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TOPIC: Whats ITP? Unfortunately, now I know.

Whats ITP? Unfortunately, now I know. 9 years 2 weeks ago #5143

  • Emily
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Hey,
My name is Emily and I am sixteen years old. I was diagnosed with ITP a few months ago. It all started when I noticed this strange "rash" spreading over my feet, legs and forearms. In hindsight they were actually petichae but I gave them no notice. About a week later I woke up with an explosive bloody nose, those gross blood blisters in my mouth, and bleeding gums. My mom took me to Urgent Care and they diagnosed me with strep strangely enough and put me on antibiotics. When the bleeding wouldn't stop and I started to notice the bruising we were asked to come back in for a CBC. Turns out I was at 0 platelets and was sent to the E.R. It was all very surreal after that point. I was admitted into the hospital that day. My first night there one of the nurses said she thought my heart beat was irregular. After an EKG it was determined that my valves or something were off because my blood had become so thin. After four days of 70mg prednisone injections my count had only hit 8,000. My hemotologist finally decided to give me an IVIG. After two treatments of the IVIG I was releasted two days later at 27,000 and on an upward trend under the condition that I would stay at home and rest. I missed my prom and the week of school before finals and in my case AP tests. It really sucked! The count soared up to 450,000 due to the IVIG but now is dropping at an unsettling pace. My last CBC indicated I was at 150,000 and I am crossing my fingers that it doesnt drop out of the normal range. I am currently taking a 60mg oral dose of prednisone and hoping to start tapering off soon!

So I am still pretty new to all of this and I have a few questions to throw out there if anyone has an answers. . I would really appreciate it :)

I am a downhill skier and my doctors said I might not be able to ski. I cant fathom that. Have any of you lost sports you loved and how did you deal with it?

Do all of the medications to treat ITP have undesirable side affects? All I know is that prednisone is definitely NOT a girl's best friend.

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Re: Whats ITP? Unfortunately, now I know. 9 years 2 weeks ago #5155

  • 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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Hi Emily. Sorry you are here.

I would not be so quick to say that you have to give up skiing. As long as you have safe counts, you can do whatever you want. Most people can maintain safe counts one way or another.

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Re: Whats ITP? Unfortunately, now I know. 9 years 2 weeks ago #5157

  • hairball01
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Hey Emily, We're all in this together..... some longer than others. But collectively we all have gone thru a lot of medical procedural trials and we have a lot to offer. Feel free to ask most anything that concerns you. But I would encourage you to keep up with the postings at this PDSA web site. There's more information here than you can imagine.

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Re:Whats ITP? Unfortunately, now I know. 9 years 2 weeks ago #5158

  • NatalieM
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Awwww Emily,

I was in your shoes a little over a year ago. Unlike you, I was 22. I can't imagine having to deal with this ITP crap at 16! Bless your heart (I'm from SC, we say that a lot ;) ) It's a great thing that you got your platelets under control for the time being. I definitely agree with Sandi. As long as you have counts in a safe range (which may not always be considered "normal") you can do anything anybody else does! The best thing you can do is educate yourself about this disease. Also, those antibiotics you were on with your strep could have made your counts even lower before you were rushed to the ER. Remember this: you are not alone and you can always come here for support. Good luck with everything!

Natalie
*Here's to high platelets!*

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Re:Whats ITP? Unfortunately, now I know. 9 years 2 weeks ago #5175

  • server
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  • newcreationchangingdaily
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Hi Emily :)
Even though I'm not from SC I too will say Bless your heart! Stay strong girl, it's the only way to be! No, not all the treatments have the undesirable side effects, it depends on the meds and the person. One thing I have learned in my short time here is that everyone reacts differently to everything! That's part of the weirdness of this disorder, no one can put up a set of definative guidelines. And every doctor treats differently. It's kind of a hurry up and wait kind of thing.
I'm sorry you missed your Prom. I know how my daughter would have been if she had to miss hers!
Please stay in contact with us here, there is support for you here.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:Whats ITP? Unfortunately, now I know. 9 years 2 weeks ago #5186

  • Emily
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Thank you all for responding! I guess this has all really been sort of a whirlwind thing, really. I guess I will just have to wait and see how things go. Thank you all very much for your support. I am very glad I found this website, I actually stumbled across it accidentally. I never realized how many people are going through the exact same thing. This is a random question but to those of you who get IVIG's ( well that is prolly almost everyone!) does your hand get really cold? Almost as if you can feel the medicine going up your vein? Its so strange!

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Re:Whats ITP? Unfortunately, now I know. 9 years 2 weeks ago #5188

  • server
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  • newcreationchangingdaily
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Your welcome Emily. That's why we're all here! I don't get ivig but I can understand what your saying. When I get my NPlate shot I can feel it going into my skin. It's a shot like for diabetics. It does feel really strange. I also just stumbled across this site. I forget where even! But am sure glad I found it. Lots of good stuff and support.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:Whats ITP? Unfortunately, now I know. 9 years 1 week ago #5390

  • BethF
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Hey, Emily,
I know you'd rather not have found this site, but welcome anyway!

My younger son (age 13) has ITP and loves to ski, so it's definitely possible to keep that up. Your ITP stay may be a short one, but if not, you'll find a treatment that works. We just check Brady's platelet count a week before we're going skiing and he receives a treatment if he's below 75k and, of course, he ALWAYS wears a helmet.

Brady used to get IVIG pretty regularly and now receives WinRho and he always complains of it feeling cold and weird during the infusion. Sometimes it helps him to get a small heat pack from the nurses and put that on the i.v. site - you may want to try that. And he always receives TYlenol and Benadryl orally - he says they burn when he gets them through the i.v.

Sorry you missed prom, but you'll go next year, right? I also have a 16-year old son (he's a sophomore) - he would be crazy if he missed a basketball/lacrosse/soccer game, so you have all our empathy.

I hope your counts go up soon! In the meantime, keep asking questions.

Beth - mom to Brady (age 13, diagnosed 1/18/02) and Matthew (age 16)
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)

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Re:Whats ITP? Unfortunately, now I know. 9 years 1 week ago #5391

  • BethF
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I meant you'd rather not have NEEDED this site (I know you're glad you found it)!

Beth
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)

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Re:Whats ITP? Unfortunately, now I know. 9 years 5 days ago #5535

  • Lisssssy
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ahhh emily, don't worry, just keep your head up and you'll get through it!
and as for the low count, don't worry too much into it, everyone's body can cope at different levels for different amounts of time, i was at a count of 0 for about 2 weeks, i went to school as normal, until i ran into a phonebox..but yeah, my point is it is possible to live your life with ITP just as much as someone without!
chin up!:)
xx

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Re:Whats ITP? Unfortunately, now I know. 8 years 7 months ago #9122

  • Chloe_Leigh
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Emily.
I was diagnosed with Evan's Syndrome. (A combination of ITP and hemolytis anemia) I took IVIG for a whaile and I totally understand how you feel! I could actually feel the medicine go through my vien and up my arm, it was the strangest thing!!! Lots of unusual things were happening at that time, though!
-Chloe :P

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Re:Whats ITP? Unfortunately, now I know. 8 years 7 months ago #9125

  • juliannesmom
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Emily,
My daughter Julianne does not post here, but she is 16. She was diagnosed just before her 13th birthday. We live in SC, so skiing was always a once a year thing at best for us. Still, the thought of not being able to go was really sad for us. Julianne's sport is volleyball, and she lost her 8th grade season, due to the risk of the balls hitting her head. She had pretty low counts for those months, and it just wasn't safe for her. She learned to love tennis for that time, though, and was pretty good at it. She got back to volleyball as soon as safe stable counts started. Still, she's always hitting her head on something. (I say that, like her mom, she is a "critter of grace.")
Most patients can find ways to keep the counts safe. Some have tried decadron pulses. That didn't work out for Julianne, because the drop after the pulse was too hard on her. Some swear by it, though. IVIG worked well for her, but it's expensive, and you have to be careful of the side effects. (Tylenol and benadryl, and good hydration, before, during, and for two days later can help, as can a bit of decadron in the couple days after.)
Julianne is back to a normal count most of the time now, but, meanwhile, when we couldn't travel and have such active vacations like we once did, we moved back to the country (we missed it), and spent more money on our house to get there. (Meaning, she can ski again, but not sure we can afford to go. It's all a tradeoff, I guess, and life is good all the time, even when life is changing.) If you really can't ski, you can find a sport to enjoy in the meanwhile, but explore safe options for skiing with your doc and parents. Obviously, a helmet is a must. If you're typically a black diamond skier, you may have to try my favorites, the greens, for a while. :) I sincerely hope you can get your counts up high enough to ski again. Hang in there.
Norma

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Re:Whats ITP? Unfortunately, now I know. 8 years 7 months ago #9221

  • 28lorelei
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So sorry to hear about that incident, Emily.
I don't think you will have an issue with the skiing, though. I have had ITP as long as I can remember (it runs in my family) and I live a pretty normal life. So if you just keep your platelet count safe, you'll be fine:)

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Re:Whats ITP? Unfortunately, now I know. 7 years 6 months ago #19846

  • Gemma
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Hi

I'm sorry too Emily that you missed your prom.

My 13 year old daughter was diagnosed 4 weeks ago with a platelet level of 3. She has been told that she doesn't need any medication as her levels should increase by themselves. But there seems a lot of confusion about treatment as some people think she should have medication and others think she shouldn't. It seems no-one really knows.

We are due to go skiing at Christmas, the first time for my daugther. The consultant has said he will give her Prednezone (not sure if that's spelt right) to up her levels so that she can ski (he's a very keen skiier himself!). I'm in a really difficult place as I'm worried about the side effects, particularly the weight gain which could be very difficult for a sporty 13 year old girl especially if she doesn't NEED to take them - there are plenty of years to ski.

Does anyone know whether a) she should be on steroids anyway and b) what the side effects really are like?

I wish, as i'm sure your parents do, that i could suffer the ITP instead.

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