Search results

My son who will be 15 in 2 months got a g-tube 10 years ago. I had never heard of a feeding tube for acf patient ( now it is very common) They showedusa film witha child with one He was severly mentally and physicaly handicapped (you can imagine how that made him feel. He got one after much...

My son who will be 15 in 2 months got a g-tube 10 years ago. I had never heard of a feeding tube for acf patient ( now it is very common) They showedusa film witha child with one He was severly mentally and physicaly handicapped (you can imagine how that made him feel. He got one after much...

My son who will be 15 in 2 months got a g-tube 10 years ago. I had never heard of a feeding tube for acf patient ( now it is very common) They showedusa film witha child with one He was severly mentally and physicaly handicapped (you can imagine how that made him feel. He got one after much...

If he doesn't improvegreatly have him tested for mono. My oldest (no CF) had it this past fall he tested postivie for strep but did not improve after two shots of penicillian Then they tested him for mono.

If he doesn't improvegreatly have him tested for mono. My oldest (no CF) had it this past fall he tested postivie for strep but did not improve after two shots of penicillian Then they tested him for mono.

If he doesn't improvegreatly have him tested for mono. My oldest (no CF) had it this past fall he tested postivie for strep but did not improve after two shots of penicillian Then they tested him for mono.

Stacy, You may already know this and I am not talking from personal experience rather it's from a friend of mine who has a daughter w/CF. Normally the daughter had been very healthy. Once on a vacation they had to make an emercency trip to ER. Vomiting and short of breath. Turns out their...

Janet I totally relate to what you are saying. I've been living with this for 14 years. Sometimes when people say"you handle it so well" I want to scream "No, no I'don't. I just act like I do. Do I really have a choice?" Sometimes all it takes is the sound of a certain cough that makes my...

We also have BCBS,but about a year ago our policy changed and we are allowed to go out of state. An option we have considered because we are so frustrated with Albuquerque. I guess I need to clarify it's not the clinic in Albuquerque that we're frustrated with as much as the hospital. We have...

I just tried replying and it didn't work. I've never had that happen before. I'l try again. I live in New Mexico (I've never met anyone else on this board that does). If you're moving to Silver City you'll be about 4-5 hours away from Albuquerque. That is where the only CF Center is in the...

My son has always had bad leg cramps. We've been told it is not Cf related but I've seen too much posted about it from the "experts who live with the diesease' tobelieve the doctors. Terri

It's me again and trying to make the best of things with my teenager. He is 14 and has had a g-tube Mikey button since he was 5. For the first time in his life he is finally above the 25% in weight. Now he wants to take the g-tube out. I can imagine what his doctors and nutritionlist will...

Thanks he does have a really good friend (friends for that matter) Right now I am trying to give him as much control as possible and to take responsibilty. I know in a few short years when he goes to college the ball will be totally in his court Terri

Thank you for all your replies. I posted that question and then left town for several days and just now got back. I had thought of delaying his TOBI that's what his Dr's had advised before. This time it is impossible. As far as talking to the Dr's himself he doesn't he is almost rude at Clinic...

I need to ask your opinions and solutions. I have 2 children with Cf 9 yr old girl and 14 yr old boy. They are very complient with their med's and breathing treatments we just work around life. Here is my problem my 14 year old is headed off for a trip 5 days without us; Just his peers and...

Kathy, It does sound strange to me that they won't communicate better with you. Although my son has had a couple of bronchs done and he has grown some unusual things that take awhile to grow out on the culture before they can identify and therefore decide how and if they're going to treat it...

Renee, Thanks for your response. Iknow what you mean about so many other issues that sometimes I don't have time to address things I plan to address in clinic. Especially with siblings. How do other clinics handle siblings? My son is having a lot of sinus problems I sometimes feel it gets...

Debbie We live in New Mexico. I have lots of family in Oklahoma and have wondered about the CF Clinics threre. Terri

Dear Barry and Jill, Yes, my son cultured Norcordia 4 years ago. He was 10 at the time and had had a really terrible year before he cultured it. He had had 3 tune ups in 9 months and in between kept having pnuemonia. I think he had had it for about that long before he cultured it. I have to...

Jane My son will be 14 tomorrow. He just finished 2 weeks of IV's primarily for sinuses. Today the wind is blowing and he is really congested. He hates sinus surgeries he finds little relief from them. He also refuses to go to school when he takes IV's but hates missing out. What about your...