cant begin to explain my fustrations

[Guest guest]

I feel like we've been hit with a ton of bricks, the same feeling i

had when Matt was 1st diagnosed 7 years ago. We got through that

initial shock, and life got back to somewhat normal routine, and we

incorporated Matts disability into our daily lives, like clock work,

everything was going so smoothly. Over the past few years Matts

white and gray matter lesions didnt grow or spread and no new ones

were found, seizures were under control, his g-tube was a blessing,

special ed going great, he was growing, thriving, learning, he was

even getting stronger, so well that his pediatrician at one point

said " looks like hes outgrowing these problems " . His point being

that the mito somehow was in remission, and Matt was outgrowing it.

Even the pdd-autism, he started socializing, and less fustrated, he

even learned how to read which no one thought possible. Sure there

were still things like, incontinence at night, cant tie his shoes,

little things that just didnt matter anyway, nobodies perfect. And

being told that Matt had the slowest progressing mito, really gave

us hope. WE had the biggest and best 8th birthday celebration a kid

could have. THen those little things turned into more little things,

couldnt ride his bike anymore, muscle spasms that had him screaming

in pain, reflux back with a vengence, all things that we could deal

with and handle. And as the months go by, more things, severe

fatigue, and not wanting to go outside to play anymore, coming home

from school and sleeping for two hours and then no energy to do

homework, diagnosed with cough varient ashma, and then migrains

started, and still all things that we could deal with. WE meet with

a new metabolic/neuro specialist, his field is mito! Not that Matts

origional neuro wasnt great, he was and still is. But Dr Marks is

just so more knowledgable. So he reads all Matts records, and

concludes yes theres a regression going on, he orders new blood

work, that shows there are definite problems, we get a new MRI and

MRA and wham, two new white matter lesions not in the left lobe

where the others are, but now in the frontal lobe. Where the hell

are these lesions coming from?!! After all these years and mri's

every year why all of a sudden all this is happening? Matt now

getting rushed to the hospital from school from a severe crash in

gym class. An 8 year old child also with tacticardia, and two weeks

before got a clean bill of health from our cardiologist, Dr Marks

convinced that primary diagnoses MERFF is wrong, and looking into

MELAS/ complex one. We've added extra feedings via g-tube to help

with nutrician and weight gain, and still he is fatigued, and not

gaining wieght. Still getting migrains with new medications, im

almost afraid to say it, but at least we have been able to lower

Matts seizure meds without incident. We just got word that all

monies are in place for Matt to get his mtdna blood work done will

go to St hosp, next week for that, 50/50 chance of mt being

found in blood, if not found Matt will have to have another muscle

biopsy, although his 1st biopsy showed red ragged fibers, the mt was

never found. And of course my biopsy didnt show mtdna, so my son

has to go through all this and God i pray this will show the

specialist what they need to know to help Matt, and me. Im so

tired, im fustrated, dealing with insurance company that no longer

wants to pay for carnitor, im now buying over the counter just to

keep my head above water, because without the cocktail im useless,

literally! I just want to scream, but that wont help, i cry and get

on with things but thats not helping either. I read the post of

other families and we are all in the same boat, paddling together to

keep from sinking, pulling together to keep our sanity, I think this

is an awesome group that knows more than most doctors, families that

are strong in the face of adversity, but when we mothers are alone,

our fears are there, our hearts are breaking, i dont know if i can

take anymore!!! I dont know if i can take anymore!! It hurts so

bad, that i cant kiss this boo-boo away, my heart is breaking. I

dont know what to do, i keep praying but starting to lose faith at

times, i dont know what to do! Thanks for listening any prayers

would be appreciated, and our family is praying for all here, I know

you understand my fears as you all have them too, our plates are

full and the cups are overflowing, God please help us all. Barb