So I spent all that time telling you all how much progress I made with my son and how I basically healed him and his tics ceased. Well, its true we really did "get there" ......until November. Early this November my son's tics started showing themselves again. They were mild at first and I fussed with his diet thinking he developed another food allergy. I thought I had figured it out and removed strawberries from his diet and things seemed to get better. However, after two days his tics came on full force with a fury I haven't seen since May. I was terrified and confused. All the work I had put into healing my son, what was it for? I felt like a lie, a farce. How could I have written this blog so sure that I accomplished something that doctors deem impossible? Well, the truth lies somewhere in between.
I took both my boys to their regular pediatrician for a check up and on a whim I asked her to give my son a throat culture. She didn't understand why I was asking because he felt fine, ears, nose and throat were unremarkable and he did not have a fever or a cough. But low and behold the test came back positive for strep and she looked at me and asked how Cole's tics were. I mentioned how they had skyrocketed in the past week and then it hit me - he may have PANDAS.
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep is a controversial disorder that many doctors either don't believe in or don't know enough about it or how to treat it. The National Institute of Health has been investigating cases of PANDAS for the past 12 years and has made progress in their research but a diagnostic test to confirm this disorder still does not exist. Instead its more of a clinical diagnosis made based on symptoms and response to antibiotics.
Many cases of PANDAS experience a sudden onset of either OCD or tics or both. However the range of neuropsychiatric symptoms is much greater. But in all cases the child is making strep antibodies that instead of attacking the bacteria are actually attacking the basal ganglia in their brain - causing the OCD/tics. So when a child becomes infected with strep the antibodies increase and the neuronal damage occurs.
Doctors have identified other bacteria/viruses that can cause the same effect in children as the strep bacteria does. These cases are being called PANS or PITAND but the common denominator in all of these cases is that these neurological conditions are brought on by an autoimmune reaction.
Even scarier is the belief that potentially 25% of all children diagnosed with OCD/Tourettes or ASD could in fact have PANDAS but are just not being treated for it.
Thankfully our Holistic MD (Dr. Taz) is well versed in PANDAS and gave Cole a blood test to confirm what we already believed. It came back showing elevated ASO and Anti dNase-B titres which meant his body was producing strep antibodies in response to the strep infection and this all coincided with his sharp increase in tics.
We put him on amoxicillan and then switched to keflex and over a period of 10 days we saw a dramatic reduction in his tics. He is almost back to baseline now and I feel relieved that we have a better understanding of what is going on inside his body.
All the work I did on his diet/yeast/methylation was perfect as we come to find out. Diet is half the battle for these kids with PANDAS. All foods causing inflammation must be removed and poor methylation addressed.
But the bigger question is WHY are these little kids having autoimmune disorders? Why is this happening to our children? I will address this in my next blog post. For now, know that we have come a long way and with God's guidance we have uncovered the source of my son's tics. I feel blessed that we are finally on the right path to healing.