Any kids without weight gain problems?

[Michelle]

Terri,
is your daughter currently taking pancreatic enzymes? If not, do you think your doctor would prescribe them? If she is pancreatic insufficient, the enzymes should improve her bowel movements, and her energy level should improve because her body will be better able to absorb nurtients. Grayson takes Pancreacarb. He takes 6 with meals and four with snacks. Also, does your daughter taste very salty when you kiss her? Even though Grayson wasn't diagnosed with CF until he was 7, I had asked his pediatrician when he was only an infant about CF because he tasted very salty when I kissed him. The pediatrician blew me off. No, he is no longer Grayson's pediatrician. Sometimes when Grayson sweats heavily, like when he plays soccer, you can actually see the salt drying on his skin. Was your daughter's sweat test performed at a CF clinic or at a local hospital? I would have the test performed at a CF clinic. Also, I have read that CF can cause developmental delays in children. I know Grayson began losing his baby teeth well after his friends began losing theirs.

 

[my4kids]

She is not on any enzymes right now but I am hoping to get into that as soon as possible we are waiting for the cf clinic here to go over her records and call us when they can get her in it seems like a very long drawn out process her ped is very good when it comes to the regular stuff but is unsure about some of her issues and wants to have it all go through the cf clinic. 3 of my kids including my 6 yr old have some sort of developmental delays all kind of varying 2 with serious learning disabilities (though when it comes to everything away from school very smart but my 10 yr old can't read due to sever dislexia) the same 3 have some fine motor delays and the only thing with my 4 th is she is really little but hasn't really ever been sick just little. My 6 yr old has always been sick with something or another and one of her biggest problems in the last year is heat intolerance she has been close to heat stroke several times last summer and once this year we have gotten to almost trying to keep her inside all the time if it is very hot outside because she gets a fever of over 102 or more just being outside and we live in oregon. she is the one we are most concerned about but my oldest son who is 10 has had similar issue just not as obvious so we did not think to much of it till all this stuff with my daughter and his asthma and coughing alot is getting more common he has had a chronic cough since about february and now stomach problem that he used to get occasionally is starting to be most of the time so we are working on getting him in to. The both sweat alot both during the day and at night even sometimes in the winter. They get the worst off when anyone gets sick and the only way to get them better is strong abx like zythro because they both had so many ear infections because of constant fluid in there ears that they are both resistant to lower abx like amoxicillan. <img src="i/expressions/face-icon-small-confused.gif" border="0"> thank you for responding to me I have been reading a lot here and think I need to start pushing a little more.

 

[Michelle]

I know you must be worried and frustrated. Terri, I can't stress enough that you should push your doctors hard for answers. It sounds like your pediatrician is doing the best he can. Everything seemed to move pretty quickly for us once we started to see a specialist. Luckily, the pediatric GI doc our pediatrician referred us to just happened to work out of a CF clinic. After we expalined Grayson's symptoms and he examined him, the first thing he said was that he wanted to test him for CF. We did two sweat tests that both came back high; however, because Grayson hasn't had any respiratory illnesses, they went ahead and did the DNA testing. Grayson has double Delta 508 genes. It's common, so we we were able to get a firm diagnosis. we were immediately set up with a pulmonologist at the CF clinic. Regarding the developmental delays, we just had to hold Grayson back to repeat third grade this year. His reading skills just weren't good enough for us to feel good about him going to fourth grade. I think this extra year will help get him caught up. It's funny, but he even seems to be reading better now than at the end of last school year. It's like the extra time over the summer helped. He has been tested for Dyslexia, but he doesn't have it. He does, however, have to take Concerta for ADD. He just cannot stay focused without it. The reading is the only thing other than things like losing teeth later that seems to be noticable. He will probably go through puberty later than most kids due to CF. Grayson has had a few problems with heat. We live on the coast in Mississippi, so we let him drink Gatorade a lot, even in the winter, just to help replenish the salt his body can't process effectively.

Terri, if you would like to e-mail me, my e-mail address at work is ewmall@bellsouth.net

 

[mommyof3]

hi i am a mom of 3 kids with cf and 2 of them have absolutly no problem gaining weight but the oldest of the 3 has some major weight issues to the point of a g tube and is still under weight i belive it to be a different case for different kids

 

[anonymous]

Hi!
My daughter is two and she has no problems with her weight. She weighs about 29 lbs. So far the doctor is happy with her as well. Its strange how this disease works, huh? You never know what to expect since every case is different.

Lynsey,
Mom of Avery(2 with CF) and Rhett(7mos. w/0 CF)

 

[KiraBill820]

my son Mason is 11months old and weighs 14lbs 2. oz. has gained only 2lbs. since Feb 04 was 5lbs 15oz. at birth, hei s 25inches long, he went to an Endocrinologist, said he didnt feel he needed a Endocriin Doc, so he saw a Gastro Dr. today, and is scheduled for a sweat test b/c he is under the 4th percentile and he also has acid reflux, he will be 1 Oct. 5th!!! but after the Doc. ordered the sweat test today, I came online to research CF. we have a childhood friend w/ it and we know what he has gone through his Dad was the CVheif of Police here in town and gave it up to help his now 30 y/o son!! I hope all goes well with my sons sweat test

 

[anonymous]

Loretta keep trying for SSI it took my mom 6 times to get them to accept me

 

[cfgirl2008]

im 15 and i weigh about 96 pounds even though you might think thats to skinny the weight looks okay on me it doesnt make me seem soooo skinnky i would like to gain some more weight though.im 5 feet and 2inches. if you have anything that would help me gain weight i'll appericate it. thanks


tiffany 15 w/cf

 

[cfgirl2008]

*skinny*


tiffany 15 w/cf

 

[anonymous]

just thought I'd share. My CFer is 5.5yrs old and weights and outragous 60lbs. way to go baby girl!!!!!

she has no lung issues but does have alot of problems with her bowels. MOstly she will not go anywhere but home. we litteraly need to drive, well speed to get home from the mall so she can go. we have tried everything she even refuses at school, she will hold it all day. we have tried rewards, presents, everything. any ideas???

 

[anonymous]

Oh no.....I am worried this is going to be a problem for my daughter when we finish potty training. I don't have any advide, except good Luck!

 

[Emily65Roses]

To the mom whose child won't go in public... that may never change. I won't do it either, I learned how to hold diarrhea for entire school days when I was in 3rd and 4th grade. It's really tough to go in public when you are so loud, you're in there so long, you smell so bad, it's so greasy or whatever else, etc. Too embarassing. I'd say keep trying, but don't necessarily expect too much of it. I still won't go anywhere except my house, my boyfriend's house, and my apartment at school.

 

[wanderlost]

I am 28 and was diagnosed when I was 6 weeks. I've never had trouble gaining weight and I have never taken any nutritional supplements - though I do take Creaon 20 at each meal. In fact, I am actually getting a little pudgy as my 30's are approaching! I'd like to lose 10 pounds, so it is possible to be normal in the weight area or even have a little extra to spare!

 

[anonymous]

My sister ate totally normally until she was about 8. She loved everything that we loved and we never had problems getting her to eat, if anything she was chubbier than the rest of us. The only thing that gave away the fact that she had CF was the coughing.