Re: Thank you for letting me lurk to Deb

[Guest guest]

Deb-

They did the sweat test at a hospital CF center here in MI. The

thing was that Vivian has no other symptoms of CF - no stool

problems, she never had a problem breathing, has never had wheezing

or anything like that, no chest or lung infections, and we have no

known genetic history of it in my or my husbands family. She was

also small when she was born (only 4 lbs 12 oz due to my low

functioning placenta!) but she has gained 16 lbs and grew 15 inches

in less than two years so her weight gain has been good. The dr

wanted to rule it out because they find treatment so much better if

started at a young age. It was stessful but I am so glad that they

are on top of things. Do you think we should look into it further

or no?

No I don't mind you asking about plagio! It is a condition where

due to intra-uterine or external forces (like bouncy seats, back

sleeping, infant carriers) the head becomes flattened either on one

side of the back of the head or across the whole back of the head.

In most parents magazines they refer to it as " flat head " which is

rude if you ask me! LOL! If it is more on the moderate or severe

side it is often wise to treat it with helmet therapy. If you are

curious about it you can see an example at http://www.cranialtech.com

Does your dd have a shunt for her hydrocephalus? My dad had one

before he passed and it worked wonderfully.

Anyway, Let me know what you think about any further testing and

thanks for the response.

> In a message dated 10/22/2003 10:02:08 AM Central Daylight Time,

> xtinaherp@y... writes:

>

> What kind of test did they do on your daughter to test for CF?

Because some

> times a sweat test does not give an accurate reading. You might

look into an

> Ambry test it test for the most CF gene. I don't want to scare you

but just want

> to let you know that sometimes the sweat test does not give the

best reading.

> What is plagiocephaly? If you don't mind me asking. My daughter

who has CF

> also has hydrocephlus. I love to learn about many different

illness because you

> never know you might have a family member that have one of these

aliment. Deb A

>

>

>