Re: cystic fibrosis, MAGIC Foundation, GHD, etc....

[Guest guest]

Hi ,

The articles that we can get from MAGIC are terrific!!! We've never

been to the MAGIC convention, but it sounds like a great chance to

meet other families and children dealing with the same issues and a

great learning experience.

Also, the membership fee goes to an organization dedicated to

children with growth issues. So, in general, it's helping the

organization meet the needs of kids across the US and even in other

parts of the world.

Finally, it helps put people in touch with each other. Even though

this listserve isn't a MAGIC listserve, a lot of the good info we get

here comes from people who've learned a lot by being part of MAGIC -

citing research and actual studies that are kept in the MAGIC library

and working with doctors who are part of MAGIC. The people on this

listserve seem to be exceptionally well informed - either through

research, experience or both!

Definitely stay on here if you're learning something that will help

your daughter - that's what it's all about. Good luck getting an

answer and finding another group for GHD kids.

- Tyler's mom

[Guest guest]

MAGIC is a wonderful resource!! In addition, they have a listserve for

GHD!!

Dayna, Mom to Alyssa

cystic fibrosis, MAGIC Foundation, GHD, etc....

> Hi Folks,

>

> Gemma had a cystic fibrosis sweat test on Monday (her 18 month birthday).

The good news is that she tested negative for CF...we were thrilled.

>

> What can folks tell me about the benefits of becoming a MAGIC Foundation

member? I have used their web site (the non-members portion) a lot and

really appreciate what I've gotten there. What are the advantages of

membership?

>

> And, after doing more reading, more talking with folks...I am pretty sure

that Gemma odes not have RSS, but rather our endocrinologists suspicions

about growth hormone deficiency seem more accurate. We do the pituitary

stimulation test in April, so time will tell. I've thought about unsubbing

since I'm thinking we're probably not dealing with RSS, but some of the

other issues, like hypoglycemia seem right on, so it is ok with folks here,

I'd like to continue lurking and reading..until we get a more pinned down

diagnosis.

>

> On that note...anyone know any good support on-line groups for parents of

kids with growth hormone deficiency? There is one group at yahoo, but that

is inhabited more with adults with GHD and wasn't very welcoming of parents.

Someone gave me a connection to a GHD list that is a pay service, but it

sounds like there are tons of political hot beds on that list, which doesn't

thrill me. Any suggestions??

>

> Thanks,

>

>

> and Jani, moms to

> Rowan , age 4.5 (6-26-98)

> Gemma Rose, IUGR and just over 3 lbs at birth,

> age 1.5 and currently being evaluated for cystic fibrosis and growth

hormone deficiency (8-24-01)

> and four spirit babies

>

>

[Guest guest]

Hi ,

I totally agree with both Deb and . Info is the key, and I would

max your opportunites by hanging around both sites. I love to read your

posts, as they are both informative and interesting.

Pat (g-ma to , RSS, 14 months, 11# 13oz, 24.75 " , GT)

[Guest guest]

,

I would encourage you to join MAGIC. It has made such a world of

difference for us. As a member you have support for all kinds of

issues from insurance to school (iep) and even medical articles free

of charge. Also, Magic has an online support group very similar to

this one, but I would say a larger number of them actually are ghd.

As a Magic member you also get a newsletter every season and a

reduced rate to the convention every summer (which is incredible).

The Convention alone is worth the membership, not only for us, but

most of all for our son as he get to meet other kids like him and he

doesn't feel so different for a change! What a huge blessing Magic

has been to us. Without Magic I would say that we would still believe

that there was nothing the doctors could do for Storm, but we have

learned so much that we are often taking the doctors our own info and

teaching them a thing or two! You have to do what you think is right

for your family, but Magic has truly made a difference for our

family, and has basically become a part of our family!

Carmen, Mom to Storm, RSS, age 7y6m, magic members since he was 3y6m

[Guest guest]

,

I would encourage you to join MAGIC. It has made such a world of

difference for us. As a member you have support for all kinds of

issues from insurance to school (iep) and even medical articles free

of charge. Also, Magic has an online support group very similar to

this one, but I would say a larger number of them actually are ghd.

As a Magic member you also get a newsletter every season and a

reduced rate to the convention every summer (which is incredible).

The Convention alone is worth the membership, not only for us, but

most of all for our son as he get to meet other kids like him and he

doesn't feel so different for a change! What a huge blessing Magic

has been to us. Without Magic I would say that we would still believe

that there was nothing the doctors could do for Storm, but we have

learned so much that we are often taking the doctors our own info and

teaching them a thing or two! You have to do what you think is right

for your family, but Magic has truly made a difference for our

family, and has basically become a part of our family!

Carmen, Mom to Storm, RSS, age 7y6m, magic members since he was 3y6m