Leigh's and regular toddler issues...!!

[Guest guest]

Thank you from me as well...I need all of the hope and inspiration I can get! Ellie is wonderful and all we do is have fun every day!! I am working on a caringbridge site for her so all of our family and friends can enjoy her more, too.

Quick question...I always feel so guilty when I have to discipline Ellie for something (not listening, throwing a toy, etc.). It happens about once a week, whereas her twin brother, Jimmy (who is not affected and is my sticky-fingered octopus), is in time-out half of the day!!! Anyway, I feel bad when she gets upset and I lose my patience...I know I need to "treat" her as a normal child and that she needs to follow the rules, too. Does anyone know what I am saying?

I have also noticed how some of the mito kiddos have autistic and ocd tendencies...I wonder if Ellie has some, too. Her dolls/animals have to be just so in her bed, she has to be the one who takes her clothes off (if I start, it goes back on and we start all over), she has a MAJOR fit if things don't go her way...I get so frustrated sometimes! And then I feel bad...how do you all deal with these types of behavior issues? I don't know if they are just toddler issues or something more...she is 3 yrs, 4 months...

Thanks....hope everyone is staying warm. Looks like my Steelers won't be heading to ville...UGH...KK

Re: Re: how do you get the ER dr to listen?> > BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will most likely take her from us between the ages of 5 and 8. Needless to say this was like a punch in the stomach...he said her believes her issues to be in the "SURF01" chain. Because of the difference in her MRI's between 9/03 and 9/04 he feels she will likely regress with more brain lesions and "probably" respritory issues. I liked Dr. Shoffner, but he is very blunt. What do you all think?Please contact mito-owner with any problems or questions.

[Guest guest]

i know what you mean about the discipline stuff. i also have twins

(anna grace and her twin brother palmer, who is not affected also)

and let me tell you, palmer is all boy and gets into a lot.

however, anna grace trys hard sometimes to actually do something

wrong...she thinks it is funny to get into trouble. (of course,

her " bad " behaviors are like swatting at her tube while i'm feeding

her--hoping it will spill out all over the place or throwing blocks)

as far as the autistic type behaviors, we do not see any with anna

grace. but, i'm sure there are many on here that have experiences

with that.

bethany

mom to brennan 8, palmer & anna grace (leighs) 5

> > Just wanted to pass along that our little fellow who has

Leigh's

> will soon be 11 years old. The doctor's told us when he was

> diagnosed at the age of three, that he would not live past

seven --

> but he has proved them wrong -- in a big way! Although he has

many

> issues, his health is much better now that it was at the time of

his

> diagnosis. I know that things can change in the matter of

seconds --

> but just wanted you to know that sometimes no one's best guess

can

> predict the future of these astounding kids!

> >

> > Sue

> >

> > Re: Re: how do you get the ER dr to listen?

> >

> > BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's

will

> most likely take her from us between the ages of 5 and 8.

Needless

> to say this was like a punch in the stomach...he said her

believes

> her issues to be in the " SURF01 " chain. Because of the

difference

> in her MRI's between 9/03 and 9/04 he feels she will likely

regress

> with more brain lesions and " probably " respritory issues. I

liked

> Dr. Shoffner, but he is very blunt. What do you all think?

>

>

>

>

>

> Please contact mito-owner with any problems or

questions.

>

>

>

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