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View Full Version : Hi! new one here


tiffy799
08-25-2008, 01:32 AM
Hello!
I am new here but thought I could get some advice from time to time from others who have been through this. My little boy, Ethan, is 15 months old. He was born with SB (lipomyelomeningocele, tcs, hypotonia, oral sensory issues) He had his first detethering surgery at 2 months of age and has done well. He is taking steps now with no orthotics. He started the step taking about a month ago and is still not able to walk for long distances (long, meaning farther than across the living room and back before going to a kneeling position). His right leg seems to turn outward the more tired he gets and his feet are also pronating. We are going the SB clinic, PT, OT, ect...but would like to know how long the process took for others who have kids beginning to walk to full walking most of the time. Also, what is the range for the first de-tethering surgery after the initial repair is done for most children. What are the first signs of a symptomatic retetether for most children. Ethan has had urodynamics testing done and has no problems with bowels or bladder. Thanks for you time :signs116:

Tiffany
www.caringbridge.org/visit/ethanspage

Barb
08-25-2008, 01:34 PM
Hi Tiffany,

C started walking right after his second birthday. He used a walker and afo's for the first year and then could walk without the walker around 3. At 8 he had his first detethering and lost the ability to walk unassisted. He is now 10 and has not gotten it back. He can go short distances with a walker and can transfer places without a problem. When he started walking at 2, we were told it would probably only last until he was 12. My husband is 6 foot 8 and both of the boys seem to be taking after him. The doctors always said that the stress on his joints would be too much when he hit puberty. There is most defintely a motivation factor involved here. He just doesn't really care anymore. We do not allow him to have a chair in the basement (where our movie theater is) so if he wants to enjoy that he has to do a bit of walking to get there. It provides the exercise and weight bearing that is necessary.

Holly
08-27-2008, 11:43 PM
HI and welcome to SBC. I am sure some of our members will have some great advice for you :)