I would like to chat with others with CF. My daughter Kierstin is 14 months old. We found out she had CF when she was 6 weeks old. She is doing good so far and growing up quick.

My son Chase is 20 months now he was diagnosed when he was 3 months. He is doing well. I'd love to chat with another mother of a CF toddler.

I'm glad to hear from someone. We have an older daughter too who is perfectly healthy. She is 4 years old. Do you go to a special childrens hospital there? The hospital we take our daughter to is about 2 hours from home. We have to go every 3 or 4 months for a visit. Kierstin is small for her age but luckily I am too so she just looks like she takes after me. She weighs about 18 lbs. and is about 28 or 29 inches long. We haven't had anymore hospital stays due to her CF since she was diagnosed. The doctor says she has some asthma too. Talk to ya later.

[This message has been edited by moderator2 (edited 08-27-2002).]

Originally posted by Dane:
My son Chase is 20 months now he was diagnosed when he was 3 months. He is doing well. I'd love to chat with another mother of a CF toddler.
My 14 month old son has CF, he was diagnosed at 7 days old. It is confined to digestive tract for right now, I also have a 3 1/2 year old daughter that does not have it. Would love to hear from other moms and hear new ideas. We are going all natural for right now.

My daughters digestive system has been affected along with several colds like I said earlier nothing that has required hopitalization though. Hopefully the weather will be clearing up soon and it will stay warm. I live in a small town and there are at least 5 children in my hometown that have CF. There are at least 20 children within a 30 mile radius. Do you have many people that live near you with CF? Those numbers just seem kind of high for such a small area. We are getting ready for the walk for CF to raise money for research on May 20th.

My daughter is 7, was diagnosed at birth had quite a few hospitalizations her first two years but has done extremely well since then we are having some insurance issues now but other then that everything seems to be very good. that does seem like a lot of children in one small area but on the upside hopefully you have lots of other parents to relate to and that can relate to you

Originally posted by Dane:
My son Chase is 20 months now he was diagnosed when he was 3 months. He is doing well. I'd love to chat with another mother of a CF toddler.

We recently took our daughter for her doctor visit and they are concerned with her weight. I know your son is older I was just curious how much he weighs. My daughter is 29 3/4 inches tall and 18.3 lbs. It makes me nervous that they are worried about it. But I checked with my mom and she said that when I was 2 years old I was 31 inches tall and 19 lbs so I kind of wonder if she is just gonna take after me.

I have a 6 yr old with CF as well as my mother having CF. My son is doing great. He is just like a normal little boy although there are times that he does have problems. My mother is about to turn 60 and she is doing ok. Her health has been up and down the past few years but she hangs in there and won't give up. Both of them are inspirations to everyone with CF that there is hope!!!!!

That is wonderful to hear that there are so many people doing so well. I pray my daughter is one of those people. Ever since summer started we haven't had any problems. She isn't a big eater so she is small. I take it you don't have CF Dolfun?

Hi,

I have a 12 month old that was just diagnosed failure to thrive and she has the sweat test comming up on the 23rd of jan. I'm nervous about test but want to have answers. She's 27 and 3/4 inch long and weighs in at 15.13 lbs. She has been 15 pounds since around 9 1/2 months. She can't seem to make 16. Since her food intake is great doctor suspects CF. I don't anything about it and don't know anyone with it so I got on here. I'm afraid of all the lung problems but if it turns out she has it doctor says she's been very healthy so far that the effects on lungs should be minimal. Is this the case? Is it that the CF effects ONLY certain parts of body and if it's not in one part from the get go it may not have any effect on it? Just real scared and worried for her. I am small and I have another child who is 8 and small. She's 43 pounds. (She doesn't eat well like the younger one though) Any help, guidance, direction, answers greatly apprieciated.

HELLO

My daughter will be 2 next week and she weighs 21 lbs. She is alot smaller than the other kids her age but then so am I. She wears 18 months in clothes still. The way our doctor explained CF to us was that all cases are different and you can't go by everyone else. Some kids have more lung problems and others have more digestive. However luckily it doesn't affect the brain or nervous system and these kids can do anything. The sweat test doesn't hurt them or anything. My daughter has to take 3 pills before every meal and we have to try to get as many calories as possible in her. She also has to have percussion (where we beat on her chest) twice a day. We recently got a machine that does it for us now and it is wonderful. Good luck on the test. If it does come back positive it's not the end of the world but it certainly breaks your heart.

Well.. She had her test now I wait and wait and wait for the lady to call. She said this afternoon and it's now 3:30pm and her test was at 9am. She's killing me here. I was a little more relaxed after seeing the clinic though. It's at Wilford Hall Medical Center in San Antonio. My husband is military and we go there anyhow and they have subspecialty clinic there for children with CF. The nurse who does the tests said they now see adults there also. She said used to be the oldest they would see if teens because they didn't live very long but she said thier oldest patient is 58. When she said that, I started to relax. I'm not an emotional person especially in public so I feared they would tell me the results there and it wouldn't be good news. I had to fight tears the whole way to the appointment. I know it's not the end if she turns out positive. I'm just afraid of how happy I can make her. With all the extras they have to do. She is the most bubbly, happy, sweet babies I've ever been around. I'm afraid of the meds and lifestyle changing the happiness in her. She is content and happy almost always. The only time she is fussy is bad tasting meds and holding her down for blood work or anything. I'll let you all know how test come back. Whenever they decide to call me. Hope everyone's little ones are doing well. http://www.healthboards.com/ubb/smile.gif

Doctor called and so did nurse about the test and she was below 30 so she's negative for the CF. I'm very happy about that and still a little worried about anything else. I'll be able to handle it though. She's healthy just small. She's 12 months and in 3 diapers and they are big on her and she's in 3-6 months clothes. It sort of looks odd to see a baby her size running around and saying words. Everywhere I go folks ask her age. Then next thing they say is she sure is walking well. Well I hope you all are fine and kids are well. If anyone just needs to unload I am willing to listen. I will understand.

Take care,

Nina

[This message has been edited by moderator2 (edited 08-27-2002).]

Last week my 6 mo. old nephew, and 4 year old niece were diagnosed with CF. Now I'm worried about my youngest son (he's 14 mos.). He's thriving wonderfully, but he has very salty tasting sweat, lots of chest colds, and runny noses.
My husband and I wanted to get tested to see if we're carriers so we can avoid subjecting our son to unnescessary testing if one or both of us aren't carriers. This is taking a long time though...
Do all children have a low wieght?
I read on one site that not all children with cf have pancreatic problems...
Are there any other symptoms that could include or exclude someone?

Just Plain terrified-
LauraG

[This message has been edited by LauraG (edited 02-12-2002).]

LauraG, The test is painless, it just takes a little time on your childs part. I have two daughters with cf Audrey 4 and Meleah 2. Audrey was diagnosed at 6mths. She was losing a pound a week for almost 2mths before the doctors tested for cf. Before that she showed no signs, and my wife and I never had anyone on ether side of our families with CF. With Meleah we found out while my wife was pregnant. Good luck. God bless you all and remember god only gives us what you can handle.

I also have a child very small for her age. She will be 3 yrs in July and is only 24lbs. She has lost 2lbs in the last month. Bria has been on Creon 20 since she was 14mth. Now we are facing a feeding tube. It really freaked me out the other day when me husband accidenntly put my 11wk olds shorts on my 2 1/2 yr old and they fit. (Daddy was on diaper duty!) She won't drink ensure,etc. and I am putting scandical in her applesauce and juice. Does anyone know where else to hide it?

My doctor recently tried my daughter on a Nestle drink it's kind of like pediasure but it had some different flavor packets like banana and rasberry you might check with your dietician. Actually my doctor said it is a little more fattening than the pediasure.
My daughter is 2 years and 3 months now and she weighs 23 lbs. and they are pretty concerned with her weight. She eats but she is extremely active. She loves to do tumbling and run. I think if she would sit still for more than 3 minutes she might gain weight.

We have tried the Nutrien Jr., Pedisure, Ensure, and boost. She just doesn't like anything that has the consistency of milk. We get about 4 ozs. down her a day. We also and scandical powder to her applsauce with her enzymes. It's 35 cal per tbsp. Bria is 2 yrs 10 mths and is 24 lbs. She is just like your daughter - non stop motion. If I only had that energy! We are trying to get her to eat 1400 cal a day. I spend as much time feeding the 2yr old as feeding the newborn.