ABR Summer Satelite

We just did our 6th training session of ABR therapy, a trainer comes to a California Satellite from Montreal Canada,  ABR Center, to train parents on how to do ABR therapy on their brain injured children. We started ABR when Annabelle was 15 months old, every session we get new exercises to do on Annabelle. ABR stands for Advanced Bio-mechanical rehabilitation, ABR is a hands on, time intensive, non- invasive, passive therapy that builds and strengthens the musculoskeletal structure, smooth muscles and fascia, which is the connective tissue that surrounds muscles and permeates the whole body.

ABR's objective is to halt and even reverse musculoskeletal distortions which hinder motor functions in the brain injured child. ABR is the only approach that does not focus on "managing" the child's limitations or take into consideration the brain injury. The sole  aim is to "reverse" poor mechanical integration in order to permit spontaneous development of movement. As long as there is incorrect structure there will be an absence of or incorrect movement.
Upon brain injury, tone of the smooth muscle and fascia decreases. Collapse of this internal volume leads to collapse and distortions of the surrounding layers (bony skeleton and the skeletal muscles attached to it)

Jaw Skull division Manual exercise

Ball Rolling Exercise

Machine set up for "shoulder and hips" exercise

I first learned about ABR when I was browsing for books about CP on Amazon and I read a negative review about a book  Sheri Walker said this "This was the first book I bought when my grandson was diagnosed with spastic diplegia. I found no hope in it and continued looking until I found Advanced Bio-mechanical Rehabilition. Their web-site is www.blyum.com. We have been doing ABR for six months and the changes are miraculous. Finally something to actually help our kids physically instead of teaching them to deal with less and less movement as they age" This review really sparked my interest "Thank you so much Sheri Walker" this lead me to go to Leonid Blyum's website, he is the "brain" behind ABR.

Then I was talking to a friend who also has a child with CP and she had also come across this therapy and she told me about Bird on the street's Blog and how Katy was doing ABR therapy on Charlie and she had documented everything. Well I couldn't stop reading, I fell in love with Katy and Charlie and all they do, and I am still addicted to her blog. 

We have 3 different types of exercises we do on Annabelle the first we learned in Montreal Spring '09 was the manual exercises, secondly in Summer '09 we got the machine, the bladders are placed on Annabelle with wraps and the machine applies pressure.  Thirdly in Winter '10 we were taught the newest technique ball rolling. I aim to do 3 hours of manual, 1 hour of ball rolling and then 10-12 hours of machine a day/night.

With the use of tools slow, light pressure is applied to various parts of the body, the muscles that are exposed to this constant external mechanical stimulus will remodel itself in response to this stimulus it will lay down more fibers so that this area becomes stronger. 


We have seen so many changes in Annabelle because of ABR but that is material for another post.

New machine set up "occipital"

Manual ABR "Top of shoulder"

Vitalstim update and a Great recipe

It has been 2 months since we stopped Vitalstim therapy, to catch up with the story check out my previous 2 posts here and here.
Annabelle is still eating well and has put on a pound in the last 2 months which is really good seeing that she pretty much stayed the same weight from Feb- June
If you are stuck for ideas for something to cook tonight, here is a great recipe for Turkey meat loaf! Because Annabelle has allergies to the following foods gluten(wheat, rye and barley) corn, dairy( milk and cheese) soy, tomatoes and eggs it is always a challenge to find recipes that taste good and accomadate all her allergies. This particular recipe was given to us by one of the vital stim therapists at CHOC, and has become one of our families favourites, try it! It might surprise you how good it is! We usually double up the recipe and freeze one to use later.

Turkey Meat Loaf

1 medium onion, quartered
2 carrots, each cut in 2 or 3 pieces
1 handful spinach, washed
1 1/2 pounds ground turkey ( if you are English that's minced turkey)
1 cup cooked quinoa ( pronounced keen-wah)
2 tablespoons dried thyme
2 tablespoons chopped fresh parsley
1/2 teaspoon ground sage
1/2 teaspoon sea salt
4 tablespoons organic ketchup (we leave this out but you can leave it in if you want)

1. Preheat oven to 375 degrees combine onion, carrots and celery in a food processor and pulse until roughly chopped (do not purée) transfer to a large bowl.
2. Place spinach in food processor and pulse until finely chopped. Add to onion mixture. Add remaining ingredients to bowl and mixed with fingers (here's where you can get your child/ren to help with the squishy part combining all the ingredients with their hands). Form into a large loaf and transfer to a 9x5-inch loaf pan. Brush with additional ketchup. Bake for about 1 hour, cool 5 minute before slicing. Serve with roasted sweet potato batons.

The Feldenkrais method

Have you ever read a book that completely changed your direction in life, well I did, a book that I got from the library (don't you love libraries) called Uncommon voyage by Laura Shapiro Kramer. It is about Laura and her son Seth who has cerebral palsy and their journey through various alternative therapies after the traditional therapists had not given him much hope of walking, talking etc. The reason I read this book all started because even though we didn't have a formal diagnosis all the therapists Annabelle was seeing all said she moved like a child with cerebral palsy so I wanted to find out as much about it as possible and stumbled across this book, I am so glad I did.

After reading this book it inspired me to find alternative therapies for Annabelle, one of the therapies was The Feldenkrais method. It was instrumental in helping Seth walk, he did intensive sessions with Anat Baniel every week.

With a typical child they are what is called "incidental learners," they learn how to do things through small incidental movements, they don't just learn how to sit it is a progression of small movements that take place over time and eventually they are sitting. But with an injured child these small incidental movements just don't happen by themselves so the map in their brain doesn't exist to get to those positions.  Comparing traditional therapy to Feldenkrais is like these 2 analogies, as Marcela so adequately describes in her post on ABM going for for a drive in a car if you are the passenger in a car and somebody drives you from A to B you are less likely to remember how to get there - this is like traditional therapy, a therapist takes the child and puts the child in a seated position the child never learns how to get there himself. But if you are the driver and you drove from A to B after a couple of times going the same directions you will have no problems finding your way - this is like Feldenkrais it maps the routes in the brain to find the right paths to movement. This is why I love Feldenkrais Method for my child.

This lesson was with Elinor at the beginning of the year

I was looking for a practitioner close to home (Annabelle was never good at long car journeys) that is when I found Elinor, in March '09 and within 5 weeks of seeing Elinor once a week Annabelle was commando crawling short distances (the move looked like she was swimming as her arms would get trapped at the side of her body and she would roll to free them). Now after more than a year of seeing Elinor, Annabelle is still learning new ways to move.

A Lesson with Elinor July '10

Trying new things they might surprise you -VitalStim Update

It has been a month since we stopped doing VitalStim therapy and when the therapists told me that they thought we should take a break for 3 months my heart did stop for a while. I didn't think Annabelle was ready to stop the therapy especially not for 3 months. It's like somebody telling you to stop putting diapers on your child and you know your child is not potty trained, you will just end up with a big old mess, or will you? Will your child surprise you?

Well having a special needs child with developmental delays you become overly cautious about expecting your child to surprise you, as you have had months of wishing, wanting, praying they will surprise you (especially around Christmas and birthdays "wouldn't it be a great present if she just .... ?). This leads you to not trying new things and getting stuck in a rut of what you know they can do. This can be detrimental to your child's progress.

I have been in this situation all to often with Annabelle, scared to try new things because it might upset the status quo, but I am learning that sometimes you don't know until you try. The therapists seemed to be convinced that Annabelle was ready to stop therapy, but all I had in my mind was how she was like before we began therapy choking, coughing, gagging then refusing to eat. Well may be this time round Annabelle will surprise me.

Annabelle is still eating, swallowing and even drinking. We have less than 2 months to go till the swallow study we will keep you posted.

Annabelle decided to surprise us by sitting at the beach

Dive 35 - HBOT update

I was going to do a post about The Feldenkrais Method but still need to upload some video and so I thought I would do this post first.
Well here we are, in the HBOT chamber doing our 35th dive, time has gone fast and I really don't want them to end because we have seen a few good changes, here are a few we have noticed since we started 7 weeks ago.
I will try list the gains in the order we noticed them,

• Hands softened and opened more (mostly tight fist most of the time before)
• Lateralization of the tongue, moving tongue to side of mouth
• New found interest in toys
• Which leads her to crawl around the house more to find more toys
• More interest in trying to open cupboards
• Crawled up a step that was a foot high
• Getting onto knees and climb into toy box with both arms
  
• Cognitively - more interest at school
• Making more sounds "v" 'b" "d" "g"
• Ability to make choices better
• Able to hold objects better, release better
• Able to get hand to her mouth and chew on fingers
• Pincer grip emerging (using thumb and pointer finger to pick things up)
  
• Sitting more stable and arms supporting more

All these might not seem like huge gains or milestones to anybody that reads them but to Annabelle these are major breakthroughs.

So Martin and I have decided that HBOT has been such a positive therapy for Annabelle that we are going to continue and do another 40 more sessions Yippee! I am so happy.

VitalStim - the importance of being able to swallow!

Ever since Annabelle was about 2 weeks old I had trouble feeding her. Because I think breast milk is the best thing for a baby I persevered even though she arched back, lost her latch on, coughed choked, burped, cried, refused to feed, bit me, had to give up loads of foods because of all her allergies I never gave up! I eventually figured out that she was a child that needed little and often feeds and that lying on the bed and I would cradle her she wouldn't arch so much and I could keep her latched on long enough to get enough and she wouldn't cough and choke as much either.
When she turned 6 months I started trying her on solids it was a bit of a disaster to say the least her tongue thrust was so strong it just pushed any puree out as soon as I got it in, the food that did go in she coughed and choked on, we weren't getting any therapies yet and I didn't know what to do but thought maybe she wasn't ready for solids so put it on hold.
We started a group program when she was 7 months old and only received OT when she was 12 months old, I got a few tips on feeding from the OT's at the group program and heard about something called a swallow study, I asked our pediatrician about this and he said that the OT needs to do an evaluation, eventually got the OT at CCS to do an evaluation. They weren't sure if Annabelle was aspirating but I convinced them to recommend we do a swallow study ( this is where they x-Ray the child while feeding and they can see how and where is goes down). Annabelle was 15 months when we did the first swallow study it was found she was aspirating ( when she swallowed the airway would not close properly and liquid/food would go into her lungs) and she wouldn't always cough when this happened this is called silent aspirating, and aspirating on thin, thick liquids and purees.When this happens you are at high risk of getting chest infections, pneumonia because there are objects in the lungs that shouldn't be there. Luckily Annabelle never had chest infections because she was mostly breast fed. But she did alway have a runny nose this was because when she swallowed she would also reflux up into her nose.
Well the recommendations from the swallow study was that we see a GI, we had already taken Annabelle to see a GI when Annabelle was 6 months old, she had said that all of Annabelle's problems were neurological and that she couldn't help us (but proceeded to charge us for
the appointment anyway) Well we thought we would get a second opinion this time this GI suggested that Annabelle should get a g-tube ( this is a surgery where the a tube is fitted directly to the stomach and a button is placed on the belly and food can be syringed directly into the stomach) Well I am not big on any kind of surgery especially not on my 15 month old child.

I had heard about this therapy called E stim / VitalStim and I asked the GI if would could try this out before we went ahead with anything as invasive as surgery, we got referred over to CHOC Rehab for an evaluation. They said Annabelle would be a good candidate for trying VitalStim, we started VitalStim a year ago.
What is VitalStim? Electrical stimulation therapy is a specialized form of neuro-muscular electrical stimulation designed to treat dysphagia (difficulty swallowing). It is a non-invasive therapy that uses a small electrical current delivered by specially designed electrodes, which are placed on the face and or neck. The current stimulates the motor nerves and the muscles responsible for swallowing. This stimulation facilitates strength, coordination, endurance and increases sensory feedback and timing in the muscles involved in feeding and swallowing. While the electrical stimulation is being administered, a certified therapist helps patients train their muscles with special exercises. With repeated therapy, muscles are trained the movements required for swallow. The main goal of electrical stimulation therapy is to strengthen weak muscles and to help in the recovery of motor control.

We went twice a week for a year we had two great therapists, after 6 months we did another swallow study and Annabelle wasn't aspirating on anything during the study.
We continued with therapy for 6 more months and the therapist and I decided that we should take a break for three months and then do another swallow study to see if there is carry over of the therapy or if Annabelle regresses. There is always a chance that the muscles will atrophy if they are not used. So the best way to prevent this is keep Annabelle eating. I will keep you posted.

5,4,3,2,1, blastoff!!

We have been going for rides in a rocket recently.

Yes Annabelle and I have been doing Hyperbaric Oxygen Therapy everyday for the past 3 weeks. Here is a picture of us getting into the chamber, I just sit inside with her and change DVDs when they are finished and act as a chair for her. Things seem to be going well she doesn't seem to mind going in and tolerates the pressure. We go into the chamber that is pressurized and Annabelle wears a treatment hood and pure oxygen is piped directly to her to breathe. We stay in the chamber for about 90min.

A quick explanation what Hyperbaric Oxygen Therapy (HBOT) is - a prescription- only medical treatment in which the patient breathes pure oxygen under greater than normal atmospheric pressure. The patient's blood-oxygen level is then raised many times above normal, helping control infections and promote healing of many illnesses/injuries.Pressure is built inside the chamber and therefore allows the oxygen inhaled to be dissolved at great levels in the blood, spinal and lymph fluids, as well as all other tissues.

HBOT has been a treatment that has been around a while and illnesses such as MS, Stoke, Cerebral palsy, head injury, Autism, are well known to be helped by HBOT.