New here....questions for a friend

Children and adults with cleft lip and/or palate issues

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New here....questions for a friend

Postby clawson5104 » Mon Nov 26, 2007 1:20 am

Hi everybody, I'm new here, and actually found this site for a friend of mine. I thought I would ask a few questions for her, until she is able to check this site out. First of all her son is 11 mos. old and has a cleft of the soft palate only. they will do surgery in Jan. she has alot of questions of course. she is really concerned that they are treating her son as he has cleft of hard and soft palate, but he only has it in the soft. she is getting conflicting info from his team of docs on aftercare instructions. one tells her he cannot eat or drink, she can only use a dropper and "drip" fluids for like 3 weeks, another says sippy cup a few days after surgery. he actually can suck on his bottle, it's getting it down his throat instead of going up in his nose that is the problem. he eats really well too, great weight and growth. they also told her that even though he does not have alot of ear infections (he has had only 2) that he has to get tubes in his ears because of the cleft. so if any of you have ANY experience with this PLEASE let me know. she wants the best thing for her baby, but is getting confused with different info from docs.
hopefully, she will be able to get on in a few days, but in the meantime, i thought i would help her out. thanks a WHOLE bunch. i told her there HAS to be a forum group somewhere on the net, my son has a mild form of Cystic Fibrosis, and I honestly would not know what to do with my CF family ONLINE!!! GLAD I CHECKED AND FOUND MY FRIEND A SUPPORT FAMILY TOO. thanks, and I am eager to hear your input.

Carrie Lawson, friend of worried Mom
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Postby samjune79 » Mon Nov 26, 2007 1:15 pm

When my son was having his full cleft palate surgery at 6 months we were sharing a room with a 3 year old with just a soft palate. First of all, in my area they attach a string to the tongue to keep it from moving into the stitches and for other reason if swelling gets bad. Ok, so back to the 3 year old. After he was fully awake they wanted him to drink something right a way. They gave him a slushy. They told him to eat liquid diet for the first few days. My son had the full cleft lip and palate and at 6 months for his palate surgery he couldn't suck on anything. I had to feed him with a syringe. You are welcome to look at my myspace photos to see the stitch in the tongue if you would like.
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Postby jacksmom » Mon Nov 26, 2007 6:31 pm

One thing I learned right away after my son was born, was to pick one doctor and stick with him! We also visited several surgeons and got lots of conflicting advice. It has always been so amazing to me that there can be so many approaches to fixing one problem! My son had his palate repaired at 10 months and was able to immediately go back to his haberman bottle, but if your friends child is using a regular bottle, I can see why they wouldn't want him actually "sucking" on anything. I know there are lots of docs that would rather them be on a sippy cup before surgery. As far as the tubes go, Jackson got them at 12 weeks old. We were told that all cleft babies end up with tubes sooner than later. Jackson never had infections, just fluid build up and slight hearing loss.I have found on here that there are exceptions to that rule, but I think most do get them, just to prevent any hearing problems. So, many kids get tubes now, that I can't see that it hurts anything, especially if they are going to do them at the same time as his palate repair. So, it won't be an extra surgery. The main thing is just to find a PS that you have 100% confidence in, even if you have to go a little out of the way. If she doesn't mind us knowing where she lives, I'm sure there is someone who could suggest some cleft teams. There are people from everywhere on this forum! You are a great friend! Tell your friend to come ask any other questions she has! I feel the same way you do about my online "cleft" family! The last year would have been much harder without my new friends! Good Luck!
Allison
Mom to:
Griffin- 6/22/04
Jackson- 6/29/06 (Bil cleft palate)
www.babysites.com/sites/astand/
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THANKS SO MUCH!!!!!!

Postby clawson5104 » Mon Nov 26, 2007 10:35 pm

THANK YOU SO MUCH, I COPIED AND EMAILED THIS TO MY FRIEND, AND SHE IS SOOOOOO EXCITED TO HAVE SOME SUPPORT!!! I cannot wait until she can actually find time to jump on here, she can ask better questions with it being her son, we are in WV, and she takes her baby to WVU. they really are the best here, I think docs are just not getting together and communicating. thanks again!!
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