Posted by Holly
on 9/11/2009, 9:14 am, in reply to "Re: please help our son"
174.56.131.147
Hello there...I am sorry that you and your family are having such a rough time. The first few months can be really overwhelming I know. I have an 18month old daughter with Prs and sticklers syndrome. She too started off eating and breathing well. She kind of pooped out around three weeks of age and underwent a surgery called a tongue lip adhesion. It is a very viable option for airway management and is not an outdated procedure. It allowed my daughter to breathe easy and to go back to feeding normally by mouth with a haberman feeder. She grew and thrived and is now walking/talking chubby 28lb toddler. There are several options for you to consider when looking at airway management. Breathing troubles in these babies usually peaks around 2-3 months old, and then begins to get better as they grow. My daughters jaw has grown out just fine without any surgical intervention and had no problems after palate repair either. The new trend these days is to do jaw distractions on these babies to eleviate airway obstruction. The problem is that it has not been done routinely on infants but only in the last ten years, so there is no long term data/research on how it will effect future jaw growth or perm. teeth. It is however an option to consider. Jaw distractions/tongue lip adhesions/ and nasopharyngeal airways are all options in treating the obstruction, but that is all that they do. They will correct obstruction in the oropharynx(the back of the throat). They will not fix any problems further down in the airway and they will not "cure" your son. Prs is a complex condition, but one that can be managed and allow the children to have a normal/good quality of life. It is important that they check your son's airway to find the cause of his breathing troubles before proceding with any surgery. Since your son also has craniostynosis, is imperitive that you have the right people caring for him since his case will be more complex than most. I would suggest a second opinion(not that your doctors are doing anything wrong by any means)so that you have all the information you need to make the best decisions in your sons case. A second opinion will help you know all the treatment options out there for him as there is more than one way to treat any one certain condition. We were very pleased with the team we ended up going with for our daughters cleft repair. There are two groups of surgeons at this hospital and although they differ a little in their opinions on treatment of prs kids, they are both very good and skilled surgeons. They see thousands of craniofacial patients a year. I would be happy to email/chat with you or your wife and give you any advice I can. Try and keep your chin up...i know this can be tough.
Holly
--Previous Message--
: Hello,
: I am glad your wife was able to help your
: son. Having a child with PRS can be very
: scary to say the least. My son is now 14
: months old and has had a lip to tongue
: adhesion, g-tube, mandibular distraction,
: ear tubes, and his cleft repaired. My advice
: is to find a Children's Hospital that has
: Dr.'s and specialists who have experience
: working with PRS babies. ASAP. We stayed too
: long at a hospital who performed outdated
: procedures on our poor son (Lip to tongue
: adhesion) that in my opinion wasted our time
: and nearly cost us our son's life. Please
: find a hospital who can help your family. We
: love All Children's Hospital in St.
: Petersburg FL if you are near the area.
: God Bless
:
: --Previous Message--
: Hello,
:
: My son's name is Ashton. He is 7 weeks old
: and was diagnosed with prs. He also has
: crainosystosis. His breathing was fine at
: birth and he has been able to bottle feed
: quite well. Last week Ashton spit up and was
: unable to breathe. He turned blue and my
: wife had to preform cpr on him. The Dr.s are
: torn on the options for Ashton. They agree
: his blockage in his airway is moderate. He
: seems to have developed a problem swallowing
: his spit. He also sounds very stuffy like
: there is some congestion. Does anyone know
: if this congestion will pass? If anyone has
: any advice please share, my wife and I are
: beginning to feel overwhelmed.
:
:
:
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