Hi my name is Sonya and I am the mother of Hunter who is 2 w/CF . He was born with cleft lip and palate as well . when he was born he would feed with bottle but when he was 4 month's he stopped breathing and was down for over 20 minutes they said they stopped counting after that but think he was down for about 40 minutes before they could get him back . After all this he sustained brain damage and so forth and also had a G-Tube that was put in prior to that episode so he was being feed through the tube . He also had trach . we have been trying to feed orally by mouth for while are still having problem's he can eat baby food but has issue's with like chef boy r d well pasta and bread but can eat cheetos ,cracker's . I know he needs calories he is taking 1200 calories by g-tube with peptamen jr but i cant enough by mouth in him he just cant handle that many calories or that much food by mouth yet . does any one have any suggestion's on how to increase calories with the little bit of food he does do by mouth . Doctor's dont really have clue they say be aggressive cut tube feeds but make sure he gets' calories but cant tell me how im suppose to do that ...
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cf and problems eating by mouth
- Thread starter anonymous
- Start date
Does your cf center have a feeding center? I took my daughter to see a feeding psychologist. This is something you might want to ask about if you haven't already. I also read a good book that might help you called, " Child of Mine: Feeding with Love and Good Sense." by Ellyn Satter.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
Unfortunatly there are no feeding center's around here . I am taking him 4 hours away to Vanderbuilt in Nashville this week and they are going to do a swallow test since it has been 2 years and a feeding evaluation so we are waiting to see about that and what they say I think they are also going to have the cleft team look at his device that is in his mouth to make sure it's working right . I have questioned his Craneofacial doctor and he says nothing is wrong but you never know .He is a good doctor and we Love him to death he has done alot for Hunter so even though with that I hate to go get a second opion but sometime's you have to ..
He has a Speech Therapist that come's once a week we both are just at an end and have no clue we have done everything .She has talked to professor's and other speech pathatlogist and they dont' have anything .
Hopefully they can give us some insight on what to do .It is just hard ,difficult to make sure he get's the calories and cut feed's at same time . The dietician at clinic said he can lose 5% while we get agressive but he can lose that in 2 day's . Then we have to get his wieght back up and try again it seem's like a never ending cycle with no end in sight and it's very stressfull at the same time .
I hope someone can help soon surely someone knows what to do you would think .
The other dishearting thing is if all his doctor's would get together they might be able to come up with something but they wont which is hard to believe because they all work in the same building at children's Hospital except for one and could easily do it .
I have had one doctor request to see an MRI done by another doctor and he refused to share the MRI said for me to tell the first one to do his own ...Really....
Thanks though for the information and response and will let you know what happen's ..
Sonya mom of Hunter /2/CF
He has a Speech Therapist that come's once a week we both are just at an end and have no clue we have done everything .She has talked to professor's and other speech pathatlogist and they dont' have anything .
Hopefully they can give us some insight on what to do .It is just hard ,difficult to make sure he get's the calories and cut feed's at same time . The dietician at clinic said he can lose 5% while we get agressive but he can lose that in 2 day's . Then we have to get his wieght back up and try again it seem's like a never ending cycle with no end in sight and it's very stressfull at the same time .
I hope someone can help soon surely someone knows what to do you would think .
The other dishearting thing is if all his doctor's would get together they might be able to come up with something but they wont which is hard to believe because they all work in the same building at children's Hospital except for one and could easily do it .
I have had one doctor request to see an MRI done by another doctor and he refused to share the MRI said for me to tell the first one to do his own ...Really....
Thanks though for the information and response and will let you know what happen's ..
Sonya mom of Hunter /2/CF
The feeding psychologist watched my feed my daughter behind a window. Afterwards, she gave me a "plan" that would help my daughter to eat more. A lot of she told me I had read in books like the one I suggested above. They work with children with all sorts of eating problems. My daughter was two and a half at the time I first took her. By three years old I think she just started eating, I think just due to her age. I was then able to make her stay seated and explain to her that she had to eat then we could play, etc.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
Sonya,
Sorry to hear about all of the feeding troubles your little one is having. My son was also born with a cleft palate (no lip). Even before his CF diagnosis, feedings were always so difficult - he had a hard time keeping food down without spitting it up through his little nose. After his palate repair, things were so much easier. I pumped and fed him through the Mead Johnson squeeze bottles, but I know your situation is different. If you'd like to chat more, I'd be happy to send you an email. Just let me know. Hang in there - things are bound to look up.
Carey
Sorry to hear about all of the feeding troubles your little one is having. My son was also born with a cleft palate (no lip). Even before his CF diagnosis, feedings were always so difficult - he had a hard time keeping food down without spitting it up through his little nose. After his palate repair, things were so much easier. I pumped and fed him through the Mead Johnson squeeze bottles, but I know your situation is different. If you'd like to chat more, I'd be happy to send you an email. Just let me know. Hang in there - things are bound to look up.
Carey