SDR in our future?

Ben had his 3-month botox follow-up with his physiatrist today. We've done botox twice now (mainly in his hamstrings). Botox has pretty much immediate effect for him, but unfortunately in tthe 2 times we've done it, the effects have only lasted about 4-6 weeks...nowhere near the 90 days we'd like to see.

So...Ben was nice and tight again today when she saw him. I, of course, was not surprised as we've been dealing with his tightness since about early April.

I WAS surprised by the discussion we ended up having. You see, Ben's physiatrist is extremely conservative. We've known this since the get-go and had planned to see some other experts early in 2012 to get additional opinions on what the best course of action would be for Ben. Basically, there are 2 options: continue rounds of botox followed by serial casting in an effort to delay any surgery for as long as possible OR do some sort of surgery now (like a selective dorsal rhizotomy) due to his extreme tightness.

Well...today, she actually stated that Ben is an excellent candidate for an SDR. She is going to refer him to another team at a children's hospital to see what their opinion is, but she's really thinking that an SDR would be a great option for Ben.

I couldn't believe it. I think my husband and I are a bit on the aggressive-side and to hear these words from a CONSERVATIVE doctor pretty much convinced me that an SDR is in Ben's future....likely in January 2012.

I am scared-to-death and excited-beyond-measure all at the same time tonight. I feel like we've just been spinning our wheels for the last year and now I feel like maybe there's a light at the end our tunnel.

Let the research begin!

(For information on Selective Dorsal Rhizotomies, check out this page from Gillette Children's Hospital.)

Casting Update

Casting so far has been pretty good. He wore his first sent of casts for 5 days. We took them off the on Labour Day morning. He really didn't want me to take them off, but was OK once I was finished. He had quite a bad blister on his right foot and a small blister on his left. I was surprised to find them since he had tolerated the casts so well and hadn't complained once about them. He even slept great every night with them on.

Standing / walking with the casts went pretty well too. Here he is standing at his train table in his bare belly (he LOVES having a bare belly):

We went back in on Wednesday to have another set of casts put on. They were quite surprised that he had blisters. Apparently it's fairly uncommon to get blisters...who knew? After some discussion they decided to just do his left foot and leave the right one to heal. Ben was not impressed that he only got one boot this time!

His physiatrist took measurements of both his hamstrings and calves. At this time, I don't understand the measurement stuff as much as I'd like to. I do know that he is improving. I plan to get our Private PT to go over the measurement stuff with me this week and I'll post more on it once I understand it better.

We only kept that cast on for 2 days. I was scared that the small blister might get worse and the most change happens in the first 24 to 48 hours. Plus, having just one cast was more difficult than having two. Walking with just one was much more difficult for him since he was lopsided.

We head back in on Wednesday this week and hopefully they'll cast both feet this time.

I have to say that casting is nowhere near as bad as I thought it would be. He has tolerated it extremely well with absolutely no complaints. I do think that he's experiencing some muscle weakness. He seems to have a better gait when using his walker, but seems to tire more quickly.

Our Private PT returns this week after being away for the entire summer. I'm anxious to hear her opinion on how Ben is doing and what the Botox and Serial Casting has accomplished so far.

New boots

So here's my Ben with his new "boots" as he likes to call them. The day went really well and Ben was a trooper as usual. He always amazes me how well he does with stuff like this.

It took about an hour for the PT to do both casts. And he was happy to watch Dora while she worked away. It actually worked out well, because he now has red boots "just like Boots".

These are fibreglass casts. So they'll stay on until Monday and then we'll take them off ourselves. He'll have Monday night, all day Tuesday, and Tuesday night cast-free and then he'll get his next set on Wednesday. We're hoping that he won't lose too much muscle strength by having that time off in between casts. He'll probably have 3 weeks of casting.

The PT said that the most benefit occurs in the first 24 to 48 hours. So if he's complaining and we can't get him to stop, then we should take them off. So far though, he really likes them and there hasn't been any complaining at all.

He's not allowed to walk or stand on them today, but can starting tomorrow. He should be able to walk with his walker even with them on. I'm really hoping that's the case.

So really...today was no big deal. No shots, no anesthetic, no crying. Easy-peasy. Now we just look forward to RESULTS!

Botox

Just a very quick post to let you know that we're off to Fredericton (90 minute drive away) for Botox tomorrow. Ben will get 2 to 4 injections into each hamstring while under oral anesthetic. The appointment is at 1pm. We need to be there by noon to be admitted into paediatrics.

He is allowed to eat breakfast but nothing after that. That may be difficult but hopefully not too bad.

I'm a bit anxious about it, but excited at the same time. He needs this. He really does. I'm also anxious but excited about the serial casting for his calves in September. His walking has deteriorated alot over the last few months. He's always on his toes. Always. And he falls onto his knees quite often when using his walker. I hate that. I miss the great gait he used to have.

That said...he still loves his walker. And uses it more and more. He's even more confident using it outside on uneven ground. I can't wait til his hamstrings and calves are looser so he can do even better with it.

Wish us luck!

Botox, Serial Casting, and New Braces

Ben had his first Spasticity Management appointment today and the Stan Cassidy Centre for Rehabilitation in Fredericton, NB. We've been there once before. At that time, it was just a huge (3-day) evaluation and he was added to their Spasticity Management list.

It was a great appointment considering it was from 12:30 to 3pm (yep, you guessed it...naptime). Ben was awesome. Fredericton is a 90-minute drive away for us and although he didn't nap on the way up, he did rest and I think that made all the difference in the world.

We met with the PT, OT and the Physiatrist. They were all awesome and I have no doubt that Ben is in the best hands when he's there. These people know what they are doing. And they are nice too. Love them.

My goal for this appointment was to get Ben on the list for Botox injections. I wanted them for his ankles / calves...they are just way tighter than they used to be. I also wanted some advice on what we need for AFO's / braces now since the ones we have are getting too small and probably aren't sufficient for his needs anymore.

In the end, they were more concerned with his hamstrings then his ankles. Which surprised me. I need to talk with his regular PT's to understand it more. Their recommendation is botox for the hamstrings and serial casting for the ankles / calves. And then of course, new braces after the casting is done.

I'm not sure when the botox appointment will be. There is quite a wait for the OR (like January 2011) if we do it under general anesthetic...which is just way too long. So we're going to do with it with oral anesthetic in September (hopefully). Casting starts in September too.

I'm still digesting all this information. It's alot to take in at just one appointment.