MY 8 YEAR OLD has cf

[gehrigfamily]

this is a whirlwind for us and our family.I am guessing by what i have read thus far from other posts that we are very lucky that my son has yet to be sick at all.He was sent to a growth expert because he was not growing very fast at all.He is 39 lbs and just under 3 feet tall.they diagnosed hhim less than 1 week ago with the sweat test and he was hospitalized for 1 week for further testing and treatment regiments.Our son does have symptoms now that we look further into cf as his digestive tract was not working properly. His lungs at this general time are at 100% capacity and strong at this time. this is awesome news for us for such a disabling and debillitating disease.we have 3 other children to yet test and 1 of real concern as i am the father to only my son and 1 daughter and stepfather to the 2 oldest. Is this normal to see my son in such great health for this disease? they onlly found it because he was so short and the pediatrician was oncerned over his height problem. My son has never even been hospitralized because of sickness as of yet in his short and glorious life.Please respond and let me know if this is common for cf.

 

[anonymous]

Cf varies from person to person, from one extreme to the other. Also the cf problems vary too. Some ppl have severe lung problems others have non at all, and some are in between. The same can be said for other cf related problems, eg, digestion, the liver, sinuses, gastro. etc. However, your son has an excellent lung function and so that is very encouraging!
Treatments are advancing each day, and its great that your son has been able to live 8 years with minimal symptoms. I wish you and yours luck, Shamrock, x, 17w/cf/dx in 1987

 

[anonymous]

I think it's great that your ds is so healthy. I am surprised though that he was diagnosed earlier given his size. My ds is 42.5 #s at 7 yrs. His drs watch his weight very closely. 39# at 8 is very small. Good luck and ask if you have any other specific questions.

 

[anonymous]

The other posters are correct, CF varies from person to person-even in those that have the SAME mutations. There is thought that there exists a modifying gene for those with CF, but that has not been determined yet and there is still a lot of research going on about that. That research may be able to answer a lot of questions for all of us in the next few years.

It is great to hear that your son is doing so well! My husband was diagnosed at 18 months for failure to thrive and frequent lung infections/pneumonia. He was fairly sick on and off in his childhood, and then at about 9 things started getting a lot better for him. A few years after that they were testing TOBI and he became a part of that study, same with DNase and then he got a thumper to help his mom out with the Chest PT. He remained as active as he could (it is important your son do this) with PE in school, after school sports-especially soccer, which he played until he graduated. He is now a full time college student and will graduate next May. We are also doing in-vetro in October and hope to have a baby next summer...So, life does go on, as normally as possible for those with CF. He still does his chest PT everyday (with a vest now though) his Dnase everyday and his tobi when he has lung infections-but aside from that, you would never know he has CF. Just make sure he continues to be active, sports, playing like kids do-if he can tolerate that's great. You didn't mention if there was any lung involvement with his CF (maybe just digestive??) but the activities will keep his lungs as healthy as possible. Also, how's his food intake? Is he a picky eater? There's some good suggestions out there for parents with kids like that, especially since it can be such an issue with CFers. I am glad that your son is so healthy!

Julie (wife to Mark 24 w/CF)

 

[gehrigfamily]

all appearances are that thus far this is just digestive so far.he has never been hospitalized for lungs flu or other respiratory problems. They are worried bout his weight/height at moment. This is so overwhelming to us and i cannot believe the support that is growing for our son with this disease.We hope to gather awareness for cf through this and to raise a cure. We also found that our son is a carrier for celiac disease as well but he does not have it. His tests on digestive tract show him to be working well at moment as well. We are told to just let him eat as much as he can and up his caloric intake,salt,enzymes and high fatty foods.I pray that since at this time he is healthy other than being short he stays that way. Me and his mom have great immune systems.other than this gene mutation my son appears to have a good system as well.

 

[anonymous]

Wow, That is the same scenario that happened to our family. My son was diagnosed in 2003 and he was 8. We went to a new pediatirician with the concern of low growth. He was under weight and under height. He always had asthma problems from 2 months on, but was never checked for CF when he was a baby. Anyway, we have been referred to a great CF physician in our area and he is doing well. His digestive part is fine, but we have the respiratory problems on and off. He spent his 2nd hospital stay this past month for 6 days. But I am thankful that his is not as bad as it could be. I am glad also to have found this site, its nice to find a place where other people understand what its all about.