Please help me!

[Pamela Bowen]

I have written before and I am still looking for some help- I
find all kinds of information on children tht were born with a
cleft lip or pallett that was detected right away. I have been
batteling with this for twelve months and they are just know
telling me it MAY be a submucous cleft- can anyone tell me if you
have been through this and what do I do if it is - His history is
that he came home 81b 9 oz and was eating 5-6 oz of breast milk
at a time at 2 months old he had a severe flu- he dropped to 2 oz
and still will not drink anymore than 5 oz at a time - he can not
eat any solids because he gags until he vomits and it is violent.
up his nose and he almost chokes. he has been to several doctors
and they all said be patient - Well he is 12 and 2weeks old and
still not eating any food - formula only. Does this sound like
anything anyone here has been through if so - please email me at
Jestco@insolwwb.net -

[Denise]

I can empathize with you. I have a child who is not my cleft
child that did not eat like I think she should have. She did not
double her birth weight until she was a year old. At ten years of
age she still does not eat like I think she should. Some things
the doctors will look for is.. Is your child a happy content
child does he seem to be content with the amount of food he is
currently getting? What does his weight gain look like? Does he
continue to gain weight even small amounts from month to month?
Is he meeting other benchmarks like sitting up, crawling, ect.
Even though he does not seem to be advancing his diet does he
seem to be doing well. Mothers know their children. If you are
still concerned make your doctor listen. Have him answer your
question.

[Cindy H.]

My suggestion to would be first not to worry yourself sick
over it. You need to calm down some because if you are upset your
child is going to notice this and will also become uptight.



Next I would suggest going to either and ear, nose and throat
( ENT ) or to a plastic surgeon who actually does the
reconstructive surgery on a child with a cleft. Noone could tell
you if there is a submucous cleft without looking at it. Even
then sometimes it's just too hard to tell. When you look in the
back of is throat at the uvula ( the ball hangingin the back of
the throat) is it split??? That would be a BIG INDICATOR of a
submucous cleft. Other than that a specialist would need to be
consulted.



Good luck and keep us posted. Happy Holidays. You can e mail
me at CinLou1970@aol.com



BTW- I have 4 kids- 3 born with cleft lip and palate