gus update

i have been reluctant to write this (because i didn't want to tempt fate) but i think i can now say that gus is beginning to get better. he has improved a good deal--he isn't as anxious or obsessive as he was a month ago. he still worries about germs, bacteria, big unlikely diseases (like tetnus, diabetes--thngs he does not have) and the bathroom completely freaks him out (if he could wear a biohazard bodysuit every time he goes in there he'd be fine), but he isn't asking me a hundred times if he is going to die because of whatever. now it is more like he asks once, maybe twice, and it is usually for a more logical reason (like he touched the bottom of his shoe and put his hand in his mouth, etc.) rather than i saw a poisonous plant and i think i walked too close to it therefore i am going to die a horrible death. he isn't checking things as much either, like checking twenty times to make sure he didn't eat the poisonous plant...so that is good, too. he isn't in the clear, but he is better.

i think his antibodies may be beginning to die off--at least that is my understanding of the mechanism (via rich) causing this. as the antibodies die off the swelling in his basal ganglia will go down and the symptoms will hopefully recede completely. until the next bout of strep. (for anyone interested, this is an excellent article on PANDAS from the journal Pediatrics.)

it has been rough for everyone, especially gus. and it has been really hard on me because i have been watching my son struggle with a mental illness he probably would not have ever had (at least not in that intensity) and because however i tried to help him it tended to make things worse--if i reassured him constantly that he wasn't going to die because he smelled a funny smell or whatever then he continued to worry about things because i could reassure him. if i didn't reassure him he started to panic. he really involved me in his compulsions, but what the hell can you do? i'm not going to abandon him, but at the same time i had to figure out how to get him to tell himself that he was okay. i don't think i succeeded at teaching him anything about any of this; he is getting better on his own both biologically and psychologically. but, my god, the kid is only six--he has had to develop a ton of reasoning and logic skills that six year olds just normally don't have. gus has always been an exceptional kid in that area (he usually seems older than he actually is), so i think he is better equipped to handle some of these symptoms than the average six year old (or thirty-eight year old) is anyway.

i don't really know where we go from here--gus has seen his pediatrician a ton; he was going to a behavioural psychologist but i just ended that relationship a couple of days ago (and with good cause: aside from the pace being glacial, she was quite rude--she kicked us out of our first session with her because sophie was too fussy--and told me we had to make a commitment to her time if we needed her help again! yes it was all about her...forget about gus...i hate harvard grads). he was scheduled to start seeing a pediatric neurologist, complete with a sedated MRI, but i cancelled that as well because honestly what can they do? tell me that a part of his brain is affected? i already know that--neurosurgery is not even a consideration and isn't indicated for this anyway. (the pediatrician was all for cancelling the neurologist as well--i'm not denying gus care.) now he is scheduled to start seeing a developmental psychiatrist who specializes in children's mental health. i don't know if that is the answer either but it is what i am currently looking at. (rich has not wanted to be involved in these decisions, which is why i am writing in the first person singular. this has been a MAJOR point of contention between us, but we are trying to resolve it.)

this experience has sucked most massively and continues to (just not as badly as before). i will keep you posted. as an aside, the almost 7 year old gus wishes to remind everyone that his birthday is mighty close at hand--march 16th! we are already beginning to celebrate.

sorry, no pictures today.