Re: Deb - Arnold Chiari and CF

[Guest guest]

In a message dated 8/26/2003 9:29:57 AM Central Daylight Time,

drea@... writes:

> Deb,

> If it effects a family with CF (or a child with CF) then it is CF related

> enough for me! and no you are not boring us with it.

>

>

Thanks !! Deb A

[Guest guest]

Deb,

If it effects a family with CF (or a child with CF) then it is CF related enough

for me! and no you are not boring us with it.

Re: Deb - Arnold Chiari and CF

In a message dated 8/26/2003 6:53:08 AM Central Daylight Time,

gale.harris@... writes:

> Gale

>

I have never even heard of Arnold Chiari. was a year old when we

found out about her hydrocephalus. They told me that the tube that drains down

to

her spine did not form to normal size so she drains some but not enough to

keep up with what is going into her head so it took a year before there was

enough fluid there for her to be having symptoms. She has never had any reflex

problems at all. She does have a shunt in fact she has two on one side because

there was fluid on the front and back of her left side. She also has

porencephaly which means her front ventricle did not develop which really

helped her from

not having any damage to her brain because there was an area for the fluid to

go to. I hate telling people that she has this because one time I said this

to someone and the next think I was hearing was she was born with only half a

brain which is not true at all! When you are young you brain never had that

section there so it learns to develop without that piece so she does very well

you don't even know she has any problems even a lot of the doctors and

residents

are surprise when the see her shunt. She walks fine, has know speech

problems, the only think she has problems with is her remember things and you

have to

repeat things until it sticks. Heck I am like that to when I hate something it

doesn't stick and I don't have any medical excuse for my memory problems!

Well, I won't bore everyone with this because it really has nothing to do with

CF

but I would love to read that article Gale if you find it. Thanks Deb A

[Guest guest]

I'm not sure that development delays really mean too much. That

little boy that can sign " No " to his parents HAS TO be really smart

to learn sign language. My daughter, now 27 yo, didn't crawl or walk

until she was almost a year old. She's fine also.

Does get many headaches? Doe she has trouble with balance

or numbness in her arms? Those are all signs of Arnold Chiari.

Although, I believe that a shunt would aleviate those symptons.

Gale

> In a message dated 8/26/2003 12:33:56 PM Central Daylight Time,

> luckyducky22@y... writes:

>

>

> > My brother was born with Spina Bifida, Hydrocephalus and Arnold

> > Chiari malformation. He is 26 now and is doing great. He had a

shunt

> > put in when he was younger and has had no problems with it. He

does

> > have seizures though. He also had some developmental delays and

was

> > in special education classes. He struggles the most with math.

>

> My daughter doesn't have any developmental delays but she does

struggle with

> math. The only thing I can think of that she was late at doing was

walking and

> that was because she had surgery when she was 1 and she was to lay

flat for a

> month. She walked by the time she was 16 months. Deb A

>

>

>

[Guest guest]

I've decided that must be a pretty tough cookie. I have

sinus headaches and they are nasty! I took prescription pain

medication for them for years. deserves a lot of credit for

all that she's had to go through!

Gale

> In a message dated 8/27/2003 6:01:55 AM Central Daylight Time,

> gale.harris@h... writes:

>

>

> > Does get many headaches? Doe she has trouble with

balance

> > or numbness in her arms? Those are all signs of Arnold Chiari.

> > Although, I believe that a shunt would aleviate those symptons.

> >

> > Gale

>

> Well, she gets headaches but I think that is from her sinuses. She

is the one

> that has had 3 sinus surgeries so far but I worry that it could be

related to

> her shunt. She never complains of numbness in her arms and she

doesn't have

> any problems with balance either. Deb A

>

>

>