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.

Tristan

Tristan has Spastic Quadriplegia CP, along with various other diagnoses. Tristan has been working with traditional physical, occupational, and speech therapists. He has also had botox, as well as hip dysplasia and ear tubes. His Mom, Tammie, has been happy with this course of treatment and would recommend it to others. Her advice:

I think you need a doctor that will sit down and have an open conversation with you. Freely ask questions, do your own google search (but keep in mind it's not all good info) try it out.

You can read more about Tristan here.