Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, July 11, 2012

A Step Backward

When Angela first started walking (at age 24 months) she had orthodics made for her to support her then very flat arches. Several years of wearing those inserts in her shoes allowed her foot to form a very nice arch and by age 5 or so she didn't need them anymore.

Later, around age 10, I noticed that her right ankle was starting to pronate - or roll inward. This can eventually lead to problems in the knee, then hip, then later the back so we saw the orthotist and she was again given inserts in her shoes. She wore them about a year, and to be honest, I don't know what happened. Pretty sure I dropped the ball or something. She probably outgrew her inserts and I didn't bother to get a new pair made.

And here we are at 16. Angela has been complaining about her right hip, and we've been hearing it make a horrible popping noise when she stands up from sitting, and she gets really sore if she does a lot of walking.

So a couple of weeks ago we went to see an orthopedic specialist. What she told me was surprising. First of all, Angela does not have the hips of a 16 year old young lady with Down syndrome. The majority of people with DS  have low muscle tone. Angela has what is referred to as "mixed tone", meaning some areas of her body are loose (low tone) and others are tight (high tone). Hips are a problem area for many people with DS, but Angela's hips have very high tone. Not only are they tight, they are a bit too tight.

Here's a picture of some the hip muscles. See that white band labeled "iliotibial band"? It is the ligament that connects the iliac crest (top of the large hip bone) to the top of the tibia ) the lower leg bone.
Angela's iliotibial band is too short, making it always tight. Also, Angela's tibia, (lower leg bone) is a bit shorter than the other leg.

So, she has a tight, too-short muscle in her upper leg and a too-short bone in her lower leg. This makes her right leg approximately 1 inch shorter than the other. This may not seem like a lot, but when you spend your life walking like that, it does damage to the back. In fact, Angela walks slightly bent forward at the waist. This is due to that short muscle pulling her forward. Because she's walked this way her entire life, the ligaments at the front of her ankles have also gotten shorter. Walking straight upright is impossible for her.

Putting all of this information together, the orthopedic doctor suggested I talk Angela's neurologist and see if he things Angela also has CP (cerebral palsy). Not that this diagnosis would do anything for her, but it might help understand some things going on with her, considering the ortho also noticed that Angela's hand on that side is very tight too. All very odd considering the strokes she has were right-brain strokes, meaning they affect the LEFT side of the body. Hmmmm

Anyway, Angela has now progressed past the point of basic inserts in her shoes helping her. Her right leg needs significantly more help, so she was given an AFO.

You'll  notice the AFO does not have a joint in the ankle, meaning Angela is not able to flex at the ankle AT ALL! This is to correct a drop foot.

 Angela's gait was terrible before, and she has a horrible callous built up on the ball of each foot.

Guess what? She walks HORRIBLY in this brace! Yeah, it's going to take her time to get used to it, but she doesn't know how to walk in it, and isn't going to know how unless she gets some PT to show her how. Frankly, I hate this brace. I want her to get this brace instead. Angela's heel has never hit the ground first while walking, so she doesn't know how to make that happen. The other brace would make it happen.

I don't even like making her wear this brace. Although she's been wearing it to summer school (which is only 3 hours), I don't think we'll be taking it with us on vacation. She gets exhausted walking with it and she'll be walking A LOT in the next couple of weeks.

Angela's left leg was the recipient of an SMO.

Obviously the SMO is much less invasive. It is mostly correcting her now flat arch on that side, along with giving her ankle more support so it doesn't pronate.

Overall, I'm irritated with these braces. To me they seem like they're going to cause more problems than actually help. As soon as we get back from our trip we'll be making another visit to the orthotist!


And patiently waiting... said...

I don't like the AFO's for Srecko either!! He walks better without them!! With his CP and since coming we home we noticed it! We told this to his ortho doctor...he noticed that too!! So now after almost a year of wearing they are looking at hip problems and how to fix them! Surgery was mentioned...So, I am NOT happy with the AFO's and I don't make him wear them all day...half days, I can't stand the thought of my baby having surgery...there better be an alternative!!
Sorry to hear about Angela's feet...hope there is a better solution found!!!

Becky said...

I would ask about a DRAFO, its to help with heel strike-the next step in Alina's bracing is a DRAFO on her right foot and an SMO on her left foot.

She walks better without the AFO's too, but her feet don't hit the ground right and that in the long run causes problems. Angela has to relearn how to strike her foot to the ground properly so she's walking terrible to compensate. It happens every time Alina gets new AFO's, she either stops walking or she walks horribly for a few weeks.

I hope you find a solution, its kind of a science experiemtn sometimes. :)

Hevel Cohen said...

I can't stand Matthew's currernt AFO's either. He stopped wearing them after a few weeks, because they caused more difficulties than not having them. :(

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