Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 Liz, I tried to e-mail you privately, but it bounced.... so here is my reply. -Patti - - - - - - - - - - - - - - - This makes me think of two things.... first, that the K protocol (we're doing it, too... since Sept. 25th) certainly *can* bring up some strange and somewhat negative symptoms, even while I know it's doing GOOD things. My daughter has had a really strange rash that appeared about three weeks into the K protocol..... and it has persisted all this time, just very recently has started to fade and get better. I'm just wondering if maybe the bottoms of his feet are super sensitive, and somehow that could be related to the oxalates moving out? The OTHER thing that it makes me think of is the possibility of a tethered spinal cord. Have you ever heard of that.... or looked into it? I only know that toe-walking and " walking funny " are issues that are often seen in the kids that are eventually diagnosed with tethered cord syndrome (TCS). My daughter was diagnosed with it at age 5, and had her cord surgically released almost 5 yrs ago. In our case, she has always been extremely delayed in all areas, so if her feet and/or legs were feeling tingly or numb... or hurting.... she wouldn't necessarily have told us. She still (at age 10) has no real functional speech, and has a very high pain threshold. ANYway..... she had finally started walking at age 4, but then slowly walked less and less.... stopped climing up on furniture, stopped crawling up the stairs, etc. By 4 and 1/2, she had stopped walking altogether. We were devastated, thinking she would never walk again. It was so unfair! A physical therapist brought up the TCS thing.... because she happened to have another kid client who had had the surgery. The PT was suspicious because Katera had sort of a funny looking lower back..... was starting to have sort of a scoliosis, plus her lower back was super HAIRY. She told me that can be an indication of " Spina Bifida Occulta " (SBO), which CAN be associated with TCS. We had to then take her to some specialists and get the proper testing.... x-rays, spinal MRI, EMG (to test the nerve impulses in her legs)... and sure enough, they found that she had SBO- just a slight abnormality in the lower lumbar spine (most people who have that have zero symptoms their entire life.... about 10% of the population have some degree of SBO and never know it). .... AND they found that her spinal cord was actually " stuck " in that area of her lower spine. So, as she was begining to grow taller, tension was pulling on the spinal cord and doing damage to the nerves into her hips and legs. She was not able to tell us, but her feet & legs were probably getting tingly, then painful, and then numb as the nerve damage progressed. A few months earlier, she had some bouts of what seemed to be extreme pain in her lower back (hard to tell where it was coming from in a very, very delayed little girl).... to the extent that an ultrasound was done on her kidneys to rule out kidney stones. There were none. Now we know it was the spinal cord all along. We also know now that a lumbar puncture that was done to draw spinal fluid when she was a baby *may* have contributed.... since they found scar tissue there when they finally did the cord release surgery. Anyway.... it took a while to get it properly diagnosed.... not all docs really know much about it, or believe in it. Katera's surgery was done in June of 2002, and two months later, at age 6, she was walking again. Imagine our joy. I know it may be a long shot with your little guy, but I just wanted to mention it and give you a couple of links to find out more, just in case: www.pullthrough.org/ptnn13.html www.lfsn.org/tethered.htm www.wrongdiagnosis.com/t/tethered_spinal_cord_syndrome/intro.htm I copied this from another website: <<The symptoms of tethered cord can vary. One common problem is difficulty walking or weakness in the legs or feet which may cause the leg to drag or the feet to turn in or out. Pain in the back or legs is also common. Other changes include numbness or tingling, a change in bladder or bowel function such as wetness between catheterizations, scoliosis (curved spine), " tight " or stiff legs, tenderness over the spine or previous scar, and a decrease in activity. If your child develops symptoms such as these, they should be evaluated for the possibility of a tethered cord. >> That was from a pretty good article, posted at : www.neurosurgerytoday.org/what/patient_e/tethered.asp I totally hope your son does not have this.... but I wouldn't have been able to sleep tonight if I didn't at least tell you about it. Patti OT: son walking funny Hi, I was wondering if anyone can offer advice about this. My son walks " funny " in several different ways. Recent Activity a.. 22New Members Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 I'm no expert here, but I do work with numerous OT's and PT's on a daily basis regarding sensory issues. Coincidentally today I discussed such an issue (an autistic boy walking on his toes). His OT said he probably does it as a way of getting sensory input. It is a way of getting propreoceptive input for his joints. She also mentioned that they were looking into getting Botox to help relax his calf muscles....that one kinda confused me. You know as our kids progress through this diet we see all kinds of different sensory stuff pop up. This may be how it is manifesting itself in him for now...??? Becky reynoldseliz wrote: Hi, I was wondering if anyone can offer advice about this. My son walks " funny " in several different ways. He has not always walked like this, and it comes and goes, but lately it has been very bad. I cannot seem to link it to anything in particular. He almost always walks on his toes now. In addition, he will frequently turn his right ankle out so his right toes are pointing toward his left foot when he walks. He will also walk sideways a lot. If he is not doing one or a combination of these things, he is running, skipping, or bouncing when he walks. I don't remember it always being this way, or at least not as bad. I have scheduled an appointment with a PT to evaluate. His OT wasn't sure why he is doing this. The OT says it does not look like he has lost any range of motion in his feet and that his calf muscles seem fine. I don't think the toe walking is related to constipation, as I have read it might be. He has regular bowel movements. We have started the Vitamin K protocol recently, and therefore stopped giving him calcium supplements. It MIGHT be related to this somehow, but he has walked like this in the past when we were giving him calcium supplements. I just worry about his bones, as it sometimes looks like his ankles are twisting all over the place and I don't want him to injure himself. Does anyone have experience with these problems with walking? Any advice? Thanks, Liz mom to (6) PDD-NOS SCD 7 months --------------------------------- 8:00? 8:25? 8:40? Find a flick in no time with theYahoo! Search movie showtime shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Believe it or not, but it might actually be related to vision. Maybe kids have vision processing problems that can be resolved by vision therapy. My son is doing vision therapy now, with great results. A lot of kids with vision issues have balance problems, and do walk on their toes. http://www.visionsuccessstories.com has info. Sue 7 yrs old boy, no more brain fog, SCD 8 mths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Sorry the website is http://www.visiontherapystories.org Sue Quote Link to comment Share on other sites More sharing options...
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