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! 

Megan and SDR

Megan is a beautiful little girl with Cerebral Palsy. Her Mom, Stephanie, first heard about Selective Dorsal Rhizotomy (SDR) on TV, and just knew it would be a great thing for Megan. Megan was 9 years old when she got travelled to St Louis from the UK and got the surgery, and Stephanie says she only wishes that she'd known about it sooner! The following video shows the awesome progress Megan was able to achieve in the six months after undergoing SDR. (Please watch it, it's amazing!)

Megan is now 9 months post-op, and here is another video showing how much further she has come:

Well done Megan! You have come so far, and it is wonderful to watch.

Please visit Megan's website for more information.

NB: It should be noted that the the SDR performed by Dr Park in St Louis differs from traditional rhizotomies offered by other facilities, and if this is a surgery you are looking into, make sure you research the differences.

Adam and ABR

Adam was diagnosed with Spastic Quadriplegia and Anoxic Encephalopathy after he almost drowned when he was 12. Now 25, Adam has been doing Advanced Biomechanical Rehabilitation (ABR) since he was 16. Please read what Adam's Dad, Phil, has to say about their chosen course of treatment, and why they chose it:

How did you hear about ABR?

HBOT Parent Group

Why did you decide to try it?

Our belief that surgical or drug interventions to mitigate severe spasticity would be inappropriate and we desired a non-invasive but scientifically based therapy

How old was Adam when he started this treatment?

16 years old

Describe a typical session:

Kids are initially evaluated yearly and attend four training sessions which last about 4-5 days each. Parents must make a commitment to implement this therapy for at least 3 hours daily.

ABR believe that in cases of brain injury, ie, cp, anoxia, etc. there is a systemic collapse of the myofascial layers of the body. This collapse leads to a lack of mobility, spasticity, scoliosis and a host of structural distortions which prevent mobility.

ABR Exercises are targeted to specific areas of the body and parts use a variety of transfer media to rebuild the myofascial structures which support the bone, etc.

The parents rebuild over years the collapse of the body and with a more normalized structure you have greater mobility and then function.

The developer's site is www.blyum.com. It is heavily researched from a scientific basis and there are evaluation and training centers throughout the world. ABR does not support surgery, standers, mechanical devices to correct the structural deficits caused by spasticity and collapse. Traditional PT is also contra-indicated.

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

Great reduction in spasticity, more mobility, increased body stability and had control, correction of scoliosis, prevention of need for any surgery especially hip subluxation.

Would you recommend it to someone in a similar situation?

Absolutely

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

Only wish that we knew of the programs much earlier in my son's rehabilitation and that we knew of the negative effects of traditional PT/OT approaches to structural changes in the body.

Please share some more details of your experiences.

There is a wide international support group of ABR parents and we have been involved since 2002.

Phil and his wife keep a hugely informative blog here, which I highly recommend you visit!!

Oliver and Hyperbaric Oxygen Therapy

Oliver has moderate Spastic Quad Cerebral Palsy, as well as epilepsy and a g-tube. His Mom, Chelsea, decided to try Hyperbaric Oxygen Therapy (HBOT) with Oliver after hearing about it online and from other parents. She says that one of the motivating factors to actually give it a try was that the cost was lower than a lot of the other treatments they were researching :) Oliver received HBOT at 15 months, and then again at 22 months. Here's what Chelsea has to say about it:


Describe a typical session:
40 "dives" in a hard chamber lasting approx 1 hour for the actual oxygen part where they wear a hood delivering oxygen. 2 dives a day 6 days a week with a required number of hours in between each dive. Group chamber with one adult per patient. Dives include the time it takes to get to pressure, a specified "depth" equivalent then oxygen treatment starts and then decompression or the slow release of pressure (to mimic that of divers) and then exit the chamber.
Please share some of the changes (good and bad) you saw in your child:
I was looking into SPD treatments (sensory processing disorder) with our OT as he couldn't handle having his hair, hands, body touched and was insanely sensitive to lights, noise, people, etc. There were immediate and dramatic improvements after each session (of 40 dives). After the 2nd session I had my first cuddle in my lap while I pet his head time that we'd ever had. He used to scream/cry/wail pretty much all day long- most CP kids are "fussy". It improved greatly after the 1st session and then he got grumpier leading up to the second session and then it was quite nearly gone after the 2nd (and soon after developed a means of communication to further alleviate the fussiness associated with nonverbal toddlers). The crossing of his eyes decreased (ophthalmologist decreased his eye glass prescription), his high tone/spasticity decreased. His abilities with his mouth specifically increased sucking, desire to suck and chew and eat improved. He voluntarily and functionally was able to bring one hand to his mouth to suck on a finger or part of his hand for the first time (at 22 months of age). His mood and demeanor improved to less fussy overall. Different things happened with his hips and rolling onto his side, as if there was more flexibility there possibly due to decreased spasticity. Bad... one ear got really bad with the redness and he hated his ears being checked. He was fussy in the chamber unless elmo was on.
Would you recommend it to someone in a similar situation?
Definitely
What information/advice would you give to parents making the decision to try it out?
I was glad that I knew about the options for pressure (1.5 vs 2.0) and that I had used a hyperbaric pediatrician to check him before dives and write the prescription. I was glad that we used a hard and not soft chamber and that we did the whole 40 dives and did more than 1 session. (sorry, not what you asked)
Please share some more details!
I used Dr. Rose in Charlotte, NC and the Miracle Mountain Hyperbaric center in the western Mtns. of NC. We rented someone's trailer to make the stay with my 2 kids and helpers (friends/family) to make it work. We stayed for 3 weeks and it was tough but doable and worth it. I'm glad we fit it in early as it had a profound affect on his mood and abilities that changed so fast it can't be called a coincidence. Oddly enough I didn't "buy into" hbot. I thought it was somewhat of an under-researched scam. We could afford it though- sort of- and couldn't afford to not be doing anything. I was so impressed with the results that we did it a second time and I"m so glad we did. We can't do it again because of his diagnosis with epilepsy. With his lack of oxygen at birth he was prone to getting epilepsy. This is a totally different thing than oxygen-caused injury (including seizures). It scared me at first too but only preemies on 100% oxygen right at birth tend to get these injuries. The risk to the average person is incredibly low especially when HBOT is done properly as it is at MM. They use certified technicians and have emergency protocol and we used that hyperbaric pediatrician. Anyway I would consider doing it again if we could.


For more information, please leave a comment on this post, and check out Chelsea's website.

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 :)