You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
F508 MUTATION
- Thread starter anonymous
- Start date
jmpjules99
New member
my daughter was diagnosed at 3 months too...she's almost 6 months now.
Ya, delta 508 is the most common variation of the gene, as far as I know. I am homogenous for both of them. I guess it's kinda good cause if they ever do find a gene therapy, it will most likely be for this one...I think.
However i was reading a while ago about a new treatment that is a possibility for patients with cf. I think though it only triggered 10% of the cf population that had a certain mutation.
However i was reading a while ago about a new treatment that is a possibility for patients with cf. I think though it only triggered 10% of the cf population that had a certain mutation.
Anonymous1
New member
my son has DF508 and G542X he is 4 now but if you want to talk just let me know.. i have messenger for yahoo.. momtocfr.... and i have aim..... Melissa04281.. and i also have msn which is Melissa04267
Melissa mom to dylan 6 no cf and caleb 4wcf
Melissa mom to dylan 6 no cf and caleb 4wcf
hopefulCFmom
New member
Hi
My daughter is 2 years old, she was diagnosed at 6 weeks because she was failing to thrive. She's doing really good. We've had a few bups in the road. In May she tested positive for pseudonomas???, that was hard to deal with. She is taking Pulmozyme and Tobi now and they have been wonderful.
you can email me whenever you want. Where do you live?
Mayra
My daughter is 2 years old, she was diagnosed at 6 weeks because she was failing to thrive. She's doing really good. We've had a few bups in the road. In May she tested positive for pseudonomas???, that was hard to deal with. She is taking Pulmozyme and Tobi now and they have been wonderful.
you can email me whenever you want. Where do you live?
Mayra
Mayra,
My daughter has never tested positive for psuedo, I am so scared. Does your daughter go to daycare? We live in leesburg, Ga and go to clinic in Atlanta, Ga. By the way Kyndall goes 3 days a week to a in home daycare.
Kristen
wife and mother to
15 month Kyndall w/cf
Tanner 4 yrs w/o cf
My daughter has never tested positive for psuedo, I am so scared. Does your daughter go to daycare? We live in leesburg, Ga and go to clinic in Atlanta, Ga. By the way Kyndall goes 3 days a week to a in home daycare.
Kristen
wife and mother to
15 month Kyndall w/cf
Tanner 4 yrs w/o cf
hopefulCFmom
New member
My mom lives with me and takes care of her while I work. I'm very blessed to have such wonderful help. Is she on enzymes or any treatments?
I live in Yucaipa Ca and go to Loma Linda Childrens Hospital. It is very hard to find other parents that can relate to what we go through. My daughter has had a few respitory infections. Last flu season my older daugher start kindergarten and she got every single bug. Of course Emma and the rest of us did too. I was so scared at first too! Emma amazes me though. She is soo happy and fun! She makes me laugh all the time. Like I said, in May we found out about the pseudonomas and that was almost as scary as finding out about the CF. I didn't really know what to expect, but it did make the disease that much more real. Hang in there!
I just found this site a couple of weeks ago and it's been great. There is alot of experience and help here! Send me an e-mail whenever you want.
mayra.garcia@hotmail.com
Take care!
I live in Yucaipa Ca and go to Loma Linda Childrens Hospital. It is very hard to find other parents that can relate to what we go through. My daughter has had a few respitory infections. Last flu season my older daugher start kindergarten and she got every single bug. Of course Emma and the rest of us did too. I was so scared at first too! Emma amazes me though. She is soo happy and fun! She makes me laugh all the time. Like I said, in May we found out about the pseudonomas and that was almost as scary as finding out about the CF. I didn't really know what to expect, but it did make the disease that much more real. Hang in there!
I just found this site a couple of weeks ago and it's been great. There is alot of experience and help here! Send me an e-mail whenever you want.
mayra.garcia@hotmail.com
Take care!
Lynsey,
Hey it's Kristen again. Is Delta F508 the same thing as Double? Kyndall is doing really good. She gets sinus infections a lot, but antibiotics do the job. She is going to daycare 3 days a week now. I'm thinking about going back to work full time. I am so scared though. She is wonderful, she keeps us laughing! She has a 4 yr old brother and she tries to keep up with him. Yes she is on Creon 5 (2). We stoped breathing treatments back in the spring, because I did'nt think she really needed them. Her doctor agreed. Now we only do them when she is sick. It seems to be working. I feel like they work better when she is sick. I'm curious to see how she is going to do this winter. I am using my moms comp. now, I am going to get mine hooked back up at home. So I can talk more often. It feels good to talk to someone who understands.
Kristen
Hey it's Kristen again. Is Delta F508 the same thing as Double? Kyndall is doing really good. She gets sinus infections a lot, but antibiotics do the job. She is going to daycare 3 days a week now. I'm thinking about going back to work full time. I am so scared though. She is wonderful, she keeps us laughing! She has a 4 yr old brother and she tries to keep up with him. Yes she is on Creon 5 (2). We stoped breathing treatments back in the spring, because I did'nt think she really needed them. Her doctor agreed. Now we only do them when she is sick. It seems to be working. I feel like they work better when she is sick. I'm curious to see how she is going to do this winter. I am using my moms comp. now, I am going to get mine hooked back up at home. So I can talk more often. It feels good to talk to someone who understands.
Kristen
Hi Kristen,
Having 1 copy of the delta F508 is not the same as having the double delta F508....but have they told you that she has 2 copies of the delta F508? Just curious....
Just wanted to say that I have the double delta F508 and am 32...and am doing fairly well -lungwise anyway. Ive developed other complications over the years...but nothing I havent been able to handle! Take Care!
Dea
Having 1 copy of the delta F508 is not the same as having the double delta F508....but have they told you that she has 2 copies of the delta F508? Just curious....
Just wanted to say that I have the double delta F508 and am 32...and am doing fairly well -lungwise anyway. Ive developed other complications over the years...but nothing I havent been able to handle! Take Care!
Dea
Kristen,
My daughter is relatively healthy as well. Just a few colds and sinus infections occasionally. But we still do pulmozyme once per day and do the Vest twice per day for twenty minutes in order to prevent her from getting sick. We think of the treatments as prevention. Do you see a CF specialist at a CF accredited center?
My daughter is relatively healthy as well. Just a few colds and sinus infections occasionally. But we still do pulmozyme once per day and do the Vest twice per day for twenty minutes in order to prevent her from getting sick. We think of the treatments as prevention. Do you see a CF specialist at a CF accredited center?
Lynsey,
Kyndall sees a cf specialist in Atlanta, Ga. I'm not sure if they are accredited! That is a good a question! When did you start the vest? Kyndall is not old enough yet. We were doing pulmazyme, xopenex and pulmicort every day, but in the spring we decided to take her off. Because, she was doing so good. I felt like if she did'nt need it then why give it to her. The pulmazyme can make your lungs bleed. Now I do give her the tx when she is sick and sometimes the pulmazyme. I hate doing the tx. When she started walking it got so hard b/c she want sit still! She has so much energy it's hard to do chest percutions. I don't know I hate the whole thing. I feel so sorry for her! She is so sweet and innocent! Why can't she be normal. I put her in daycare with her brother so she can interact with other kids. I'm not working right now, but I'm probaley going to go back to her peds office. I was her peds doctors nurse. How covenient? Could you imagine the look on his face when I got her test results off the computer? It was devastating. I don't have my computer hooked up write now. I'm using my moms. You can write to me at 239 St. Clair Dr. Leesburg, Ga 31763
I enjoy talking to someone else who understands!!
Thanks,
Kristen
Kyndall sees a cf specialist in Atlanta, Ga. I'm not sure if they are accredited! That is a good a question! When did you start the vest? Kyndall is not old enough yet. We were doing pulmazyme, xopenex and pulmicort every day, but in the spring we decided to take her off. Because, she was doing so good. I felt like if she did'nt need it then why give it to her. The pulmazyme can make your lungs bleed. Now I do give her the tx when she is sick and sometimes the pulmazyme. I hate doing the tx. When she started walking it got so hard b/c she want sit still! She has so much energy it's hard to do chest percutions. I don't know I hate the whole thing. I feel so sorry for her! She is so sweet and innocent! Why can't she be normal. I put her in daycare with her brother so she can interact with other kids. I'm not working right now, but I'm probaley going to go back to her peds office. I was her peds doctors nurse. How covenient? Could you imagine the look on his face when I got her test results off the computer? It was devastating. I don't have my computer hooked up write now. I'm using my moms. You can write to me at 239 St. Clair Dr. Leesburg, Ga 31763
I enjoy talking to someone else who understands!!
Thanks,
Kristen
I just lost my son Nov 30 2005 at the age of 25 due to an allergic reaction to medication he was admistered thru his chest port. He was on a list for a lung transplant for three years. It just never came thru. I never expected his meds to do him in the way they did. Believe me when I tell you this, I feel your pain. You May write
Don, Father of 1 son w/o cf
1648 Cypress Point Ln
Winter Park fl 32792
Don, Father of 1 son w/o cf
1648 Cypress Point Ln
Winter Park fl 32792