demeter

http://articles.mercola.com/sites/articles/archive/2012/04/16/bacteria-on-gut-flora-causes-ocd.aspx

My husband had a Dr mention he might be experiencing gut migraines, but the doctor did not follow up with how to deal with them. He has taken immitrex(migraine medicine), which he uses for regular migraines, and has experienced some relief from the gut migraines. Amazingly, since he began B12 shots in January he has not had any migraines, head or gut which is very uncommon for him. He used to get on average a couple a month. He has a compound hetereozygous mutation on the MTHFR gene A1298 and C677T, issues with proper methylation. He also takes Thorne Research's MethylGuard Plus supplementation. What is your neurologist suggesting as over the counter meds? Having two PANS kids, it is nice to hear that you are doing so well!

I guess I wanted to post to help some of you lessen your "mommy" guilt. My ds has PANS, but I only gave him the polio vaccination after he was 2 years old. My dd has PANS as well, and received more vaccinations since 2 months old, but is less effected than her brother. So, that leaves lots of questions, are our kids prone genetically? Poor immune systems? Prone to BBB issues? I myself have an auto immune issue, and I also have a compound MTHFR mutation. To make things worse I married a MTHFR mutant! So, of course we passed that on to our kids. So this helps keep the confusion of PANS alive!

I love this site....made me look up Sydenham's Chorea, which had me refer to Wikipedia, which got me looking for PANDAS on Wikipedia, where I couldn't find a reference, in our context anyway. Would it make sense for some of our brighter minds to get a Wikipedia reference created?

Dr T has helped our family as we entered the "PANS" world. He was available with no "wait" time when we finally stumbled across the idea that our ds probably had PANDAS. He sent blood work scrips out immediately, discovered myco p in ds and dd. He also brought awareness of our ds's weak immunological status. I have had him answer the phone on a weekend evening to help, when ds had a recent major exacerbation. I not only feel confident in his knowledge but also feel he cares about our children!

Our family just started the Methyl B12 shots as well. Someone had mentioned numbing cream for my dd whom had anxiety over having an injection. The needle is incredibly small and she had to ask if it was over! Not a big deal for her on the second go around. We put a small amount of the numbing cream (from a compounding pharmacy, prescription needed) on a bandaid, then wait 20 minutes. My ds has recently had a major exacerbation, including new tics and OCD. Unfortunately, we added several new things to his routine, B12, 5MTHF, and Prednisone. So, we are unable to decipher what caused the behavioral changes that came on so suddenly. I was going to post to see if others have had reactions to the B12 shot or Prednisone...heck he might just be getting sick. I too am interested in others feedback, as you put "it the good, the bad and the ugly"

Unfortunately, my contact with Children's neurology makes it appear that they have not changed their outlook on PANDAS. Here is an email I received from a Dr at Seattle Children's this past summer. I do not subscribe to the PANDAS theory. PANDAS is very specifically described. Most people who think their child has a=it are grasping for straws. I have no special treatments to offer. I have no idea why I am on that quack web site. Dr. Ferri I found this Dr's name one of the PANDAS websites. I believe he has since been removed. My son also had classic PANS symptoms with sudden onset. We are being treated elsewhere with great success, he has Mycoplasm pneumonia. Don't be discouraged if they are not receptive, and hopefully you run into a progressive Doctor.