Re: Newborn with TSC

October 30, 2006

Thanks so much for your story...its a scary thing that all of us

parents go through and its nice to find people who are going through

the same scares and concerns as my husband and I go through!

>

> Hi,

> Although it is only early days for us as my daughter had

detethering at the end of July I would have to say that at this

point in time i would consider her a success story. I am unsure what

the future holds for her as far as retethering etc but for now she

has gone from a little 3 year old who would cry most of the night

with pain to a little girl who wakes occasionally for the simple

reasons that toddlers do. By the time of her surgery the weakness in

her legs had begun to prevent her from being able to walk uphill,

down steps and she was actually back in her pram most of the time as

her legs were just not coping. She is now much more mobile than she

was even though she is still recovering from the surgery. I am happy

that her deterioration has been halted -hopefully for a long time.

Who knows!! She still certainly has issues relating to her tc- a

real battle with constipation and still seems to get weak in the

legs when she overdoes it but she is presently in a much

> better state than she was before.

>

> I know that her story is quite different to your sons as you

mentioned he does not present any symptoms and he is alot younger

than Ella. But, I always think it is nice to hear a happy story. It

is such an anxious time for us as parents. Please contact me if you

need anything.

>

> Regards,

> Lani - PS Sorry it has taken so long to get to you, but i am

having trouble getting my posts through lately.

>

> Send instant messages to your online friends

>

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