Hi to all! I am a mom to 4 kids, Serra (7/97) w/CF, Max (5/99) w/o CF, Hannah (12/00) w/o CF and my sweet baby Jackson (2/03) newly diagnosed with CF. My question is for parents out there whose child(ren) was diagnosed in infancy, what treatments if any were prescribed for your baby? Formula, vitamins, breathing treatments, CPT....? My daughter was diagnosed when she was 4, the doctors ignored her symptoms until we finally demanded to see a pediatric GI who ordered a sweat test which confirmed her diagnosis. She did not have any lung complications (except for one bought of pneumonia at age 3 which was cleared up with anitbiotics) all her problems were digestive related. We have a complicated (at least to remember it all!!!) regime for her, vest 3X's a day, duoneb 3X's a day, pulmicort 2X's a day, advair 2X's a day, enzymes, ibuprofen 2X's day and of course numerous vitamins (multi, A, E, K, C and Zinc). So I am not sure what we need to do with our son, he is 3 1/2 months old and of course I want to do the very best I can for him. I was curious about treatments for infants...our (wonderful!) CF doctor told me to change his formula to Pregistimil or Alimentum and to start him on vitamins. They did a lung culture last week, so we are waiting for the results before any other treatment (breathing) starts. Our doctor told us to hold off on enzymes for now, because they can burn babies mouths and bottoms, so how do you add extra calories to the formula to get them to gain weight, especially since he is not yet on enzymes? I have heard of adding an extra scoop of formula or adding rice cereal (tried that, he is not too fond of that). I have been breastfeeding him, so he is not too happy with the bottle anyway. He has gained 5lbs since birth and grown 5 inches which seems impressive for a baby with CF....however his doctor said he should be 2 lbs heavier than he is. Does anyone have any tricks or ideas on how to get a baby to gain weight? I guess basically I just would love for some info from anyone regarding care of a tiny cf baby<img src="i/expressions/face-icon-small-smile.gif" border="0">. Thank you!Marissa, mom of Serra w/cf, Max w/o cf, Hannah w/o cf and Jackson w/cf
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Newly diagnosed baby....
- Thread starter anonymous
- Start date
Congratulations on your new baby. I am the mom to two children; a 4 year old without CF and a 5 month old with CF. My baby was diagnosed prenatally. She had surgery at 5 days old for a meconium ileus. I am breastfeeding her as well. I am A HUGE advocate for breastfeeding. We ARE giving her enzymes with every nursing session and her weight gain has been wonderful. I am new to the CF arena but I can tell you what we are doing for our little baby. Of course every baby is different so keep this in mind. We have had absolutely no problems with burns to her mouth and bum fromthe enzymes. She did have a yeast rash on her bum for a long time but I think that had nothing to do with the enzymes and more to do with antibiotics she got after surgery. So, the Enzymes from our perspective have been great for her. I open up the capsule, pour it into a little cup then take my pinkie finger get a little secretions from the inside of her cheek dip it into the enymes and put that on the inside of her cheek. I put her right to the breast and the sucking washes the enzymes down. I have been doing this since she was 2 weeks old. Now she really swallows most of them. At first alot of them ended up in her neck or on the floor but babies can learn to do these things. Some nutritionists recommend mixing the enzymes with a little applesauce for the baby to suck off you finger but I've never done that.Also, My ped recommended me taking fish oil pills. I guess the omega3 fatty acids are good for children with CF. It supposedly is pased through your breastmilk. You can't give fish oil to a baby by mouth because they can choke on the oil, but m ped said it wouldn't hurt through the breastmilk. I also still take prenatal vitamins.My baby also takes vitamax(it ahas ADEK in it). I give her CPT 2 times a day. That's all we do. She weighed 6lb 2 oz at birth. at her 4 month check-up she weighed 15lb 11 oz. She is nw 5 months and i don't know what she weighs yet. We go to clinic in a few weeks. I have no experience with baby formula, I breastfed my first child and never gave formula and plan on doinf the same for my 2nd child. I would be happy to give you more info if you have any questions. My e-mail is rebjane30@yahoo.com. This is what works for us but I would check with you CF clinic before making changes. Also, different docs have different opinions about stuff. Good luck I hope all is well with your familyRebecca
B
Beaz
Guest
Our son,who is almost 6,started taking microencapsulated enzymes with every feeding on the day he was diagnosed at 4 weeks of age. Young as he was, using a little bit of applesauce and a tiny baby spoon seemed to work the best, then nurse him right away. It seemed really weird to be giving him "solid food" so young, but it never seemed to faze him! He also started nebs and chest PT 2x/day then. Good luck w/ your little one !
Hi Congrats on the new baby!!!my daughter was 9 &1/2 months when she was diagnosed. She was already on neb treatments because she was having a lot of respiratory trouble, she was immediately put on enzymes because it was apparant that she was pancreatic insufficient and vitamin K as well as ADEK's as well as CPT. When she was a newborn (pre-dx) she had some weird digestive things happening (I now think it was CF related) and was put on pregestimil. then she was switched to a soy formula and gained more weight on that Some people with CF are pancreatic sufficient and don't need enzymes ever, some become pancreatic insufficient as they get older (My daughter was doing well up to 6 months old.) Ask if you should put him on a milk or soy based formula since they are better for weight gain. Good luck!Andrea
Thanks so much to you all for your feedback!<img src="i/expressions/face-icon-small-smile.gif" border="0"> I think Jackson will have to start taking enzymes soon, it seems his tummy is bothering him more now that I am giving him more formula. It is hard to get him to take a bottle from me, most of the time he refuses the bottle from me, but he will take it from other people. I am continuing to breastfeed him...that is a great idea about the fish oil, I will try that<img src="i/expressions/face-icon-small-smile.gif" border="0"> Did you all have a hard time doing cpt's on your little ones? Any tricks? We have not had very much practice with cpt's...Serra does the vest therapy. Any suggestions would be greatly appreciated. Thanks so much!Marissa, mom to Serra, 5 w/cf, Max, 4 w/o cf, Hannah, 2 w/o cf and Jackson, 3 1/2 mo w/cf
Hi,when my daughter was an infant I used one of those breastfeeding "boppy" pillows for PT. We just laid her over it It was great for a while. Ask at CF clinic if you could speak to a therapist about CPT. They will have great tips for babies........The respiratory and physical therapists worked with us when we were first learning, I'm sure they'll be happy to show you what to do with the baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> Andrea
B
Beaz
Guest
When our son was an infant we would just lay him in our laps to do CPT. We also used tiny rubber cups to do the percussion(as he was so tiny and our hands seemed HUGE). My son is almost six and his Dad still uses larger cups for some spots where his hands feel too big. They should be able to give you some and show you how to use them at the clinic. He's always been reasonably compliant w/ his tx, I think because he started so young that its always been a part of his life, so thats an upside to starting now.As for breastfeeding your baby, if its important to you then you should really stick with it and enjoy it. My kiddo came to prefer the bottle-quicker gratification- and that was very sad for me. Good luck and enjoy that baby!
Hi, I live in Denver and have a 2 year old with cf. When she failed to thrive as an infant, we gave her special formula, and decreased the amount of water added to make the formula 24 calories an ounce. You need to ask a GI doctor how to do this, if you give them straight powder it can cause intestinal blockages, which is definetly conterproductive. There is also a formula called nutrigamin by enfamil that does not require enzymes because the fat and protein are already broken down. This is expensive, but you may get insurance to cover it since the baby gets most of his calories from the formula. When the baby gets older, I added some coconut milk to Maya's formula. It has so many calories and it is naturally anti-inflammitory. When he is older than 1 year you can just put half and half in his bottle. Maya started out in the 6th percentile for weight and is now in the 50th percentile. I understand your worry. Email me at jenirein@yahoo.com if I can help.Jennifer mom to Maya 2 with cf
wow <img src="i/expressions/face-icon-small-smile.gif" border="0"> i was diagnosed with cf at one year old, my family was living back in ukraine then. it was still a part of the soviet union. now, i must say that the medicine sucked major time. it was just bad. i was about a month away from dying when i was 10 years old just because i didn't have the right treatment - fortunately, we moved to israel and the doctors here literally saved my life. i am now 20 years old and although my health isn't peachy keen, i'm able to lead a fairly normal life. i know that up until i was 7 years old, i didn't have any respiratory problems, just the weight problem. so i only took enzymes, which were very poor quality [did i mention medicine level in ukraine was very bad?] and i always looked several years younger than i was, and very undeveloped physically. now i read about all those treatments that are available for your kids, and i cannot help but smile with joy. it's wonderful to see all these possiblities for children with cf these days <img src="i/expressions/face-icon-small-smile.gif" border="0">=====================lois, 20, israel, CF
My son is 2, he was diagnosed at birth from newborn screening(mandatory in our state). When he was 14 days old , we were sent to the CF clinic here. He was started on enzymes right away and ADEK's. We also had to give him breathing treatments w/ Chest PT 2 times a day. Mikey really only has GI related problems so far: failure to thrive, pancreatic insuffiency, malabsorbtion, acid reflux, and delayed gastric emptying. He was hospitalized once for a pseudomonis lung infection, other than that his lungs look great. He has always been below the growth chart, he made the 3rd percentile finally just before he turned 2. He was put on pregestimil formula, enzymes ( which we put in a small amount of applesauce and either put it on a spoon or on the end of his pacifier, which both worked out great) He never had burns in his mouth or bottom, only has had diaper rash 2 times in 2 years. He is a very happy and active little boy<img src="i/expressions/face-icon-small-happy.gif" border="0"> He is very small for his age and dispite everything that has been done for him he hasn't been able to gain much weight, he had a GJ feeding tube placed through his stomach about 3 months ago, he is really packing on the weight now and looks great. He gained almost 2.5 lbs in 4 weeks. He is now in the 10th percentile, wow he finally made the growth chart>>>>yeah. I am thankful that Mikey was diagnosed at birth, he has been treated since then and I think this will help his chances of having a longer and healthier life.Donna, mother of Hannah (6/98) w/o CF, and Mikey (5/01) w/ CF
himy son is 6 months old and was diagnosed several weeks after his birth...I don't know why it took so long coz he had all the syptons...even susgery to meconium ileus...and was at the nicu for 43 days...coz of this late diagnose he took long time to gain wait...it was just when he started to take enzimes he gain weigth...he is 17lb 2oz now and 26 inches...to make the gain weght possible he needs to eat every 3 hours. at first breastfeeding was not enough, so he was taking pregestimil 24 cal ( 3 scoops for every 5 oz water) 5 times a day...now he takes it twice a day and started solids. his breathing treatment is on pulmicort and xopenex.but he never had any problem with his lungs...but he has sinus problems. about cpt....he doesn't seem to need it, but we do any way...for few minutes when he is sleeping, other way is close to impossible, he holds my hand, cry, scream...but I guess u know how it is.I guess I am telling u the same other people told u....what i came here to say is that was really good to read your message...coz I have never" found " no mom of a cf baby like me. actually, I never found no one with cf or anyone who knew anyone w/ cf...I am from Brazil and CF is no reality there. Everything is really new to me and scary...and being in the usa far from my family makes it worse. But my baby is doing ok and his smile makes me stronger...anyway...it was good to know that there are so many people like me and that thay can give precious information through this forums...I would love to know mums like me...if u have some time or any other mum...write to me woosky_val@yahoo.com or woosky92173@aol.comvaleriamother of Torin Gastao
MARISSA!!Do you remember emailing with me before during the time my daughter Madelyn was being tested for cf? We moved and then had a computer crash, so I lost your address. Madelyn has now had three negative sweat tests, and two genotypes that have come back stating that she is a carrier. Her pulmonologist has been just wonderful, and has diagnosed her with cf based on symptoms, after her hospital visit in March with pneumonia. She has been doing very well now that we're more informed on how to take care of her. She turned 2 in April.Congratulations on the new baby!! Is Serra still doing well? I hope so. I'd love to chat via email again. You were so helpful to me in the beginning when I was so scared and going through the "she has it" "she doesn't have it" "she has it" rollercoaster. Please send me an email sometime - itsmelanie@sbcglobal.net.<img src="i/expressions/face-icon-small-smile.gif" border="0"> melanie <><
I just had my third baby and doctors told me that she has CF.I don't know what to do and really how to deal with all this. I have two healthy daughters nothing wrong with either oneof them. They understand why they can't see thier baby sissy. I'M 22 years old and I have 3 kids and I'm going backandforth to the hospital having to find baby sitters for my other 2 kidsI'M so stressed out mentally and emotionally. My baby was born at 35 weeks and 5days and I've had to have a C-Section for the first time in my life and i was so scared to death ! I just want to know how to deal with all this
My son is 20 months old and the doctors think that he may have CF. He is going in for a sweat test to confirm this. I was wondering if there is anything that we can do as parents to help. I have been trying to learn every thing that I can about CF. I would appreciate all of your help.Thank you allRichard
Hello there,I am a mother from New Zealand and I have a 10 month old with CF who was diagnosed at 2 weeks old.They diagnosed him from a faecal test that showed he was pancreatic insufficent and put him on enzymes immediately until his blood test and sweat test results came through.We give him his enzymes in applesauce which he loved at 2 weeks and we were pleased with that.He was a average birthweight and never lost weight but wasn't breaking any records either!I have breastfed him and still do three times a day, he is doing really well and refuses a bottle still!I give him a suplement in his food called flaxseed oil and I add 1 tsp a day to cool or cold food and that has the Omega 3,6,9 which is good for CF.I also give him a product called primadofilis, 1 tsp daily and this product promotes immune system support and seasonal respiratory health as well as a good intestinal bacteria which helps if they are on antibiotics regularly.Matthew has not displayed any other symptoms at present other than the pancreatic problem.I am quite vigilant about people with colds, and coughs around him, I don't mollycoddle him but if I know they are unwell I just don't take him near them.And it has helped to have a good winter!We also do cpt twice daily over a pillow in front of his favourite video!Good luck and please feel free to email if you have any questions!mrlambert@clear.net.nzRebekah Mother to Matthew 10 mths wcf