McKies, AFOs, and Theratogs, oh my! Our First Orthoses – Age 0-4

I think orthoses, of varied types, are a pretty typical experience in the world of cerebral palsy.  They are important, if not critical, at maintaining proper alignment as the child’s body grows.

Hand Splints / Arm Braces

When E was a baby we had a McKie thumb splint.  This worked really quite well to keep her thumb out of her palm, but when she got older… maybe around 9 months?  She started taking it off.  For a long time it was impossible to keep it on her so we just gave up….  There wasn’t really anything else recommended for us to try.

When we went for CIMT in Alabama at 3 yrs old, the OT there was quite shocked when we said we didn’t have any orthotics.  She started E on a right wrist night stretch splint – I hope I am saying this right – E’s wrist is often flexed downwards during the day, particularly during movements.  This results in the tendons on top of her arm being overstretched – like an elastic band that is pulled taut for a long period of time.  The tendons on the bottom are always shortened, making them shorten too.  The night stretch brace is supposed to allow the overstretched tendons time to recover somewhat, as well as to stretch the shortened bottom ones.

Image

She also started E back on a McKie thumb splint during the day, which she now keeps on… a lot of the time.  All her OTs have seemed to prefer the McKie over the Benik (which we have never tried) as it allows more sensory experience on the palm of the hand.  We do really like the McKie and it can be ordered for around $25 online (http://www.mckiesplints.com/features.htm).

I also ordered a Bamboo Brace, after reading very positive things about it on the HemiKids group.  It works wonderfully for keeping her elbow straight so she can keep her hand on her balance bike.  I also use it when she eats to try to overcome her habit of bending her right elbow and holding her hand up as she eats.  Also a pretty cheap investment around $50 online. (http://www.amazon.com/The-Bamboo-Brace-Infant-Toddler/dp/B0051747D8)

Ankle Foot Orthoses

When E first started spending time standing, we got a typical 90 degree fixed full footplate AFO for her right leg.  We used it a bit, but at this time (22 mo – 28 mo) she didn’t do a ton of walking.

Image

When she outgrew that one she had a similar one made, typical 90 degree full footplate AFO, but this one was hinged.  We actually only used it for about a month, because at that time we started ABM (Anat Baniel Method), and her gait improved to being just as good without the AFO as with.  (Neither way was it typical, but both had different compensations).  I also was nervous as I had read that AFOs could contribute to muscle wasting in the affected leg and also worsen leg length discrepancy (which hers was about 1 cm).  The full footplate discourages toe balancing, as well as sensory input to the foot is decreased (particularly the affected side versus the untreated nonaffected side).  I know from talking to other parents that the unaffected limb/foot often overcompensates and can develop issues too, so we would like custom orthotics for both her lower legs/feet.

IMG_2477

In summer 2012, after no orthotics for almost 4 months, we went to a Podiatrist who recommended some off the shelf shoe orthotics (kiddythotics – not NEARLY supportive enough for the issues E has!!!).  We used these for 6 months, then switched to “Chipmunk” shoe orthotics made by Cascade, which were much more supportive.  (http://www.dafo.com/products/chipmunk/)  These are really great for mild pronation, and I think we would use them again after transitioning out of AFOs.

IMG_2475

E has pronation of both her ankles/feet, and her toes claw outwards (more so on the right, affected, side).

Through our ABM contacts we found out about a Dr. Paul Jordan in New York, whose expertise is in Pediatric Orthopedics.  He is an amazing man.  His website is here, and I encourage anyone with a child with gait or lower limb abnormalities to check him out:

http://podopediatrics.net/

Just how do I know he is amazing?  Well, we phoned his office as we are planning to go get E’s next orthotics from him.  (As above, the ones she has available to her here in Canada are… disappointing.)  They encouraged us to send in photos and video footage of E’s gait and range of motion.  We did so.  Dr. Jordan then sent me an email with his analysis, and then PHONED ME and talked to me about E’s case as well as his own experience for TWO HOURS.  FREE.

It turns out that Dr. Jordan was unsure if E’s range of motion was good enough for just orthotics.  He told me that he is pretty sure E has a right hamstring contracture as well as right gastrocnemius (calf) contracture.  This means that those muscles have kind of “seized up” a little bit and can’t pass through a full range of normal motion.  Why has no one in Canada mentioned this to us?!?!  I did the PT range of motion tests (found them on youtube) and… yes she does.

Dr. Jordan often works in conjuction with a Dr. Nuzzo in New Jersey, who does SPML surgery (selective percutaneous myofascial lengthening – this is the surgery to get if there is any tightness in the leg!!!  WAY faster recovery, way less scarring!).  I told him that we *really* wanted to avoid surgery, so he suggested serial casting of both lower legs (BOTH, to keep the sensory input the same instead of just having her limp on her right leg the whole time).  He supported us trying to pursue this in Canada, as it is done over a 4 week period (I can only imagine how much 4-6 weeks in New York would cost us!).

We have been trying to find someone to do the serial casting for us, and are on several waiting lists for the past 2 months (I know the waiting list in one place is over a year, but we are hoping this other waiting list with an orthopedic specialist is only 3 months – Ohhhhh Canada!!!).  In the meantime we are doing stretching and gross motor activities.  And I requested our PT to do range of motion testing, which she did… (but I am so surprised that this is something I had to ask specifically for?!)

Body Orthotics

The other thing we have been pursuing is body orthotics, officially “dynamic elastomeric fabric orthoses”, or “wearable therapy”.  Our orthotist mentioned that she had recently been trained to measure and fit a Dynamic Movement Orthosis.  It is a lycra garment that is kind of like a whole body control-top pantyhose…  They custom design it to help limit incorrect movements (such as a hip rotating inwards or outwards) and encourage movement in a “normal” way.

dmo-suit-1

http://www.dmorthotics.com/products/dmo/

I watched the video footage of a young girl’s posture immediately improving, as well as her gait, and thought it was worth pursuing.  We booked an appointment.  Then I found out the cost.  Over $2400 for a body suit!!!!!  That was custom made for a toddler who would only fit into it for 9-12 months!!!!  Okay, after the initial sticker shock, I thought for sure much of the cost would be covered under the Aids to Daily Living program, like AFOs are.  Uh, nope.  We appealed.  Denied.

After searching around for 6 months I am pleased to say that we have found some funding assistance and have finally ordered the suit!!!  Because it is custom made in the UK it will take about 4-6 weeks to arrive.

In the meantime, one of the WONDERFUL mama’s on the HemiKids list (can’t say enough about that great resource and source of support) gifted us a gently used (and partially new!) Theratogs suit kit a few months ago.  This is the off-the-shelf type solution to achieving the same goals as the DMO suit, with a more reasonable price tag (around $800, and can grow with the child for a while).  I spent a lot of time watching the instructional video and reading the manual (!), as each piece and strap has to be applied separately every day.

IMG_3539

Our experience with Theratogs has been positive – it definitely improves posture.  It also helped E’s balance and gave her more gross motor confidence.  It is, however, much warmer than the DMO (not great for summer… a kind of neoprene foam material), the velcro keeps popping undone on us in some spots during pottying, it takes a long time to apply daily, and it relies on me applying it correctly.  Ummm, they also want you to wash it DAILY – separately, water only (detergent voids the warrenty on the special foam stuff).  It has to lay flat to dry, EACH PIECE, uh, I don’t have that much table space and it took more than overnight to dry!

http://www.theratogs.com/

Both of these systems are something that must be done DAILY for about 2-3 YEARS for the benefit to be seen.  Ideally at that point, the corrected movements would carry over when the suit is no longer worn.  So the fact that we see some improvement when it is on gives me encouragement that it has the ability to help in the long term.  I will be very excited to post updates on these!

I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

download

“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)

MNRI – Masgutova Neurosensorimotor Reflex Integration

If ABM is difficult to explain, MNRI is even harder.  From what I understand, there are a few versions of reflex integration floating around but I believe they all somehow relate back to the work of Svetlana Masgutova (could be wrong there).

From the website (http://masgutovamethod.com/about-the-method):

“While, the basic concept of reflexes is generally familiar to most people (e.g., knee jerk reaction, Pavlov’s dogs), the nuances associated with various types of reflexes is often less well understood. Our goal is to help you understand the difference between automatic motor reflexes and learned motor reflexes, the role of simple to more complex automatic motor reflexes in establishing a solid developmental foundation, and how reflexes work to automatically regulate each of our bodies under normal conditions in reaction to normal stress, or traumatic situations. This basic information can help you better understand why primary motor reflex patterns (sometimes referred to as primitive reflexes or infant reflexes), in particular, play such a big roll in maturation, development, and normal life function.

Fundamental to the MNRI Method is the understanding that automatic primary motor reflex patterns do not disappear, they integrate.”

Basically, primitive reflexes often don’t integrate properly into mature motor patterns when there is a neurological issue (such as a perinatal stroke).  The MNRI method tries to address this problem, thereby improving motor skills.

Image

When we were in California for ABM, we also had 5 MNRI lessons.  One of the big differences between ABM and MNRI is that in MNRI, they teach you to do certain movements with your child that you are to do as homework.  The practitioner assesses which reflexes aren’t properly integrated, and then gives you the appropriate reflex integration techniques as part of your home program.

It was all very overwhelming as there are something like 20 billion reflexes (or maybe it only felt like it).  I took copious notes and videos and tried to watch them all when we got home.

I did about 3 of the reflex integration exercises for a few weeks, got overwhelmed, was not at all confident about my technique, and stopped.

It does, however, make a lot of sense to me.  I was very aware that E did retain primitive reflexes discussed in parenting books (like the Moro reflex – spreading arms and hands when startled, then pulling arms in; as well as asymmetric tonic neck reflex – bringing her right arm up and bent when her head is turned to the left) and didn’t develop others properly (like the parachute reflex – throwing both arms in front of her to catch herself if falling forwards).

MNRI is something I hope to look into again in the future.  It is definitely very appealing that much of it can be done at home by the parent.  Apparently it requires more headspace than I currently have though 😉

 

I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

download

“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)

ABM – Anat Baniel Method

We had seen very little progress after 1.5 years of conventional PT/OT every 1-4 weeks for an hour.  E didn’t much like PT/OT and spent a lot of the time complaining when we did go.

She had progressed in gross motor abilities (commando crawling around 11 months and four-point crawling at 13.5 months, was now pulling to stand and taking independent steps now and then), but I think she would have been at the same point regardless of whether or not we had done any therapy.  We had seen some temporary gains from our experiences with modified CIMT, but these didn’t last (as we didn’t yet know to keep doing constraint on a pretty much daily basis). At 2 years old, it also was apparent that E wasn’t going to “outgrow” her right sided weakness/neglect.  I was pretty discouraged.

We basically stopped doing all therapy for a while.

In winter 2012 we tried Myofascial Release Massage Therapy – 4 sessions.  E had never much liked being hugged or touched other than by those very close to her (I think partly sensory and partly personality).  She tolerated the first 3 sessions with toys and distraction but she cried through the entire last session so we quit.

In spring 2012 we found out about the Anat Baniel Method (ABM), from the HemiKids support group (http://www.hemikids.org/).  There was an opportunity to go to a  practitioner near us, giving us a chance to try the method for E.  This was significant, because at the time there were only 3 ABM practitioners in Canada who worked with children – all very far from us.

What is ABM?  Hmmm.  A trained practitioner guides the child gently into new movement possibilities.  The child plays.  For example, say E is playing with a toy and reaching up with her left hand, the practitioner uses the momentum of her movement to guide her further than she would normally go, and when she moves back to correct her position, guides her further than she would normally go this time in the direction where her movement is usually restricted – off to the right a bit.  This is a movement she normally wouldn’t really make, but it doesn’t hurt, so she pauses, notices, and continues playing.  This happens over and over again during a “lesson”.  After a group of lessons, she starts to incorporate some of these new movements into her repertoire, leaning a little more to the right, reaching just a bit higher, farther.  From my understanding, ABM helps to organize motor skills in closer physical areas in the brain, making more efficient pathways.  Kind of like rebooting a computer…..

The method supports the brain’s ability to overcome habits and automatic responses through Nine Essentials.  (see Anat’s website: http://www.anatbanielmethod.com/about-abm/the-nine-essentials)  It is described well in her book, Kids Beyond Limits, which I highly recommend for parents of children with challenges. 

One of my favorite essentials is Variation.  In perinatal stroke, the weaker side often gets “stuck” and performs the same small range of movements, which get grooved in.  Think a wheelbarrow, or cows, always following the same path.  The more you go down the same path, the harder it is to jump out of that pathway.  Same with neurons and habits.  If you can introduce variation in movement, it’s like a little “aha!” to the brain that new movements are possible.  (Incidentally, this doesn’t just work for movement, but also emotions, behaviors, and cognitive skills).

My other favorite is Attention – helping the child to be aware of what they are doing, sensing, thinking and experiencing at any given moment…  Drawing attention to what is going on helps the child make other choices.  I have found this to be amazingly effective behaviorally – “N is playing with a hammer.  It looks fun!  E is walking towards him…” – This often prevents toy stealing/fighting just by drawing attention to what they are doing!

Anat recommends that lessons occur in blocks, called “intensives”.  An intensive involves a set of 8-10 lessons (usually 45 minutes long) over 4-5 days (2 a day), ideally repeated monthly.

Intensive 1  (11 lessons):

IMG_6458

We did our first intensive in March.  It was actually very uncharacteristic for us – we decided that I would take our 9 month old and 2 yr old by myself to a big city, stay at a stranger’s house for a week, and take the kids twice a day to a downtown hotel to meet a strange male for “lessons” in an alternative therapy I had only just found out about (both myself and my husband are both very scientifically inclined), paying huge sums of money in American cash.  It didn’t help that we were currently watching episodes of Dexter.

Well, my husband decided to accompany us for the first day of lessons, thankfully – and the practitioner was EXCELLENT, as were the strangers with whom we stayed, who are now good friends!!!

Here are the changes we noticed during the week of lessons and the several weeks following:

  • improvement in posture
  • balance had definitely improved – I could change her diaper standing up without her grabbing on tightly to me!
  • noticeably started moving more fluidly
  • started spontaneously using her right hand – she actually used Mr. Right Hand to scratch her face and rub her nose!
  • examining her right hand with her left hand a lot
  • right arm started hanging loosely by her side most of the time instead of “winged”
  • gait improved (this regressed a few weeks after the intensive) – right leg didn’t lag behind as much

We were so impressed at all the changes in ONE WEEK that we promptly booked Intensive 2.  I should also mention that although E initially complained to be at each session, within 5 minutes she was having fun and smiling and laughing and allowing close manipulation and contact with basically a stranger – which was highly unusual for her!!!

Intensive 2 (20 lessons):

IMG_9103

I took the kids and Grandma and headed off  for Intensive #2 in April!  Because the travel costs were as much as the therapy itself, we decided to stay for 3 weeks and try one week of lessons – followed by a week off – then another week of lessons.

Again, we noticed AMAZING changes considering this was all in a 3 week time span:

  • climbing onto a high recliner chair and into her stroller by herself (hadn’t done this before)
  • reaching for and grabbing the pull cord on the bus, holding it in between thumb and pointer webspace (new behavior)
  • she started getting wiggly/squirmy – wanting to walk around, lunge over me, be in motion.  This was unusual for her, as she had always been quite sedate and content to sit still in one place for a long time.
  • she started jumping with 2 feet off the ground
  • spontaneously reaching up and putting both hands behind her head, and reaching and holding both feet
  • started trying to climb all kinds of things
  • improved gait again, so much so that gait was just as good without AFO as with so we stopped using her AFO
  • pointing with whole right hand
  • started pushing rt arm through the sleeves of clothes for the first time
  • trying to climb stairs on foot for the first time
  • walked backwards for the first time

Intensive #3 (19 lessons):

IMG_4558

We headed back to California, in September.  The changes thus far had been so amazing that we just had to continue with ABM!  Because it had worked out so well last time, we again planned for one week of lessons – one week off – another week of lessons.

We also planned some MNRI (Masgutova Neurosensorimotor Reflex Integration) lessons, but I will do a separate post about that!

This trip wasn’t so successful.  First of all, E was sick with a kidney/urinary tract infection which was initially misdiagnosed, so she was feeling miserable and we were trying to negotiate through the US medical system.  She got this infection within the first few days we were there (note to moms with little girls, DON’T USE BATH FIZZIES!!!), and then it recurred, so she was basically sick most of the 3 weeks.  Also, we WAY overbooked her with lessons.  The ABM practitioner did double lessons (instead of 2 lessons a day with a break, he did 2 lessons a day back to back – i.e. 1.5 hrs continuous – every day.  This was WAY too much)  We also had a new practitioner doing MNRI lessons five times over the 3 weeks.

Retrospectively, I felt really badly how this went and wished I would have had the foresight and courage to cut back lessons or at least change them up a bit….  but at the time, I knew the practitioner was making a special exception to see us and we had basically spent our life savings to be there,  and we were just trying to get through the days with appointments, phone calls to insurance, Dr. consults, fevers, and allergies – all while living in a hotel room with a 1&3 year old (and no vehicle).

We still noticed some good changes:

  • her stamina for walking was WAY up.  She was able to walk much farther than ever before, and much quicker
  • climbing more and doing more “daring” things – better balance
  • requesting to walk instead of wanting to be carried or in the stroller
  • started walking down stairs (before had been too scared), holding onto the railing (occasionally)

Intensives #4, 5, 6:

IMG_0606

Finances limited us to staying close to home, so we found a new practitioner who was willing to travel to our house to give E lessons (provided we organized other families to get lessons at our house as well).  This worked out awesome – much easier than travelling on planes and staying in hotels with 2 toddlers!

We had 9-10 lesson intensives three times over four months.  During this time we noted:

  • better balance
  • notieceably increased range of motion right arm
  • much more consistently walking down stairs holding onto railing
  • started walking UP the stairs using the wall as support (no railing) during intensive #5
  • started using both hands to do DIFFERENT tasks at the same time, for the first time.  i.e. eating with Lt hand, using Rt hand to wash tray with a cloth
  • walking forwards while holding a big ball between both feet

UPDATE September : Intensive #7

We had one last intensive in August.  To be honest, we didn’t really notice any changes from this one.  Things had been pretty consistent over the last 6 months or so, very slow and steady progress.  It just seems that ABM isn’t really touching balance, coordination, and gross/fine motor skill issues for us anymore.

SUMMARY

ABM did some amazing things for E, particularly at the beginning, and we saw some great gains.  We voluntarily stopped most PT and OT and did a year and a half of ABM intensives exclusively, then another 6 months of ABM with adding in some at-home CIMT.  In the end, we will have done about 90 ABM lessons.  I say “in the end”, as we are deciding to discontinue ABM for now to pursue other avenues.

I am REALLY glad that we tried ABM.  Sure, it would have been better to do ABM when E was younger – I think an ideal age is about 4 months to 3 years, when movement patterns are really emerging.  Once E’s walking was well established, it seems that we started to notice only very minor changes.  Any gains are great, BUT… ABM is not free and so we had to weigh out the cost/benefit!

I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

download

“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)