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 QUESTIONS & ANSWERS

Karen in Aurora, CO:

1)Are your programs covered by the S SLS Waiver?

Yes.

2.) Are the sessions individual or group sessions?

Both, we provide individual PT and Group sessions.

Susan in Mi Wuk Village, CA:

1.) My son, Tim, lives on his own; how do I get him to add daily exercise?

a. Use a visual chart.
b. Put it on his calendar.
c. Start with the chart recommended in the webinar – try adding one exercise this week, one time per day (i.e. 10 squats each day), next week add in another exercise…

2.) My son is 35, what would be best for me to do with him for his body?

a. Get good shoes! Brooks Adrenaline, Saucony Triumph
b. Get good inserts – Superfeet Green, slightly larger size than recommended by shoe size
c. Use a visual chart
d. Put it on his calendar
e. Start with chart recommended in the webinar – try adding one exercise this week, one time per day (i.e. 10 squats each day), next week add in another exercise…

Jeanette in San Francisco, CA:

1.) Do you offer evaluations for out-of-state adults with Down syndrome?

Yes! Please come visit. I am also trying to figure out how to do assessments through telehealth if you are up to experimenting!

Carolyn in PA:

1.) What’s the first exercise you would recommend to get my daughter started into a routine?

Squats – best bang for your buck! Arms out, feet straight, sit down to a chair, stand back up. Great for scapular stabilization, trunk extension, abdominal activation, glute activation, hip and knee stability, and a dynamic calf stretch!

Dan in Atlanta, GA:

1.) Do you offer video sessions through Skype?

I am willing to give it a try! We need to refine the process

2.) If not, what videos out there do you recommend?

Annoying answer, but it depends on your person…do they like dance? Strengthening?

Laura:

1.) My son with DS is 12 yrs old and just started middle school this year. He hardly had any PT last year in school and has none this year so far. Although he is walking and running very well he still won’t climb on a playground structure properly nor will he attempt to ride a bike. His feet are also very pronated which I sought out an orthopedic specialist for correction.  So question is, is it still viable and important for him to receive PT services at this time?  His IEP is coming up. Should I still request it?

a. It sounds like PT is indicated for him to “access his environment” to be able to participate in peer activities
b. If they would provide PT to help with his climbing and participation in school activities, that would be awesome!
c. New shoes (Brooks Adrenaline women’s size or Saucony Excursions – they are hard to find right now, but worth it!)

Anna Jean:

1.) I would like professional advice re my son’s painful bunions, right foot worse than left. He has even had episodes of swelling, redness, etc. (gout) and has not been able to wear a shoe on his right foot until the swelling goes down. He is 34, has Down syndrome, is physically active, wears good shoes, and is not obese.  He receives Ibuprofen prophylactically before sports activities (e.g. skiing) and before he goes to work (3 mornings a week where he is on his feet).  He has concentrated cherry juice in his breakfast juice each day as well. So my question is re bunion surgery.  At this point our podiatrist and primary care dr. are of the opinion that we should just continue with what we are doing to minimize the pain and only consider surgery if the day comes when he can no longer walk.  I would be interested in knowing if other adults with Down syndrome have had this problem and how it has been managed.

In my experience across the populations, bunion surgery is EXTREMELY painful and has a variety of challenges following surgery with many precautions. It is very hard to manage. I have to agree with the PCP and podiatrist that the surgery is truly the last resort. Only a few of my other patients have had the surgery with mixed outcomes and a significant interruption to daily life during the post-surgery period.

Wendy in Kenmore, WA:

1.) When buying the suggested shoes should we use the inserts as well? We tend to pull out the insert that is in the shoe and insert our son’s. However, sometimes this makes it so the shoe doesn’t seem to fit right.

a. Start with the new shoes first
b. If he is still turning out and flattening on the inside border, add in the insert (Superfeet are my favorite in the green or blue)
c. Remove the liner that comes with the shoe
d. Use the shoe liner to trace the fit on the new insert
e. Place the new insert in the shoe
f. These are fairly low profile inserts, so the shoe should fit will with a bit of adjustment at the laces

Kimberly in Crested Butte, CO:

1.) Do you have recommendations for foot-ankle-knee alignment? In particular, my 9 year old daughter has flat feet and her gait is getting worse with age as her knees knock in while she rolls to her insoles with her lax ligaments, giving her ankle pain.

a. Start with the shoes
b. Then the inserts
c. I would also recommend glute strengthening exercises as the first exercise of choice (gluteal bridges)
d. For your daughter, I would also be interested in seeing her hamstring and calf flexibility

Heather in Bismarck, ND:

1.) What are the current recommendations for adolescents and adults regarding AAI assessment?

I have an email out to Dr. Barry Martin and Dr. Brian Chiocoine asking for their input!

2.) What are the current evidence based measures recommended for exercise testing in children, adolescents, and adults with DS?

To my knowledge, there are no specialized, evidence-based, exercise testing measures for our population. Research often cites VO2 Max estimates and heart rate as points of reference, but more as observational information, not testing for particular performance. Some research indicates a lower heart for individuals with DS

Angela:

1.) I can’t fit the inserts in my 3 year old’s shoes size. Too little volume left to get foot in, even if the shoe is size larger. Do you have shoes for little guys that are good as is without the insert? I don’t want the toe too long that he trips and that’s how long to get the insert in and fit volume.

a. Have you tried the Saucony Baby Ride in Wide or Extra Wide?
b. Do the inserts fit in that shoe?
c. Under size 10.5, the Saucony Baby Ride is the best option
d. Over size 10.5, I would go with the Saucony Cohesion (can fit inserts) or the Saucony Excursion (my favorite), with the Saucony Perrigrine in third place

Patricia:

Can you recommend a good Mary Jane, dance shoe or dress shoe for women? For ballroom dancing?

I have to do more research on this one. Does she need a heel? Some of the dance boards suggest using an orthotic in her dance shoe

Denise in Papillion, NE:

1.) Where do you recommend we go for correct insoles? We are not in Denver.  Internet recommendation?

Amazon and REI both carry the Superfeet. Superfeet.com also has a lot of great information.

2.) So my son prefers to wear a Nike shoe (for no other reason than it is his habit and he is adamant about it) any recommendations for that brand?

Can you try the Brooks as an option? The Brooks swoosh is very similar, and a much better shoe!

Donna:

1.) My 13 year-old daughter plays volleyball and basketball for her school. She has the custom-made inserts she wears in her gym shoes and they make such a difference in the way she runs. Kelsey doesn’t get any PT at school as she can access everything the other kids do. Should I have her evaluated for exercises or just do the ones you suggested to build more muscle?

My bet is she wouldn’t qualify for school PT, but adding in the recommended exercises would probably make a great addition to her current activities. Way to go Kelsey!

Yvonne in WV:

1.) My daughter had inserts made a few years ago for her shoes. Can she still use them? It’s been a while or should I get her new ones?

Time for new ones. Inserts are good for about a year with daily wear, impact, and foot growth.

Tara in CO:

1.) My daughter has had several falls, which are followed by her crying and complaining of her knee hurting. She seems to be able to walk immediately and appears to be more afraid than hurt. I wonder if she might have a dislocating knee cap, like I did when I was younger or if she is tripping secondary to some noticeable in-toeing, or maybe its hip instability. I thought this was happening when she was wearing flip flops, but it has also happen when she wears her AFOs and good tennis shoes. Suggestions on how to proceed? See you? Another PT? See an orthopedic surgeon?

I would first follow up with your PCP. Patellar dislocation is very common in our people with DS and can be very painful. My hope is the PCP will do some testing and refer you to PT for stabilization training before considering any surgical options.

Heather:

1.) I am a NP student implementing a nutrition education program for teens with DS that will include 15 minutes of exercise at the end of every session. If I were to use your 4 exercises that you suggested, would you also suggest that I do the same 4 exercises after each session for routine? Or should I give more of a variety to keep it fun?

Success at and mastery of a skill is a huge component to successful adoption of new habits in our population. I would suggest keeping starting with the 4 exercises and keeping them the same for the first few weeks and then maybe varying the order as everyone gets better at each movement. I would love to see your nutrition program!

Susan:

1.) On Superfeet.com how do you decide which letter to order? Tim already wears Brooks Beast with figure eight supports.

In general, my recommendation is to go up a letter size from what is indicated by his shoe size number. Full length orthotic inserts should provide full-length arch support. That means the arch should go all the way to the base of the great toe, not stop in the midline of the foot (that will cause other issues). The curve of the arch should go all the way to the base of the big toe, you can trim the front down from there.

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