Tuesday, March 10, 2015

Where we are right now according to PANDAS/PANS

Its been a very long year and I know I have not updated anyone on how my son is faring but tonight I have the time and the need to share his progress.

Ever since his diagnosis of PANDAS/PANS in Nov 2013 we have been trying to figure out how to reduce the tics because they became a pretty constant staple in our daily lives. We put him on daily antibiotics for 7 months to kill the strep infection that he acquired in Nov 2013 but his tics did not go away. They reduced in severity but they were still very present all day long. The daily antibiotics (as I now realize) were not the right decision. But I was in a state of panic and needed relief so I did what I thought was best.

In the end, the 2 supplements that I will talk about now have been  the catalyst for real change in my son's condition. First: BRAVO Probiotic. Because of all the antibiotics, my son's gut was a mess. He had yeast again and lots of bad bacteria. He even had clostridia. Once I started him on the BRAVO all his vocal tics resolved. I almost didn't believe it could be real because I had been living with them for so long but by the middle of the summer 2014 I knew that his gut must have healed. We did a follow up OAT test and knew for sure that the yeast was gone and so was the clostridia along with the vocal tics! What an obvious connection. You can read more about BRAVO here.

What we were left with was a whole mess of motor tics. Head nods, knee knocks, eye blinks, lip pouts, arm flaps, etc. I noticed that these would increase after exercise, being outside, exposed to pollen, temperature changes or offending foods. One night I was reading all about mast cell activation disorder and it seemed that my son fit the description to a T.

Mast cells are the body's first line of defense when it comes to allergens. Once they sense an allergen is present, they release histamine which then causes an inflammatory response.The inflammation is what was allowing his basal ganglia to be constantly attacked.  In normal functioning bodies, the excess histamine is processed by an enzyme called DAO (diamine oxidase). In Cole's situation his mast cells were over acting and releasing histamine all the time. He needed a way to reduce this load and I started supplementing him with DAO under the brand name HISTAME. You can buy it here .

Within one week of supplementing with the HISTAME almost all of his motor tics resolved! We are now 4 and a half months virtually tic free. I haven't seen anything like this in 2 years. I can't even believe it. I am so afraid to believe it. But I know I have to share this because so many others out there are searching for answers and the medical community is just not up to speed with these types of disorders in children. In fact, the majority of pediatricians have never heard of or do not believe in PANDAS/PANS at all. Thus, parent's like me must seek out doctors that specialize in this and in most cases do not take insurance and charge $450+ an hour.

Where PANDAS/PANS is concerned, no two children are a like. But there are common denominators in many cases and if any of these symptoms mirror your child, please seek care from an integrative MD that believes in PANDAS/PANS. Do the research and get on latitudes.org. There is a wealth of information out there but most don't even know where to begin.

Right now, we are reclaiming our lives! Cole is amazing. He is in 1st grade, gifted and athletic. He has many friends and is learning a 2nd language. I can not be more proud of who he is. Throughout this entire journey, he and his brother have exemplified the true meaning of poise and grace. Me, on the other hand was a wreck and did not know how to handle anything. What I did do right was to take all my negative energy and focus it on finding healing for my son. I do think we are finally on that path. I don't think we are completely out of the woods but I think we have uncovered the key to his healing and with the help of some very amazing integrative physicians and homeopaths and we inch closer every day. 

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