Mothering Forum banner

1 - 2 of 2 Posts

·
Registered
Joined
·
16 Posts
Discussion Starter · #1 ·
I just found MDC, and am still getting my bearings, but i thought i would start here! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br>
I am in Canada, and have 2 boys, Brandon is nearly 3, and has been diagnosed through a muscle biopsy with a Mitochondrial Disorder called Complex 1 Deficiency. (<a href="http://www.umdf.org" target="_blank">www.umdf.org</a> is the best resource). Essentially his cells dont create enough energy, so his body suffers 'brownouts' on a regular basis, particularily when hes sick.<br>
he was completley healthy and normal until (like others) he recieved his MMR shot... I had refused all vaccines to that point becuase of a family tendancy to severe reactions, so his MMR was the first one he got at 13 months. within 2 weeks he was unable to stand, walk, (he had been walking from 8 months on) lift things or even sit up. it was horrible. he was in hospital for a week, got all sorts of horrible tests done, and we were sent home with no answers, and tonnes of worries.<br>
He recovered mostly, but was totally non verbal at 18 months. They chalked it up to a 'post viral' syndrome, and refused to consider MMR as a contributing factor until later.<br>
at 18 months I insisted his neurologist do more tests, as I had a gut feeling something was off... he was losing weight, running insane fevers (highest logged at the ER was 107.1... that got their attention), was always sick, and had miserable balance.<br>
After an MRI and several blood tests, they realised something was up.<br>
a battery of other tests, and a combined muscle, and skin biopsy and spinal tap produced a positive test result for the disorder. they are still conducting genetic tests to find out what mutation he has (its almost always genetic, sometiems recesessive, sometiems dominant, and sometimes maternally inherited).<br>
after diagnosis, they started him on a 'cocktail' of suppliments and medications, and we saw an incredible change over the past 9 months! he is still non verbal, but is quite fluent at ASL (signing). the lack of speech has been chalked up to cerebellar damage caused by his MMR reaction (the MMR didnt CAUSE his disorder, but the combination of the disorder and the shot was disasterous), at this point they cant determine if he will ever be able to talk, but he is receptively able to understand at a 3-3.5 year old level, and expresses himself very well through ASL.<br>
Since starting the cocktail, his fevers have vanished, he has gained 7lbs, all of his symptoms have either improved or vanished (he used to suffer from low blood sugar, severe intention tremors, leg pain/muscle pains, chronic alternating diarrhea/constipation, and he would literally sleep up to 20 hours a day), so we consider ourselves extremely lucky!<br>
Hes now getting ready to attend a local preschool with a deaf program, 2 mornings a week so he can be around other signing kids! Were very excited about this.<br>
We also have an 8 month old baby Tyler, who so far has tested negative for this disorder, and who adores his little brother to no end.<br>
I guess thats our novel in a nutshell.... consider it the condensed version, theres alot more where it came from... <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/upsidedown.gif" style="border:0px solid;" title="upsidedown">
 

·
Registered
Joined
·
459 Posts
Welcome! I'm Canadian too, though living in the American south. I've got two boys too, 4 and almost 2. My nearly two year old is my 'special' boy.
 
1 - 2 of 2 Posts
Top