This one is about: Pierre Robin - Moms Talk About Their Kids
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Over the period of a few weeks, various parents of children with Pierre Robin discussed things. This is the 3rd in a series of 6. If you would like to meet some of these parents I suggest you join Cleft-Talk - the email discussion group.
I too think that this is a great discussion. Elizabeth was initially thought to have only the submucous cleft, no PRS. But after her 2nd team visit they decided due to her small lower jaw, that she had PRS. She didn't have any breathing problems at birth so to speak. Her cleft was horseshoe shaped though and she never did raspberry's like typical babies and never stuck out her tongue either. (Tongue exercises are now part of her speech therapy.) Her pictures look like Zachary too, that little itty bitty chin with chubby cheeks!! I've done tons of searching on the net also, but haven't come up with much. Let me know when you find some really informative web sites! WS has been the best, by far!!!!!!!!!!
Here's my .02 cents worth.....
My daughter Meghann who is 9 years old, was diagnosed at birth with Pierre Robin Syndrome -- their words not mine. Since that time, her "condition" has been labeled sequence and syndrome interchangeably. I really am beginning to feel that this is more like a you say tomayto and I say tomahto type of thing. The bottom line is that most PR children have a small, or recessed jaw, a tongue -- can be small, normal or large (I think that most of them are normal but seem large because there is not room for them because of the size of jaw) and the tongue can be downplaced. Most but not all have clefts. Generally this cleft takes the form of a horseshoe shaped cleft of the soft palate; however clefting of the soft and hard palate does occur along with no clefting whatsoever or just a small notch in the soft palate.
I feel that Pierre Robin is like some other conditions in that there are degrees of severity or nonseverity.
Giving what my child had a name made it easier for me to deal with what was going on. They ruled out Sticklers, she didn't have this and she didn't have that. She had PR. Now my job as a parent was to help her. I got her to doctors, specialists etc. We worked on fixing the problems she had/has.
With Pierre Robin, we dealt with breathing problems....fortunately solved by positioning--I also became very quick at diapering as she didn't do very well on her back (blue is not a good color) Some children do not have trouble others have more than Meghann and require a trache. Meghann has had a continuing problem with breathing at night especially and has had surgeries to remove tonsils and then adenoids to relieve her obstructive sleep disorder. She also has problems with being intubated. It is also possible that she may have to use a c-pap in the future.
She had feeding problems -- we started with gavage, went to NG tube and ended up with a G-tube for 6 months. Others are more fortunate and can use different types of bottles and nipples; and some are fortunate enough to be able to breastfeed.
We have consulted a geneticist and have their findings and thoughts. We know what the odds are for us if we were to decide on having another child and for her and her siblings when they grow up and decide to have children of their own. That is being responsible.
Meghann's birth condition will probably affected her in one way or another most of her life. That is a fact of life...We don't dwell on it. We keep trying to get information so we don't miss some important "marker" that should have run a red flag for but we missed because we didn't know we were suppose to be looking for it in the first place.
Even after all these years, I always like additional information on Pierre Robin. I've also found sites by using the words Pierre Robin Syndrome :) I am especially interested in any information that you have on older PR children say around the ages of 10-15 -- sleeping disorders, jaw surgery and that kind of stuff so Chottsie or anyone else for that matter if you find info let me know, I imbibe information.
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