Friday morning was our meeting with the craniofacial team in St. Louis. Several of the specialists were out for the day but we got to meet with the ones important to us. We first met with the nurse, DeAnne. She took basic vitals and asked how he was doing. She looked at his tongue and said it looked good! Since the ENT was not there, we asked her about his adenoids/tonsils and whether they would have any affect on him getting so many colds or his speech. She said his right tonsil was fairly large (probably left over from the strep he had months ago) but they wouldn't affect him. She suggested trying claritin or getting him allergy tested. We also talked ADD/ADHD with her, sleep schedules, the miracle of melatonin, her kids....she loves to chat! :)
Psychology was next. We had to fill out a little evaluation form while we were waiting that I assume was a quick screen for ADD. When the Dr. came in he said something like, "You seem to have your hands full with this one" or something like that. He asked if he had been evaluated for ADD/ADHD. I explained he had but since teachers and us didn't match up, nothing was done. He said signs become more evident as they get older. He suggested finding a counselor not just for that but to help with parenting since parents don't get a handbook when kids are born. I think he said the same things 4 years ago.
Next up was audiology. We let them know about his dog toy incident and the hearing loss in his right ear. They do several different tests that show if the ear is functioning and how well he can hear. I guess one of the things showed the damage. When they did the hearing test with headphones, it showed the loss at 4000mhz. When they did it with the in-ear things, he had normal levels! She said there is a small population of people that have collapsing ear canals and maybe when the headphones are on, they collapse and he does not hear as well. Interesting... but good news!
Speech was next. We love Renee! She's just so peppy! She had a little conversation with Adam to see how he spoke. Then she asked if we were doing any speech therapy. I told her we had been in therapy for a year and have been stuck on S's and Sh. She said that's what she had noticed most when he spoke. We asked if it had anything to do with his larger tongue or surgery and she said nope - it was all just basic articulation problems and some are still developmental.
Last, but not least, was Dr. Marsh who did his tongue reduction surgery. He will be retiring the summer of 2015 so he also had Dr. Gage with him who will be taking over the practice. He checked Adam's tongue and jaw. He said if he was a betting man (which he isn't), he doesn't think Adam will need any corrective jaw surgery. He thinks everything can be done with orthodontics. Right now Adam's teeth/jaw meet. (He does not have an over-bite or an under-bite.) He said who knows what may happen during puberty but he's hopeful that it will stay about the same. We also asked him about the tongue and colds and speech. He said the only problem the tongue could cause is sleep apnea if it was still too large. We are pretty sure Adam does not have that. One thing that was interesting - he asked Adam to "do this" (as he touched the roof of his mouth with his tongue). Adam was like, what? So I told him - touch the roof of your mouth with your tongue - and he did. Dr. Marsh said most BWS kids can't do that. He said he has seen them do it at other times so he knows that they can but when he asks them to, they can't! .....but Adam can! :)
That was it for St. Louis. Pretty good visit overall! And we love the Drury hotel there - super nice staff, free beverages and popcorn all night, yummy breakfast in the morning, and an excellent discount if you are there to visit the hospital! :)
Today was a visit to the orthopedist to check on his lower limb length discrepancy before school starts. We had not been there in about 3 years because the last time we went, Adam freaked out tried to kick the doctor. She told us to come back only if he was having any problems.
I made the mistake of letting Adam have chocolate Lucky Charms for breakfast this morning since I wanted him to have something to eat and he wasn't in the mood for the Cheerios he picked out last week. I don't know if it was the cereal or not but Adam was super loud-disruptive-can't-sit-in -my-seat - boy when we got there. It was a challenge just to get checked-in. I had brought the iPad hoping it would keep him occupied - which it did - but then he would make loud commentary on his games. We finally got in a room and got through all the questions from the nurse (all with Adam blurting out things like "butt" and "poop"). The doctor came in and Adam hid under the table! Gah! I pull him out and all he needed to do was stand so the doc could get a good look at his legs but he's leaning/hanging on me. Finally got him to stand and let the doc look quickly. Then the doc wants him to lay on the table with his legs straight. He had to be difficult for a minute but then straightened out and as soon as the doc went to grab his feet to check discrepancy, Adam wanted his shoes off - which actually was pretty smart. I think it would be easier to see without shoes on. Doc eyeballed it and said he's at about 1cm difference. Long story short - follow up yearly. When he gets closer to puberty, we'll be better able to judge surgery options (if needed). There is a new doc that is at the main Children's hospital that specializes in lower limb discrepancies but this guy said he can follow him up until puberty and then send us there.
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