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Dd Has 2 Bleeding Disorders . . Need Prayers

ptkds

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ptkds Community Regular
ptkds
Posted

I just got a call from my dd's hematologist. We have have been taking her to one because she has lots of bruises, bleeding gums, and a few small nose bleeds. After 3 rounds of tests, we finally have a possible diagnosis.

1. a Factor VII deficiency, possibly caused by a Vitamin K deficiency due to her Celiac disease. She took oral Vit. K for 2-3 weeks with no changes. She may need Vit. K shots and more testing to determine why she isn't able to absorb Vit. K.

2. Bernard-Soulier syndrome. This isn't confirmed yet, but the hematologist and pathologist both feel that she has it. She needs one more special test to confirm.

Overall, her platelets are not functioning normally. So if she were to get a head injury or another serious injury, she can bleed to death or develop a hemorrhage in her brain. I am so scared right now. I will always be worried if she falls and hits her head or something. She is barely 3, and she has a speech delay, so she can't really tell me how she feels yet.

Please please please pray for her. I am so worried about her and her future. She is in for a lifetime of needles and pain.

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ShayFL Enthusiast
ShayFL
Posted

How awful for you and for her. Prayers going up. Stay strong.

Joni63 Collaborator
Joni63
Posted

Sending prayers your way!

Are there medicines that can help with the Bernard-Soulier Syndrome?

Ursa Major Collaborator
Ursa Major
Posted

I am sorry that your daughter has those problems, and I will pray.

About the vitamin K: Two weeks on vitamin K supplements may not be enough to see a measurable difference. Here is a link to find out which foods contain the most vitamin K Open Original Shared Link

I hope that she doesn't have Bernard-Soulier syndrome. I read that only a lab specializing in it will be able to tell for sure. So, if the current tests show it is a strong possibility, insist that her blood be sent to a lab specializing in the disorder, to make sure her diagnosis is correct.

Bernard-Soulier syndrome is genetic, and both the parents have to carry the gene for a child to get it. Do you see evidence of that disorder anywhere else in either your or your husband's family? It is a rare disorder (one in a million), and it is even rarer for somebody to get it with only one parent carrying the gene.

The vitamin K deficiency can be fixed, even if you have to resort to injections in the end. All your daughter's symptoms could be caused by just the vitamin K deficiency. Lets hope and pray that is all it is. But if it isn't, you will learn to deal with it, even though it would be hard.

Aleshia Contributor
Aleshia
Posted

my sister has ITP and the naturopath said the only thing she found to bring up the platelets was sesame oil... I don't know if what your daughter has is anything to do with platelets but you could maybe try and see if the sesame oil would help it? I think they said about a teaspoon a day

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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