Ben is in another set of red casts. His gastrox (calf muscle) is really tight again and I felt another round of serial casting was necessary. Luckily, I have access to some really great people and managed to get him scheduled for casting within just 7 days of my first call. Amazing!
But...the more serious issue is that he is SUPER TIGHT again. And I mean tight. The PT who did his casts today couldn't believe how tight he was. (She only sees him when we do some sort of spasticity management, she's not his regular PT.)
We're scheduled to have a conference call with his physiatrist in a couple of weeks to discuss our options for dealing with Ben's spasticity. So in light of that call, I'm trying to learn as much as I can about the different methods used to manage spasticity. I asked the PT today for a head's up on what I should be looking into.
So far, to manage Ben's spasticity, we've been doing stretching, botox and serial casting. Basically, the minimally invasive stuff. In the hopes of managing it well enough to put off surgery as long as we can. But, that doesn't seem to be working too well.
So, his PT suggested that I read up on baclofen pumps and selective dorsal rhizotomies ("SDR"). Wasn't quite expecting that today!
That doesn't mean that I haven't thought about these options, I just wasn't expecting to hear that from the PT today. The Centre that currently manages Ben's spasticity is considered to be quite conservative. So it was a bit shocking to hear SDR come out of her mouth.
I've been thinking about SDR's alot lately. Ben is a prime candidate for one (i.e. mostly affected in the legs and both legs equally-affected). But I'm scared to death of the rehab after. Ben is not the most cooperative kid in PT. Right now, we're pretty much doing whatever he wants at a PT session in order to keep him as happy as possible. I can't imagine having to do many PT sessions a week.
Anyways...the PT told me to check out Gillette's website for more information about spasticity management so I did. If you're dealing with spastic CP, you should too. It's quite an interesting read. Here's the link.
I'd love to hear from any of you that are dealing with (or have dealt with) this. To me, the parents are the true experts...especially the ones that have "been there, done that". You can either leave a comment here, or send me an email at aboutthesmallstuff at hotmail dot com
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I'm in the very same boat. Not sure which direction to be steering right now...
ReplyDeleteFirst attempt to fight tightness was serial casting. It was too drastic for Oia. She had a horrible time recovering from such a stretch. Then, she suffered a seriuos ankle injury from being stretched "too much". Also, I think any amount of immobility in any CP kiddo is not the best thing so no more casting here.
Second attempt, Botox in her right calf, the affected side. Lasted only 3 wks. Back to where we started.
Next week, we have an appt. with our ortho to discuss what to do next. More Botox? Nothing? Night splints? We are open to what he has to say then we'll go from there.
Truthfully, I just want to do lengthening surgery but it's not common on kids under 5. I know without doubt, Oia will have surgery in the future. I am so very hesitant to do a second round of Botox when it's long term effects are so unknown and there are too many scary "studies" out there that claim Botox is more harmful in the longrun that helpful in the short term.
Who knows? So much to think about. Curious to know what your doc suggests.... our kids are about the same age. Keep us posted.
Caryanne, I haven't really faced this yet, but I did ask my PT in depth about it because I like to see things coming so I have plenty of time to worry (lol). My PT said this about SDR: when he was just out of PT school 15+ years ago, everyone was doing SDR. He learned to not love it because the screening wasn't selective enough, so folks who were not great candidates got the surgery then spent a year with a loss of functionality they'd previously had, to great frustration. He thinks it is great if the person is well suited to it but he didn't think we ever would be (not sure why, I put that out of my mind apparently). He felt it was really hard for kids who had mobility to lose it and end up in a wheelchair while they had muscles that previously coasted on the strength of the rigid muscles now have to come online and do double duty. This one scares me, and yet, it seems to make sense that you just take the troubled muscles out of the game to make way for those that don't get bad signals from the brain. I don't know what I'd do, honestly. Jo had SDR for her son, do you know her? If not I'll put you together. She previously posted that she and her son were really pleased with their results although the boy had to do a LOT of extra PT to follow through with the treatment plan and get the most out of it. One of our PTs recently slid the ideas of some of these treatments past me when I wasn't expecting that. I hate those surprises! I think Hannah is moving so well but someone always wants me to know that could change any day. :( I'll be thinking of you, trying to send low spasticity thoughts in your direction, and towards Mo too.
ReplyDeleteI have worked with children who have had good results from every single option for treatment of spasticity. And some who have had no good results from any treatment option.
ReplyDeleteHope you don't mind me chiming-in.
PERCS is a relatively new orthopedic surgery that is showing some success. http://www.utmb.edu/ortho/clinical/faculty/percs_faq.htm
The decisions you face are not easy. Barbara
Hi Cary,
ReplyDeleteMy grandson's parents also face the same difficult decisions. Earl is on oral Baclofen, it has helped reduce spasticity without noticeable side effects. He wears day and night braces. He has had 3 series of Botox. The first a year ago, good results lasting about 6 weeks. The second three months later, no effect. The third yesterday, we'll see. I follow two blogs by mothers of 3 year old boys who have had SDR. Johnny in a Dress and Jump in for James. They are both pleased with the results. If you are on Facebook, there is a Family Forum. Parents discuss everything from making the decision to the surgery and the recovery to the post-op therapy. Type "Selective Dorsal Rhizotomy" in search. It's through St. Louis Children's Hospital. Physical Therapists typically are not in favor of SDR. The doctors here in Michigan are very cautious. Earl has not been through the process yet.
We had a very exciting week. Earl walked independently!!! He can go about 15 feet, then he falls, laughs, pulls back up on something or someone and goes again. He's very proud of himself!
Hope this helps.
Carol
I had an SDR at 3, back when they were becoming popular. The last few years I've been through Baclofen & Botox, night splints, AFOs.... Each one has it's pros and cons. Each CP kid is different too. So my advice is do what you think is best for Ben. Take your time and do your research & talk to people you trust. You'll figure it out.
ReplyDeleteHello, Cary!
ReplyDeleteThanks for popping by my blog...and for leading me to yours! You have an awesome blog! And BEAUTIFULLY HANDSOME boys!
As you know, my Ellie had SDR surgery last year, when she was 4 years old. We have been very happy with the results, although I'll be the first one to say that SDR is by no means a "cure" or "miracle". But, the benefits we've seen as a result of her reduced spasticity have WELL out-weighed the risks. We participated in THREE evaluations from three different neurosurgeons before we decided to go ahead with the SDR. The testing they performed was pretty intense, so I wouldn't worry about "easy candidacy". I think they've learned from their mistakes and the screening process has become much more selective. Fortunately, we received 3 "yes"s, so it helped make our decision a little easier. (BTW, one of our "yes"s came from our neuro at Shriner's in Minneapolis, who performs the surgery at Gillette's.)
We opted to go with Dr. Steinbok in Vancouver because 1) staying in Canada was BY FAR the cheapest, 2) he has performed over 500 of these surgeries, 3) he performs the less invasive type of SDR and the recovery time is cut in half, 4) we trusted him completely. We haven't once regretted our decision. Dr. Steinbok, his staff, and the staff at BC Children's Hospital were all amazing. (We live in Manitoba, so it was a trek for us to get out to Vancouver, but definitely worth it.)
If you have any other questions, let me know! It sounds like your Ben is a little more physically advanced than Ellie, so his results from SDR could well lead to independent walking. Dr. Steinbok was always really honest with us, and he predicted that Ellie would still have to use canes, even with the surgery. But, the reduction in spasticity has changed Ellie's life.
Hope that helps and I look forward to reading more about your beeoooteeful family!
Chrystie
Ben sounds like me, as far as the "not being the most cooperative kid in PT" part haha. I have had several surgeries on my legs to try and combat my spasticity, the first being archilies and hamstring lengthening at age four. I hated being in the casts so much that my parents had to ask the surgeon to remove them two weeks after the surgery, but I hated PT even more. Apparently I used to scream every time I went. In other words, I was very stubborn and I pity my poor parents for having to deal with it! Although tough, surgery has helped me for sure. Good luck on your decision and thanks for following my blog!
ReplyDeleteCaryAnne, I posed your question to my PT again and he wondered if you have looked at the Baclofen pump.
ReplyDeleteAfter just seeing our orthopedic surgeon, we're just getting into see the Hypertonia Clinic at Bloorview on the 3rd of March. I have heard a lot of success with baclofen pumps. And Cary? Congratulations, I now have to google SDR's. Usually when people talk about spasticity treatments for kids with CP I can usually confidently say "Yeah. I know, I googled it" ;)
ReplyDelete