10 years ago I rode a friends Pugsley and ICT while we were on a guys trip. I loved every minute of it. It took me a while to pull the trigger, but this past week I bought an ICT. Took it for the first “off road” ride this weekend on Mission and Pacific beaches. This thing is fun. Feel like a kid again. Can’t wait to get it on some trails.
I am a passive viewer of this sub and have found great information on here. Our boy, Oliver(2.5 yo), has been dealing with idiopathic seizures for 9 months now. They started as focal and progressed to more generalized, but no event has lasted longer than 30 seconds.
The first med they put him on was Keppra, which was working alone up until March. At that point pheno was added. It took him a while to adjust, get his feet under him and all his bloodwork was normal up until two weeks ago when he developed a fever abs generally did not look well. Initial CBC showed extremely low neutrophils, but red blood cells a a platelets were fine. They went on the assumption that the pheno was causing his bone marrow to not produce white blood cells.
They stopped the pheno and changed to zonisamide. He was hospitalized for 6 days and then they sent us home with antibiotics to help with any possible infection. His WBC was still low, but they were comfortable sending him home with us as he had a greater chance of developing an infection in the hospital. The plan was to watch him, recheck his blood in hopes that removing the pheno would allow his WBC to naturally increase. That was last Monday.
Yesterday he had to be readmitted to the hospital with rapid breathing and a temp of 104. Turns out, their assumption, he is a rare case of his body resisting the zonisamide. So that is where we are at. They removed the zonisamide, only on keppra at the moment and giving him steroids. They are sedating him and doing a joint tap (determine the infection) and a bone marrow biopsy (to rule out cancer).
We are concerned with pheno and zonisamide off the table, where does that leave us with meds to control his seizures? Anyone ever dealt with this?
Thank you for taking the time to read.