Re: (unknown)

January 12, 2001

Actually, it seems we do. I am not directing this to anyone in particular,

so please, no one take offense. But, I DID NOT subscribe to spend my time

sifting through a bunch of off-topic conversations. I have a baby with

clubfoot. I worry about him day and night. I spend 5 hours, 3 days each

week traveling back and forth to San to receive an hour of PT for

him. On the days that I do not go, I do the therapy and taping myself. We

are faced with many difficult and emotional decisions, the newest of which

is Botox. In addition to this I have 2 other children that need me, and I

try my best to give them the quality time they deserve.

Having said this, I would appreciate it if this could remain a clubfoot

group. Not a debate group. Nor a place to filter through more junk mail.

Nor a place for constant strife.

Jody

(unknown)

>

> >>LOL Hmmm Well anyway this computer is retarted I guess. (No

> >>affense to anyone!) anyway okedoke

> >

> >You've got to love it when someone spells " retarded " wrong.

> >

January 12, 2001

Hi Jody,

I am the cast lady from Shriners in Minnesota, You mentioned Botox

and it struck my curiosity. Are your doctors planning to use this for

the clubfoot? Is this part of the French Physiotherapy method? I would

be interested in any info you may have from your doctors ie.where they

inject it and what results they have had.

Thanx The Cast Lady

> Actually, it seems we do. I am not directing this to anyone in

particular,

> so please, no one take offense. But, I DID NOT subscribe to spend

my time

> sifting through a bunch of off-topic conversations. I have a baby

with

> clubfoot. I worry about him day and night. I spend 5 hours, 3 days

each

> week traveling back and forth to San to receive an hour of

PT for

> him. On the days that I do not go, I do the therapy and taping

myself. We

> are faced with many difficult and emotional decisions, the newest of

which

> is Botox. In addition to this I have 2 other children that need me,

and I

> try my best to give them the quality time they deserve.

>

> Having said this, I would appreciate it if this could remain a

clubfoot

> group. Not a debate group. Nor a place to filter through more junk

mail.

> Nor a place for constant strife.

>

> Jody

> (unknown)

> >

> > >>LOL Hmmm Well anyway this computer is retarted I guess. (No

> > >>affense to anyone!) anyway okedoke

> > >

> > >You've got to love it when someone spells " retarded " wrong.

> > >

January 23, 2001

Hi Sonnet, My heart goes out to you and your daughter!!! I wish I could

give you some insight but I am new with all of this myself. My daughter has

had cold urticaria (among many others) since she was 5 months old with no

known cause. She has been tested for mastocytosis, has your daughter been

tested for anything prior to the failure? I will keep you and your daughter

in my thoughts and prayers. I do know this, my daughter goes through the

same thing with the cold urticaria with hives and angioedema, but she also

vomits and becomes unbelieveably tired. Almost as if a bit of cold sucks

the life out of her. Best wishes~ Mom of Alena

(unknown)

> My 10 year old daughter Lizzy had a hive episode about a year and a

> half ago. We were vacationing at a lake we go to each year. The

> water was very cold that year. She had been swimming like a fish for

> some time with sibliings and friends, when she came to shore and said

> she didn't feel well. She then collapsed onto the beach, and broke

> out in hives on every single inch of her body. She became totally

> unrecognizable. She went into shock. We were so lucky a Dr. was on

> the same beach with us. He treated her for shock, and gave her

> something for the swelling. He told us we were very lucky that

> someone was there to treat her.

>

> Since this episode she now breaks out in hives whenever she gets

> cold. She can even just catch a slight chill, and she will break

> out. The hives are mostly on her face and hands, but also come in

> other places. They do not seem to itch too much, and it seems as

> soon as she really warms up they go away. They really are a

> nuisance. She has been able to take a Claritin at night, and it

> seems to help most of the time. But even with her medication she

> still isn't able to do things where she gets really cold swimming,

> snow, etc.

>

> Two weeks ago she was hospitalized with kidney failure. Her

> pediatric nephrologist is wondering if this is somehow all related.

> She is going in for a biopsy next week. She has not responded quite

> as well to treatment for her symptons as they had hoped. They feel

> she could have some type of chronic kidney failure.

>

> I am determined to get to the bottom of this. If you have heard of

> anything like this please pass it on to me.

>

> Thank-you,

> Sonnet

>

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>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

January 23, 2001

Can I ask a dumb question how did you know she had kidney failure? Thanks