Discussions By Condition: Medical Errors

Please help my little girl!!!!!!

Posted In: Medical Errors 7 Replies
  • Posted By: Anasmom
  • September 22, 2009
  • 07:39 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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7 Replies:

  • 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!!! I am so sorry for your pain and your experience! I wish I knew an answer to give you but I do not. With your permission I will send your story to every person I know and ask that they do the same. I know a few doctors but I doubt that they are any more qualified than the doctors you have seen. Washington is a good hospital and research center. I am in Oklahoma. Washington is better than our facilities but I will try. Have you considered, do you have the money and resources to travel to a larger hospital such as Johns Hopkins, Mass General, UCLA, or Mayo Clinic? I don't know that they would be able to help any more...she has been tested so much already but maybe someone would have more insight.Was Ana tested for encephalitis, Tuberous Sclerosis (TSC) or Lennox-Gastaut Syndrome also called Lennox Syndrome? Is she on medications? Are Ana's seizures febrile seizures? Is it complex partial status epilepticus or absence state epilepticus? Have you traveled out of the country? If so was it close to the onset of symptoms? If so I would look a lot more closely at the infectious disease route. I know an infectious disease doc but again Washington is a top notch university and medical center? Is that where they did her MRI? Different facilities will have different and better equipment. That is why I ask.If you have not already you might want to look at these websites www.epilepsyfoundation.orgwww.pediatricneurology.com/seizures.htmI will do nothing without your permission so I will be waiting and checking this until you reply and tell me to go ahead. I have a friend who has connections at several of the institutions I mentioned. I can make no promises nor can she but the best we can do is get your story out there.I do not pray necessarily and am not much of a person of faith but I will do what I can.I will be waiting for your response. No baby should suffer like this!!!!!!!!!Krystal
    Krystal D 26 Replies
    • September 29, 2009
    • 10:19 PM
    • 0
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  • I am so sorry for your pain and your experience! I wish I knew an answer to give you but I do not. With your permission I will send your story to every person I know and ask that they do the same. I know a few doctors but I doubt that they are any more qualified than the doctors you have seen. Washington is a good hospital and research center. I am in Oklahoma. Washington is better than our facilities but I will try. Have you considered, do you have the money and resources to travel to a larger hospital such as Johns Hopkins, Mass General, UCLA, or Mayo Clinic? I don't know that they would be able to help any more...she has been tested so much already but maybe someone would have more insight.Was Ana tested for encephalitis, Tuberous Sclerosis (TSC) or Lennox-Gastaut Syndrome also called Lennox Syndrome? Is she on medications? Are Ana's seizures febrile seizures? Is it complex partial status epilepticus or absence state epilepticus? Have you traveled out of the country? If so was it close to the onset of symptoms? If so I would look a lot more closely at the infectious disease route. I know an infectious disease doc but again Washington is a top notch university and medical center? Is that where they did her MRI? Different facilities will have different and better equipment. That is why I ask.If you have not already you might want to look at these websites www.epilepsyfoundation.orgwww.pediatricneurology.com/seizures.htmI will do nothing without your permission so I will be waiting and checking this until you reply and tell me to go ahead. I have a friend who has connections at several of the institutions I mentioned. I can make no promises nor can she but the best we can do is get your story out there.I do not pray necessarily and am not much of a person of faith but I will do what I can.I will be waiting for your response. No baby should suffer like this!!!!!!!!!KrystalAna's Mom - I don't know if you have given up checking this forum or not but I am checking every day for your response. And waiting for the green light from you to continue with what I proposed in my previous post. I hope and pray that Ana is doing as good as she possibly can be under the circumstances and my heart goes out to her, you and your family!!! Patiently waiting...Krystal
    Krystal D 26 Replies
    • October 3, 2009
    • 02:39 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!!! Check with the learning channel TLC. They do a show called m"Mystery diagnosis". Some of these symptoms seem familiar to me from one of their shows. I unfortunately don't remember the diagnosis and I don't know if they have an archive of shows on their website or some contact info. You may be able to match some of the symptoms up and go from there.I hope so. Remember that doctors are only human so just keep looking and try different doctors to repeat tests if you can. Sometimes results are read wrong or are borderline for certain illnesses and therefore not diagnosed! Best of luck!
    Anonymous 42789 Replies
    • October 21, 2009
    • 01:30 AM
    • 0
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  • Sounds similar to what my brother had. Spinal Muscle Atrophy. There are 4 types of it. Type 1 (Acute, infantile) and 3 others. My brother had type 2. He died in 1977 when much less was know about the disease. You need to go see a geneticist about this. Seems to be some type of neuro-muscular disease. Email me if you have any questions.. tonyakelley_st@yahoo.com
    Anonymous 42789 Replies Flag this Response
  • This certainly sounds neurological. I would find a good neurologist in your area and give him every detail you can. Bring all records with you from the other doctors you've seen. These sound like partial complex seizures....but I think you are saying the baby does this the entire time she is awake. There was a show on TLC or Discovery that was Exactly like this....like someone said above...it was the exact same symptoms and it was caused by something VERY simple...check into it! Good luck.
    Anonymous 42789 Replies Flag this Response
  • Just a thought, I'm hoping with all the tests they have performed, that they tested your little girl for Celiac Disease. It is a simple little blood test. Celiac Disease leads to failure to thrive in children, tremors....there are over 200 known symptoms of Celiac. It is an intolerance to wheat, rye and barley : GLUTEN. I have been sick for 10 years, been to neurologists, fertility doctors, allergists, specialists of all kinds. 3 months ago I REQUESTED a Celiac test. It was positive, and my health is dramatically improving. Hoping for something so simple for your beautiful little girl.
    Anonymous 42789 Replies Flag this Response
  • HiBelieve me my 2yr old has been though all them test and more. they found her to have CDKL5, look it up on line and see if it fits your daughter, diagnosis is a simple blood test.Best of luckmandy
    Anonymous 42789 Replies
    • January 12, 2011
    • 11:19 PM
    • 0
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