Pierre Robin Network Message Central: Re: Nurse

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Re: Nurse

Posted by Karin on 4/26/2008, 9:13 am, in reply to "Nurse"
98.169.39.99

Valorie -- unfortunately, there is no one answer anyone can give you. The practice in treating PRS varies for three key reasons: 1. What caused the PRS; 2. How severe is the breathing difficulty; 3. What is the philosophy of the cleft palate team seeing the child.

Since you mentioned existing surgery (G Tube), the baby probably has lots of existing doctors and visits? It would be rare indeed for a PRS baby to be discharged without a lot of follow up visits.

For the small jaw/tongue, cleft issues, there is no physical therapy that can help, but PT may be available for other problems, if the child has any.

The best place to start is to ask for an informational appointment from the cleft palate team or the plastic surgeon that sees the child. If there isn't one ... well, the child needs one. The answers you will get will depend on how that team likes to proceed. In some parts of the country/world, a jaw distraction surgery is used at a very young age for airway protection; in other parts, distraction is the last surgery, done when older for cosmetic reasons only. Palate repair will vary from 6 months to 2 years, depending on the cleft team, the strength of the child, and any other issues unique to the child.

I would go ahead and read the information on this website, and google "Pierre robin" and you should get lots of websites that will provide a lot of information.

Good luck.

--Previous Message--
: I am a special rates nurse through children's
: services. A baby was placed in a foster
: home that has Pierre-Robin. The baby had
: failure to thrive and frequent episodes of
: aspiration.
: He now has a G-Tube. My knowledge has been
: mostly second hand.
: I don't need to become expert, but I would
: like to be able to give his foster mother
: some information that will be useful to her.
: Can the small jaw/large tongue be corrected
: with physical therapy? Surgery? At what
: age?
: If the child has tendency towards
: aspiration, do they do well with thicker
: substances?
: Thanks.
:

Message Thread:

Nurse - Valorie Davis 4/25/2008, 3:56 am
- Re: Nurse - Karin 4/26/2008, 9:13 am
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--Previous Message-- : Valorie -- unfortunately, there is no one : answer anyone can give you. The practice in : treating PRS varies for three key reasons: : 1. What caused the PRS; 2. How severe is : the breathing difficulty; 3. What is the : philosophy of the cleft palate team seeing : the child. : : Since you mentioned existing surgery (G : Tube), the baby probably has lots of : existing doctors and visits? It would be : rare indeed for a PRS baby to be discharged : without a lot of follow up visits. : : For the small jaw/tongue, cleft issues, : there is no physical therapy that can help, : but PT may be available for other problems, : if the child has any. : : The best place to start is to ask for an : informational appointment from the cleft : palate team or the plastic surgeon that sees : the child. If there isn't one ... well, the : child needs one. The answers you will get : will depend on how that team likes to : proceed. In some parts of the : country/world, a jaw distraction surgery is : used at a very young age for airway : protection; in other parts, distraction is : the last surgery, done when older for : cosmetic reasons only. Palate repair will : vary from 6 months to 2 years, depending on : the cleft team, the strength of the child, : and any other issues unique to the child. : : I would go ahead and read the information on : this website, and google "Pierre : robin" and you should get lots of : websites that will provide a lot of : information. : : Good luck. : : --Previous Message-- : I am a special rates nurse through : children's : services. A baby was placed in a foster : home that has Pierre-Robin. The baby had : failure to thrive and frequent episodes of : aspiration. : He now has a G-Tube. My knowledge has been : mostly second hand. : I don't need to become expert, but I would : like to be able to give his foster mother : some information that will be useful to her. : Can the small jaw/large tongue be corrected : with physical therapy? Surgery? At what : age? : If the child has tendency towards : aspiration, do they do well with thicker : substances? : Thanks. : : :

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