Posted By Posting
Feb 25, 2009
mommato3
feeding specialist appointment update
We had an appointment today with a feeding specialist at our local hospital. She was very helpful. She thinks that Holden may have a submucous cleft(I think-where there is a cleft way back there but it is covered with skin so it is harder to detect. She is calling our ped today to make an ENT specialist appointment. I wanted to see an ENT anyway after reading some of your suggestion also that he could have a small airway due to the micrognathia (trouble coordinating suck swallow breathe). In the meantime we are thickening his bottle with simply thick to see if that helps him coordinate everything better. She also thinks he might have been aspirating into his nasal cavity(?). The swallow study didn't show that but he didn't even take an ounce during that so I don't know if it was reliable. So he has several things going against him (possible cleft??, recessed jaw, hyptonia, and reflux) We shall see. Thank you for your responses to my other posts! It feels good to have some other mommies that know what you're going through with feeding difficulties.
Feb 25, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
FYI - here is a good website given Holden's micrognathia: www.pierrerobin.org. You may find useful info on the jaw-related issues. Susie
Feb 25, 2009
mommato3
Thanks for the website! IF he does have a submucous cleft along with the micrognathia, could he have pierre robin?? I mean we don't know that he has one for sure. She just looked in his mouth real well as his hard palate is very high arc hed and said that it looked like a real possibility there could be one back there. She saw a white line (whatever that means) but Holden wouldn't let her get her finger in his mouth to feel around back there to see if she felt a notch. If he does have one that would explain a lot of his weak suck, etc.
Feb 26, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
The diagnosis for Pierre Robin is the micrognathia and the cleft palate. An ENT or craniofacial specialist can answer way better than I can. For us it was very clear as the micrognathia was notices at Charlie's 20 week scan and his cleft was very big at birth. We were ready for it when he was born but didn't really know until then. Even if Holden isn't officially diagnized with PR, you may have some issues in common given the small airway. and of course given the cleft, Charlie couldn't suck at all. Did you say you were using a special bottle? We used a Haberman and it worked very well.
Feb 26, 2009
mommato3
The only nipple he will take is a Similac nipple with a slit in it. We have put this on a bottle that we could squeeze and now use it on a ventaire. We tried the haberman but he didn't like it at all. Next week his speech therapist is bringing over a cleft pallete nurser (?) to try. I quess this is maybe a Mead Johnson. Feeding has become such an unpleasurable experience for him. I just wish he liked to eat (as I'm sure all of the moms on this board do). I think he cries and I cry with just about every feeding. His nutritionist comes on Tues. I'm going to push for Neocate or Elecare next week. Thanks for the support. I can't believe Holden's micrognathia wasn't picked up on in utero. I had a lot of ultrasounds because of his kidneys. They ALWAYS said something about how cute his mouth and lips looked! I look at the ultrasound profile pics now and it was so obvious!
Feb 26, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
I heard of the Mead Johnson bottle on the PRS website. People also mention a pigeon (?) nipple. I am sorry you are having so many difficulties! Totally agree with you that feeding should be pleasurable for baby and mom! I think the ultrasounds are helpful but not the be-all-end-all. I had multiple scans after they saw the small chin and they could never find a cleft. Then I go on specific cleft websites and moms are on there saying they saw a cleft at 18 weeks! What the? Please keep me posted on your progress. Susie
Check with your
doctor first!