Hello everyone and thank you so much. I hope I can answer everyone. I figured that about the chats, I myself forget to go back to check sometimes, and I figured it was hit or miss. Also, Beeba you are so right. I myself refrained from responding to a parent of a child with chiari for the same reasons, just afraid to give information that could be potentially more harmful and also because fo the difficulty Gavin has had. We have a Care Pages that my sister set up and so many people helping us with prayer and the emotional support but it's the crux of it, the medical stuff I was seeking here. It's just such a bear to treat and every case is different and every dctor has a different slant.
After receiving the positive genetic test for celiac (not the antibodies) we eliminated gluten and took him to the Celiac Center at Columbia. She said he is definitely gluten intolerant but without an endoscopy, could not make an official dx of celiac. She said it would be impossible to determine what caused the severe neuropathy and inability to walk but advised us to keep on doing what we were doing...neurontin nerve pain cream (topical), mobic 1x a day (oral), physical therapy 2-3x a week, vitamin D-1,000IU per day, gluten elimination, meditation, prayer, tai chi, and glasses to correct stigmatism that showed up as an abnormal VEP response. and of course, time. Time to heal. The neurologist wants Gavin to have IV venofor to treat his low ferritin and rbc issues but hematologist and pediatrician think otc iron but neurologist thinks he can't absorb and it's not iron, it's storage? He just had more blookdwork last week so we'll see.. Tracy, we've heard not so great things about soy too, he can not tolerate milk so we recently switched to 2% organic lactose free milk.
Emmaline, thank you too, we are considering the Paleo diet as we have a friend with MS (when the neurologist first met Gavin, he said he was presenting with MS symptomatology). He has skin issues too and yes bruises around his eyes and on his back and body at times. The barometri pressure and physical exertion or the common cld can exacerbate symptoms but when his cheeks get red or he gets these odd red bumps with pain, I wonder if we're not missing something else. We think it was a perfect storm of recovering from his second brain surgery in less than once calendar year and a cerebral spinal fluid leak, triggering an auto-immune response but who can really say?
Gavin's first surgery was dural scoring and shaving of C-3 andC-2 and removal of C-1. His 2nd surgery was duraplasty with bovine pericardium which resulted in a csf leak and two psuedomeningoceles, tonisilar reduction, more bony removal because it grew back, and removal of scar tissue that the ns said was like the consistency of bone. Ns said he knew what Gavin was feeling because "the chiari was huge! (23mm) and there was so much scar tissue. Before his 2nd surgery, he had complex sleep apnea and would stop breathing even in the middle of the day, we would wake him in the night to take a breath. He crawled because his feet hurt so much. His neck felt like he was being strangled, or someone was pressing on it, all the time. He still has central sleep apnea but thank goodness the obstructive is better. A different ns said because so much bone was removed to make room in the back, and his brain stem is very near to a 90 degree angle (they call it ventricular compression ann basilar invagination), and he has a Grabb angle measurement of almost 10mm, with 8+ considered abnormal, they recommended occipital-cervial fusion surgery, takign bone from his hip-6-12 month recovery). We said to ns, show us one 6-8 year old, with leg pain and/or nerve pain, who had the fusion and is out of pain and can walk, and then sign us up, but they could not. They told us we would be negligent no to get the surgery but thank the other things came up.
Overall we are grateful, and consider it a success. Gavin says if he did not have pain, he would have another chalenge because everyone has to have something they are challenged with. It is such an invisible disability though. If I had a dollar for every time someone says to us, "he looks great!"
God bless you all. Get a good night's sleep, eat as healthy as you can for your body, limit your triggers, and focus on everything you have to be grateful for. I'm sorry for your pain and for Gavin's.