Oct. 30 1999

Signs & Symptoms
Build / Stature
- Short stature (41 inches) and slight build (38 lbs) Both are about the 5th%-ile
- cafe-au-lait spot on mid-back
- eczema (disappeared since on supplements)
- lots of it! This could be genetic though. Has a low hairline in the front with lots of baby hairs.
- Since the day he was born he has had a line of dark hair run down his back with a noticeable swirl of hair 1/3 of the way down his spine.
- Joint hyperextendability
- Low tone
- High metabolism due to ataxia. I am a dietitian and can't seem to help him gain weight.
Neurological Functional
- Absence of sensory nerve response. Is very ticklish, is sensitive to hot water, can taste, smell etc. but has not sense of where he is in relation to the world. Had 3 episodes of seizures, one with a fever 2 without but both times was during the night when he started to move around quickly and likely brought his temperature up quickly. Has not had a seizure since he was 2 years old.
- Speech: Severe speech delay. Has a fairly large vocabulary but is missing several phonetic sounds so it makes it difficult for someone who doesn't know him to understand what he is trying to say.
- Behavior: Low attention span; becomes easily frustrated and strikes out at his family or his toys. Otherwise is a happy and loving boy who has a great sense or humor and likes to tease, especially pretty ladies.
Laboratory Test and Findings
- CT scans x 3 (normal)
- MRI x3 (normal)
- EEG x3 (normal)
- blood test for metabolic disorders, mitos, and who knows what else (normal).
- Nerve and muscle biopsy done June/05 and results have not come back yet. Will ask neurologist for summary of all tests done and conditions ruled out so that I can post.
Specialists/Therapies: Currently sees a pediatric neurologist, geneticist, physiatrist, chiropractor, acupuncturist, cranial sacral massage therapist.
Supplements: Mannatech- Advanced Ambrotose, Ambrotose AO, magnesium, Salmon oil capsules, multivitamin. No meds
Cody was born October 30, 1999 at 39 weeks gestation. I had a uncomplicated pregnancy and delivery and we thought he was healthy until he was about 1 year of age. At that time someone pointed out the his hands and feet had a slight tremor to them. I guess being first time parents we didn't really notice this or think it was abnormal. Looking back there were clues, but since he was such a happy, relaxed baby, we weren't that concerned when he didn't meet the developmental milestones. He never did lift his head up when on his tummy, sat at 10 months but leaned to one side, crawled at 14 months, cruised furniture at 18 months and took his first steps 2 weeks before his second birthday. He didn't say many words until he was 3, then it was only 1 syllable words and usually the last syllable of a 2 syllable word (eg dow for window). He used to have a poor immune system, would catch whatever was going around and it took him a lot longer to get over these bugs. When he was sick he would get weaker and more ataxic. For the last 2-3 years he has had a great immune system, rarely gets even a cold and if he does it is a sniffle or two and then it's gone. We credit this to the supplements that he is on. Presently he sees one of the best acupuncture specialists in North America for laser acupuncture and notice a small improvement in his movement, speech and cognition (and any improvement is great!). He also gets a chiropractic adjustment once a month.

Cody loves water and is a great swimmer. I think this is because the water surrounds him and he can feel it so has a better sense of balance. He also rides a horse in a therapeutic horse riding club. His favorite movies are The Incredibles, Spiderman, and Shrek and loves to play with action figures as well as on his play structure.

Contact: Bev mom to Cody at

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