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ptkds

Finally Have A Diagnosis For Dd

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Well, we FINALLY have a diagnosis for my 3 yr old dd. I have posted before about her and her bleeding problems.

Her platelets don't function properly. She also has a Factor VII deficiency and von Willebrands disease. She has two seperate bleeding disorders.

She went through a horribly long test today to confirm the von Willebrands. They had to put in 2 IV's because the first one fell out, and in all they poked her 5 times. She was so ready to get out of there. We were in there for over 4 hours.

So we finally have a diagnosis and we don't have to go back to the hematologist for 6 months!


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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Celiac.com Sponsor (A8):

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I am so sorry she has had to go through so much but so thankful you now have answers. Hopefully there is something the doctors can do to help her now. It has got to be such a relief for you to now understand what is going on with her. I hope her condition improves.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Yes, I agree. I'm sorry she's had to go through all of this but it's good to have an answer with the diagnosis and to know what you are delaing with.

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