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Should I get excited??

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14 years 8 months ago #11648 by jlollman
Should I get excited?? was created by jlollman
So next month will be a year in dealing with ITP for my four yr. old.
His last IVIG was in December and they usually last around 4wks.
Sometimes less or more depending on colds and viruses.
He had a cold and then a stomach virus and him numbers went a bit crazy. They actually stayed at 80 for two weeks, fell to 50 and this week, 116!!! This is the the first time he has ever gone this high on his own. When he drops, it usually goes as low as 5K. His white count a a tiny bit low, 5.o. Could he be getting sick and that is why he has had a jump?
I am scared to get excited!! Any other parents see this trend when their child was on their way to remission?

Thanks!

Julie
Mom to 7yr old Samuel with Chronic ITP. Diagnosed age 3
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14 years 8 months ago #11649 by MomToHenry
Replied by MomToHenry on topic Re: Should I get excited??
That is great news, Julie. I know it's hard to be fully optimistic, but I find myself in the category of cautiously happy. My 16 month old is reaching his 1 year diagnosis. We've had many ups and downs with IVIg - we're now averaging tx every 5 weeks with 20 as the tx cutoff. He usually hovers around 20ish... to my surprise, he's at 40 post 7 weeks of tx. So internally very excited though trying to be cautious as well. Your son's numbers are improving so that is always positive. I'm crossing my fingers for our next check. Wishing bountiful platelets to your son.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 8 months ago #11658 by Sandi
Replied by Sandi on topic Re: Should I get excited??
Julie - it is always okay to get excited about high counts. Don't think of it as remission just yet, but as a reprieve from the drops. Any child, or adult for that matter, can hit remission at any time in the process. Remission is usually defined as normal counts that stay up without treatment for 6 to 12 months. Just as easily as remissions can occur, they can also end. Be happy for now and take whatever you can get!
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14 years 8 months ago #11670 by jlollman
Replied by jlollman on topic Re: Should I get excited??
MomtoHenry,
Thanks and bountiful platelets to you as well!!

Sandi,
Great perspective, I don't know why after all this time I still think I can "figure" out ITP and the turns it takes..time will tell!
Mom to 7yr old Samuel with Chronic ITP. Diagnosed age 3
  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 8 months ago #11679 by Angel85
Replied by Angel85 on topic Re: Should I get excited??
No matter how many times i tell myself not to get excited when they are high, i do. It is just a natural emotion to be excited when something is going right and to feel sad and upset/depressed when things are going wrong.
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14 years 8 months ago #11691 by jlollman
Replied by jlollman on topic Re: Should I get excited??
Well, Samuel came home with fever today. Wondering if this is why his counts went up. Funny the blood work did not show him fighting off anything. White was only a tiny bit low for him. Next couple of days should be interesting.
Mom to 7yr old Samuel with Chronic ITP. Diagnosed age 3
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