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Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Lucy West
  • February 4, 2008
  • 07:23 PM

My daughter is 12. she has had blood coming out of her mouth for months she is not throwing it up it just pools out. i have taken her every where. she now has started to pass out with pools of bed.(we try not to leave her alone at all) now we have chest pain, headaches, rapid heart beat, and finger numbness. because i have had her to so many drs and to detroit childrens hospital and they cant find a diagnosis they are calling it Munchausens. so now i am stuck with no where to take her. i have great lawyer and have taken a psych profile. CPS is investigating me. no one will help and the more i try the worse i look. any ever heard of anything like this or have any advice? i have 2 children i am afraid to lose and she will never get help.

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  • Im really sorry to hear about the situation you are in with your daughter, it reminds me of a bad situation I was in with my daughter when she was a baby. My daughter when a baby had a hemorraghage (sp?) and choked on her own blood and died (needed CPR to revive her and the bleeding actually sprayed our car with blood..it was all over her face, in her mouth and coming out of her nose). At first, we (her parents) were blamed by the doctors and investigated by the police who tried to keep us away from our child (later we were put under observation while she was in hospital). The doctors never could work out why the bleeding occurred and why she lost so much blood. After more than a week, of being secretly observed with her. They decided to allow us to take her home.. If she had died, I truely believe we would of been charged and the blame laid on us as they just couldnt work it out. She's 16.5 yrs old now and recently (only mths back) we finally found out the cause!!! (after over 16 yrs later!!). It turns out, in her case, that in her nose, she only has a couple of little layers of skin covering up her blood vessels there. These blood vessels must of ruptured and caused her haemorrhage. The doctors now are talking about her maybe needing a skin graft there to cover the vessels.
    taniaaust1 2267 Replies
    • February 5, 2008
    • 10:10 AM
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  • sorry i couldnt help but post again... its weird as my daughter also gets your daughters other symptoms.. headaches, chest pain and i think she has once said she had numbness in her fingers too. (she gets a lot of aches and pains). I cant see how thou that could of been connected to her lacking skin to cover vessels in her nose.
    taniaaust1 2267 Replies
    • February 5, 2008
    • 10:18 AM
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  • I am so very sorry that this could happen.That you are being a loving mother and taking your daughter to wherever it takes to find whats causing her symptoms and that someone would accuse you of having Munchausens.How hard it must be for you to have a daughter who is sick and then also have people saying these things.I find this unbelievable and i believe people like this shouldnt be allowed to work in health care.Im glad you have a good lawyer.Has your daughter been tested for vitamin k deficiencycarcinomaHantavirosisViral Hemorrhagic Fevers heavy metal levels eg:arsenic,mercury,leadWhat abnormalities have showed up in her tests so far?
    Anonymous 42789 Replies
    • February 5, 2008
    • 02:34 PM
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  • I am so sorry you are going through this. You sound like a very caring mom. The only advice I can give is to take her to another facility (a teaching facility) that has a hematologist that subspecializes in bleeding disorders, if there is such a person. It sounds like the doctors have been thorough, but that does not mean that they have checked your daughter for every possible thing that could lead to bleeding.I'd get copies of all of her records and spend some time summarizing them into a few pages to bring to the next hematologist. Summarize all of her labs and studies as succinctly as possible and also maybe have a page listing out her past medical history in bullet form. For the labs and test results, be sure to include the reference (normal) ranges as well as your daughter's values.Here's some things that they should have/may have checked for:-low platelets-abnormal platelet function-vitamin K deficiency-liver disease-coagulation factor deficiencies, including Factors XIII, V, VII, X, XI, II, -consumptive coagulopathies, including disseminated intravascular coagulation-presence of inhibitors to coagulation factors, such as antibody to factor VIII-vasculitis-scurvy-pseudoxanthoma elasticum-Ehlers-Danlos syndrome-hereditary hemorrhagic telangiectsia (Osler-Weber-Rendu syndrome)-Henoch-Schonlein Purpura-Immune thrombocytopenic purpura-thrombotic thrombocytic purpura-B12 or folate deficiency-Alport's syndrome-Fanconi's anemia-May-Hegglin anomaly-TAR syndrome-Wiskott-Aldrich syndrome-aplastic anemia-malignancy-myelodysplasia-HIV-Lupus-anti-phospholipid syndrome (usually causes clotting)-medication or aspirin side effect, also some herbs can interfere with clotting-Bernard-soulier syndrome-Glanzmann's thrombasthenia-storage pool disease-Hermansky-pudlak syndrome-Chediak-Higashi syndrome-gray platelet syndrome-Von willebrand's disease-Hemophilias-amyloidosis-acquired factor VIII inhibitor-low fibrinogen levelsThere are probably more things it could be. I'm not sure what the list for this site would show (type in bleeding as a symptom and see what they come up with for a list of possible causes)A lot of these things are complicated to test for, and many of them probably have been ruled out by previously done labs...The thing is- if they missed one, it is their error and they should certainly not be accusing you of child abuse. Hopefully your daughter is old enough to tell them that she is not bleeding from any sort of abuse or munchaussen's.You might want to take her into the doctor when she is actively bleeding so they can see you are not making this up.Good Luck to you.
    Anonymous 42789 Replies
    • February 6, 2008
    • 09:32 AM
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  • It still could the problem with the thin skin in the nose over a vessel, especially if that vessel is a large one. Here's my story :When I was a kid 10 and at 16 I kept having bleeding from there too and sometimes my head pounded and tingled, fingers went numb, and my heart pounded as well. It would bleed & bleed day after day sometimes & not quit for several months. Later I found it was because when that much blood comes from directly by the brain (the brain being in back of the nasal passages) it'll affect those areas of the body as well with "funny symptoms" (the reason : a lot of blood rushing through the areas really fast! In other words, a lot of blood rushing through these areas quickly will do that because those vessels are all connected to the body). A good doctor suggested using a q-tip to lubricate my nasal passages with vasoline (petroleum jelly) 3 times a days to keep the dryness from cracking that thin skin (and get the q-tip way in there too, deep inside & get all inside the nasal passages-keep doing this routine to keep it away for good); it worked! Now I don't get it anymore!It was all just thin skin over the vessel(s) and dryness in the nasal passages causing it to crack real bad and then the vessel(s) pops open and is even hard to stop for about 15 or more minutes when I tried to stop it by holding mynose shut. WOW, I'm glad vasoline was invented. Makes me giggle to think people can dry skin in the nose too, but they can.Feel better about your child, it'll be ok soon enough :)From,B H
    Anonymous 42789 Replies
    • February 6, 2008
    • 07:20 PM
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