palate issues...anyone?

[purplepaisleymama]

My youngest has had feeding issues since birth....she had a very tight lip tie that was revised (incompletely) at 10 days old and a posterior tie that we have been dealing with since 5 months...she was completely breastfed, though I think only because she was the sixth and I knew it wasn't me. We have been dealing with her choking on think liquids... including her own saliva. Her official diagnosis is either mild CP or developmental delay...depending on which Dr you listen to.  I had posted about her issues on a board that I help admin on and an SLP on there was interested in her palate...she asked for pictures to see what might be going on....when I sent them to her she saw some issues with the look of her palate and her teeth....her response was that she thought there may be a submucosal cleft palate issue. I was not completely surprised because I had thought there must be something else going on....and her teeth are really jacked....they are nearly sideways ....and when I googled the pictures that came up were exactly like hers....sigh.

I don't know where to go from here really....as the SLP is in another country and cannot really advise where would be best and I am sure that our pediatrician is not going to listen( he is a great guy that has served us well for years....he doesn't freak about nonvax etc so I am happy with his idiosyncrasies...).  I guess we could cold call the different doctors involved in cleft in the area...but will I sound like a crazy person questioning this and is this really something that isn't caught right away?

[aspeechthx]

Yes, I would call a doctor in your area, most likely an ENT, to find out more about your suspicions. Clefts of the soft palate are not caught right away because they are often submucous, or hidden under the soft palate. Some signs may include discoloration of the back 1/3 of the roof of your mouth (the soft palate) or a bifid uvula (which means a split in the uvula that hangs down in the back of your throat).

Edited by aspeechthx - 11/29/12 at 7:19am

[momtoalexsarah]

My daughter had a submucus cleft palate - your issues sound very similar to ours.  I would have her evaluated by a cleft palate team (found at a childrens hospital) Just currious, what country are you from?

My daughters was fixed at almost 3 years old - although IMHO it should have been done far sooner - but submucus clefts are often treated later because of difficulty in confirmed diagnosis and different types of repairs.

[purplepaisleymama]

Thanks for the support and advice! I am goung to call next week....I just need to figure out which hospital to call...there are a few around that have teams for palate and two have been recommended to us...Boston Childrens and Mass General.....we live in NE CT and though I hear that there is a team at Hartford I would rather Boston. We are near Providence RI but the only surgeon we have experience with there moved and he actually worked with the team at Boston Childrens......so I am leaning towards them.

[montanamomof3]

I belong to a support group for cleft lip and palate parents or anyone affected by them.   cleftsmile.org

they are on facebook as well.  But I do know that there are a lot of parents that live in Mass. and can give you advice.