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 orthoses. 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.
The OT 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 ankle/foot. We used it a bit, but at this time (22 mo – 28 mo) she didn’t do very much walking.
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 and movement (a bad thing), 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.
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.
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:
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. 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?!). Her assessment concurred with Dr. Jordan’s.
The other thing we have been investigating 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.
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 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.
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 longer than overnight to dry!
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!
Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would. Yes, there is grief, and anger, and regret, and frustration. But there is also courage, and hope, and compassion, and purpose. If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling. Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story. Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him. If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge. YOU are worth it.
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.
“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)