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momtokendall
12-28-2009, 11:40 PM
Hello all and Happy New Year-
I post here now and again- I have a 7 year old daughter with Muenke Syndrome. About a year ago she tripped and injured her right foot. It never seemed to heal quite properly, and she was only able to run on her tiptoes. We also noticed her gait getting worse over time, but couldn't figure out what was wrong.

Finally, an orthopedic surgeon ordered CT scans on both feet. As it turns out, she had fused bones (talus/calcaneus) in both ankles. She had surgery several weeks ago to separate the bones, and had to wear casts on both feet. We will be starting physical therapy this week to help her return to full range of motion.

Apparently, fused bones in feet and hands are sometimes seen in Muenke Syndrome. The surgeon said it was good we figured this out when we did, otherwise her feet would have gotten progressively worse, with deformities. I feel a little bad, because she has always had mild gross motor delays and for awhile we just assumed that her issues with running were related to that.

Anyway, I just wanted to let others know that this can come up in Muenke Syndrome, and if your child is having motor issues with the feet or anything else unusual, you may want to check for fusions in the feet- I wish we had realized this sooner, so we could have addressed the problem a year ago.

Lisa
12-29-2009, 08:38 AM
Wow, was there any signs or symptoms you noticed now looking back?

momtokendall
12-29-2009, 03:38 PM
Hi Lisa-
One thing we noticed was that her gait looked a bit shuffly. When walking, most people raise their toes up and start their stride on the heels of their feet and then roll the rest of their feet down as they walk. Kendall would also start with her heels, but she didn't have that smooth, full rolling motion, she didn't get her toes up very high. She tripped a lot, I think because her toes weren't fully getting up all the way. When she ran, she would either run flat foot or on her tiptoes.

Also, her Achilles tendons were tight- when we would stretch her feet we could not pull her foot up past 90 degrees. The surgeon actually stretched them during the surgery.

The surgeon told us that you can have fusions and not have pain or problems, but that the symptoms do tend to develop over time, and if not corrected can cause major foot problems. We think she probably always had the fusions as part of Muenke's, but that the functional issues only started showing up as she got older and more active.

In any case, I wish that this problem was on our radar when we first noticed the gait issues- it was just so minor at first- until she tripped and injured her foot last December. I would have requested a CT scan then. There is so little info about Muenke out there, but if you Google "tarsal coalitions and Muenke Syndrome" you can see a few research papers that discuss it.

Day of surgery, cool casts, huh? :)
http://i305.photobucket.com/albums/nn231/momtokendall/IMG_0196.jpg

Lisa
12-29-2009, 04:13 PM
I am so glad you shared this but hate that she had to go thru that!

I will keep a closer watch on Bradley now. He does trip a lot and walks and runs on his tiptoes most of the time, but my older son did this too when he was a toddler, so I had just chalked it up to that.

She looks so sweet, it amazes me how much coronal kids resemble each other even years post-op. Thank you for posting this information, I agree there is VERY little information or research out there on muenke, I feel like we are the guinea pigs here!

momtokendall
12-29-2009, 09:38 PM
It really is amazing how much they look alike! I think many toddlers go through a phase of tiptoe walking- most grow out of it, but Kendall never did. The typical age for seeing problems with tarsal fusion is 8-14, according to our surgeon. I hope this doesn't happen to anyone else!

Jenny
12-30-2009, 12:26 AM
Wow.. even though were not diagnosed with a specific syndrome, i'll keep an eye on it. I haven't noticed anything weird with Kayla's feet but now i'm gonna look, lol.

I love Kendall's casts.. i got a good little giggle out of them. too cute!

maz
12-30-2009, 05:00 AM
thanks for posting that thread.My son cameron has muenke too so i will look out for this .manythanks maz x

momtokendall
01-03-2010, 04:51 PM
:)