Search results

Beccamom, Jasey had clinic today and they changed her diagnosis to cf. not sure what happened, don't know why it went from CRMS to cf. she is starting cf vitamins, vit d, scandishakes. Talked about vest and breathing treatments in near future. Shocked. Email me again I didn't get the first...

Both are ok. Jasey has been sick on/off since school started. She's lost some weight. We go to cf clinic on Wednesday and worried what they might say about it. I've tried to send you pm. I never received the ones you mentioned above! Not sure what's going on. How are you feeling? Are...

I tried to send a pm but for some reason couldn't get it to work. How are you and Becca?

My daughter has cultured H. Flu three times and Staph. A twice. Her cf doctor doesn't treat either one of them.

That is so crazy!! I hope you feel better soon.

Awesome!!

I've tried to desperately to help my brothers. They don't have cf but a different medical problem. What it comes down to is you can't force anyone to help themselves. The only thing you can do is make sure she understands the impact this will have on her child. Tell her she needs to fight...

It is terrible when you are in the hospital and you have a rude, condescending nurse!! I had a nurse removed when my Mom was in ICU. You have the right to be treated better than that and to request a different nurse. I work in the health field and worked at the very same hospital where I had...

I agree with others..you need to see another cf specialist.

Jasey is 6yo. She is also on creon.

My daughter is also having high readings occasionally and her OGTT was normal. She sees endo on the 31st. I am requesting a continuous glucose monitor for two weeks so we get a good idea of what's going on with her. How old is your daughter?

Many prayers for your entire family.

I found this article about residual cftr function vs minimal cftr function and when to expect to culture cf bacteria. In the article are tables with average age of when to expect to culture. Jasey is residual cftr function, I think. Www.biomedcentral.com/content/pdf/1465-99-21-11-140.pdf

Sent friend request ...misty

I have no advice but good luck! That's a lot to handle! I know you will do a great job of taking care of yourself and your daughter.

Jasey was acting tired, crying today so i checked her expecting it to be a little Low and it was 207. I just checked a little bit ago and it's been two hrs since she ate and it's 181. How can she have a result of 61 after two hr blood glucose tolerance and have 207 tonight?

Endo just called. She said all the results aren't back yet from the OGTT. She will know more once she gets the results in. She said to make sure she eats and doesn't skip meals while on vacation. If she is acting funny and blood sugar is below 60 to call squad. She said Jasey's weight is...

I tried taking singulair with Advair this past spring and it made me feel odd so I stopped taking it. I didn't feel right on it and it didn't help anyways.

I don't know what it's like to lose a sibling especially when you both have the same disease but I do know what it's like to lose both of my parents. My mom had pulmonary fibrosis and chronic pneumonia. I watched them both die from respiratory distress. I know it's not the same but just...

Has anyone else also cultured Staph A in their urine? Jasey has cultured it twice in her throat swabs but now she has cultured it in her urine. I don't know if this is normal or should I be concerned? At Cincinnati children's you can get online and read lab results prior to talking to...