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CanadianMommy 07-09-2003 10:07 PM

new here
I am mommy to 2 beautiful girls who have CF. Both girls have the deltaF508 gene and G542X. My 2 1/2 year old was diagnosed at 10 weeks old with CF (no family history) becasue she had meconium ileus at birth, which is an indication that a baby may have CF. She cleared this intestinal blockage on her own in NICU and we could go home after 1 week. My 5 months old also has CF and was diagnosed at birth. She too had meconium ileus at birth but required surgery at 5 days old to remove the blockage. She was given a temporary ileostomy for 3 months then had the ileostomy reversed. While recovering from this reversal she developed another blockage and required a third surgery which was successful. She remained in hospital for another 10 days on IV antibiotics to clear up a pseudomonas infection in her blood. Despite her rough start (51 days in hospital) she is doing amazing now. Both girls seem to be really healthy :D and to look at them you would never know they had CF.

I have just discovered your board and look forward to learning about how to deal with various CF issues as my children grow and experience new things.


Mommy of 2 girls with CF

MommRenFest 07-11-2003 08:54 AM

Hello! I am new also so thought I would say, "Hi and welcome"... but this is my first post. :) I have a 6 y/o with CF that was diagnosed at 6 months. We have only been hospitalized twice back in Memphis TN, they were "tune-ups." Currently she has the Vest, WONDERFUL, and does neb tx's and also the enzymes. I am just looking to talk and learn more about life with CF and how age plays a factor.

Thanks for letting me join.

[This message has been edited by MommRenFest (edited 07-11-2003).]

SlyGirl67 07-12-2003 10:04 PM

Welcome to the board CanadainMommy and MommRenFest!!

I have a 14 year old son who has CF. He is doing amazingly well. Only 2 hospitalizations, once when he was 2 and the other one was when he was 12. Heck if we can get away with 1 hospital visit every ten years I will be happy!!

Danny just got the vest this weekend. We are suppose to have the trainer come over tomorrow to show us how it works. He's excited about it, which is a real treat since it was really like pulling teeth to do his treatments before. He had the mechanical percussor. He tryed the flutter and that did not work for him at all.

I'm glad you guys found the board!! If you have any questions or anything, I will try to help you out if I can. Hope to hear from you soon.


Seana29 07-13-2003 01:57 AM

Hello Momm and Canadian

Welcome! I have a 10 year old daughter that was just diagnosed in April. are your girls doing now? Hope well. Can you explain to me what meconium ileus is? did not say whether you had a boy or a girl.

Deb....can you explain to me what the flutter is. Courtney's doc said that she is going to start using it soon, and I have no idea what it is or how you use it!

Again, welcome to the board, and look forward to talking with you soon!!


SlyGirl67 07-13-2003 07:56 AM

The flutter is a device that you blow in, it looks like an oversized bubblepipe. It's got a big metal ball in it, and when you blow into it, it is suppose to cause internal vibrations in the lungs. You also have to hold it just right, otherwise it just doesn't do the trick. We were in a three year study, and unfortunately we drew the flutter. We had to drop out of the study and go back to mechanical percussion. The nurse up at the Med Center told me alot of people dropped out that used the flutter. I think younger people have a hard time using it right, and that is why it is not as effective.

As for the vest, we are in the 30 day free trial period. I called Tricare and they said this is something that they normally cover. So they told me to have the doc submit a letter and medical documentation. So I have started that process. The vest costs $16,000, but if it cuts out even 1 hospital stay it will have paid for itself.

MommRenFest 07-15-2003 07:49 PM

SlyGirl67-- We have TRICARE also and it was easy. That company (The VEST) is wonderful and took very good care of us! They worked with us on the copay... shhhh.

My CF-er is a girl. She is going into second grade and is a "Hermione" type student; she LOVES school.

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