Any kids without weight gain problems?

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anonymous

New member
I am just curious if any of you have children that do not have problems gaining weight? My daughter is only 17 months old and so far we have not had any problems. She weighs about 23-24 pounds (her birthday clinic visit is next week, so I will get an accurate weight then). Her doctor is happy with her weight and so far we really have not done anything extra as far as adding a lot of extra butter, cream, or supplements, ect. to help her gain weight. Luckily she has a good appetite and is a pretty good eater and we feed her pretty much the same way we fed our son, who is now 4 and does not have CF, when he was a baby. I have been seeing a lot of posts about helping kids gain weight, feeding tubes, supplements for weight gain, ect. and it made me curious to see how many people who have kids who eat pretty normally and do not have any problems in the weight gain area? Or if those problems usually don't start until kids get older? I appreciate any responses!! Thanks!

Becky, Mom to Nathan, 4 w/o CF and Hayley, 17 months w/CF
 
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Emily65Roses

New member
I was always pretty small, but I never had trouble gaining weight. I mean, I couldn't gain as easily as healthy people not matter how much I ate (and that was a LOT -- I used to eat more than my beer-belly father and I bragged about it), but I had enough weight on me to not look anorexic. I've never had a G tube, or had to drink supplment shakes (Scandishakes, Ensure, etc). I used to drink Instant Breakfasts because I'd eat whatever had more calories in it just to make sure and try to gain a little more if possible, but those actually tasted good to me. Either way, I was pretty skinny, but not sickly so.

Just FYI, that doesn't mean I didn't have GI trouble. I most certainly did, and still do. Just, for whatever reason, I have never been sickly underweight.
 
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Haileysmommy

New member
My little girl is 6 months and weighs 18lbs. She is a big baby. She has the digestive problems but her enzmes are working wonders. She definately has no problems gaining. She does eat a lot more though than my other kids without cf did.
<a href="http://www.solisstyle.com/ims/pic.php?u=42495Vnei&i=47907"><img src="http://www.solisstyle.com/ims/pic.php?u=42495Vnei&i=47907" border="0"></a>
 
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RMJR

New member
Our daughter is 7 and a half and has had no problems gaining weight. The only time we had weight issues was when she had a lung/sinus infection with staph and her color changed and she didn't gain any weight for a few months--a tipoff. She has had some stomach ache and reflux problems but seems to gain weight normally. RM
 
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anonymous

New member
My daughter is 8 months and weighs a little over 17 pounds. She was only 6 pounds and 11ozs. when she came home at birth so she has stayed in the 50% range for weight and is 26.5 inches in heighth. She gains weight on here own. Katina(mom of Saydee w/cf)
Keriona 3yrs. w/o cf
Ethan w/o cf
 
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anonymous

New member
HELLO MY NAME IS LORETTA AND MY DAUGHTER HAS CF AND SHE IS 11 YEARS OLD,WE FOUND OUT SHE HAD CF AT AGE 3.SHE HAS ALWAYS BEEN VERY SMALL UP TO 2 YEARS AGO LIKE I SAID SHES 11 NOW AND WEIGHS 120LBS AND HAS A BODY OF A 16 YEAR OLD.SHE HAS EVEN STARTED HER PERIOD{SORRY GUYS}.I WAS TOLD THAT GIRLS WITH CF HAVE A SLOW START FOR ALL THIS BODY CHANGEING,WELL SHE MUST BE IN THE 5% THAT DEVELOP ON TIME BUT TO LOOK AT HER SHE IS EVEN PAST THE 5%,NOW I DONT MIND AT ALL BECAUSE SHE HAS LOTS OF RESERVE IF SHE GETS SICK WHICH IS A BLESSING. I HAVE A QUESTION FOR ANY ONE OUT THERE ABOUT SSI.WE LIVE IN VIRGINIA AND I HAVE FILED FOR SOCIAL SECURITY FOR HER AND WE WERE DENIED.OUR CLINIC WE GO TO IS IN RICHMOND VA AND IVE TALKED TO SOME PARENTS THERE AND THIER CHILD IS GETTING HELP. I DONT UNDERSTAND ANY OF THIS SSI STUFF CAN SOMEONE HELP.I COME HERE EVERY DAY AND READ AND THIS IS MY FRIST TIME WRITING.MAY GOD BLESS EACH AND EVERYONE WITH CF AND THERE CARE GIVERS.THANK YOU SO VERY MUCH I THINK THIS IS A GRAET WAY TO FIND HELP AND LISTEN AND TALK.THANKS AGIAN LORETTA
 
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cfmomma

New member
Haileysmommy: My son was sitting next to me as I was reading this post and when I scrolled down he saw the picture of Hailey. He screamed and busted out laughing at her (in a good way) wearing those sunglasses. She's a cutie!!!
 
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anonymous

New member
My 11 month old weights 27lbs. He carries double 508B genes and takes 3 Creon 5 with each meal. So far so good. He also eats more than my four year old. Paula
 
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Justsmurfin

New member
I have no weight issues. I need enzymes but don't have trouble maintaining weight! I was petite as a child but on the growth charts(barely at some points) but that was pre-diagnosis
 
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Edna0312

New member
I think this topic is very interesting.

The main reason doctors weren't concerned about my daughter and thought I was crazy to even suggest testing for CF is because she was gaining ok and didn't "look sick". I can't tell you how many times I was told that she looks fine!!

That made me sooo angry!!

Hopefully we will get to the bottom of this soon. She's scheduled to see a CF doc. at Bowman-Grey in Sep.

Thank you all for your informative input on this forum!!!


Edna,

daughter 5yrs, daughter 2 1/2yrs, ??CF, son 3mos. ??CF
 
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ReneeP

New member
My 10 year old, Kaitlyn, has never had weight problems. She is a very healthy weight, though a little shorter than average. She is very muscular and healthy looking. She has a very good appetite. Even when she was 2 and 3 years old she could eat 3 happy meals while other kids could barely finish 1. She can out eat me and my husband put together. My 6 year old, Kacie, is petite and tiny. She has never gotten out of the 10% range on weight, other than at birth when she was 8 lb 10 oz. We have to force her to eat. It's funny that even two kids in the same family can be so different.
 
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serendipity730

New member
I'm not a kid anymore, but I don't have any weight gain problems. I did until around 19, but since then, none at all. In fact, I can't even lose weight at all. I had problems with my weight at different points in childhood, particularly around 12-14.
 
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Michelle

New member
Edna, I echo your comments. My son, Grayson, wasn't diagnosed until he was 7 (he is 9 now) because "he doesn't present the classic symptoms" (quoting one of his doctors). Grayson has had no respiratory problems and didn't fail to thrive as an infant. He has been and continues to be slim, but his father and I are both slim. He is in the 25th percentile for weight and the 50th percentile for height. The problems with his bowel movements and his voracious appetite are finally what prompted a GI doctor to test him for CF. Grayson is slim, but he doesn't look sickly. If we don't tell people that he has CF, they would never guess he has any problem. He looks "normal." Of course, we always want him to gain weight. We want his body to be able to effectively fight off any problems should they arise.
 
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anonymous

New member
My daughter is 9 months old and weighs 15lbs. She has severe reflux, gags on everything and fights us on taking her enzymes. It's been very very hard.
 
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anonymous

New member
Michelle I am just curious when you say your son Grayson was diagnosed based on his voracious (sp?) appetite and bowel movements what were his symptoms with his bms? Just curious as we are in the process with my 6 yr old of getting her tested for cf (a long story) but after reading a lot of comments on this site I am thinking I need to look more into my boys who are older but have different problems.
Terri
 
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anonymous

New member
Terri,
I was in the same boat as Michelle. Our son was 3 at diagnosis and we fought tooth and nail with the doctor to find out what was "wrong" with our son. Our doctor insisted he was fine, because he looked fine. But I would explain the bowel problems and he would just blow me off. I always left the office feeling stupid. One day his intestines started coming out of his rectum, and the doctor still tried to pacify me and tell me that nothing is wrong (I actually barged into his office during his lunch hour after several unreturned calls. He looked at me like I was crazy. Said it was unneccessary for me to come in, that he didn't need to see my son. He's fine, he's gaining weight. probably just constipated). I wouldn't leave the office until he agreed to give him some sort of referral or testing (I had read on the internet that children with this problem should DEFINITELY be tested for CF). So finally we got the diagnosis.

ANYWAY, his bowel problems were as follows. Very loose and "abnormal" looking. He had several "leakers" when he was in diapers, and I am basically talking BIG LEAKERS. He would go 4-5 times a day (NOT NORMAL even though my former doc swore it was) EVERY DAY. Basically, he was loosing all his nutrients in his stool so he was STARVING. To make up for the fact that he was starving, he had a humongous appetite. At 2, he could outeat a grown adult. He had this huge bloated belly after eating (but not when he first woke up in the morning). He also was a snored really badly (after diagnosis, he started taking Flonase and the snoring stopped for the most part).

If your 6 year old tests positive for CF, you definitely want to get your older children tested.
Good luck!
Jena
4yr old son with CF
1 yr old daughter no CF
 
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Michelle

New member
Terri, Grayson's symptoms were similar to what Jena describes, but he never had a rectal prolapse. He would be hungry every hour and could eat more than his 200 pound father. Most kids will eat one bowl of cereal or two pancakes for breakfast; Grayson would eat four bowls of cereal or six pancakes for breakfast. He would have 4 to 5 BM's each day and spend 15 to 30 minutes in the bathroom with each one. His BM's were very loose and very smelly. Often there would be an orange oily substance floating on top of the water. He often complained with stomach aches and had a lot of gas. He was tired and could fall asleep at the drop of a hat. Fortunately, his pediatrician admitted that he just didn't know what was wrong with Grayson and referred us to a specialist. Grayson was malnourished because his body wasn't absorbing nutrients due to his pancreatic insufficiency. The enzymes have worked wonders. His appetite is more normal and he is not tired. He is still slim, but the doctors are satisfied with his weight. His BM's are are much better. Hope this helps.
 
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my4kids

New member
Thank you for your response that is where we started with my daughter who is the 6 yr old she had a rectal prolapse and my dr ran a blood test that came back as she was at least a carrier but the report said it only tests for the 30 most common or something and that she should have more testing done we tried the sweat test but even though she would sweat everywhere but not in the spot she did the test I mean she would literaly be dripping everywhere else but didn't collect in the test. She is small for her age but doesn't look terrible but has used inhalers since she was 2 had pnemonia and ear infections constantly, and she has always had really low energy levels and tummy aches all the time. It has been frustrating with her because she doesn't look really sick she just looks little and gets sick alot.
 
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