Feeding problems

[Ruben]

My son Gavin was born on March 18th with a an undeveloped jaw
and an incomplete cleft palate. He started out doing extremely
well with the Habermann bottle, but has started to have problems
of late.



He feeds fine when his half asleep but fights us when awake.
It almost seems as though he is afraid to swallow. Has anyone
else experienced anything like this?



Our pediatrician has suggested a feeding tube but I am
hesitent to ok this at this point. He is underweight but has
improved his weight over the last few weeks.

[Nancy, mom 2 David, nbarr]

I was wondering if they diagnosed your child with Pierre Robin
Syndrome? It is characterized by a small recessed chin and cleft
palate. My 11 year old son has PRS and had lots of trouble
gaining weight. He had a trach until he was 15 months old. I used
the Mead Johnson Cleft Palate Nurser and made the cross cut
opening larger and squeezed the formula out. I also used sippy
cups, anything to get formula in him.



Please let me know if I can help.

[Elizabeth]

My son, Sammy, has cleft, soft palate. He is 7 months and VERY
underweight! He uses the " Haber" {what his sisters
call it

[Judy Adams Jpattutti@aol.]

My daughter is 8 months old and has a cleft palate only. She
did the same thing when she was a newborn. It was very hard to
feed her, like you said she would fight me when she was awake.
She had severe colic and the pediatrician thought that was why,
because the sucking hurt her tummy. I am not sure though, hearing
you had the same problem. The only things I found that helped was
to try and keep her as clam as possible during feedings, which
I'm sure by now you probably know. I used to walk around when I
fed her instead of sitting. Don't know why but it worked. I just
found this website and I sure wish I would have known about it
sooner. I did not know there were resources available and just
struggled by myself with it. Please feel free to email me and let
me know how your baby is doing. Judy Adams

[Caroline]

Our son Thomas is 13 weeks old and we are having big problems
feeding him. He has a ucl+p, he had his lip repaired at 10 days
old and the palate is scheduled for 6 months. He was in special
care unit for 4 weeks then came home for 1 week and was feeding
about 15 times a day taking very little. He lost weight during
that week and went back into hospital for a month. We have worked
closely with the speech therapist and tried the Haberman, Mead
Johnson and spouts various. He is home now with a feeding tube in
his nose (the nostril that was reconstructed with the lip repair)
because we can't get him to feed for more than 20 mins before he
falls asleep but the 20 mins includes big struggles and he takes
about 10mls max. He also has big reflux problems and vomits after
about half his feeds every day. He has booster powders in his
milk and Gaviscon now and it is like feeding him treacle! We are
lucky that he is starting on baby rice now and seems to like
this, but still only has 20 minutes feed before he falls asleep
so he gets all his milk down his tube. There doesn't seem to be
any improvement and he is probably going to have the feeding tube
put straight into his stomach. He is such a happy baby when he is
not being fed it is almost a shame we have to feed him because it
is always a real fight and very distressing all round. The
medical team that we see all say that he will be running around
like a trooper when he is older but that is not too much
consolation at the moment! Fortunaetly I have a very supportive
husband who is considering staying at home to look after Thomas
while I return to work. It is reassuring to know that are not
alone! if any one has any tips they would be much appreciated.

[Ruben]

Gavin has been diagnosed with either PRS or
orbitoauricularvertibral syndrome, but his symptoms don't match
either perfectly. They do however match Goldenhar syndrome. Our
Pediatrician is now exploring the possibility that this what he
has.



As of yesterday (6/1) he had taken over 20 ounces for three
consecutive days, so we are hoping that he is getting the hang of
this. I just hope that my sitter can keep him going, if not we
are going to have to make a change. Does anyone know of any
organizations which offer child care of special needs children?

[Ruben rtl.trevino@cwix.co]

Always know that you are never alone. It sounds like our
situations are similar so if you ever need an opinion please
email us. We would love to pass on any information that we have
or just be a sounding board.



Believe me we know what it's like to try to feed a baby that
has a passing interest in eating.

[Anonymous]

Hi:



We have a March of Dimes sponsored day care in our city for
children with special needs. Our population is about 42,000 and
this is the only place in town for special needs unless you find
a private day care provider. I used a private home until my son
was school age. His sitter was wonderful and took great care of
him, even after surgeries. It is hard enough to find good day
care, let alone those who will take special needs. We have a
locating agency in our county also that will help locate day
cares. Call the United Way, they might know of some. Good luck!

[Ruben rtl.trevino@cwix.co]

Thank you all for your responses. It is of great comfort to
know that we are not alone. I have made some calls and am hoping
that one of the local agencies will have an opening soon.



Thanks again.

[Sue]

Hi:


My daughter is will be 15 weeks. She has a bilateral cleft lip and palate. All of a sudden she is eating much less. She was taking 4 oz or 120cc but now after an ear infection she has pushed he feeds to 4 or 4 1/2 hours apart and is only taking 2 oz or less (60cc). I was wondering if anybody has any advice for me. Her ears are better and she is a happy baby. She just hates to eat. She is taking medicine for reflux but the spitting up is getting better. Her ears are better also.


Thanks.