Thank you for all of the prayers for Hayden! This week we have seen four different doctors and we still have more questions than answers. First the great news...The MRI was normal, which we expected, and we are thankful!!! Hayden has developed some vocal tics, and now sometimes stands with his toes curled under his feet. We saw a "functional neurologist" who I was not overly impressed with, but he told us Hayden definitely has PANDAS disorder and we need to have an IVIG procedure asap before more damage is done. IVIG is procedure where immunoglobulin and blood plasma donated from over 1000 people are slowly (over a three day period) given to Hayden. This is supposed to have over an 80% success rate, and is currently believed to be the best treatment for PANDAS by restarting the immune system (this is how I understand it). Most insurances do not cover this because it is considered experimental, and it is very expensive.
The next day, we saw a the NP for pediatric Neurology at Dorenbecher Children's Hospital. She was amazing, and I feel she really listened to us. She was so concerned, she had us wait until the head of the Neurology Dept. could see Hayden that day. We saw Dr Koch, and he was also great. He was very hesitant with the whole PANDAS diagnosis, but said he can't rule it out at this time. Overall, he said Hayden is so young to have any of these issues, and Hayden has symptoms of many different things, so they are not sure what it is yet. Dr Koch feels the four "boxes" Hayden falls into at this time are PANDAS, Tourett's Syndrome, Dystonia Disorder, and a rare neuro muscular disorder. So they ordered more blood work, and want to wait to see how Hayden reacts to the current round of Augmentin. I am glad we were able to see the head of the neurology Dept, but I am also scared because this opens us up to the possibility of something worse than PANDAS. Hayden is still in pain, but seems to do better when he is rested and when we are able to keep him distracted. He is also eating better. We will know more next week when the blood results come back, and the doctors come up with a plan of action.
Please keep praying!!!!!!!!! Thank you from the bottom of our hearts!! We dearly love all of you, and your kind words and prayers give us strength.
-Scott & Jennifer