Introduction

[Guest guest]

Hi,My name is . I'm mom to 3 kids which includes my 5 yos who

we believe has a mitochondrial disorder. I had a typical pregnancy

with except the morning sickness was worse with him out of my 3

pregnancies. He delivered normally and he had no issues other than

mild jaundice(all 3 of my kids were mildly jaundiced the first week

because they were breastfed)

I " think " hit his first milestones from 0-4 months. I " think "

he maintained eye contact, and gave us a social smile and picked up

his head. Its difficult to trust my memory in those first months but

I don't recall being concerned. started rolling around 4

months so when had trouble sitting up or others issues I just thought

it was because he wanted to roll. I started having trouble nursing

him after 4 months. But I was pregnant and didn't know it so of

course he wouldn't get enough food from me anyway. knew I was

pregnant before I did:)

I took for his 6 month check-up and my world was blown apart.

I mentioned my mild concerns and the doc measured Chris's head. It

hadn't grown since the 4 mo check-up. He wasn't sitting up at the

time but he was STILL rolling. I incorrectly thought he wasn't

sitting up because he didn't want to. I thought he just wanted to

move around. He had an MRI which showed the frontal lobe of his

brain had atrophied and had decreased mylenation(?SP).

I'll skip ahead to today or I'll write forever. is an

extremely happy 5 yo boy. He's globally delayed at the dev age of 6

months. He has low muscle tone throughout his body including his

internal muscles(GI tract etc). can't walk or speak. He's

been Gtube fed for 2 1/2 years and has had seizures for 3 years. He

has visual cortical impairment, cerebral palsy & poor regulation of

his body temperature. And his primary means of getting around when

not in equipment is still rolling:)

has been tested for soooo many things. Lots of bloodwork and

urine tests,MRIs & other numerous scans,lumbar punctures,muscle &

skin biopsies & probably more than I can't recall. Every test come

back essentially normal. Occasionally a test may be slightly off but

they aren't sure it means anything or if it's his diet.

His genetics doctor & neurologist both think it's a

metabolic/mitochondrial disorder. The latest tests are still pending.

With all Chris's medical issues he's still the happiest of my 3

kids. He has a 7 yob and almost 4 yos who both are in excellent

health. My 7 yo is defintely ADHD and has some behavior issues but

his health is fine. My daughter is fine but she's also a hyper kid.

Three high energy kids equals one tired mom-LOL

I'd better go now. My 7 yo's bus will be here soon and I promised to

read my daughter a story before he gets here. She's pouting:(

I just thought I should introduce myself since I joined over a month

ago.

Blessings,