Friday, April 17, 2009

Physiatrist appointment and Answers!

Avery had her check-up with her physiatrist this morning. I really like this doctor, and I've been looking forward to this appointment for a while because Avery's muscle tone has been getting worse, and we really wanted to do something to help her with that. Even if it meant trying valium again. So I needed to talk to him! I also just really like going to those appointments because everyone is always really nice there and really seem to enjoy seeing Avery :)
So we are going to be starting Avery back on the valium. Poor girl is just having to fight her own body harder and harder as she grows. She keeps on having growth spurts too, and every time she does, her muscles of course get tighter. I blame her father for being so tall! :p Dr Brown was talking again about why he wanted to do oral medication rather than another round of botox, and here it is:
  1. Some of the muscles he would need to be getting in her hips are really virtually inaccesible
  2. Botox wouldn't be able to help with the inward turning of her feet
He spent some time trying to persuade me to do valium or baclofen, because last time we really didn't want to do it, but what he didn't seem to realise is that he didn't need to convince me this time! We're willing to try anything, because with the way her muscles are pulling her body right now could probably cause permenent damage to her hips, and we really want to avoid that. So! We're starting on a low dose of valium again, and hopefully this time we'll see more of the improvement and not so much of the side effects.

I almost didn't mention Avery's headaches, because it didn't occur to me that it would fall under his area of expertise, but luckily I did say something about it in passing, and he looked at me and said "She's been getting headaches??" and demanded to know more about them. As it turns out, it seems that he was exactly the man I needed to talk to about it! After watching how reliant Avery is on her arms when she's walking (when she's using her walker, her legs really only propel her, it's her arms that take most of her weight), he says that her headaches are probably related to her neck and how tight the muscles are there.
This makes SO MUCH SENSE!!!

I was wondering why Avery hadn't had so many dizzy/headache-y spells this week, and of course, it's because it was spring break and Brogan's been sick, so we've spent a lot of time at home which has meant that she hasn't done a lot of walking in her walker! And of course it's been getting worse as she's been getting stronger and more confident in her walker, because she's been straining those neck and shoulder muscles more and more! She's been doing a lot of jumping and swinging in her walker too. In fact, when we first got to the appointment this morning, one of the first things Laura (who does all Avery measurements) commented on was her strong shoulder muscles. This is why she keeps on getting headaches randomly while she's walking around - it's not random at all!
I just didn't think it could be shunt or seizure related - neither of those options made enough sense to me! If it was her shunt, it surely would have been getting worse, and it would have been worse if she was lying down I'm sure, but these headaches she always feels better when she lies down! I didn't think it could be seizures either because she's never "gone". Yes, she goes into little dazes occasionally, but she's always responsive when I talk to her, and these dizzy spells and headaches aren't ever preceded by anything wierd. I would have felt like a bad mother if it had been seizures because it never even crossed my mind as a possibility before Dr Qandah mentioned it.
I've been feeling relieved.
So we have another set of stretches to add to the inventory :)

Of course, I'm still going to be keeping track of the headaches and what she's doing when they happen, because we haven't actually ruled out anything. I don't think it's shunt problems or seizure related, but we'll still be seeing the neurosurgeon and neurologist to be certain. But we'll be doing these stretches, and if they seem to help then of course I'll feel even more sure that Dr Brown is right.
Now some photos and a video :)

Avery never seems to mind all the pushing and pulling and prodding that Laura does at these appointments! Here she is playing with some shapes and being silly while Laura gets her measurements.

Avery walked up and down the hallway a few times in her walker, and then with her crutches.

It takes an hour to get to Dr Brown's office, and the appointment was right when Brogan normally has his first nap, so they were both exhausted by the time we left, and this is what they looked like when we got home :)


Lisa said...

I am so glad that you got some answers! And even more glad to hear that it wasn't the shunt or seizures causing the headaches! Such good news!

Grandpa said...

Thank you again for this update. This is something how much attention you have to give Avery. I'm glad your the mama.