Our Orthoses and Therapies Age 4-5 – SPIO, McKie, Bamboo, Ottobock

As E gets older, her orthotic and therapy needs change as well.  This is very individual, but I will update with what is working (or hasn’t worked) for us!

I have found that at times, when I focused on therapy and outcomes, I began to view E’s physical challenges as obstacles to overcome.  Since I am a problem solver, these obstacles became “problems”, to which I needed to find “solutions” – such as CIMT, ABM, MNRI.  This played out most clearly in our last trip to California for ABM/MNRI, where I pushed to follow the therapy plan with (as I see it now) disregard for E as a person.  She was sick, she was a toddler, and it was way too much for her.  Desiring to please me, she mostly cooperated – but did end up shutting down.  As a result, we didn’t see much improvement from that therapy trip.  Therapy only works if your child is engaged and reasonably happy – an upset brain doesn’t lend itself to learning.

Since then, I have learned to SLOW DOWN.  Yes, therapy is important.  But not at the sacrifice of personhood.  E is so much more than a “tricky” arm and leg.  I would love to maximize her abilities and prevent future complications, but what is even more important to me is her heart.  Wise advice from those further down the road than us – Recovery is a marathon, not a sprint.  You don’t have to do it all today. 🙂

Slowdown

Upper Limb:

Thumb Splint – E still typically keeps her thumb postured in her palm unless consciously opening it.  We have found two options useful to us – one is the SPIO wrist/thumb sleeve.  It probably works better than the McKie for keeping the thumb joint out and stable, but it is kind of tight on E’s arm and didn’t fit very long (she has chubby arms); we didn’t find it helped with the wrist.  Cost is around $31 and it can be ordered online (http://www.spioworks.com/category/31/wrist-and-hand).  Our mainstay for the thumb has been the McKie thumb splint.  Measuring is easy and we have had no issues ordering online – cost is around $25. (http://www.mckiesplints.com/features.htm).  The palmar surface is nice and open with this splint.

Wrist Splint – E’s wrist tends to bend downwards quite often throughout the day.  She is able to elevate it with effort since our Alabama CIMT camp.  To maintain range of motion, we find the Ottobock cock-up wrist splint very effective.  It also doesn’t cover the whole palm and is less bulky than a Benik.  There is an adjustable metal stay in the wrist area.  We layer the Ottobock over the McKie.

Elbow Brace – We continue to like the Bamboo Brace for elbow posturing.  It comes with 5 or 6 different strengths of stays that you can use interchangeably.  The bamboo has been helpful for keeping the elbow straight when learning to hold handlebars (tricycle, bicycle).  We also use it when E is eating as that is another time her elbow postures.  It is also a pretty cheap investment at around $50 online. (http://www.amazon.com/The-Bamboo-Brace-Infant-Toddler/dp/B0051747D8)

CIMT Constraint – We have had an orthotist fashion a constraint cast out of thermoplastic material for E’s left arm when we practice CIMT.  This has been much less bulky, cooler, and cheaper than a cast.

We haven’t found a need to night brace, as E is typically loose and relaxed when asleep.

Lower Limb:

AFO/UCBL –  We ended up going to see Dr. Paul Jordan in New York for specialized orthotics.  He felt that E did not need SPML surgery as her range of motion videos we sent were within acceptable limits.  He did an assessment and impressions of her legs and feet on a Tuesday, they fashioned the orthotics on Wednesday, and we went in for our fitting on Thursday.  E got a modified AFO for her affected side and a modified UCBL for her unaffected side, which was doing some abnormal compensating.  How were they different from more standard AFO’s and UCBL’s?  Dr. Jordan demonstrated to us how applying “arch support” did not actually accomplish an ideal foot position, but just moved the fat/skin.  This is going to be difficult to explain properly, but there was a point on the bottom of E’s feet where, when pressed, her ankle would give way and roll.  By placing the support under that point (instead of the “arch”), he was able to correct her foot position.  I may have said that completely wrong, but whatever he did, it corrected her gait quite substantially.  Perfect, no.  (but much better than the conventional offerings).  Note: Dr. Jordan has adjusted the orthotics via mail based on videos we have sent and markings we make on them.  They are supposed to last 2 years or so!  *Highly* recommend him.

Trunk Support:

SPIO – We currently have the shorts and the TLSO vest.   The shorts don’t seem to make any difference to E’s posture or gait, and so we didn’t reorder them.  The vest does improve E’s seated posture, and I would recommend it for that as a cheaper alternative than the DMO and it is easier to apply than Theratogs.  It is hot in summer, though, so we mostly just wear it in the fall, winter, and spring.  Each of these fit about a year or so before we have to size up.  The TLSO is quite adjustable and forgiving if you get it a bit on the larger side.  We also order these directly online. (http://www.spioworks.com/product/26/classic-tlso)

Therapies:

Although we have been using orthoses somewhat regularly as above, we haven’t been doing much targeted therapy for the last year+.  I feel like we did a huge push her first 3-4 years with therapies, and while we made some wonderful gains, she definitely started to plateau in her abilities.  What started to become more important was “regular kid stuff”, so this has become our new “therapy”:

  • playground confidence – going to various playgrounds and gaining increased skill and confidence on the structures
  • scooters – practicing on 3-wheeled scooters
  • tricycle – practicing pedaling and steering
  • balance/strider bicycle – practice steering and balance
  • swimming – gaining water confidence
  • gymnastics – with parental assistance, basic level
  • obstacle courses

This has also helped our lives to feel more “normal”!

I won’t lie, E’s activities have been limited by her stroke.  Although she is musical, she hasn’t been able to pursue music lessons past the introductory levels because of fine motor challenges.  She is hesitant and needs assistance on playground equipment and at her gymnastics classes.  She is still working at getting steering and pedaling coordinated on a tricycle and never did get the hang of gliding on a balance bike.  E has noticeable gait issues in both walking and running.  She has difficulty with dressing and undressing.  She uses her affected hand mostly as an assist, and the arm often moves as one unit to stabilize objects more than to functionally participate.  I say this all matter-of-factly, because although it is part of who she is, it doesn’t define her.  We all have different strengths and challenges.  Part of life is learning to embrace all the bumpy bits in ourselves and others, for we are none of us without flaw.

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.

 

Advertisements

Bilateral Walking Casts – Achilles (Heel Cord) Stretch

img_20160701_154009

E had outgrown her AFO from Dr. Paul Jordan (New York) early in the year.  It’s not that she grows that quickly… it’s just that we got busy with life… and she started complaining when we would put the AFO on.  Taking a closer look, it was apparent that the arch support was no longer in the right spot.

We took some videos and sent them to Dr. Jordan for evaluation.  He replied that E definitely needed a new AFO – it didn’t come up nearly high enough on her calf and wasn’t in the right position on her foot.  Yikes, mommy guilt.

Our dollar is really low right now and another trip to New York was just out of the question for us financially.  So we decided to pursue things locally this time, despite my nervousness to do so.  After all the referrals and consultations were completed…we had ended up going without an AFO (using off-the-shelf Chipmunk UCBL’s instead) for about 6 months.

Don’t try this at home, folks.  Not sure how time slipped by on me so quickly, but it did.  And suffice it to say, going without an AFO when you need one, is not a good thing.  E lost a lot of range in her ankle (passive dorsiflexion), and her foot definitely started to form that c-shape curled inwards again.  Had my neglect destroyed her foot forever?!?!?!

Enter a new PT who saved the day!  The PT suggested a round of serial casting to try to get that dorsiflexion range back in her ankle.  I was interested in following Dr. Paul Jordan’s bilateral walking cast protocol, and the PT was supportive of this.  We had amazing help from the local hospital cast technicians and our new orthotist as well!

E ended up having bilateral walking casts for almost 4 weeks, being changed every 1-1.5 weeks with an increase in stretch each time.  Why bilateral?  To keep the sensory stimuli the same for both feet.  To prevent limping and decreased weight bearing on the right.  We need that good weight bearing to provide the stretch… The PT just mirrored the angle the Rt ankle could achieve and set that same angle on the left.

Here’s the protocol for anyone interested.

Serial below the knee casting is used for correction of mild contractures and muscle shortening of the Achilles group and with some elongation (growth, not stretch) of the hamstrings. Casts are also applied following surgical lengthening of the Achilles. No crutches are needed – in fact, not desired if the purpose is to gain or retain length of the posterior leg muscles.

Did it work?  YES!!!!  E was able to gain about 15 degrees increased range over the 3.5 weeks.  She moved right into her new set of AFOs, to provide support for the newly elongated muscles.

_____________________________________________

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)

 

Entering the School Years: Our Therapy and Orthoses Age 5-8

As we enter the school years, I have spent some time reflecting on our journey thus far.  Could we have done more therapy?  Absolutely.  Would it have helped E have more functionality?  Probably.  Would it have been worth it?  Maybe Yes, Maybe No.  It’s been a gradual process, like groping in the dark trying not to stub our toes.  There is little assistance (in Canada, anyways) beyond the basics.  If you want more, you have to search it out and do it (and pay for it) yourself – although usually the therapists and physicians (pediatricians, GP’s) are supportive and assist if/when possible.  We have done some series of twice a week PT and OT sessions, but don’t find many gains.  Instead, we have decided to focus on typical kid activities and regular life experiences for most of our “therapy”.

Therapies:

  • playground confidence – going to various playgrounds and gaining increased skill and confidence on the structures
  • scooters – practicing on 3-wheeled scooters
  • bicycle with training wheels – practice steering, pedaling, and balance
  • swimming – gaining water confidence – started private swimming lessons at age 7 and this has been going so very well!  (Highly Recommended)  We plan to continue these for many years!
  • Taekwon-do – E started in a kids’ class, and this has been so great for balance, proprioception, and gross motor skills (Highly Recommended).  We plan to continue this for many years!
  • gymnastics – E continued this for age 5-6 in a younger kids’ class, but discontinued after this point as it got too tricky to move on to further levels
  • obstacle courses – tunnels (crawling), balance beams, ramps, hoops, etc.

Upper Limb:

Thumb Splint – E still typically keeps her thumb postured in her palm unless consciously opening it.  Our mainstay for the thumb continues to be the McKie thumb splint.  Measuring is easy and we have had no issues ordering online – cost is around $25. (http://www.mckiesplints.com/features.htm).  The palmar surface is nice and open with this splint.

Wrist Splint – E’s wrist tends to bend downwards quite often throughout the day.  She is able to elevate it with effort since our Alabama CIMT camp.  To maintain range of motion, we find the Ottobock cock-up wrist splint very effective.  It also doesn’t cover the whole palm and is less bulky than a Benik.  There is an adjustable metal stay in the wrist area.  We layer the Ottobock over the McKie.

Elbow Brace – We continue to like the Bamboo Brace for elbow posturing.  It comes with 5 or 6 different strengths of stays that you can use interchangeably.  The bamboo has been helpful for keeping the elbow straight when learning to hold handlebars (scooter, bicycle).  We also use it when E is eating as that is another time her elbow postures.  It is also a pretty cheap investment at around $50 online. (http://www.amazon.com/The-Bamboo-Brace-Infant-Toddler/dp/B0051747D8)

CIMT Constraint – We just purchased an economic wrist splint from her orthotist for the left hand, and put a sock overtop of the fingers.  E is able to control herself and not remove the sock now that she is older.  We haven’t done much CIMT, but she actually asks to sometimes.  We haven’t done much not because she isn’t willing, but because it takes such an overwhelming amount of time for me 😦

Lower Limb:

AFO/UCBL –  E underwent serial casting of both ankles when she was 6 to increase her dorsiflexion range of motion in her right ankle.  Following this, she moved right into a new AFO.  We continue using an off-the-shelf Cascade Chipmunk UCBL for her left foot.  I should mention, we also found a new orthotist, who is also AMAZING.  He was able to analyze Dr. Jordan’s AFO and understand the intent of it, and make some suggestions as well.  Basically, a fixed AFO is great for running and fast movement.  It’s very stable.  However, it does not allow a lot of joint movement.  Since we were using it all the time, it contributed to her DECREASED range of motion. A hinged AFO is great for standing, walking, going around the house.  It’s not as stable, but it allows for a lot of joint movement.  Since E’s ankle is pretty stable right now and doesn’t collapse over on her very often at all anymore, she does not need the AFO to be as rigid in the ankle area.

We purchased two AFO’s, a fixed and a hinged one, with the plan to use the fixed one for running, parks, out and about, and the hinged one for at home, indoor (more sedentary) activities.  However, after trying both out, we use the hinged one consistently.  It has these built in “tendons” on the sides that force the foot into dorsiflexion at rest.  (When it’s off her foot it sits at about a 30 degree dorsiflexion) It can even be used overnight for stretch.  It seems to stabilize her ankle very well (which is not overly weak at this point), and after 6 months of use her foot is almost straight again.  She still tends to walk on the outside (lateral) edge of her foot when not in her AFO, and her foot is slightly curled (c shape) inwards.

img_20170103_114540 img_20170103_114547

Inverse Wedge Shoes – We are also using stretch wedge shoes again, about 30 minutes a day while standing still (playing iPad or computer games).  I also highly recommend these for increasing/maintaining range of motion.  Just a wedge (about 10 degrees maybe?) added onto a sneaker by the orthotist.  We measured what angle she could comfortably passively reach and aimed for a similar wedge angle.

img_20170103_114013

E is being monitored every 6 months by the orthotist and it is planned to make a new AFO yearly for her now.  We will continue with the hinged/”tendon” one for awhile now, as well as the stretching wedge shoes.

Trunk Support:

SPIO – We continued to use the SPIO TLSO vest for age 5-7.  The vest does improve E’s seated posture. It is a cheaper alternative than the DMO and it is easier to apply than Theratogs.  It is hot in summer, though, so we mostly just wear it in the fall, winter, and spring.  Each of these fit about a year or so before we have to size up.  The TLSO is quite adjustable and forgiving if you get it a bit on the larger side.  We also order these directly online. (http://www.spioworks.com/product/26/classic-tlso).  E really dislikes wearing the vest now that she is older – she dislikes the tight sensation, the warmth, and is embarrassed about the bit that peeks out her shirt.  I had to bribe, threaten, and cajole.  We have come to a point where I allowed her to choose between the SPIO vest or regular chiropractic adjustments, and she has chosen chiropractic instead.

School:

We had been advised to hold E back for a year before starting Kindergarten as she also has constitutional growth delay in addition to her gross motor delays (balance, coordination, physical skills).  She didn’t qualify for an aide (being “too functional” to qualify for access to the limited pot of funding), but was unable to independently potty or dress and has difficulty navigating in crowded situations.  So instead, I homeschooled her so that she wouldn’t fall behind.  It went so well, and we were able to cover the standard information so quickly, that we have decided to continue the homeschooling route!

Summary

So, that’s where we are at!  As to where we are headed, in the future I hope to pursue:

  • CIMT – as E is able to consciously choose to engage in it
  • TMS – transcranial magnetic stimulation – offers benefits similar to CIMT but with less effort; I hope to combine this with CIMT in the future
  • Robotic gait training, Robotic arm training – these require a minimum leg/arm length which E does not yet meet
  • Swimming – particularly water walking and deep water walking for gait training, but swimming is the perfect rehab sport for stroke!

I am happy with where we are, and yet there are always bittersweet twinges of where we could be.  I am sure these feelings probably always remain.  Being a part of a pediatric stroke community there are stories of both challenges and successes that we share, and those that we do not.  Some face intense issues – seizures being one – that we have not encountered.  Others seem to recover almost completely (Mia’s Pediatric Stroke Blog).

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)

Our Dynamic Movement Orthoses (DMO) Experience – Age 4

_MG_8626

DMO Bodysuit

E has just recently outgrown her DMO bodysuit, so I thought I would drop a quick note to the pediatric stroke community to share our experience!

Originally when we ordered the suit, they stated that it is usually a 2-3 year commitment of daily wearing.  Usually one suit lasts 9-12 months (in growing children).  The benefits expected, from their website, are as follows:

Our orthoses work using strategically placed panelling which correctly aligns the body. This new positioning stimulates sensory systems throughout the body and re-programmes the brain, ensuring muscles operate in their new optimal state.

We use a unique Lycra® blend designed to give the best combination of flexibility and comfort, enabling freedom of movement.

In addition to this we incorporate reinforcement panelling to provide strength and stability where needed, realigning muscles so that they work in an improved biomechanical position, influencing body alignment and proprioception.

 All these benefits work towards a single goal – to improve function and encourage independence for the user.

E wore her bodysuit (short sleeves, down to the knees) for 11 months before outgrowing it.  It came to us very long – which I was ok with since I thought it would last longer.  Our orthotist/certified fitter was ok with the fit.  I am actually hoping she may fit it again in the future if she grows upwards instead of outwards!  (UPDATE: she didn’t)

Changes we noticed (immediate, and ongoing when wearing):

  • it improved her posture – straightening her back, especially noticeable when seated for play
  • it improved her balance – she was able to do stairs up and down much more confidently, independently

Overall, it was comfortable and easy to put on (2 minutes).

Disappointments:

  • I was hoping that it would improve her gait a bit.  It didn’t change it at all.
  • Cost.  It was over $2400 CDN.

Recommended?

  • Yes, if you have assistance with the cost (insurance).

DMO Wrist/Hand Splint

I really wanted to get E into a DMO wrist splint.  I had the opportunity to try an adult-sized demo on and it ABSOLUTELY encouraged supination.  !!!  This is one motion that is difficult to achieve through other methods.  We have tried kinesiotape briefly but found it to be not that effective.  We have also tried the supinator strap with the McKie which didn’t do a lot for us either.

(We are, however, fans of the McKie splint as well as the Ottobock wrist splint for other motions – getting the thumb out of fist and getting the wrist up.  Both are very reasonably priced – under $50 – and can be ordered directly online from their respective company websites).

We ordered the DMO wrist splint (and paid our deposit) in November.  It didn’t come in until January.  It was MUCH too small and pinched her hand so tightly that the fingers started turning purple.

The orthotist remeasured and got the same measurements (so she hadn’t grown).  The DMO measured much smaller than her hand.  We sent it back to be adjusted (free).

It came back in March.  With no apparent changes made.  Still much too small, very uncomfortable, and inhibiting motion (plus taking forever to get on).

IMG_20140306_101321310 IMG_20140306_101328249

In the end, they reimbursed us our deposit and we may try again when she is much older.

Recommended?

  • Cautiously for older children and adults.  It has great potential and I personally can witness to its’ supinating power (from a demo on myself).
  • It also is pricey (~$1400CDN)

ALTERNATIVES 

Due to the cost of the DMO, we are pursuing an alternative this year.

  • Theratogs is a great alternative, but is warm (neoprene) for summer and the strapping is a little…cumbersome.  I think we might try it again when E is a little older and able to assist with the strapping, as it does pop off throughout the day with motion, pottying, etc.
  • SPIO also carries a line of therapy garments.  I ordered the TLSO Vest and the lower body shorts, as well as the wrist/hand splint.  The total cost of these 3 SPIO pieces was $450CDN.  If you didn’t need as supportive a garment on top, the shirt is about $100 cheaper than the vest.
    • The TLSO vest is great – easier to apply than the Theratogs, and in my opinion just as effective as the DMO/Theratogs.  The back is neoprene (warm) and the front is lycra (breathable).  It is adjustable via velcro.  Application takes 1-2 minutes.  It does come with a strap that goes around the crotch to keep it from riding up; however, this interferes with independent toileting so we have been leaving that piece off.  It seems to stay down ok as long as it is done up tight enough.  HIGHLY RECOMMENDED
    • The lower body shorts didn’t seem to make any difference in gait or trunk support for E.  They are also *very tricky* for her to get up and down herself, so she is unable to go potty independently while wearing them.  EHHHH, neither here nor there for us.  We haven’t been using them due to the toileting issue.
    • The Wrist/Hand splint is great for getting thumb out of palm (better than the McKie), but does reduce palmar sensations.  It only mildly helps with wrist support, and does nothing for supination.  I do recommend it as a thumb splint.  RECOMMENDED.

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)

Donating Used AFO’s, Splints, and Medical Supplies

I finally found them!  Places where you can donate gently used AFOs, splints, etc.  What a great way to help out those who can’t afford these medical aids.  From what I understand these agencies collect many orthoses, and then choose the best fit for each child.

AFOs, SMOs, AFO-fitting shoes & socks, Splints, Prosthesis – all types, Leg Braces – all types, Air Casts, Wheelchairs, Canes, Crutches, Walkers, plus other medical equipment (new and used):

Christian Blind Mission http://www.cbmcanada.org/

CBM Canada Int’l

3844 Stouffville Road

Stouffville ON

L4A 7Z9

AFOs, SMOs, crutches, upper extremity splits:

Embraced (USA) http://www.embracedatlanta.org/

AFOs/splints specifically for Club Foot:

Club Foot Club http://clubfootclub.org/

Hearing Aids:

Starkey Hearing Foundation http://www.starkeyhearingfoundation.org/

Wheelchairs:

Wheels for the World http://www.joniandfriends.org/wheels-for-the-world/

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)

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)