Cleft Palate 1 yr old w/ Eating problems---help me, please?

[alisa]

My 14 month old was operated on in September. At
the time, I didn't know all this information
was around. no one offered any support &/or info.
Anyway, Isabella is still eating stage 2 foods
and gags and consistantly throws up any time
stage 3 is introduced, as with Cheerios, biter
biscuits, etc. In November was when I first
realized she had a problem (that Sept. she had
had her operation). Anyway the surgeon who is a
real winner insisted it wasn't due to the cleft
and had no suggestions, neither did my pediatrician who is the only ped in the area
familiar with the cleft palate. Took her to
speech and hearing dept. in hospital (as per
recommendations) and was put on a waiting list
since November. I finally went another route
all on my own and got her into early intervention
program but now i am worried about her nutrition.
Can someone offer me help, please???

[Lee Ann]

Hi Alisa, I just read over your post. I've also had
alot of difficulties with my son's eating.Don't be
so worried,I've been going through this for almost
four years.My son just recently gave up eating infant
cereal,he'll be four this month.He has ate the same
things for over 2 and a half years (breaded fish,raisin
bread,infant cereal(just gave this up),fruit loops, and grapes thats it!!!
No beef chicken, or vegatables nothing else. If I
even get him to try something different he gags and
tries to throw up!! He has also been to his pediatician,
plastic surgeon and even a nutritionalist.No one
could say why he is eating the way he is. So any-
way I don't really have any advice other than to
watch your daughter's weight and make sure she's
growing o.k. I know how frustrating and upsetting
eating difficulties can be and I hope the best for
you and your daughter.Sorry I couldn't help but
just wanted you to know your not alone. Take care.Lee Ann.

[DENISE]

HI ALISA AND LEE ANN, MY SON WAS BORN WITH A
BILATERAL CLEFT PALATE AND LIP, HE IS NOW SEVEN YEARS OLD AND STILL DEALS WITH VOMITTING. I AM NOW
BEING TOLD IT MAYBE DUE TO A SHORT PALATE. HOWEVER
I DID RECEIVE A GREAT DEAL OF HELP FROM A FEEDING
SPECIALIST WHO HANDLED CP PATIENTS. SHE INFORMED
ME THAT MY SON WAS TEXTURE SENSITIVE ALONG WITH
HIS SMELL AND OVER THE YEARS HE HAS BECOME LESS SENTSITIVE TO SMELL AND TEXTURE. IF HE LOOKED AT
OATMEAL HE VOMITTED AND JUST THE SMELL OF CERTAIN FOODS MADE HIM VOMIT. WHEN HE VOMITTED HIS GAG
REFLEX WOULD GO AND HE WOULD VOMIT UNCONTROLLABLE
UNTIL HE EMPTIED HE STOMACH. THIS WOULD GO ON
ALL DAY. THERE WOULD BE TIMES I WOULD CLEAN HIM
UP EIGHT TIMES A DAY. HOWEVER OVER TIME WE BOTH
LEARNED WHAT TRIGGERED HIS GAG REFLEX AND WE WORKED ON MAKING HIM LESS SENSITIVE TO TEXTURES.
I STARTED BY TRYING TO MAKE HIS MOUTH LESS SENTITIVE WITH AN ELECTRIC TOOTH BRUSH SLOWLY. THEN WHEN HE ATE THERE WAS NO OTHER ACTIVITY GOING
ON. HE HAD TO CONCENTRATE ON EATING VERY SLOWLY
AND WOULD REPEAT AFTER ME UP AND DOWN AND ALL AROUND SO THAT HIS FOOD WAS FULLY CHEWED. TODAY, I HAVE LESS OF A PROBLEM BUT NONE THE LESS I DEAL WITH IT EVERYDAY AND SLOWLY OVER TIME HE HAS BEGUN TO EXPLORE DIFFERENT FOODS. I HOPE THIS WILL
HELP

[Lee Ann]

Hi, Denise I forgot to say in my last post that my
son was born with a unilateral cleft lip and bilateral
complete palate.It's good (although sad) to hear that
we are not alone.For a long time I felt it was my
fault for my sons eating problem.I thought that it
was because I didn't start him on solids until he was
almost 8 months old.It's not that I didn't try, but
it was unsuccessful.His first try with solid food
was a disaster,I was in tears and he was screaming
so much I had to stop.Anyway I think that all of our
dificulties have to be related to the clefts.I don't
know if my son has a texture problem though because
he eats different textures(ie fish,crunchy and infant
cereal being smooth)But something has to be making
him unwilling (and almost frighted) to try new foods
He dosen't even want to sit at the table when we're
eating he has to eat alone.I guess it's just something
he will eventually outgrow or it will at least
become some what better in time.Thanks for your reply.
Lee Ann.

[Ladybugs4us2@hotmail.com]

My daughter, born with bilateral cleft lip and palate, also experiences feeding difficulties. Food textures appears to be a huge factor. She was eating infant foods through age 3 1/2. Variety is still a factor, but you must have PATIENCE. I was extremely worried about her nutrition intake. Little by little I tried to introduce new foods - with no success. I couldn't wait until the day when we could order a hamburger happy meal from McDonald's - which just recently occurred! (After alot of persuading - it had to be cut into "fours" and she separates the bread from the burger before she will eat it) She is 5 years old now. She has problems with alot of foods, and there are so many she will not even try to eat (vegetables are one of them)but slowly, I am able to persuade her to at least try new foods - most of which she will spit out and say she can not eat them. It's funny how she knows exactly what she will and will not eat. She also made significant progress when she began to attend preschool. I think the influence of the other children has had some effect on her eating habits. I can say that although eating the same food two and three times a day may not seem like the best nutritional value, sooner or later (from my experience), they will decide to try something else. Something that also works for me is to cut the food into smaller portions or even use cookie cutters to make it look different. Hope this eases your mind some. Best of luck!

[salmonjak@msn.com]

I know a little about where you're coming from, my son is 2 1/2 and we just found out that he has a submucous cleft palete and we had to switch doctors to find this out. his old ped. never looked farther than he had to, Ryan was a newborn and i asked his doctor why his food constantly came out his nose and he said it was reflux, I asked why he had constant ear infections and he said that he is prone to them, at 2 i asked why he couldn't talk and he said "he's a boy they are slower". i switched doctors and they said that he didn't have a uvula(the punching bag in the back of the throat) and sent him to an ENT and that's when they found the submucous cleft palete.

[melissa Moulday]

My son was born cleft palete he is now 5, he is also asmatic,if you need help to understand it more please call on 0408051056 or write to me 1 Cornwall court Shepparton vic3630 hope i can hear froma few people.Melissa Moulday
Re.Cleft Palete

[has1014@msn.com]

Thank God i found this web site because i thought i was the only one with a infant gagging all the time. He doesnt like vegies, or meat. It is a struggle to get him to eat. He is going to see a specialist in boston in february, and hopefully they will find out what is wrong with him.