Christian

 
 
Signs & Symptoms

Christian was born healthy at 36 weeks, he weighed 6lbs 4oz and was able to go home with us after 2 days.  He was first hospitalized at 4 weeks when he would not wake up from sleep. We took him to the ER and he had multiple blood tests done including a spinal tap and everything came back normal. We were sent home from the hospital with a diagnosis of stomach flu. He continued to develop normally but after he received his vaccinations at 2 ½ months he got sick with a cold and fever. At 3 months he got an ear infection and that’s when it all started. At 3 months of age he slowly started to deteriorate, he stopped making eye contact, stopped cooing, stopped smiling, and could not roll over anymore. We noticed he would stare off into space a lot. We then took him to a local Children’s Hospital when he started rolling his eyes back, there they ran all types of testing and the only thing they could tell us was that he was having absence seizures. This did not explain his regression, we were then followed by genetics and they thought Christian had a terminal mitochondrial disorder but after a second test to confirm the diagnosis he miraculously tested negative. We went back to square one and still did not know what caused his regression. He was put on anti seizure medication and slowly started regaining some skills back throughout his first year. He now sits, crawls, and somewhat stands by furniture. We regained his beautiful smile and he is a happy little boy with a lot of energy. His illness is still a mystery and we still have a long way to go to find the missing piece of this puzzle.

 

- Seizures started at 3 months of age
- Lost all skills
- Had CVI (Cortical Visual Impairment) for 3 months until seizures where controlled
- Extremely Hyperactive
- Severe reactions to vaccines
- Severe colic until 4 months of age
- Severe constipation until 6 months of age
- Nightmares started at 4 months of age
- Short attention span
- Severe Gag Reflux***still on puree Gerber foods at 17 months of age
- Eczema
- Wheezing for almost a year until we got allergies taken care of
- Sat at 11 months
- Crawled at 13 months
- Developmentally delayed in all areas
- Stood up on furniture at 15 months
- Sensory integration
- Autistic like Behavior

Therapies:
Physical Therapy
Occupational Therapy
Visual Therapy
Developmental Therapy
Musical Therapy
Needing Speech Therapy

Medications:
Topamax
Prevacid

Tests: **All have come back normal
2 MRI & MRS
1 CT Scan
1 X-Ray
3 Spinal Taps
1 Muscle Biopsy
Numerous Amounts of Blood and Urine Tests
- Fragile X Syndrome
-CPT2
-Mitochondrial Disorders
5 EEG’s
2 VEEG’s

**Currently with Texas Children’s Hospital in Houston, TX

Contact: Maria mom to Christian at mariav@armorplateonline.com

Website: http://www.caringbridge.org/visit/life4christian

Any troubles with e-mails send to swanusa@undiagnosed-usa.org