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13 with ITP

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13 years 10 months ago #11321 by Iamcrazy
13 with ITP was created by Iamcrazy
My name is Gwyn and I am 13. I was just diagnosed with ITP. I'm 13! We went to the doctor because I got petechia from crying all around my eyes. We got some blood work done and now I know that I have ITP.I used to cut and what if that caused that? I am so afraid. Last year my teacher died of cancer and several of my brothers friends died in some car accidents. I feel very alone. Why do I have this? I just need some support. I feel lost.

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  • 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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13 years 10 months ago #11322 by Sandi
Replied by Sandi on topic Re: 13 with ITP
Hi Gwyn. I'm sorry, I don't know what you mean by "cutting causing this". Cutting what?

ITP can seem scary, but most people with ITP live a normal life span. Very few people ever die from ITP, especially if you can get your counts up from treatments. In that case, there is nothing to worry about.

No one can really tell you why you have it. It's thought to be caused by a hereditary predisposition and something came along to trigger it, like a cold or a medication that you took. It could be acute, meaning that it will go away after a period of time.

My sister had ITP when she was 16, but it went away after a year and never came back. She is now 44 years old. That could happen to you too.

Try not to worry. You'll be okay.

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13 years 10 months ago #11324 by
Replied by on topic Re: 13 with ITP
Sandi, I'm pretty sure she's talking about cutting, as in self-injury. It's pretty common among teens, and is a way some of them try to cope with the pain of strong emotions, intense pressure, or relationship problems. They often feel like things are too much to bear, or are in a bad situation that they think can't change. Cutting might help them feel more in control or give them some relief from the pain.

Gwyn,

You aren't alone. There are a lot of other kids right around your age that have ITP, and, as Sandi said, many get over it in a short time. Not so many of the kids post here, but a lot of their moms do. Hopefully some of the kids will see your post and contact you. I think it does help to talk to someone else who's going through the same thing as you are.

And, I am certain that your cutting did not cause this. I am a homeopath, and I've worked with a number of adolescents that were also cutters, and not one of them got ITP. But, I do think it's quite possible that the underlying reasons for your cutting may have triggered it. It sounds like you've had a number of intense events to deal with. Those things are difficult to confront, even for adults. And, you're 13. let's face it, early adolescence, everyone's a little mixed up and emotional! It's just the way it is, but fortunately, you will get older, and it will get better--really! Feeling alone in whatever you're dealing with is almost a given at your age. And, of course I am sure it looks like everyone else is going through life smoothly. I guarantee that isn't the case. All of us adults have been there, believe me.

My daughter was 12 when she got ITP, and I do think it came on after she was also faced with a very traumatic event. She was caught at almost the center of one of the biggest wildfires in Southern California history. There was a firebreak around the house, so the kids were lucky to survive it. But, her friend's mom's house (about a mile away), was totally destroyed, along with all of her pets, that my daughter was really attached to. It was a harrowing experience, too, to be evacuated through the miles of completely charred land, with not a speck of green or life remaining, just to have to be evacuated a second time, when the fires threatened where they were taken to. My daughter never wanted to talk about it, and I thought she was handling it okay, because she never cried or seemed upset like some of the other kids had. But, that's when her behavior started becoming really awful. She wasn't easy to live with. I thought it was just puberty kicking in. Six months later she was diagnosed with ITP at 5k platelets, but looking back, we are fairly certain that she had had it for awhile.

My daughter did not respond to any of the treatments that we chose to try, and had severe reactions to the one's we did try, yet they still didn't bring up her platelets. I then treated her homeopathically, and she went from 11k to 411k in 4 days, and has been in normal range since then (6 1/2 years ago). But, I always said that even though ITP was a scary thing to have to go through, it was a blessing in disguise, because in treating her ITP, we also found an answer for her extreme sensitivity and bad behavior, as well as some longstanding health problems. That almost magically changed within the first day of giving her her remedy. I think you'll find that is a common symptom of ITP, too, that a lot of doctors don't acknowledge, but most ITP patients will--that of feeling very fatigued, depressed, crabby and emotional when your platelets are low. I am sure you'll start feeling better when yours come back up. I hope that maybe through dealing with the ITP, that you'll get the attention that you need to deal with all of these other things, too.

This is a good place to learn and read about ITP. You can read lots of people's different experiences, and the more knowledge you have, the less scary it will become. One thing to add: were you put on any kind of medication by a psychiatrist, because of your cutting? If you were, that should be investigated as to a possible cause of the ITP, as many of those drugs can have the effect of lowering platelets. Be sure and tell your hematologist this, if you haven't already. There are many, less dangerous and more effective ways of dealing with it, that won't give you side effects.

Please keep us updated, Gwyn

April

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  • 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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13 years 10 months ago #11339 by Sandi
Replied by Sandi on topic Re: 13 with ITP
I was hoping that wasn't the case.

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13 years 10 months ago #11383 by juliannesmom
Replied by juliannesmom on topic Re: 13 with ITP
Gwyn,
First, cutting did not cause this, and nothing you did caused it, but cutting could have bad consequences now that you have ITP, so please don't do it. Second, I'm sorry you find yourself with ITP, but it can be managed. My daughter was nearly 13 when she was diagnosed, and we had a rollercoaster of a first year. Even with ITP, life is good, just sometimes different. My daughter is now almost 17, and has normal or near normal counts for the last two years. No specific treatment did that, her body just started righting itself. Keep up hope, and keep coming here with your questions or just venting, because these folks understand what you're going through, and they will be there for you. This site was really a sanity saver for me when I was scared to pieces for my daughter. Also, drugs (even those prescribed by doctors) cannot cause ITP. They can lower platelets, but that's pretty rare. ITP is a diagnosis of exclusion, made after exploring other reasons for platelet decreases, and based on blood counts that show other particles being normal. You need to consult a hematologist if you haven't already been referred, as they are the ITP experts. You do need to make sure any doctor managing your ITP knows about medications and other conditions. The cutting should be revealed, and they'll give you confidential space in which to do that. ITP and depression seem to go hand in hand, and you need to talk with your doctor about that, because he/she really can help with that. Take care of your body with good sleep and decent food. That won't necessarily "cure" ITP, but it will make you healthier and better able to withstand the effects of ITP. Get enough vitamin C; a little extra doesn't hurt. It can help with bruising and small bleeds by making the capillaries stronger. Hang in there, and know that all of us care about you.
Norma

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13 years 10 months ago #11462 by Rhiannon
Replied by Rhiannon on topic Re: 13 with ITP
Hi Gwyn
I hope you are feeling a little bit better from reading the good posts on here.

First of all I want to reassure you that Cutting does not cause ITP. The only problem I think you will have that if you cut when the platelets are low you will find it harder to stop the bleeding. I really hope you have a good heamatologist doctor and can tell them about the cutting so that if you did cut when platelets are low they will help you heal it. That will be your only problem with the two as far as I can see.

I happen to do voluntary work with an organisation called MIND in England and am aware of cutting and hence feel qualified to reassure that cutting does not cause ITP.

Sadly it is common amongst teens though it is far less tabboo than it used to be. Well done Gwyn by the way for sharing it on here.

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13 years 8 months ago #14203 by iam4ual
Replied by iam4ual on topic Re: 13 with ITP
April, what type of Homeopathic remedy did you use for your daughter? I would love to try whatever you used. I was recently DX and have decided before getting my spleen removed I want to try natural. I am going to go to a homeopathic Dr but obviously what you used on your daughter has worked. Can you help me? I also have hashimotos thyroid and slight high blood pressure. My Hashi is getting under control I will know better this week when I get blood work. My pressure is under control when I do not have to take steroids. I will be glad to email you any information to help.
Thanks
SHannon

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13 years 8 months ago #14226 by
Replied by on topic Re: 13 with ITP
Hi Shannon,

It's very unlikely that the remedy I gave my daughter, would help you, because homeopathy, to be effective, must be specific to each patient. That's why a homeopath will spend literally, hours with you in the initial interview, as they try to understand you as a person, and what makes you tick. There is not some magic remedy that will cure all cases of ITP. And, sometimes, finding the specific remedy that will help a particular patient can take awhile.

You can read my daughter's story (and the remedy I gave her) on this thread in the Original Forum, Adult section, Natural Treatments, under a thread called "Homeopathic Doctor":
discuss.pdsa.org/topic.asp?TOPIC_ID=23985

If you read through the various posts following, you can learn quite a bit about homeopathy and how it works.
Where do you live? I may be able to refer you to a good homeopath in your area.

Wish you luck,
April

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  • 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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13 years 6 months ago #15610 by Angel85
Replied by Angel85 on topic Re: 13 with ITP
Hi Gwyn,

I can tell you haven't posted anything else, but I hope your feeling a little better and a little less alone now. I don't believe cutting would have cause this at all, it is something that could be extra dangerous to someone with ITP mainly because if your counts are low and you cut, it will probally make the bleeding harder to stop. I hope you'll stop by again and let us know how your going.

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8 years 9 months ago #53468 by ALXNDR
Replied by ALXNDR on topic 13 with ITP
Hey, ITP isnt your fault. I went through the same phase you are. Its ok. I might make a website about my experience soon, so you can contact me on that.

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