I NEED SOME ADVICE

mylittleangel

New member
HELLO IAM A NEW MOM THAT HAS A BABY WITH CF WE FOUND OUT SHE HAD IT WHEN SHE WAS 3MONTHS OLD I HAVE READ UP ON IT AND I UNDERSTAND IT A LITTLE BUT ANGEL IS NOW 9 MONTHS OLD AND SHE ONLY WEIGHTS 10LBS2OZ IS THIS COMMON FOR A CHILD WITH CF TO BE SO HARD AT GAINING WEIGHT I DO EVERYTHING I AM SUPPOSE TO DO I GIVE HER ALL THE MEDS SHE NEEDS I FEED HER WHEN SHE IS HUNGRY I AM DOING EVERYTHING I AM SUPPOSE TO DO WILL SOME ONE LET ME KNOW PLEASE..THANK YOU<img src="i/expressions/face-icon-small-confused.gif" border="0">MY EMAIL IS CLCO4ME@CS.COM
 

anonymous

New member
Children with CF tend to be smaller that other children for lots of reasons. My best advice would be to talk to your clinic and speak with the dietician there - he or she should be able to give you lots of hints about adding fat to your daughter's diet. Children with CF need more fat and protien that other children b/c even with enzymes and medicines, they still don't properly absorb all their nutrition. At 10 months old your daughter is probaly just starting table foods - I would try giving her high fat meats (beef, bolonga, ham, bacon, etc. - just be sure to cut it up really, really small). Also with your doctor's permission, peanut butter, avocadoes, ice cream, butter, cheese are all great ways to add fat to a diet. If your daughter is still using baby cereals and/or baby foods, I used to make my children's food. I would cook veggies, fruit, etc. and then put it in a blender/food processor and then add in lots and lots of formula (liquid formula) to make it smooth. The formula addds a LOT of calories and a LOT of extra vitamins. It takes some work, but I thought it was worth it. I used to make a big batch of food and then freeze it in an ice cube tray. I would then take the "frozen food cubes" and place it in a zip lock bag. That way I would have ready made food for the next week or so. I would try to make a couple of different foods each week for variety. I did the same thing with rice cereal and oatmeal - I would add in tons of formula and fruit - I just kept adding on the calories and nutrition. Remember the key is to add lots of good nutritious fat to your child's diet - my nutritionist for my son recomends adding a fat to every "good for you food" - ie. butter on the veggies, cheese on the pasta, etc.Good luck. I hope your daughter gains the weight she needs.Katrina - mother to Sean (5 w/cf), Carolyn (4 w/o cf) and Allison 2 (w/o cf)
 

anonymous

New member
Our daughter had trouble gaining weight before and for a time after the diagnosis. She has been well over the 100th percentile for some time now. I would say that something is not right. Either she is not getting enough calories or the enzymes are not helping her absorb the nutrition she is eating.Suggestions1- have a fecal fat test done. They see if (how much) fat is passed in the stool. This tells if she is maladsorbing her food.2- have a blood test done and have all fat soluble vitamins checked along with liver enzyme and a panel of CBC's and other blood tests done. Also check the Albumin levels.3- keep a diary on how much food she is eating and calculate the number of calories she is consuming.To answer your question. Your baby will be small if:1- The baby is genetically predisposed to be small. (The genes are that the baby will be small)2- The baby is not getting proper nutrition.So you need to get this figured out.Best wishesDon P
 

anonymous

New member
himy baby is 8 months old and 19 lb....he is not gaining so much weight now like before, but it is normal for all babies...what I want to say is...talk to your baby's pediatrician...prolly u should work on her diet....what I did...and I still do is feed my baby before he is hungry....bit he is used to it, coz is was the way they feed him for the first months at the nicu...u should never force her to eat but try to add more feeding time in her routine and make of these moments fun...good luckval
 

anonymous

New member
When my daughter was diagnosed at 18 mo. she weighed only 16 lbs. She was very malnurished becuse her pediatrician took too long to make the proper diagnosis. As soon as she was under the cf clincs care things started turning around. She was immediatly put on pediasure and a high fat diet. No food that wasn't high in fat allowed at first. No vegies, fruits, anything that you would normally feed a child. Her dinner was oreo's, icecream and pedi. She did gain the weight. She is 6 now and still eats mostly fattening foods and Booste plus. In the Hospital her nick name is Butter because she is always having the nurses get her pats of butter for her snacks. The dietician thinks this is great for her. She has told us that we think of the food pyramid upsidedown for the cf kids that need help with weight, and not to feel bad because the lack of absorption will not allow the bad things to happen to them from all the fat that would happen to us. Do you see the dietician regularly? What do they think? It was slow gaining for us but she is staying in the 14 to 17% on the growth charts now and we are all happy with that. It sounds like you are doing everything great, you are a good mom! Keep up the good work and never be afraid to ask for help. Michelle
 

Lois

New member
have you tried giving your baby food supplements, like ensure, scandishake, fortashake etc.? they work miracles. i was older when i started drinking it, but ensure plus did a great job with me for years.
 

anonymous

New member
Our daughter was always small for her age alos. Now she is over the 50% for her age. We started her on pediasure. Which she LOVES...she can't get enough of. She'll drink 6-8 cans a day which tuns out to be a ton of calories. I think it is also formulated to be easy to digest which in turn helps her absorbe more nutrients. Our insurance pays for the costs of the pediasure shakes which is a lifesaver, beings they are around $12.99 a 6 pack. We also tryed the scandi-cal from the scandipharm, it's a tastless/odorless powder that you sprinkle on any kind of food from vegies to icecream to give it a good boost of extra calories. Your CF dietiation should be able to connect you w/ scandipharm (It's the company that alot of the CF enzymes come from) Best of luck.One more thing, our daughter weighed aprox 12lb at a year old, she wasn't diagnosed untill she was 14 mo. and at that time weighed a little over 14 lbs. It took her a while after changing her diet around and adding enzymes but slowly she has made it up the growth chart. Now she is 5 and weighs around 38lbs. Hang in there.
 

anonymous

New member
You may be able to get calories to sprinke in her formula. It does not change the amount she would drink,but makes it more fattening. We used it for my daughter when she was a baby.
 

anonymous

New member
My daughter was always very small. She still is. When she was still on formula, we had her on what is called 27 calorie formula. Simply take her formula and add 3 scoops per 2oz of water. We also added 1 tsp of cereal per ounce. Of course I felt like she was drinking paste...but she didn't seem to mind.Now that she is on milk...we use whole milk and carnation instant breakfast. Just a heads up for those of you who use pediasure...whole milk and carnation has more fat, protein, and calories per ounce than does pediasure...and it is sooooooo much cheaper. Carnation has a program called Care Express. they give carnation instant breakfast to those with special needs (cf included) at a discounted rate. I generally can get 3 months worth for $100.Good luck.Christiemommy to malachi wocf and mylee wcf
 

anonymous

New member
It is a good thing to have your baby on diet, and to thump her chest (not hard) so that the mucus can loosen up on your babies lungs. If your baby coughs alot, don't worry because that is also a good thing that helps loosen the mucus from the lungs. Pulmozyme is mucus thinning-drug that has reduced lung infections and improved lung function. Maybe you should ask her doctor about the drug and try it out.Mother to Amber(6 wc/f)
 

anonymous

New member
My Little Angel, I also have a 4 year old with Cystic Fibrosis. When he was a Baby, he was considered "Failure ti Thrive".He wasn't growing much either. We spoke to the Dietician @ his C.F. clinic and she put him on Pediasure 3 times a day, we added a tablespoon of heavy cream to all sweet dairy stuff and conola oil and butter to all salty foods. For instance, If he was going to have yogurt, we added heavy cream. If he was going to have raviolis, we added either a pat of butter or some oil. You have to think High calorie with everything she eats. Only give foods that will add high calorie. You can make every food high calorie with some creativity...Another good one is in the morning, if she likes cereal like oatmeal use heavy cream with milk, no water...Try to have her drink milk as much as possible and add a tablespoon of heavy cream. The two main drinks for C.F. kids should always be Gatorade & Milk, because of the salt & fat... Even if they are sick...Signed,Another C.F. Mother
 

anonymous

New member
My little Angel,I forgot to add about my 4 year old son that he is now out of "Failure To Thrive" and has caught up to his age group. He wears 4T clothes and they fit... The Dietician I worked with is from The Chidrens Hosp in Phila, Pa and they are the best... The heavy cream, butter/oil and pediasure really works. Also are you adding salt to her foods now so she gets use to the taste at an early age?Signed,Another C.F. Mother
 

anonymous

New member
Hello young mother,It is rather coincidental that my mother and I were just talking about this topic the other day when I was very very young and the mortality rate for me at the time when I was born was 2 to 4 yrs. I was born in 1969. My mom and I were discussing a variety of different issues related to my illness and how she would not believe the dr.'s on giving up and doing research on her own to keep me healthy and to "FAT" 'en me up by 12 months, in fact, 25lbs. by 13 months. Maybe my mother of 63 yrs. can give you some parental insight on CF and how and what she did to plug thru and see the "light" at the end of the tunnel. I will give you her email address and mine. I am currently 34 yrs. old and doing relatively well.....But, I also have had lot's of GREAT support...from both family and friends and esp. from the SINGLE most important doctor(s) (and their philosophy) at one of the BEST CF Center in America if not the world, Rainbow Babies & Children's Hospital in Cleveland, Ohio. Feel free and email either me or my mom on helping out w/ you problems and issues w/ your new born.mswcanesr1@hotmail.com .....Minekarenbob4723@msn.com ......My motherI am sure my mother can give you some additional suggestions or insights into CF being a young mom w/o knowing what to expect or what dr.'s are telling you the right stories and so on and so forth.......I am sure she will also explain to you what 3 or 4 most important things there is/are about CF that will help put your child in the BEST possible scenerio to live a LONG and somewhat "normal" life.Feel free to email either of us.....Thanks for your time and your patience....Very old cf patient.....
 
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