her fingers are all swollen and itchy.
This poor girl just doesn't get a break isn't the drop in platelets enough, why do we have to add hives to it??????
Krissy
Mom to Kayla 10 dx 2/2009 with a count of 1,000
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14 years 8 months ago #12151 by shen08
Replied by shen08 on topic Re: ITP found us again
the poor pet.

The hives dont turn into bruises or anything do they? have the docs suggested anything?
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14 years 8 months ago #12159 by Kaylas mom
Replied by Kaylas mom on topic Re: ITP found us again
Nope the hives would just pop up and disappear leaving a red mark, before diapering completely they finally stopped on Sat 2/5. She came home early yesterday with a pounding headache, today it is still hanging on. I called the pediatrician and we both feel it isn't caused by any head bumps, but to be cautious we will get her count today and scheduled an appointment for this afternoon just to be on the safe side. I have a suspicion it is a migraine, she had a bad headache a awhile back after a drop in her count we had a CT scan at that time and luckily it came back clear, but our suspicion at that time was a migraine.
I just wish I wasn't constantly questioning, and feeling so unsettled. I never feel like I have the answers I need to this crazy disorder.:blink:
Krissy
Mom to Kayla 10 dx 2/2009 with a count of 1,000
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14 years 8 months ago #12160 by shen08
Replied by shen08 on topic Re: ITP found us again
That would be awful, I find it quite frustrating with my ITP, cant imagine how I would be if it was my child.

Let me know how it goes xx

All the best.
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14 years 8 months ago #12161 by Rhiannon
Replied by Rhiannon on topic Re: ITP found us again
Is she on any other medication? I take regular penicillin due to losing my spleen to ITP and on that it says to look out for hives. Not having a clue what they were I didn't know what to look out for till now so thank you for discribing the rash clear.
Medications or something she is eating/drinking regular may be the cause and I don't know enough about it to be able to say whether it can cause ITP. But if every time she has ITP following hives then they be fools not to take it into an account. Something for you to monitor and report the findings I guess.
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14 years 8 months ago #12165 by tacmom
Replied by tacmom on topic Re: ITP found us again
Poor Kayla! I know exactly how you feel when it comes to the headaches! Caitlin had 3 CT scans last year and the neurologist finally said enough is enough and not to get anymore CT scans unless she had an injury and we knew for sure her count was low. (ER dr wouldn't listen to us and kept thinking the ITP was causing a brain bleed.) Migraines and ITP do NOT mix for sure!!

Have you had any other blood tests run on Kayla to make sure there is nothing Lupus related going on? (More specifically an ANA test to see if it was positive or negative, then maybe SED or CRP to check for inflammation.) Then if her ANA is positive, maybe a visit to a rheumatologist is warranted to see if anything more than just ITP is going on. I hope not!

I hope her platelet count is up today!
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
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14 years 8 months ago #12184 by Kaylas mom
Replied by Kaylas mom on topic Re: ITP found us again
We went and saw the Pediatrician who did a neuro workup on Kayla to determine, that yes it's just a headache, and get this her platelet count came in at 286K. You should have been a fly on the wall both the doctor and I looked at each other and our jaws dropped. Were not sure if that is an accurate count as she has never gone that high without treatment, but we'll take it!!!!!
(Maybe her body is working so hard to get her count up it's pounding in her brain)
Anyway she's feeling better today, another turn on this crazy ride.
Krissy
Krissy
Mom to Kayla 10 dx 2/2009 with a count of 1,000
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14 years 8 months ago #12186 by shen08
Replied by shen08 on topic Re: ITP found us again
Thats great news, Long may it last. Hope that they stay up.
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14 years 8 months ago #12187 by srunge
Replied by srunge on topic Re: ITP found us again
Wow! Thats wonderful, sounds like her body is trying to get back to normal. Hope this is it for her.
Shauna, Emmy's mom
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