The Muscular Dystrophy Association (MDA) runs clinic days at various children’s hospitals throughout the country. These days are specifically available to provide a checkup/status update for children with neuromuscular disorders (Duchenne included). Some of these locations have also become Certified Duchenne Care Centers, a title bestowed by Parent Project Muscular Dystrophy (PPMD – a Duchenne advocacy group) on centers who meet a standard of care considered to be superior – with highly trained specialized staff who offer a complete array of multidisciplinary services. This “certification” ensures that a Duchenne patient could be seen at any of these identified centers and expect the same level of specific knowledge in regard to course of treatment and research/clinical trial opportunities.
We are blessed to live so near to Chicago, where Lurie Children’s Hospital has such a clinic available (both an MDA clinic AND Certified Duchenne Care Center). Their pediatric neurology department heads up the MDA clinic days a couple of times each month and our annual visit for both boys was yesterday.
It’s a LONG day, but the process is smooth. Appointments are scheduled approximately 6 months ahead of time, and you’re offered an AM or PM option (we choose AM, because our boys are such early risers and typically have fewer behavior type issues -read: squirrelly/crazy/naughty/ornery – depending on the day! – in the morning). Due to anticipated morning traffic, we left the house a smidge after 6 and breakfast was eaten in the car. We made it to 3rd floor check-in right about 8, loaded up with snacks and crayons/paper/stickers/toys, prepared for the day. Our appointments were scheduled to begin at 8:30 and from there, everything went like clockwork.
We purposefully request the boys be seen separately (Cory and I can each focus solely on the needs of one of the boys and distractions are greatly reduced when talking to medical staff), so we’re sent to side-by-side exam rooms. It’s lovely that except for testing needed in different departments, the various disciplines come and see US in our little room. Intake begins with height/weight/blood pressure/oxygen saturation levels/temp, followed by a quick interview with the nurse. Then we saw the neurologist, had a DEXA scan (bone density test- long-term steroid use can weaken your bones and put the boys at higher risk of fractures and osteoporosis even at an early age) and Echocardiogram and EKG, visited with MDA local rep, dietician, orthotics, PT, OT, cardiologist, researcher seeking permission to use some of our boys’ “data” anonymously for an ongoing study.
All of this was accomplished in about 5 hours. The boys were patient and cooperative (for the most part!), they “performed” on command – getting up from the floor, timed walking and running down the hall, survived some poking and prodding. We were able to update Lurie staff on how our boys are doing – health, development, physical skill and current limitations.
They shared so many things with us:
-The potential to participate in an upcoming micro-dystrophin trial for which they are in the process of being approved as a study site
-Adding a daily probiotic supplement to the boys regimen to maintain good “gut health”, in addition to their daily multivitamin, CoQ10, Vitamin D, and weekend dosing of steroids
-Getting a script for AFOs (Ankle-Foot Orthosis – night braces) for Josiah to start using (Samuel has had his for 2 1/2 years)
-Renewing a script for Samuel’s AFOs once he’s outgrown them, and renewing scripts for both boys’ UCBLs (shoe inserts which help with balance and stability)
-Getting a script to start the process of acquiring a medical stroller for Samuel (he’s rapidly approaching 50lbs and maxing out the weight limit on a typical stroller/our jogging stroller holds a higher weight, but the size and shape of it is difficult for him to climb into) to use for long distances/busy days as he does tend to tire more easily than a typical 5 year old
The BEST bits of news they shared were:
-Samuel and Josiah’s heart function tests both look normal (the heart is a muscle, and as such is greatly affected by Duchenne and the lack of dystrophin protein – patients end up with scarring and thickening of the walls of the heart, it has less efficient function/becomes weaker)
-Samuel’s baseline DEXA scan taken yesterday shows totally normal bone density (not just for a boy with Duchenne on steroids for 4 years, not just for a boy with Duchenne, but NORMAL for a typical 5 year old boy)
I know not every clinic visit will be so happy. At some point we’ll be facing difficulties and decline, weakness and worry. The boys are both so young and have a long road ahead, but for now we were told to “keep doing what you’re doing, the boys are doing great”.
I’ll take it 🙂
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