when did your symptoms start to show?

[lrs2015]

Now I know everyone is different..... different mutations, and even the mutations though may they may be the same. Affect the persons differently. But I was wondering as a oarent of one w/ cf (ddf508) well when did you start showing your symptoms? How when the cough realky started forming? Are there any ddf508 that are can digest food? What types of excercises do you do? Anyone on kyldeco, or other and gotten better?

 

[Ratatosk]

Ds was born with meconium illeus, so his were digestive to start. His baseline was and at age 12 today is no cough. We started cpt and nebs right away at a few days old to keep his lungs healthy. That said at 3 months the first respiratory sign was culturing pseudomonas. He had sinus issues right away with his extra thick mucus. When he did cough it meant he was coming down with something and we'd increase cpt from 3 to 4 times a day. As for exercise he was at a daycare that stressed outdoor activities and we had him in swimming and gymnastics. We've had him in skating, tennis lessons. Today he's just in gymnastics. Exercise and keeping active is important in addition to treatments

 

[imported_Momto2]

I am ddf508, born in 1971, Apgars of 10. I immediately went downhill after birth. By the time I was 3 months old, I'd had 3 cases of bronchitis or pneumonia had LOST 2 lbs from my birthweight of 6.5 lbs, been hospitalized almost constantly. They finally diagnosed me with CF. To give you and idea of how things have changed, the docs (and this was in BOSTON, not some podunk no-name place) told my parents there was no hope, gave them no advice on how to treat me, and sent me home to die. YEEHAW.

My parents found a different doc, in NYC, who immediately put my on enzymes and started me on nebbies and CPT 4x a day. I struggled with failure to thrive and lung infections constantly. At age of almost 10, I was 38 lbs and tiny. Did hyperalimentation in the PICU for 6 weeks at 10K calories a day, put on 20 lbs. That led to a turnaround in my health and I grew. Less lung infections, but the GI stuff was still pretty bad and painful. I was a runner as a child, rode horses every day too, tennis, swimming, hiking, you name it.

Fast-forward to early 20's. In college, I figured out that if I didnt eat fat, and stuck to fruits, veggies, lean meats, and fat-free dairy, my GI issues went away. Stopped taking enzymes, and started having no trouble keeping weight on. Now I'm amost 44, with a very healthy BMI. My lungs have deteriorated over time, but I have always remained super-active and was a professional athlete for years until my lungs got really bad. I am still very much PI, but as long as I dont eat fat, my weight is great. So it's weird, but its worked for me. (as an interesting aside, I went to Bermuda resort last week, pigged out and ate a lot of stuff I shouldnt have, and LOST 3 lbs over the 6 day period. When I got home, I went back to my fat-free regular diet and put the weight back on with no problem).

 

[lrs2015]

Thank you both for sharing! It means a lot to me to hear others and I appriciate it very much.

 

[welshwitch]

I was dx at 9 months because I just couldn't gain weight. My mom knew there was something wrong, and finally got a correct diagnosis! I started to put on weight immediately when I had the digestive meds and things turned right around

Fast forward -- I'm now 35 and doing very well. I live a pretty normal life with a few hiccups here and there. My symptoms these days include a mild cough that I'm sure most people think is allergies or asthma. I have to take digestive meds too of course. My daily treatment includes a breathing treatment in the am (pulmozyme). My health is excellent and my lung function varies from the mid 90's to the mid 100's %. Weight wise I am stable with a weight of 130 lbs and I'm 5 foot 3.

I manage my CF with a combination of rigorous exercise and meds (running and cycling several miles per week). I find that that is just the best treatment regimen. Really sweating just detoxes all the bad bacteria out of my lungs. I am fortunate to have a full time job that I can bike to!

The mental challenge of my disease is the hardest part. I try to practice mindfulness, acceptance, and stress reducing techniques to deal with it. Think of the bigger picture, and not forget to be grateful.

 

[lrs2015]

Thank you for sharing. I'm glad to hear that your not letting it define you.

 

[leecee]

I am the parent of a daughter with CF. We noticed that she was often coughing and had a runny nose after she started preschool. She had always been small, in the 25th percentile for height and weight but I am a small gal so we just figured she was taking after me. She is pancreatic sufficient so we do not have those issues. She used to do Tae Kwon Do but we just moved to a new state a week ago and have not started any athletics at this time. I would love for her to exercise more but she does not like organized sports. She has shown an interest in swimming so I hope she can start that at her new high school. She has been on Kalydeco for 3 months. I do not notice any improvements. We were told that we would not "see" improvements. When she gets a new sweat test done after a year of being on Kalydeco, then I might have more information.

 

[Aboveallislove]

DS just turned 6 and was diagnosed at 12 days with newborn screen. He is ddf508. Before the diagnosis he was very gassy and barely did stools. I had a poop prayer even before I knew the CF because he wasn't pooping! (I still "laugh" as I explained to my sister in law what was going on and she said "that's call gas." I'm like no sh!t Sherlock, my point was it didn't seem right. He's always had GI issues. He's always had a little cough but more like an irritation which I think is acid reflux (and it was always worse at night when his tummy was backed up.) He cultured staph from 2 weeks old and has for 6 years, sometimes 2 strains and sometimes little, sometime moderate, and sometimes numerous. The did one round of Bactrim the second culture but then left it be since no issues. He cultured h-influenza for about a year starting at 3, I think, but hasn't for over 2 years. He hasn't had any sinus issues that we know off--he can smell EVERYTHING and his nose runs easily with his meds (we use a mask to get the sinus' too), but he has dark circles under his eyes and always has (I never noticed because always there but my dad asked once whey he had 2 shiners) and my understanding that is related to the sinus. He use to cough after running...not a hack or a productive one but a twitchy one but that stopped after he started Qvar and dr. said asthama component which makes sense given his lung function tests we did when under 2 (in an incubator type container). He's been on Xopenex 2x a day nebbed, since 2 weeks and 2x a day percussion and then vest 2x a day since 9 months. Started Pulmozyme about 2-3 months. Started hyper-sal around 2 and does 7% 2 a day. Started Qvar around 3 or 4? Does enzymes, Aqua-deks, vitamin D, culturelle, miralax, milk of mag, zantac and prilosac and has done all for some time (vitamin D newest about 2 years ago when Vit. D levels low). His issues are mostly GI now and had one hospitalization for DIOS and 2 ER visits, plus lots of testing. Has only had that one round of antibiotics when a few months old (oh, other than Flagyl and Flagyl like drug 3x total for GI issues). Hasn't had any colds, flu, sinus, or ear infections. He can't do the spirometer well yet so not sure how the FEV looks. His Xrays were showing "minimal" inflammation with no change until this year where it said "mild" inflammation but also said it could be due to angle. So we've been very blessed with the lack of sinus and lung involvement, but it is there...as the cultures and lung xrays (and black circles) shows ....but very thankful.
Oh, and he has horrible aquagentic wrinkling which is the "permanent" status of his hands now...they are always puffy around his fingers and he has the white blotches and blister like bubbles all the time and when he is in water for even a quick 5 minutes bath with his hands on the side of the tub, he is always crying saying his hands hurt for 10 minutes after.

Re the exercise: We do lots of running games and always have. We play "doggy and rabbit" which is where he's a rabbit trying to steal things from my garden and I run to catch him. "I get faster as I get older and mommy gets slower as she gets older." Or we play Dingo and Officer Flossy. Run around the house to the Wiggles or 80s music on Pandora (he throws out random quotes from 80s songs which is hilarious when I catch them!!) And we play running hide and seek: I hide and then he pretends he can't see me and says "I think I'll look behind the couch now" and then I dart to another hiding spot and it is just a huge run fest. It doesn't sound like much, be we are running hard for 10-15 minutes at a time and then he strips to his underwear (if we're in the house) and sits on a sheet because he is drenched in CF sweat!!
Hope this helps.
Hugs and prayers,
Love

 

[lrs2015]

Thank you guys so much!