MOST HELPFUL POSTS
Jamie - posted on 04/10/2010
Wow thats crazy, hopefully it is a mild case,my son has the deltaf508 too and the other i have posted in the question part asking if anyone has them,hoping its a mild one.ill have to look and come back and post it. Delta F508 and 2789+5GA.
Katie - posted on 04/01/2010
Hi! My daughter is 8 and I rarely taste the salt. Only when she has been playing really hard outside I might. She has done really well with the CF. Mostly just GI issues. I guess we are lucky. Her lung functions remain over 100%. I pray they will stay that way.
Kelly - posted on 03/14/2010
hi jamie, i have a daughter aged 4 with cf, she wasnt diagnosed until she was nearly 2, it took me a long fight to get her diagnosed but i am glad i finally got there as she is now a fighting fit 4 yr old. If you have any questions concerning cf and symptoms plz feel free to contact me at any time, my personal email addy is firstname.lastname@example.org or u can add me on facebook under that email addy under the name of kelly older. i would love to do anything i can to help
Belinda - posted on 03/13/2010
Our son is doing really well. He was diagnosed when he was 4 weeks old, and we found out through a test they do at birth ( Guthrie heel prick) which is a standard test for all babies in Australia.
From what I have heard, a high percentage of babies (well here in Australia anyway) actually find out they have Cf by not passing the muconium at birth...which my son had done
The night we were told the results of the test, I had taken him to the emergency room as I thought he had bronciolitus....which he did, caused by RSV, and had turned into a nasty case of pneumonia.
We were airlifted to the children's hospital in our capital city of Perth, Western Australia, where the CF team is, and he spent 2 and half weeks in hospital, where we also discovered he was having trouble with his weight (he was actually below his birth weight by then...which was a bit of a shock)
He is now on a high fat/high salt diet and needs Creons, daily antibiotics, vitamins, and sodium chloride.
He is now developing like a normal happy baby!
He doesnt cough much outside of physio (if he even coughs then!) but we have learnt to encourage coughing, and only worry if it sounds moist. But even then, if he does develop a moist cough, we can deal with it at home for 2weeks with strong AB nebulizers, then if it doesnt get better, we have to take him to Perth (which is 5hrs away) where it is a minimum 2 weeks hospitalisation (if need be)
As for the salt...we are lucky to live in a cooler part of oz, so he doesnt always sweat, but of course some days are much worse than others.
It was explained to me that salt for him is like a "one way street". Our bodies can reabsorb 70% of the salt we sweat out, where as, CF bodies are unable to do this, and they lose more through urine, poop, tears, breath as well....hence why he needs the high salt content
Its all been a huge learning curve for us, and there are days I feel totally out of my depth as he is my youngest of four under the age of 4yrs, and my eldest is currently being tested for autism too!
Belinda - posted on 03/10/2010
My son is now 10m, and I was told that they are always like that (example, kiss the top of their head, then lick your lips= salty!)
As he was a summer baby, I thought he was always a bit hot before he was diagnosed...now it makes sense! lol
Zoe Louise - posted on 09/28/2010
my baby boy is nearly 7 months old now diagnosed at 6 weeks old and we are still waiting on getting his mutations back! he sweats loads sometimes his hands and feet are dripping!! i worry what he will be like as he gets older!! and he always tastes very salty! xx
Rhonda - posted on 07/23/2010
i have 3 year old twins, almost 4 yrs old..wow. they were diagnosed at birth due to not passing the meconium. Luckily we are by Riley hospital and we live about 20 minutes from there and it is the only CF hospital close. They did an awesome job with the twins. Our little boy was there 5 months and our daughter went home after 3 weeks. They are both doing great. Their lung functions and GI problems are both doing good right now. We are finally just on enzymes. We were on a lot of meds when they were first born but as they got older we didn't need them anymore. Don't get me wrong they still get sick and it can be a little scary but they are such good kids when it comes to being sick. They are truly are miracles. I hope all of your little one stay healthy and continue to grow. It can be scary at first but you learn what to look for and what to do as they get older...
Desiree - posted on 07/11/2010
im still so new to CF i dont even kno what my daughters mutations are. their written down somewhere but thats about it =/ my daughter's biggest issue is GI problems. she takes enzymes & is on high calorie/high fat diet. shes 14 months old now. & was diagnosed when she was a month old after her prenatal screening came back with a positive for CF. she still uses the nebulizer for pumozyne, inhaler for albuterol, vitamins, prevacid & zantac. since she was about 6 months old its been a fight to get her to eat. though she still averaged gaining about a pound a month. and as for getting back to what the thread was originally about, my daughter has never tasted salty. when she was first born she got tons of kisses b/c we had plenty of open houses & all the grandparents (related & non-related) said the same thing about tasting salty & gave her kisses :) none of them thought she was salty lol
Katie - posted on 04/09/2010
She has deltaf508 from me and the other one (can't think of the name right now) is so rare that it has only been recorded in one other cf patient. Maybe because her father is black that she got such a rare one. I have no idea. i just hope it keeps her one of the more "mild" cases.
Jamie - posted on 03/15/2010
Our CF doctor had told us how they figured out the salt helped them,alot of Australian surfers said they felt alot better after surfing,i thought that was interesting! I was also wondering if one of the first signs of it is breathing heavy because he started breathing really heavy today,i am not trying to rub this in any ones face but he is doing so good he is almost 6 months and weighs 21-22 lbs and having no symptoms that i know of the only reason they know he has it cause they tested both me and his father when i was pregnant. The first time they saw him they put him on enzymes right away then the second visit they said he was producing his own he didnt need them and took him off of them.So its really hard to look at him and hes really healthy but to think hes going to lose weight and have alot of problems,it took me the longest time to even believe that he had it,its just not fair, i think that only the really bad people should get diseases,not babies,kids and good people!
Jamie - posted on 03/10/2010
I was just wondering because my son doesnt always taste salty,i thought it was weird. How is your baby boy doing is he having any problems,if you dont mind me asking? I just would like to know what to look for and what symptoms usually happen first.
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