In Sept (2011) 7 mos post Botox we hit another roadblock. He stopped pooping, we figured we were ready to go back into OR for another round Botox. We started irrigating and contacted our local surgeon who told us he was no longer accepting ANY insurance. Our deductible is huge so it was not even an option to go see him. Pediatrician suggested Dr Kuenzler at NYU who I had read about on some of my HD boards.
We went to see him and also got to see Dr Coran who has done a TON of HD research (most of it at U Michigan). So we were very lucky to get two opinions at our visit. They wanted to take JC back into OR to re-biopsy, clean him out and possible Botox. They also thought low lying EC (enterocolitis) was happening. We went home w/ a Rx for Cipro and then JC just starts pooping again (no Cipro yet, bec it was REALLY hard to get).
We start Cipro, pooping becomes really regular and Dr K wants us on it long term. So we do about 9 weeks total and by Dec. pooping slows down/stops and EC is definitely back or flaring up or…..? This all started a few days before Xmas. Our new surgeon wanted us to go to local ER but I was pretty certain they would not admit us bec Joey seemed fine, the irrigations keep everything managable from home. We stop Cipro (on our own) and start Flagyl through the irrigaitons.
Our new surgeon who is in NYC will be opening an office in NJ in Jan so we will go see him then. In the meantime we irrigate 1-2x per day and try to get him back to pooping which happens usually for a 24 hr period and then things stop again. It is really really much harder now as he fights us so hard and screams for “Mommy to please stop now, it hurts”. It is truly heartbreaking.
My new conclusion is that is sphincter is not tight all the time. he gets sick (ec) and then the sphincter tightens up and his pushing seems weak. So if we do another round of Botox it will be to get over this round of ec and prevent ec for a little while. we’ll see