Discussions By Condition: I cannot get a diagnosis.

UNDIAGNOSED for the past 8 months!!! HELP!!!

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anasmom
  • September 22, 2009
  • 05:38 PM

We are desperate! We have three children, boys of 16 and 5 years and the little girl, who is 28 months old. Ana was born 14 March 2007, in Dodge City, KS, USA.
Born as a healthy baby, was never sick, developed normally.
All of the overturned "upside down" in her, and our lives, in mid-December last year. Began to vomit, secrete a lot of saliva during sleep, had a dense nasal secretion. All of this lasted 10 days. Doctor said it will pass, that is a virus ...... Then it gradually started to show signs of fatigue and "losing" tone muscle. When I contacted the doctor, he said again that it does not need to bring her in, if there is no temperature, that will pass.
One morning when she woke up, I noticed a light "twiches"of her tip of tongue and 4 toes on her right foot, that fasculateted constantly, except when she goes to sleep, then would disappeared. Now I schedule an examination by doctors. After the review, said that he did not know what could be scheduled with an overview of child neurology. The following day has been given "an attack", we meant that some allergic reactions, but it proved, that the doctors said they had "great convulsion" of 4 hours duration (status epilepticus). was urgently transferred by plane to a larger center, and after 9 days the same, they could not find nothing "wrong "..... its tremors they began to multiply on the lips and fingers right arm and right leg towards the knee. From January to this date(july) she was 6 times in the hospital( Wesley hospital in Whichita, Childerns Mercy, Kansas City, Washington University, St. Louis, ........... they did all the genetic, toxicological, neurological, metabolic, infectious tests ... but nothing find wrong again..She had her MRI, LP, CT, MIBG, EEG, muscle and skin biopsy..and nothing wrong. In April it happened again, "big attack", which again ended 4 hours convulsions (status epilepticus), and again the plane moved to another larger center, and again are still there doing a search, but nothing was found. From April, she can't stand,, do not walk, do not sit, because the last convulsion was drained her completly out. She has her appetite, eat well, but she is not gaining any weight ............. doctors say that she is in a very serious situation and that may not survive.We are, of course desperate ........... we are not satisfied, because we have no diagnosis for it, and thus there is no adequate treatment. U.S. medicine is failed, but it is not clear to me that in addition to such a precise technology that was used to test our daughter, they couldn't find nothing. We left to please the people, like you to help us to see, to try to say to us, and give any further information about the health of our little girl. Please try to help !!!!!!!!
I believe that somewhere, someone there HAS to be who has heard or seen something similar, and that can help.
We thank you for any respond!


I forgot to say that the flicker( tremor, fasculation) of her tongue, lips, fingers on hand, right foot and left hand are constant, except when she is sleeping, everything disappears. Moment when she is awaking, flickering starting again and it is so constantly in the last 6 month.
THANKS A LOT FOR YOUR PRECIOUS TIME AND YOUR RESPONSE!!!

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4 Replies:

  • You may want your house or apartment checked for mold and check the air quality. It may be possible of mold toxins. There are very helpful websites on symptoms of black mold exposure.....hope this helps.We are desperate! We have three children, boys of 16 and 5 years and the little girl, who is 28 months old. Ana was born 14 March 2007, in Dodge City, KS, USA. Born as a healthy baby, was never sick, developed normally. All of the overturned "upside down" in her, and our lives, in mid-December last year. Began to vomit, secrete a lot of saliva during sleep, had a dense nasal secretion. All of this lasted 10 days. Doctor said it will pass, that is a virus ...... Then it gradually started to show signs of fatigue and "losing" tone muscle. When I contacted the doctor, he said again that it does not need to bring her in, if there is no temperature, that will pass. One morning when she woke up, I noticed a light "twiches"of her tip of tongue and 4 toes on her right foot, that fasculateted constantly, except when she goes to sleep, then would disappeared. Now I schedule an examination by doctors. After the review, said that he did not know what could be scheduled with an overview of child neurology. The following day has been given "an attack", we meant that some allergic reactions, but it proved, that the doctors said they had "great convulsion" of 4 hours duration (status epilepticus). was urgently transferred by plane to a larger center, and after 9 days the same, they could not find nothing "wrong "..... its tremors they began to multiply on the lips and fingers right arm and right leg towards the knee. From January to this date(july) she was 6 times in the hospital( Wesley hospital in Whichita, Childerns Mercy, Kansas City, Washington University, St. Louis, ........... they did all the genetic, toxicological, neurological, metabolic, infectious tests ... but nothing find wrong again..She had her MRI, LP, CT, MIBG, EEG, muscle and skin biopsy..and nothing wrong. In April it happened again, "big attack", which again ended 4 hours convulsions (status epilepticus), and again the plane moved to another larger center, and again are still there doing a search, but nothing was found. From April, she can't stand,, do not walk, do not sit, because the last convulsion was drained her completly out. She has her appetite, eat well, but she is not gaining any weight ............. doctors say that she is in a very serious situation and that may not survive.We are, of course desperate ........... we are not satisfied, because we have no diagnosis for it, and thus there is no adequate treatment. U.S. medicine is failed, but it is not clear to me that in addition to such a precise technology that was used to test our daughter, they couldn't find nothing. We left to please the people, like you to help us to see, to try to say to us, and give any further information about the health of our little girl. Please try to help !!!!!!!! I believe that somewhere, someone there HAS to be who has heard or seen something similar, and that can help. We thank you for any respond! I forgot to say that the flicker( tremor, fasculation) of her tongue, lips, fingers on hand, right foot and left hand are constant, except when she is sleeping, everything disappears. Moment when she is awaking, flickering starting again and it is so constantly in the last 6 month.THANKS A LOT FOR YOUR PRECIOUS TIME AND YOUR RESPONSE!!!
    Chevy2413 12 Replies
    • September 22, 2009
    • 11:00 PM
    • 0
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  • There is a doctor in New York who specializes in black mold exposure his name is http://unjobs.org/authors/eckardt-johanning, http://www.fungalresearchgroup.com/new%20mold%20and%20children.htm. I really hope that this will help. My prayers are with you and your family.You may want your house or apartment checked for mold and check the air quality. It may be possible of mold toxins. There are very helpful websites on symptoms of black mold exposure.....hope this helps.
    Chevy2413 12 Replies
    • September 23, 2009
    • 01:21 PM
    • 0
    Flag this Response
  • We are desperate! We have three children, boys of 16 and 5 years and the little girl, who is 28 months old. Ana was born 14 March 2007, in Dodge City, KS, USA. Born as a healthy baby, was never sick, developed normally. All of the overturned "upside down" in her, and our lives, in mid-December last year. Began to vomit, secrete a lot of saliva during sleep, had a dense nasal secretion. All of this lasted 10 days. Doctor said it will pass, that is a virus ...... Then it gradually started to show signs of fatigue and "losing" tone muscle. When I contacted the doctor, he said again that it does not need to bring her in, if there is no temperature, that will pass. One morning when she woke up, I noticed a light "twiches"of her tip of tongue and 4 toes on her right foot, that fasculateted constantly, except when she goes to sleep, then would disappeared. Now I schedule an examination by doctors. After the review, said that he did not know what could be scheduled with an overview of child neurology. The following day has been given "an attack", we meant that some allergic reactions, but it proved, that the doctors said they had "great convulsion" of 4 hours duration (status epilepticus). was urgently transferred by plane to a larger center, and after 9 days the same, they could not find nothing "wrong "..... its tremors they began to multiply on the lips and fingers right arm and right leg towards the knee. From January to this date(july) she was 6 times in the hospital( Wesley hospital in Whichita, Childerns Mercy, Kansas City, Washington University, St. Louis, ........... they did all the genetic, toxicological, neurological, metabolic, infectious tests ... but nothing find wrong again..She had her MRI, LP, CT, MIBG, EEG, muscle and skin biopsy..and nothing wrong. In April it happened again, "big attack", which again ended 4 hours convulsions (status epilepticus), and again the plane moved to another larger center, and again are still there doing a search, but nothing was found. From April, she can't stand,, do not walk, do not sit, because the last convulsion was drained her completly out. She has her appetite, eat well, but she is not gaining any weight ............. doctors say that she is in a very serious situation and that may not survive.We are, of course desperate ........... we are not satisfied, because we have no diagnosis for it, and thus there is no adequate treatment. U.S. medicine is failed, but it is not clear to me that in addition to such a precise technology that was used to test our daughter, they couldn't find nothing. We left to please the people, like you to help us to see, to try to say to us, and give any further information about the health of our little girl. Please try to help !!!!!!!! I believe that somewhere, someone there HAS to be who has heard or seen something similar, and that can help. We thank you for any respond! I forgot to say that the flicker( tremor, fasculation) of her tongue, lips, fingers on hand, right foot and left hand are constant, except when she is sleeping, everything disappears. Moment when she is awaking, flickering starting again and it is so constantly in the last 6 month.THANKS A LOT FOR YOUR PRECIOUS TIME AND YOUR RESPONSE!!! Has anyone tested your little girl for Parkinsons Disease? Sounds like she has some of the symptoms. Hope you can find out something soon and GOD BLESS!
    Anonymous 42789 Replies
    • September 24, 2009
    • 04:34 AM
    • 0
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  • Do u rent or buying ? Eather way get out of the house!!!!!!!!!!!!!!!!!!!!!have some one test for mold did u tell the doctor about the mold ? Tell them to sent u all to a allergy&asthma immunology doctor right away or this could lead to heath problems.
    Anonymous 42789 Replies
    • December 21, 2009
    • 07:04 PM
    • 0
    Flag this Response
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