Discussions By Condition: I cannot get a diagnosis.

New...looking for guidance to help my daughter

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: SherlockMomma
  • October 9, 2010
  • 05:07 AM

:)Hi Everyone. Obviously I am new here. I am looking for ways to research my child and her symptoms to help figure out solutions to her "illnesses". She is a conundrum wrapped in an enigma and packaged in a mystery box.

What are good and easy to use sites? ... I am hoping that I can enter some major symptoms and come up with a list of possible things that I could take to our MD for further evaluation, it would be great if the site was more than your generic illnesses.

I am new to the more indepth medical research, so any assistance would be great AND THANKS in advance for any help.:D

If you are wondering about my kiddo...I have included some things about her. We have been to a neuro, had EEG, MRI-normal except for some sinus cavity thickening, CT-normal, blood work -all normal, mental health treatment currently ongoing with a fabulous private team and general learning/disability testing through her school. She was slow to hit milestones as in infant/baby. She had hypotonia, she never learned to crawl. talked at 2 and walked at 18 months, she has a speech impediment.
The mental health stuff I can deal with. but..it would be nice if they were all connected symptoms that could magically be cured. The headaches! Those are crippling her! The combination of the headaches and the mental health and the learning disabilities....this is damned unfair for this child and i would give my life to get it diagnosed and make her better. She is NOT an attention seeker in any way....chronologically she is almost 15...emotionally / mentally, she is about 10.
AGE: 14 (15 this month)
SYMPTOMS: 24/7 Headache (almost) which worsens into migrane status to where she cannot be touched anywhere, sometimes with this is eye stabbing feelings and facial paralysis on one side. The "stabbing" pains, eye droop and facial pain will subside when the headache is relieved. She had an initial sleep deprived EEG which was positive for seizure activity in the left pariatal lobe. A subsequent 24hr video EEG was negative. She was being treated with Topomax-no longer. She has Imitrex which does not really help and Percoset for pain.

Current Mental Health treatment for Auditory Hallucinations, Mood Disorder NOS-not otherwise specified; Anxiety Disorders NOS and depression. Per Mental Health treatment team, these symptoms are not typical for schizophrenia or bi-polar I/II...but they are not ruling anything out. Current Treatment is Clonopin and Ability

Mild Learning challenges and overall low-average IQ...currently seeking social/emotional testing through developmental services for wholistic approach...not just the school based testing she has had.


Other than that above and being overweight -family is too, and her medications don't help--she is in general good health.

BEHAVIORS:NONE! She is the sweetest and most kind person anyone can meet. She does not act out, she does not have any friends :( never really has ever had friends...but no friends means there is no sexual activity, drug activity **right, I know it's not a gurantee--but trust me on this one**. She stays home and stays in her room...she feels she has to be where she is comfortable at all times. There is no acting out or agression of any kind.

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