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!

Oh the feet

For several months now Angela has been complaining about hip pain any time she walks long distances (which for her is more than a block) or when she's been sitting down for more than 10 minutes. We've also noticed a horrible popping sound when she stands up. Sometimes that sound is accompanied by pain and other times not.

On Wednesday we paid a visit to the orthopedic surgeon. (not that she needs surgery, but because that's just who you see.) The visit was interesting! The last time Angela saw an orthopedic specialist was when she was 7.

Angela does not have hip problems that are common among young ladies with Down syndrome. Usually if they have problems it's that their hips are very loose and dysplastic. Angela's hips are well formed and tight in the socket. Although she does have a bump on eat femoral head consistent with CAM impingement, it isn't bad enough to need surgical intervention. What she does have is a iliotibial band which is too short, causing it to stretch too much when walking or sitting, which causes the pain.

I did see on the X-rays that Angela's growth plates on her hips are indeed completely closed. This means that at 4 ft 8, Angela is completely done growing. She is a very tiny young lady.

As for her feet, most people with Down syndrome have flat feet or poorly formed arches. Angela has never followed "the rules" and her feet are no exception. Her arches are exceptionally high. Not only that but her feet are very small for her body. All of these things combine to give her problems with balance, a toe the catches when she walks, etc.

When Angela was little she wore inserts in her shoes. Now that she's older and having more problems it's time to give her a little more help. Angela's favorite part of the day was the casting that took place so she could be fitted for orthosis.

First her left foot was casted. Although this foot has a high arch the ankle still pronates so needs support. She will have an SMO made for this foot.

Her right leg, the problem leg. This leg with the shortened tibia also has a "drop foot". This makes her toe catch on the ground while walking, causing frequent falls...and injuries to go with it. This foot/leg was casted for an AFO with dorsiflexion assist. That means the ankle of the brace will be spring loaded to allow flexibility and help her foot to come up when she lifts her foot. It will also be built up a bit to compensate for the lightly shorter tibia. In addition it will include a plantar stop which will prevent her from walking by jamming the ball of her foot into the ground causing HUGE callouses that eventually rip and are very painful. 

We'll go back in a couple of weeks to pick up Angela's braces. Next week will bring another round of orthopedic visits when both Axel and Asher will see the specialist. Now that Axel is very active for the first time in his life AND he's gone through a rapid growth spurt, we're starting to see some minor problems with his feet. Asher has terrible feet! Because he was in a crib so long his feet were not able to develop normally. His arches are nonexistent and when he walks his bit toe curls under his first toe. He walks better in shoes than he does barefoot but it is clear he needs some additional support to his feet. Next week will be fun for sure!