kidsourlove2004/Frustration

[Guest guest]

kidsourlove2004,

I really wish I couldn't answer this one. I also don't want to scare

you. The mito disease that my son has is one of the more rare ones.

My Elijah is 23months old. He has a disease called Leigh's. It is

nero and has damaged most of his brain. He never progressed past

that of a newborn. He stopped eating at 5months old and stopped

crying at 6months old. I have never seen my Eli walk and can't

remember what his cry sounds like. That's ok I know in the

supermarket my little guy isn't the one screaming at the top of his

lungs. He has a g-tube and has grown to a angelic 43pounds. Even

with those pounds we still hold and cuddle him as much as we can. If

you think of what a 1month old wants it is security. We try to give

him all that we can. Children with Leigh's really live to verious

ages. Sadly most of what I have read it is 6months to 2years after

onset. It is a blessing that next month my little Elijah will be

2years old. It is amazing. God is good.

You said that you have genetic appointments. Do you know or suspect

what your children might have?

I do think almost everyone that signs onto this page could say they

have incountered these problems. I pray if you haven't had them in

for testing you can get them in. It may not be mito but a diagnosis

can help. Some mito illnesses can be treated. Sadly none that I know

of can be cured. I do know the with meds and diet some mito children

can live wonderful lives. Having said all that I PRAY that this is

not what has affected your children. If so there are some wonderful

people in this group to help you. The knowledge you can get from

parents facing the same is far more that the Doctors will ever be

able to share. With mito the most frustrating this is Doctors will

tell you that each child is differant. Now as a parent you know

that, we are just looking for prognosis, something that will show us

what to expect. For most of these children their journies are

unscripted. Each must live through the process of trial and error.

As parents we face decisions that are down right aweful.

God Bless you

Ann " Eli's mommy " 23months Leigh's

http://www.caringbridge.org/co/elijahkurtz

Eli's page- Visit is you would like

>

> help! My son ph is 18 mo. he does not walk or hardly talk.He

is

> in OT<PT and SPEECH.My daughter Amber is 4 and in headstart talks

> some. She is OT,PT,SPEECH through the school system.Now once again

a

> Fight to set up genetics appointments.Having both kids not feeling

> well.They both seem to have a cough and cold systoms that just

dont

> leave.ANYONE HAVE THIS PROBLEM?HAS ANYONE HAD PERSONALITY PROBLEMS

> WITH THERE CHILD?