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Our next clinic appointment is in August. I am going to ask to start the breathing treatments and CPT.

What does it mean by the R117H mutation is protective of cfrd?

Yes, she had 164 two hrs after eating. Three hrs after eating it was 147. Saveferris, what were your results?

I found an article on reactive hypoglycemia and OGTT. Http://hypoglykemie.nl/gtt.htm#pre-hypoglycemia

I'm going to keep track of her levels. I couldn't wake her up one morning and that alone is enough to keep checking it. She scared us!

Saveferris, you're the reason I am going to continue to monitor her levels. She has had some highs. There has to be a reason for it. Thanks everyone!!

They said it would take a couple of weeks for the doctor to get back to me. I'm going to assume its normal. I will continue to monitor at home just because she's had some a little high.

Well, now I don't know what to think. Originally I thought she was having episodes of hypoglycemia and then we started testing at home and she never had any lows but she had some highs. The results today were all normal except the two hour one was a little low. Fasting - 84, 30 minutes -...

She is 6yo. She sees the cf specialist every 3 months. She does throat swabs and PFTs at every visit so every 3months. She does not do CPT or breathing treatments. I'm trying to decide whether to ask him thru email or wait until her appointment in August about starting breathing treatments.

Sanfloraine, my daughter is diagnosed cf related metabolic syndrome for now. We are also in diagnostic limbo! One cf disease causing gene, borderline sweats, positive for cf on colon biopsy, FTT, she couldn't finish NPD. We are now testing for cf related diabetes.

Agree with Jenny!

My daughter is having the OGTT test tomorrow. We've been monitoring blood sugar levels at home. We did fasting levels and two hrs post prandial. My guess is they will want you to monitor at home first? I'm new to all this! Saveferris,Havoc and others have been very helpful.

Well, I got her records and they requested the wrong ones! Go figure! I have to request them again!

We are right there with ya!! Can you request to check her blood sugar levels at home? Especially when she has symptoms. Jasey is having Glucose tolerance test on Friday. I don't know if it will show anything!

I requested a copy of her results. I should be getting them in the mail any day now.

Yes, she has one disease causing mutation and the other mutation is thought not to be disease causing!

We go to Cincinnati children's. She is seeing a cf specialist. The problem has been in getting her diagnosed! She is currently diagnosed cf metabolic syndrome. I'm thinking this needs to change to cf and maybe treatment will change! She's had bowel resection, FTT, minimal cftr function in...

I will talk to cf doc about it. Thanks everyone for your advice! I want her to have the best care!

She is very active! Loves to ride her bike, run and play. There is definitely not a lack of exercise! Maybe that's why her lung function is good?

Should my dd be doing breathing treatments and vest? She has not been prescribed this. Our cf doctor said her lung function is good and she has only cultured staph A. From my understanding most people don't treat. Any thoughts?