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Old 04-12-2005, 06:04 PM
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Hemophilia

My daughter has been suffering with terrible nosebleeds since she was a small child. Several doctors/pediatricans have told me that it's her allergies/asthma or sinus infections that cause it to happen.

Over the past year and a half, she's had at least 2 every day. And not just a little nosebleed, but an all out gusher that seems to never quit.
I decided to take her to another pediatrican, who says that many nosebleeds is NOT normal at all, even for a child who has chronic sinusitis and allergies. I noticed she was sort of pale and feeling bad more often than not but I didn't ever think she was anemic.

Her new pediatrican did some blood tests and said she has a very low red blood count and also her clotting time wasn't right. He is ordering more tests for her and he suspects she may have hemophilia.

He is giving her iron supplements right now and so far today, she's had 2 major nosebleeds.

She also has asthma and right now with the season changing, her asthma is just going full force. She's having to take her nebulizer (breathing) treatments every 3 hours and is currently taking prednisone.
My son has asthma also, but thank God his isn't acting up so badly right now.

I'm about at my wits end, I feel helpless because my daughter is going through this and I can't fix it. And I feel even worse that I allowed her to have anemia for several months and didn't even catch it even though I knew she was looking pale and acting tired all the time.

Does anyone have any knowledge of hemophilia? And are there any others here with asthmatic children?

How do you handle it this time a year when everything is blooming?
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Old 04-12-2005, 07:14 PM
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My dh is a hemophila/vonburen SP? Does anyone in your family have it? Its passed on through the woman. If that is what it is I am surprised it took this long to diangnose. My spelling is terrible tonight, but dh was diagnosed when he started cutting teeth.
So maybe its not that?
If you pm me I will try to answer any specific questions you may have. Good luck you and your dd.
Leighann
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Old 04-16-2005, 09:27 AM
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I dont have any experience with that problem but if you would like to talk my nutritionist I am sure she could offer you some great advise. I have seen her help many people. You can contact me at [Edited]

Linda



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Old 04-16-2005, 09:53 PM
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My brother has Von Willibrahns. Which is a rare form of Hemophilia. His started out as nose bleeds also. He controls his with the foods he eats and he also has to take a special med when going to the dentist. He is now having some problems with his joints but I think that is due to his nutrition as well as the hemophilia. Good luck with it.
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Old 04-16-2005, 11:52 PM
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Dear Pixiedust,

I have Christmas disease and Von Willebrand's disease. My mom was like you, going crazy over the nose bleeds and no one expected a girl to be a bleeder.

My hemophilia was found when I was 7. I had to have a blood transfusion because I lost a baby tooth and couldn't hold a clot long enough to heal properly. I bled for a month and I had to sleep with a Kotex in my mouth so I wouldn't swollow too much blood. It took 3 months in children's hospital before I was finally tested for hemophilia. We found out that my father had hemophilia and my mother was a carrier.

There are a lot of different types of blood disorders and many different types of meds. Your blood doctor has lots of options.

The best thing that happened to me was that my doctor put me in charge of my bleeding. I had to take thromboplastin shots every time I bled, a few times a week, and they hurt! I kept trying to hide the fact that I was bleeding again and they were afraid I would bleed to death. After I had control I knew it was up to me and I never hid again.

My 1st blood test the nurse said we needed to make sure that my blood was not green. To this day I still watch my tests and smile at the memory of checking for green blood.

Your daughter can live a long normal life with todays knowledge of the diseases that cause bleeding problems. I'm 56 and gave birth to 3 children. Work with your doctors and let your daughter have as much control as you can.

Love & Prayers,
Linda
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