Saturday, May 3, 2008

UAB Rett Center

Our visit with Dr. Percy in Birmingham went pretty well! Thank GOODNESS for my neighbor who came with me so she could keep Addy and Morgan though because we had 7 adults and Riley in a tiny little room for about 3 hours.

I didn't walk away feeling like I know exactly what to do with Riley but I did get all my questions answered so I feel better about that.

Some key points:
  • He said if he were me he would not start the Depakene for the seizures because just about all girls with Rett Syndrome have abnormal EEGs. He said if we notice her having seizures or they increase we can treat them, but it's up to us. And also he did say he thought Depakene was the right way to go as far as medication.
  • Since she is the only girl with her mutation it's hard to predict what symptoms she might have, although he said it's hard to predict anyone's future. :)
  • At this time they didn't see any reason to do a swallow study or test for acid reflux. If we feel she is fussy and it could be reflux he said he'd probably just try medication first instead of going through an actual test. I forget the over the counter medication he named, but I already have some Prevacid I got from her pediatrician a while ago. I just haven't noticed her being unusually fussy so I haven't given it to her.
  • There isn't really anything we can do for her teeth grinding. He mentioned some rubber tubing to try, but I don't really see her chewing on anything like that. He said do NOT let a dentist tell us she needs mouth guards since they can get twisted around in her mouth.
  • There's also not really anything to do for her hyperventilating, breath holding and swallowing air. Just that it usually decreases after age 10. Something to look forward to I guess.
  • Miralax for constipation! Riley will go every day for a few days and then not go for a few days and it just so happened we were on day 4 with no poop on our appointment day so this question was on the top of my head. Actually we were a couple minutes late for the appointment because I was trying to get her to go before we left - and she did (on the potty, woohoo!) but they said we can use miralax when needed. I picked some up last night but haven't tried it yet. Haven't had to so far. :)
  • She weighed 24 pounds which is down 2 pounds from her last neuro appointment in January. They said she looked good though and they could tell she eats well but to be sure to give her lots of fats and sugar to keep her growing well. Actually I noticed a couple weeks ago that she seemed more thin so I had already bought whole milk and instant breakfast so we are on the right track. Her height (I forget what it is) is on the bottom of the growth curve and her weight is below the curve but as long as we keep her growing and proportional I guess she's ok.
  • Therapies recommended are Occupational therapy to hopefully get back some of her hand use and Speech therapy - they said to find a creative speech therapist and that signing doesn't generally work well for Rett girls. I told them that's why I gave her old speech therapist the ax and they laughed and said good for me. :) They didn't stress physical therapy but did say to keep her standing and walking. Riley was definitely not showing off in the walking department that day but they didn't seem overly concerned. She did walk a lot better once we got out of the room though, I think it was just too crowded in there!

I can't think of anything else right now... other than we need to find her a good pediatrician in Mississippi. I do have the name of someone though so I'll try to give that person a call on Monday.

Overall it was a very good appointment and it was so nice to be seen by people who actually know a lot about Riley for once! Our next appointment is in November!

Oh one question I forgot to ask is if they thought she was out of the regressive phase but I really think she is. A year ago she looked like she was so out of it and on drugs and now she is so much more aware. While her walking is shakier she isn't losing skills anymore either. I just wish her teeth grinding would slow down, it's driving me crazy especially when we're in the car!


Anne said...

erin, I think you could have written that post about Avery! Except for the constipation issue, Avery is the polar opposite, super-dooper pooper! I am ready to meet Dr. Percy and Jane. I have talked to Jane on the phone and feel connected to her.

Anne said...

erin, Im at my moms house and forgot she was signed into blogger! Carrie

Brooklyn said...

Long day, I'm sure but well worth it don't you think? Sounds like good news for the most part too which is nice! I agree, there is NOTHING better than a room full of doctors that know what Rett Sydndrome is! Glad you had a good appointment! We've been thinking abotu you!

D'Anne said...

I know exactly what you mean about the comfort of being surrounded by people that understand Rett... I feel the same way when we're at Duke.

Glad the appt went well overall.

(I don't know why blogspot is messing up my name? Like I need more punctuation)