Recent content by suziesmom

Ok. My only child, my daughter Suzie, is 25 years old. She was diagnosed at 11 years old. We just learned of her mutation about a year ago. We always knew one was the Delta 508. They have finally found the other but they said no one else has it. And it does not have an easy name. I will...

My heart breaks for everyone with CF and any other disease/condition that takes so much away from their life. My daughter is 24 with CF, diagnosed when she was 11. No one else that we are aware of in my husband's or my family has had it. My Mother was diagnosed back in February with Mantle...

Hello Amy and thank you so much for your idea. We will try ginger tea with honey and see if that works. I treasure every answer from each person on here, because many times we all know better than the Dr's do. Thank you!

Thank you so much for the reply. They did put her on an anti-nausea pill and you are right, they don't do much. And yes this does certainly suck! Thank you so much for your reply.

Thank you for the reply! When she coughs it turns into gagging. She cannot drink plain water because she says it "mixes with the taste of the sputum" and makes her gag even more. She rarely vomits, but is gagging a lot and can't seem to talk or get her breath afterwords for a few minutes...

My daughter is 24 and has CF. We know the one mutation is the Delta 508. The other is a very long sequence of letters and numbers and no one else has it. Lately she has become extremely nauseated. She has not vomited, but she does gag. Any help at all would be sincerely appreciated...

Wow......... Someone else who was told they were overprotective. My daughter who is now 24 was not diagnosed until age 11. And it was only because of my insistence to have her checked for allergies. Her regular Dr. continued to tell me it was "just allergies" and to give her Robittusun DM. I...

THANK YOU Teri! Only one reply but a very informative one. You have no idea how much I appreciate your time. If you or anyone else ever hears of anything that could make me understand her mutation better please let me know. Thank you again Teri!

We found out last year my daughter's mutations. No one, according to them, has her specific mutation. Here is what it said: 869+1 869+4 delGTAA insACATTATT 1521 1523 delCTT (p.Phe508del) Legacy Delta 508 Sorry I know this is highly confusing. I got it that...

I have heard of neuro-muscular disorder. Exactly what is it and how is it diagnosed? I have heard that many people with CF have it. suziesmom

Hi. I know how you are feeling right now. I had my daughter a month away from my 32nd birthday. She was not diagnosed until she was 11. The pain and anguish we went through was all-consuming. It is but a memory now. She is 24 years old and besides a few treatments (vest/pulmozyme/cayston...

My daughter was diagnosed at 11 years old. I told her doctor that I wanted an allergist to see her. He said it was'nt necessary but he gave me the referral. Before that, he continuously told me to give her Robitussin DM, and that it was nothing but allergies. I took her in to the allergist...

I love your posts and comments Printer. Keep them coming please .

Caden, You are most welcome for the reply. I am sending many well wishes your way. And if I don't hear from you before your 21st............ Happy Birthday to you!

Hi Caden. My daughter is 24 with CF. A couple of times she has had a "mucous plug" where she has the same symptoms as the ones you are describing. She has been on Tobi before but for her it made her very nauseated and she now does Cayston instead. Be aware, nothing works for everyone and you...