Wednesday, June 25, 2008

Avery Update

Thought I would give all my blog readers a general update on Avery. She is doing pretty well overall. She seems to have plateaued as far as gross motor function. Her walking has stabilized a considerable amount. She actually hasn't had to wear her helmet in over 3 weeks. She still looks like a weeble-wobble most of the time, but she isnt falling nearly as much. Her hand function is not improving.
We are at a crossroads with early intervention. The program took a huge fiscal hit with their budget being reduced. With the exception of physical therapy, we arent seeing much out of her therapy sessions. They are reducing her services to 1 time a month for ST, OT, and with her DT. She will continue to receive PT 3 times a month.
She has started having what we are fairly sure are seizures. The first episode was 30 minutes of shaking, much like when you get a chill down your spine. She was grunting and very agitated. The next 2 episodes were much more consistent. She was walking, her knees buckled, head tilted back and her eyes rolled back in her head. Each episode lasted 3-4 seconds. I am having a hard time deciding whether or not to start medicine. I feel like if I start now, she will never come off of it ever. Dr. Suhrbier, her neurologist, has left the decision up to me. Clinically she has enough of an abnormal EEG to warrant meds but he also isn't quick to prescribe them. I am taking a wait and see approach. If the episodes continue than I will go ahead. If this was an isolated incident I will wait it out.
We went to the gastroenterologist yesterday. Avery is the polar opposite of most Rett girls. She has NEVER had a single episode of constipation. In fact I call her my "super-dooper pooper". I have been concerned for about 5 months now. They ordered a slew of tests but Dr. Sacks feels that she has what is called "toddler's diarrhea". It is a benign process that she will outgrow some where around 5 years old. I guess in the big scheme of things I would much rather her be this way than miserable with constipation.

(sorry, no pictures today! I will post some new ones later)


Brooklyn said...

LOVE the new look to the blog! It is beautiful!!! Thanks for the update on Avery too. I am SO excited that we are getting closer to your visit to Indiana! I can't wait!

Anonymous said...

I love the new look to the blog too!

Sorry about EI cutting back, I know how that goes and it's no fun.

I am pretty sure Riley is having seizures sometimes too and I've been tempted to start her on meds but haven't yet. So far we've only seen her seizures or seizure-like episodes at the table before she eats or right away in the morning when she's laying on the floor and I'm changing her. They haven't affected her walking or anything else so right now I'm holding off on medication. If she starts having them while she's walking and they cause her to fall and get hurt or something I might start. It's such a hard decision. I sort of wish Dr. Percy would say start or don't start but he left it up to us.

Yeah constipation is no fun!

Anonymous said...

As far as being the "super-duper pooper", looking into allergy testing my be a good idea. Food allergies can effect the GI system and not seem to always cause hives or other ill effects. Runny poop could be due to milk, wheat, soy, peanut, eggs or even certain types of fruit. You could keep a diary of what she eats and her bowel movements. There could be a connection.
Constipation is certainly no fun, but neither is the other end of the spectrum.