Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dd Has 2 Bleeding Disorders . . Need Prayers

ptkds

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748
    ZENken
    Newest Member
    ZENken
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.