My name is Marisa, and I was born in 1983 and diagnosed with PRS not long after. Of course, back then the local hospital did not know what was wrong as it wasn't as well known as it is now. I was taken to CHOP, children's hospital of Philadelphia, where they were able to inform my parents what exactly was wrong. Now being 28 years old, having had multiple surgeries until the time I was 18 years old, soft palate repair, eye correction surgery, tubes in my ears until I was 14. At 28, I do still have breathing difficulties
especially at night, I still wear glasses due to my eyes being horrible, never was 100% if that was due to PRS or not, I had tubes in my ears til I was 14 years old, and still have hearing difficulties, about half the hearing in my right ear than I have in my left. I had my jaw slid forward 1 cm when I was 16, and the year before had my wisdom teeth removed in prep for that surgery. Now this part is a little scary, if he goes under any type of anesthesia make sure to inform the docs of the diagnoses, and you may have to explain what it entails when it comes to airway problems. Most will listen, as it if more publicized now than it was 14 years ago, but some like my oral surgeon will listen but not hear, he ignored my mother and put so much stiff in my throat I was unable to breathe and they did not notice anything until I was starting to turn blue in the face, I was under anesthesia at the time so I was out thankfully. But they had to stop everything, thank god they really hadn't even started the procedure, they just knocked me out. I went to the hospital a day later and they were removed there with the help of a breathing tube to avoid further issues. Hopefully this will never happen to anyone again due to the publicity PRS has received in the last few years.
I had a gtube, when I was an infant, but everything works fine now, my parents say that once the palate was repaired and healed I was able to eat and drink normally, well as any 11 month old can. Now I advise all physicians of the diagnosis because of my breathing and airway issues. I have been seeking out getting my septum fixed as it is severely deviated, and causing more nasal airway issues than I really would like, but it can fix at least a small part of the problem, it is worth it, completely.
Can care be expensive over time, yes absolutely. Can the diagnoses be lived with long term, most definitely. PRS kids now are alot different then when I was little. More professionals with more knowledge of the sequence helps and goes a long way in treatment, and long term care options. So I hope some if not all of what I have said helps you be secure in the knowledge that your little boy can grow up and be just fine, will there be issues he has to deal with in life, of course, breathing will always be a problem, and hearing too in many cases, but it is totally possible to have and lead a normal healthy life once the bigger problems are addressed. If you have any other questions or concerns please e-mail me, I will be more than happy to answer any questions that I can. Gracie2128@aol.com
Hope I have helped! Marisa
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