Discussions By Condition: Medical Errors

fragile x

Posted In: Medical Errors 1 Replies
  • Posted By: kamsae
  • January 14, 2007
  • 08:38 PM

my daughter was almost 4 years old and just started pre -k when she "switched" off. her speech deteriorated rapidly-within 3 weeks she became mute. she had tremors and crying spells, and put her hands in akward positions. the doctor said she was healthy but most likely was having a stress related psychotic break. i didnt know that could happen so young. i took her out of school and kept her calm- she was normal again in 6 weeks. a few months later she started acting out, had frequent depression, anger, tantrums, over sensitive, not listening, fatigued,crying spells. screaming and arguing were the worst. she was very stuborn and disobedient. this was the oppsite of my child as a knew her. i brought her to the doctor numerous times and was told to keep discilpining because she was "just testing me". she brought me to tears constantly with frustration. my sister has disabled kids from a genetic disorder called Fragile X. it causes these kinds of problems and more. because my father had it- she said i do too, and my daughter was most likely suffering from this. i went back and asked the doctor for the test and a refferal to therapy, she refused! she said i needed to take parenting classes. wow, that hurt. a second opinion doctor said he did not believe we had it because of our inteligence being high, but he would approve therapy and order the blood tests if it would ease my worries. 3 weeks later the results said yes- she is a fragile x premutation of 150. from this diagnosis we were able to find out about the related symptoms which are sensory integration (why she screams and is irritable) bipolar disorder ( why shes moody, crying, hyper, argumentative) Obsessive compulsive disorder ( why she's so distressed with food, clothes, whining etc). this education also showed us how to handle it (not through more discipline!)
the strangest thing about this was that as a child i had all the same symptoms but was misdiagnosed as adhd, oppositional behavior disorder, borderline personality disorder- and to a few doctors- just plain *******e syndrome.

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  • Wow I am sorry to hear about your ordeal, but not surprised. Have you heard of Cranial Sacral Therapy? It is a very gentle yet powerful form of massage and deals with the rhythm of the cerebral-spinal fluid in the body. This therapy works magic on young children, from behavioral difficulties to ADD to Autism. You daughter has a genetic disorder, but CST may really help her and most kids enjoy the treatment. Google this and you might find a practitioner near you. Also, does your daughter take any supplements? I would recommend a good quality vitamin/mineral supplement as well. Wishing you well.Doctor of Oriental Medicine
    acuann 3,080 Replies
    • January 15, 2007
    • 01:49 AM
    • 0
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