Avery and SPML (early days)

We have met Avery before (here), and now her Mom, Josephine, would like to tell us a little about their experiences with Selective Percutaneous Myofascial Lengthening. Avery just had this surgery 2 days ago, so it is still early days, but Josephine plans to keep us updated with Avery's progress. Here's what she has to say about their experiences so far:

How did you hear about SPML?

Our ABM therapist recommended it to us, since she really felt that Avery's muscle contractures were preventing Avery from progressing.

Why did you decide to try it?

It's minimally invasive, minimal risks, and addressed what everyone agreed is holding Avery back the most (muscle contractures) We definitely felt it was a better choice than traditional PERCS, with a much lower recurrence rate, and higher effectiveness long term.

How old was Avery when she received this surgery, etc?

5 and a half (2 days ago, Aug 26 2011)

Describe the procedure as you understand it:

She got SPML in 3 locations on each side (6 total). Gastroc recession, semitendinosus percutaneous tenotomy, Myofascial lengthening single hamstring at knee (on the right) and multiple hamstring at knee on the left, percutaneous adductor tenotomy left and right, and alcohol block obturator nerve on both sides. The SPML differs from traditional PERCS in that they don't actually cut the muscle - they sort of "mesh" the myofascia surrounding the muscle. I really recommend these two websites if you're looking for information about the procedure: Dr Nuzzo's info page here. Dr Nuzzo developed this method, and although he writes in a long-winded sort of way, all the information you could want about the procedure itself is there. Dr Yngve, who learned the method from Dr Nuzzo, answers some more questions about it more clearly here. We chose to go to Dr Yngve, simply because he accepted our insurance. He was really great. The alcohol block addresses spasticity.

Please share some of the changes (good and bad) you saw in your child:

Avery is only 2 days post op, so obviously, it is still early days, but I will tell you some of the changes we have already seen! They measured and recorded changes in her range of motion while she was still in the OR (image included), and since we got home, the two biggest changes we have seen so far have been the fact that she can now wiggle her toes (see video), and she can also sit with her legs straight out in front of her in a V shape, as you can see in the photo above. Both these were practically impossible for her before, and now it takes almost no effort :) It is still too painful for her to be up on her feet at this point, but that is no surprising I suppose. She was excited to try walking almost as soon as she was awake, but she's now feeling a little nervous about it, because every time she's tried to stand up so far, it's hurt. Hopefully tomorrow it will be less sore so that she can try her legs out a bit.

Would you recommend it to someone in a similar situation?

Yes

What do you wish you had known when you were making the decision to try it out?

I know that a lot of people aren't aware of the fact that the legs are casted afterwards. I only knew because I found several blogs from people who had already done it. Avery has half casts on her legs, and she had to wear braces to keep her legs straight for the first 24 hours. She doesn't have to wear the braces during the day anymore, but she does have to wear them at night for at least the next 4 weeks or so, so that she doesn't sleep with her legs curled up.

Please share some of the details of your experiences, past or present. By sharing, we are a support system to each other as we each try to navigate through the special needs world!

I will post again about this in a month or so to let you know how things are going.

For more pictures and information on Avery and her progress, please visit Josephine's blog here.

Joseph and Selective Dorsal Rhizotomy

Joseph is seven years old and has Hydrocephalus and Spastic Diplegic Cerebral Palsy, and he recently travelled to St Louis for a Selective Dorsal Rhizotomy. His Mom, Stella, says that they decided to go ahead with the surgery because she knew it would be life changing, and even though they are only a few days post-op, there are already noticeable changes in Joseph's physical abilities. Here is what Stella has to say:

Please share some of the changes (good and bad) you saw in your child:

We are only a few days post op, but if I had to do it all over again I would. Muscles are no longer tight, stretching is pain free and easy. Before surgery, stretching was limiting and painful. He is starting to make movements that he could not do before surgery. The road is not easy but worth it.

Would you recommend it to someone in a similar situation?

most definitely

What do you wish you had known when you were making the decision to try it out?

It was everything that I expected and more

Please share some of the details of your experiences, past or present.

We have tried botox, baclofen, going to other doctors and more doctors for another opinion and finally resulted in SDR. They believe Joseph will walk independently. But it requires work on our part and his making sure he is stretched but to see him walk for the first time it will be worth it all.

Stella, we hope that you will update us on Joseph's progress! 

Avery and Hippotherapy

Avery was born with hydrocephalus due to Dandy Walker Variant, and was later diagnosed with Spastic Diplegic Cerebral Palsy. Her Mom, Josephine, started taking her to hippotherapy when she was about 2 yrs old, at the recommendation of Avery's physical therapist, and she went once a week for about 6-10 week session during the spring and fall for a couple of years. 

Here is what Josephine has to say about their experiences:

Why did you decide to try hippotherapy?

It seemed like it was worth a shot.

Describe a typical session:

She was given various tasks while sitting on the horse - letting go with one hand, reaching for balls/bubbles/rings, standing up in the stirrups and trying to hold her arms out straight. Sometimes they would have her turn around in the saddle so she was sitting backwards, and sometimes she would kneel on all fours on the saddle while the horse walked around the ring. All sorts of activities to encourage better balance and develop core strength and stability. Our therapist also started and ended each session with a test of Avery's balance/stepping skills, recording how long she could stand unaided, and (later on) how many independent steps she could take.

Please share some of the changes (good and bad) you saw in your child:

By the end of the last session we did (when she was 3), Avery was able to take up to 9 independent steps and balance unaided for up to 8 minutes. Also, just sitting on the horse was a superb stretch for her adductors - she was able to separate her legs much further.

Would you recommend it to someone in a similar situation?

Yes

What do you wish you had known when you were making the decision to try it out?

I don't know, but I wish we could do it again. Since we got released from our traditional PT (because we started doing ABM), we can't get it covered by our insurance anymore.

Please share some of the details of your experiences, past or present. By sharing, we are a support system to each other as we each try to navigate through the special needs world!

Avery loved hippotherapy, it was excellent exercise which felt like playing! She achieves so much more when it is fun. She loved the horses, and the therapists and volunteers were always wonderful. I would really like to be able to do it again.

Please visit Josephine's blog to learn more about Avery's progress.

Lucy and Anat Baniel Method

Lucy has Spastic Diplegia CP, and her Mom, "Dangerdays", would like to share their experience with the Anat Baniel Method. She discovered ABM while she was researching options on the internet. She felt that regular PT just wasn't enough anymore. Lucy had been doing weekly PT for over two years, and her Mom just didn't feel that it was helping enough, so she decided to try ABM because she thought it would give Lucy the chance of walking. Lucy was 3yrs 9mo old when she first started.

Here is what Dangerdays has to say about ABM:

Describe a typical session:

The session is very relaxed from start to finish.  My daughter  played with toys and have a snack while the lady who worked with my daughter started doing simple movements with her. Showing my daughter a comfortable way of sitting instead of the W sitting. My daughter was so relaxed that she actually feel asleep during a session. The session goes on for about 55mins to an hour. And all the while the my daughter is very happy and content and playing away. She showed my daughter how to find her feet when slding down from the table she was working with her on..she was helping my daughters arms and shoulders be more relaxed. Overall, after doing 2 years of physio that my daughter didn't like at all, the Anat baniel method was very refreshing, and gentle.

Please share some of the changes (good and bad) you saw in your child:

We stayed for a week and did 2 sessions a day for 5 days. After 2 sessions we were back at the hotel, and my daughters feet and legs (that are usually stiff) were like jelly, she was saying that she could really feel her legs. and she was really enjoying this new feeling. As well as that. when she was sitting on her bed that night. her back was SOOOO straight we couldn't believe it. She was sitting so straight it was hard to take it. Then the next day after the morning session, we went to a toy shop to look around and she cannot walk so she was standing holding onto the shelves, and usually her heels are not touching the ground when she stands up like that. And her heels are flat on the floor with ease. and with every step her whole 2 feet were firmly on the floor and it was amazing. Anyway. we did a lot more sessions and months went by and to be honest that's all the results we can. And after months of her sitting on her new way. she returned to sitting in the W position. Which is sad. But the lady we worked with said we should try and go to america to see Anat Baniel herself, But we just simply cant afford this. We are not doing the Anat Baniel anymore. But we have started a new therapy called Health In Motion. You can find out about it at the Health In Motion website toronto. 

Would you recommend ABM to someone in a similar situation?

I would recommend it to someone who has the money to do it ALOT..because with alot of it and very often you will see results.

What do you wish you had known when you were making the decision to try it out?

I wish I could have known about Anat Baniel Method when my daughter was only a few months old. because the younger the child is, the more the brain is able to make new connections.

Please share some more of the details of your experiences.

I think that all us parents can do is try everything that is natural and that wont harm out children. I was offered Botox for my daughters thigh heels and within 2 sessions of ABM, her heels were down. So, that just showed that natural methods are definitely a better option. I stopped my daughter using her walker and her AFO's like the ABM practitioner recommend, as Anat does not believe that walker and AFO's helps a child. And she

does not believe in stretching a spastic muscle. So, My daughter does not do physio anymore. She does not do ABM either, she crawls around on the floor and walks along things. She can go to the toilet all by herself and wash her hands afterwards. She even took 12 steps the other day. No AFOs just trainers on her

feet and she did it..not saying it was perfect. But she did it. I think we should try not to rely on walkers and wheelchair and let our special kiddies try and do as much for themselves as we can. At 1 year old my daughter couldn't even sit by unaided. And now at 4years old she took her 1st steps. Do what you feel is right for you child.

Right now we are doing exercises from Health In Motion and she enjoys doing them. I hope that someday she will walk. but if she doesn't, I will be happy with what she can do... Not what she can't.

Overall, Dangerdays gives ABM 4 out of 5 stars.

Oscar and Conductive Education

Oscar is a handsome 4yr old with spastic diplegia and cerebellum disorder. After being referred by medical stass, his Mom, Merryn, got Oscar into a Conductive Education program when he was 17 months old. She says it was the only available intensive therapy, but they have been so happy with it that he has been going ever since!

Questions Merryn answered about their experiences with Conductive Education:

Describe a typical session.

2.5 hours a day with intensive work on getting the child to sitting, crawling, walking. Mix of on plinth (table) work, sitting tasks on a box, walking with a ladder and/or parallell bars. Intensive mix of gross and fine motor skills work.

Please share some of the changes you saw in Oscar.

Oscar started out sitting, rolling and pivoting. After six months (2 years of age) he was crawling and walking with a trolley. At 3 years 3 months he took 28 unaided steps in his support boots - my proudest day. He is going from strength to strength and is now 4 years 3 months and I can walk unaided short distances or with a hand for longer.

What do you wish you had known when you were making the decision to try it out?

That someone had told us at 10 months when we were diagnosed with either CP or a stroke as the sooner we started the better we would be now. It is hard work but rewarding work as the intensiveness works.

Please share some of the details of your experiences.

This is the best thing that we could ever have done for Oscar. The Conductor's are experts in our CP kids and it is amazing what they know and what they can get the kids to do. There are medical professionals who say that this is no better than intensive physio and OT but here in New Zealand we do not qualify for that beyond 1 hour a fortnight. I would recommend that anyone with a CP kid gives this a try.

When asked whether she would recommend CE to other parents, Merryn responded with a  "Definitely!! It is the best thing we could ever do!" She gives it 5 out of 5 stars :)

Leave questions and comments on this post, or email Merryn for more information :)