The Alternative View

I’m well-aware that some of you visit my blog because of your interest in alternatives. We are actively engaged in the alternative therapy ABR and people are naturally curious about that therapy and what is involved with it.

Well, I e-mailed ABR with questions about botox and back braces and I thought I’d share their answers with you guys. I’m going to summarize, though, because they have some fairly long explanations.

Firstly, I’d like to say that there is a lot of misinformation about ABR. ABR does not discourage parents from pursuing additional therapy if they would like and encourages us to have an open dialogue with our doctors about ABR. From my experience, Charlie’s doctors consider ABR a non-entity. They’ve never heard of it, don’t ask many questions, and seem satisfied once they hear that it is non-invasive. I dare say most of them immediately file it in what my father calls “the circular file.” That’s fine by me. I consider doctors resources and not all-knowing beings, so I don’t need them to keep abreast of every detail in Charlie’s life. That’s my job.

On the question of Botox, I received a two part answer. The first part of the answer was, “no, Botox is in no way counter-productive to ABR.” Good. I’d hate to be working against myself. The other part of the answer told me to be mindful that Botox is not FDA approved for children (no surprise there) and that at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine, they were cautioned that little is known about the long-term effects of Botox. She also advised me that Botox is not really a long-term solution, which I knew.

Her comments on the scoliosis thing were really interesting. Basically, she said that something like a back brace is designed to reduce further spinal damage and compression. It does not, however, make a person any stronger. ABR seeks to make a person stronger and also to create space between the vertebrae. So, we could get the back brace if we want–our decision. She then sent me pictures of Charlie’s spine. The first set of pictures were taken during our initial visit to Montreal in October of 08. The second set in November of 09–roughly a year apart.


In this first picture you can see that Charlie’s spine doesn’t bend when he’s tilted to the side. This is abnormal. A normal spine is quite bendy. Having a fused, locked spine can really impede your ability to get things done.

In this picture you can see that Charlie’s spine is beginning to have some bend to it. It’s not perfect, but being able to balance in the sitting position has become a lot easier and this is part of the reason.

There are several other structural changes to Charlie’s body that I can see in these pictures, but I’ll save all that for when they send me our annual review. For now, I know that if I go with the back brace or the Botox then at least I won’t be working against myself. One less thing to worry about.

Nitty Gritty ABR Information

Ok, here are all the wild and crazy ABR details. The longer we are involved with ABR, the more information, techniques, etc we learn, so I came home from this trip with a head completely stuffed with information.

This next three months will definitely be the era of the head. We have a l-ot of work to do on Charlie’s head.

There are plenty of people who wouldn’t be real thrilled to come home with a passel of head exercises. Actually, I probably would have been one of them six months ago. But I’ve had more time to think about it, and I’m starting to see the value of them. ABR says that if your head isn’t right, then there’s no way your neck and shoulders will ever be right. By extension, you’ll always be working with poor alignment and posture, which effects every aspect of movement. In a more literal sense, it’s easy for me to see that your brain is kept in your head and if your head bones are messed up then it might compromise growth in development in one of your most vital organs.

So we’re working on Charlie’s flat head. I’ve got multiple exercises targeting the very flat back of the head he’s got. In case you’re wondering, a normal head has a very noticeable curve along the back. If you look past Charlie’s curls, you can see that his head just shoots up straight from his neck. You’ll see this a lot in CP kids. Please don’t fall victim if your neurologist tells you that this is because their brains aren’t developing properly. I’m calling the chicken or the egg on that one.

Most of our other exercises address Charlie “shoulder girdle.” Imagine you have tight, stress-filled shoulders–that’s what Charlie’s shoulders are like naturally. We’re working on bringing them down and back ( what your momma called good posture).

In addition to all this, the good folks at ABR are developing a new type of exercise–one that in test-runs has shown great promise. The thing is, it’s weird. It involves a deflated playground ball and I feel totally odd using it. Right now I’m just doing general work with it–getting familiar–so most of those exercises are directed at overall trunk strength. My brother has demanded a demo, so here’ s a quick little video of it:

What did I tell you? Weird lookin‘, huh? Luckily, these ABR people are good in the results department, so I’m not too worried about it.

We recently finished one year with ABR so in the next few weeks we’ll be getting our yearly assessment. I’ll let you know when we get it and we’ll see how much progress Charlie’s made in a year.

Well, We’re Here Again

Well, we’re in Plano again–same hotel, similar room, same families, same food.

A little over a year ago I started this ABR thing. I packed up my child, my mother, my father, I got on a plane (something I hadn’t done in years), and off we all went to Montreal, Canada. I was fairly certain that I had lost my mind.

I was also certain that I had to go, and had to try this therapy. Charlie’s doctors had already told me that we were doing everything we could do and still my little boy could barely move, could barely pick up his head, and could only roll off of his stomach. He definitely couldn’t sit.

All through the ABR training, I would have these flashes where I realized how crazy it all seemed. I mean, they wanted me to push on my kid with towels. Towels don’t feel very scientific.

I was relying on the experience of others. Countless parents had told me that ABR helped their children more than anything else. Jacqui at Terrible Palsy had documented her son’s progress and I hadn’t seen anyone else get those kinds of results.

So I was stepping out on a limb and trying something untested. I knew full-well that it could be a disaster–a waste of time, money, and energy, but felt that it was a risk worth taking.

ABR has been so good for Charlie. Within weeks of starting it, he was rolling onto his stomach and commando-crawling towards things that interested him. His sitting improved, his vision improved, his reflux got better. It was obvious that we’d made a good decision for our family.

The amazing thing about ABR, though, are all the families that don’t have blogs, never post a video on Youtube, or a picture on the support board. These are the kids that blow you away when you see them after three or six months. It’s also really inspiring to talk to the parents who have been doing this therapy for a long time. Today I talked to Julia’ s mom, Carolyn. Julia went into cardiac arrest during a routine hospital procedure at two months of age. After this happened, she was blind, deaf in one ear, and didn’t respond to touch. The doctors told her parents that she would probably spend the rest of her life in a persistent vegetative state. These days she’s in a wheelchair, but she can see and hear, and even talks some. These days she’s about seven and working on self-feedingand reads age appropriately. She reads. Swish that around in your mind for a few minutes. I’ll be honest, if my kid didn’t respond to touch, I wouldn’t know where to start. It’s crazy what is possible if parents are dedicated to their children.

Well, I’m exhausted. This trip has kicked my butt and I still have some more training tomorrow morning. I want to talk all about our Phenobarb wean and what body parts we’re working on next, but I’m calling it a night.
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