mito questions

[Guest guest]

my baby son was born 5 weeks prem and apart from a few feeding

problems at first seemed fine,i took lewis home after 2 weeks and he

was fine.i begun to worry when he was 3 months old as he wasnt

developing like other babies his age or like his older brother

did.the drs blamed it on his prem birth,but i wasnt sure it was

this and spoke to our health visitor as lewis was getting worse.he

cried alot,only liked me holding him in certain ways,fed very slowly

and wasnt hitting milestones,then he begun to lose weight and at 5

months old and weighing only 10lbs the health visitor and i were

worried,she referred him to see a child paditition.then our

nightmare started.lewis was given a nasel gastric tube and i fed him

6 times daily through this and he piled on weight and became a much

happier baby.lewis was given clonazipin to help his stiff

joints.this sedated him so much for the 1st week he stopped

breathing countless times and was rushed to hospital,he was kept in

for 10 days but just for observation and tests.the clonazipin worked

wonders after this,lewis joints were so relaxed,

lewis was diagnosed with mito but all the tests he had came back

negitive for mito.his dr at the hospital and many other health

carers he had said it wasnt mito just something that happened and we

would never know what and why.lewis life prognosis was a year to 3

years,so we took every day as it came and treasured every day with

lewis.

sadly lewis died peacefully in his sleep on 7th dec 05,10 days

before his 1st birthday.

lewis has left our life empty,we have lots of photos and happy

memories of him,he was a very special baby and will be in our hearts

forever.

we have a 4 year old son who is healthy with no problems,we have

been told another baby being born with lewis problems would be very

unlikely,we have thought about it alot and decided to try for

another baby.

i would like to hear from anyone in simalar situalation to us.