Re: Please send prayers To donna and all

[Guest guest]

Dear ,

It's so hard to know what to feel with the diagnosis. It's relief

and sadness at the same time. Your jouney with sounds so

similar to ours with Craig. Their symptoms are similar in many

ways, and it took us many years to get a diagnosis. When we finally

did it was unspecified.

Praying for you,

Donna

> >

> > As I have been sharing with you all, goes to see Dr.

Saneto

> > tomorrow at 2:00. I am glad to see that he is the guest speaker

> > tomorrow night on the chat. I was also glad to see what was

> written

> > about him. We have never seen him before. Our normal

neurologist

> is

> > referring us to him. I always get a little nervous meeting new

> > doctor's.

> > Please pray that our muscle biopsy results are all in. I know

> that

> > alot of them are in I just haven't been told yet.

> > I should be able to sleep tonight and not let the anxiety get to

> meas

> > and I spent several hours in the ER tonight. He loves to

> > climb and tonight he was on a stump at a friends house and well,

> he

> > has 4 stitches in his scrotum! He always waits for me to turn

my

> > back and does what he was told not to do!! Typical boy huh!?!

> >

> > You are allin my prayers and thank you all for the support.

> >

> > God Bless,

> >

> >

>

>

>

>

>

> Please contact mito-owner with any problems or

questions.

>

>

>

> ---------------------------------

>

[Guest guest]

,

Im so glad you have answers, even if they arent the greatest

answers. I remember feeling tremendous relief when our geneticist

told us B has confirmed Mito... it felt very odd to feel relief when

a doctor says our child has a horrible disease, but it was the end

of a crazy long, scary search... its so much better to have a name

and plan for the beast were up against, rather than fighting a

ghost.

((hugs)) Im sorry he has mito, it would have been so much better

for everyone to say 'oops this was all a mistake, he has the flu'

but like you said, you knew something was wrong.

I'm in Canada, so im no help on the medication thing, but someone

posted a little while back about ways to get Carnatine funded (thats

the most expensive ingredient, next is Coenzyme Q10, after that the

vitamins are all fairly cheap, I think we pay 15$ a month for 4

different vitamins total). I hope someone is able to help!

Keely

> >

> > As I have been sharing with you all, goes to see Dr.

Saneto

> > tomorrow at 2:00. I am glad to see that he is the guest speaker

> > tomorrow night on the chat. I was also glad to see what was

> written

> > about him. We have never seen him before. Our normal

neurologist

> is

> > referring us to him. I always get a little nervous meeting new

> > doctor's.

> > Please pray that our muscle biopsy results are all in. I know

> that

> > alot of them are in I just haven't been told yet.

> > I should be able to sleep tonight and not let the anxiety get to

> meas

> > and I spent several hours in the ER tonight. He loves to

> > climb and tonight he was on a stump at a friends house and well,

> he

> > has 4 stitches in his scrotum! He always waits for me to turn

my

> > back and does what he was told not to do!! Typical boy huh!?!

> >

> > You are allin my prayers and thank you all for the support.

> >

> > God Bless,

> >

> >

>

>

>

>

>

> Please contact mito-owner with any problems or

questions.

>

>

>

> ---------------------------------

>

[Guest guest]

,

So sorry to hear has unspecified mito. You're strong though and I know you will be able to handle this.

Just wanted to let you know that Medicaid has paid for a portion of Sophie's cocktail. They pay for her carnitine and Co-Q-10. The B vitamins are fairly inexpensive when you think of how long they will last. It was $5.99 for a bottle of 100 tabs of each. I crush half of a B-2 tab and 1/4 of a B-1 tab each day for her 50mg dose. So that means they will last a while. I'm still looking for somewhere that carries these in a liquid to make it easier, but no luck so far.

I remember the day they called to tell me Sophie had mito. Like you I kinda knew but to have it confirmed was like being kicked in the stomach. You are in my prayers.

Meagan, Mom to Sophia (11 months)

www.caringbridge.org/ky/sophiesong__________________________________________________

[Guest guest]

we get B2 compounded into liquid with the Co Q 10. saves us a little time and its not too bad tasting either. they will make it any flavor we want. compounding pharmacy's do this around here.

Re: Re: Please send prayers To donna and all

,

So sorry to hear has unspecified mito. You're strong though and I know you will be able to handle this.

Just wanted to let you know that Medicaid has paid for a portion of Sophie's cocktail. They pay for her carnitine and Co-Q-10. The B vitamins are fairly inexpensive when you think of how long they will last. It was $5.99 for a bottle of 100 tabs of each. I crush half of a B-2 tab and 1/4 of a B-1 tab each day for her 50mg dose. So that means they will last a while. I'm still looking for somewhere that carries these in a liquid to make it easier, but no luck so far.

I remember the day they called to tell me Sophie had mito. Like you I kinda knew but to have it confirmed was like being kicked in the stomach. You are in my prayers.

Meagan, Mom to Sophia (11 months)

www.caringbridge.org/ky/sophiesong

__________________________________________________

[Guest guest]

what is a compounding pharmacy?

iluvdizney2 wrote:

we get B2 compounded into liquid with the Co Q 10. saves us a little time and its not too bad tasting either. they will make it any flavor we want. compounding pharmacy's do this around here.

Re: Re: Please send prayers To donna and all

,

So sorry to hear has unspecified mito. You're strong though and I know you will be able to handle this.

Just wanted to let you know that Medicaid has paid for a portion of Sophie's cocktail. They pay for her carnitine and Co-Q-10. The B vitamins are fairly inexpensive when you think of how long they will last. It was $5.99 for a bottle of 100 tabs of each. I crush half of a B-2 tab and 1/4 of a B-1 tab each day for her 50mg dose. So that means they will last a while. I'm still looking for somewhere that carries these in a liquid to make it easier, but no luck so far.

I remember the day they called to tell me Sophie had mito. Like you I kinda knew but to have it confirmed was like being kicked in the stomach. You are in my prayers.

Meagan, Mom to Sophia (11 months)

www.caringbridge.org/ky/sophiesong

__________________________________________________

[Guest guest]

I am sorry your child has Mito but totally understand the relief in at

least knowing what is going on. One thing I often wonder is how or why docs

say it is Mito if a type cannot be found. In my girls the biopsies pointed

towards Mitochondrial problems, but the docs still say we " think " it is Mito

rather than saying it IS Mito, just an unspecified form. Any help with this

issue is appreciated.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures,

G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting,

bladder issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (18 months) Probable Mito, strokes, neuro-motor planning, SID,

GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant

subclavian artery, disautonomia, hypertonicity, migraines, possible

seizures, dumping syndrome, iron deficiency...

Luke (16) migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (16 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(16 months) SID, dev. delays, right hemiparesis issues...

Re: Re: Please send prayers To donna and all

> Well, it's official, he has Mito!!!!! I have felt it in my heart that

> this is what he has but when you actually hear it and see it on paper my

> heart breaks. I had to laugh though when he said it's unspecified mito,

> here we have been looking for a diagnosis for 5 years and it is not

> specific. He did mention COX deficiency. I am supposed to start him on a

> cocktail. I have a question though has anyone gotten medicaid to pay for

> their cocktail supplements? I am not sure of how to afford this. Thank

> you for all your prayers. It has kept me strong all day.

>

> I am so grateful to finally know SOMETHING.

>

> Bless you all,

>

>

>

> craigsstory wrote:

>

> .

>

> So sorry to hear about 's accident! I must have missed the

> post earlier. I have been praying for peace for you.

>

> Donna H. (Craig's Mom)

>

>

> >

> > As I have been sharing with you all, goes to see Dr. Saneto

> > tomorrow at 2:00. I am glad to see that he is the guest speaker

> > tomorrow night on the chat. I was also glad to see what was

> written

> > about him. We have never seen him before. Our normal neurologist

> is

> > referring us to him. I always get a little nervous meeting new

> > doctor's.

> > Please pray that our muscle biopsy results are all in. I know

> that

> > alot of them are in I just haven't been told yet.

> > I should be able to sleep tonight and not let the anxiety get to

> meas

> > and I spent several hours in the ER tonight. He loves to

> > climb and tonight he was on a stump at a friends house and well,

> he

> > has 4 stitches in his scrotum! He always waits for me to turn my

> > back and does what he was told not to do!! Typical boy huh!?!

> >

> > You are allin my prayers and thank you all for the support.

> >

> > God Bless,

> >

> >

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

>

> ---------------------------------

>