I apologise in advance for the length of this post....
I would really appreciate any input at all.
My DS10 has been in a severe flare up of his pandas since late December. He had been on prophylactic azithromycin and doing well since early September (about 80%). Just before Christmas my other two kids contracted pertussis. Being as DS was on the azith he was covered against the whooping cough. However he started to become symptomatic (severe anxiety and ocd among other things) a couple of weeks after they became ill. The summer holidays (I'm in Australia) have been a nighmare... DS was worse during January than we have ever seen him. We were close to hospitalizing him. GP changed from Azith to augmentin fearing that he had become resistant to the azith. We also had three weeks worth of prednisolone. Nothing worked. The prednisolone has ALWAYS brough him back to us but not this time. Test showed that antidnase had risen again 450 to 570, asot stayed normal at high 100's . But negative strep swab. IGG was low. All else normal. We became desperate and after flying to Sydney to consult a pediatric neurologist we agreed that Lovan (SSRI) was our only option as he was suffering too much. I have resisted this for the past 2 1/2 years and have always found a combo of abx/pred gets us out of trouble. (never more than 80-90% but not enough to want to go for what I personally feel is a bandaid measure of an SSRI) The Lovan is doing its job and the OCD and anxiety have eased. (I'd say we are traveling at around 60%) but there are still many issues going on and I feel as though the SSRI is masking the problem. Which seems to make the drs happy....
DS has had a blocked nose on and off for weeks with lots of bloody mucous. I keep asking the drs why they think this is but because the bloods are all normal (ie show no active infection) they keep glossing over it. So...back in 2011 a nose swab showed moderate staph growth and he was in a flare at the time (it was ignored as lots of people have staph in their nose) . He also recently got a strange rash on his thighs like petechiae ( the one you look for in meningitis etc...scary!!) so at the visit re this rash - as the paed ordered bloods to try to figure out what was causing the rash - I suggested to the him that we swab for staph again. Results: Bloods are all normal and show no reason for the rash except....The swab has come back as heavy growth of erythromicin and penicillin resistant staph. (both of the antibiotics that he has been taking) So paed has given us 10 days of cephalexin. (250mg 3 x daily)
We are also in the process of trying to get ivig with some support (although he is skeptical) from the paed and the neurologist in Sydney.
My dilemma is now that as he is on the Lovan and showing improvement how will we know how well the cephalexin works?? Or even the ivig if we get it for that matter. Im too scared to take him off the SSRI but really want him off it!
I would appreciate any and all thoughts/opinions on any of the issues I have written about here...sorry I know there are a few different topics.... The use of the SSRI, ivig or not ivig, staph as a cause of symptoms?
Thanks in advance