Hello,
I have a 7 month old baby boy (my 1st child after 4 years of waiting) who have been diagnosed with Pierre Robin Syndrome and he is scheduled for operation in June.
I have been searching the internet for patients who have survived similiar case as my son's but I can't find any. I wanted to know how your kids are right now and what they have gone through with the syndrome.
Also, my son have hypothyroidsm. If you have kid/s with the same condition, please share your experiences with me.
My baby's doing well but still, I am curious about how other parents with kids who are in the same situation as my son are coping with this. I want to make sure I am giving mybaby the proper care that he needs, aside from the advice of his doctors.
I hope to get feedbacks.
Thank you all and God bless you...
/PrettyCielo
www.andsoiblogged.blogspot.com
HI I have a 20 mos old daughter with Pierre Robin. What operation are you speaking of??? Kate already had her palate repair (came through it like a champ). She has a trach and is having airway reconstruction this summer.
She's doing great otherwise...perfectly healthy and normal.
Hi. I have a 3 month old daughter who was diagnosed with hypothyroidism at 4 1/2 weeks. Her first screen came back normal, but her 2 week test showed a problem with her thyroid. She is on 35.7 mcg of Synthroid daily and is doing well. No signs of any issues or problems and the doctors say the risk of developmental issues is negligible because it is caught so early. Good luck and God Bless.