Sunday, January 10, 2010


Elizabeth's poor knees they are causing her so much pain and discomfort. This has been going on for the past year and it comes in spurts but this week has been horrible for her. The pain we think is related to her hyperextending her knees with the most strain on her Rt. knee, when she walks or stands she pops back her knee for stability (as you can see in the picture of her Rt. knee). Certain activities such as bike riding, swimming, walking without AFO's, sitting in the car too long and extended walking really aggravate her pain, we try to be be careful but at the same time she needs to keep active to keep her strength. We have tried so many things to prevent her knee pain; rigid AFO's, AFO's up to her knees, a Benix knee brace, kinesiotaping, heat, Motrin (we are going through a bottle a month), massage and creams. Elizabeth during the day does not complain regularly of the pain but lately she is chewing her fingers and when asked she says her knees hurt, Elizabeth describes her pain as 'a hundred owies biting my knee'. Nighttime is the worst time for Elizabeth, she is up for hours and up frequently in the night writhing and crying. Her sleep lately is so disturbed that she is wetting the bed and during the day she is miserable. During the night we use heat, her Voltaren cream and Motrin and that lasts a couple hours and she is up again. I try not to get in the habit of sleeping with her but on some nights the only way to soothe her is by rubbing her knees. Lately we all have been miserable as we are all very sleep deprived. I talked with her Developmental Pediatrician and she was able to get us an earlier appointment with the new Orthopedic Surgeon as she is very concerned. We will see her Pediatrician for a check up this week as I just want to make sure there is nothing else I have missed and it is not a referred pain. She will also go and see the Orthotist to review her AFO's and see if there is anything else we can do to her AFO's to make her comfortable. We are also starting another block with her PT to work on strengthening to hopefully help her not put as much pressure on her knees. I so worry what it will be like for her when gets older, I see what her dystonia/ataxia/hypotonia (still waiting for a diagnosis) does to her little body now and I cringe to see what it will do to her as she ages. My last thing to try is for her to see a Chiropractor I just need to find some extra time in her busy schedule.


Candace said...

I hate that she is suffering with so much pain. Do you think there could be any coorilation with growing pains? Her pain may be exaserbated by the muscle tone? Just a thought. I suffered with bad growing pains when I was about 7-10 and my baby sis does still and she is 13.

Anonymous said...

Hoping you and the docs can help her find some relief. The ortho consequences of neuro problems are bad. Worse without therapy - credit that is not often acknowledged because a full cure-like result is seldom seen. PT is getting beat-up on another blog today like that. Sigh.

And apologies for my mini-whine. The ortho doc is a good call as well as the PT and orthotist. In general, I think the orthotist is most often the weakest link. I am very biased toward one brand and one orthotist in my town who can make them similarly. Only once did I suggest these to a Canadian blogger, and I don't think they were easily able to get them. For your perusal, see


Sherry C said...

oh poor girl thank god she can tell you where it hurts.

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