Cincinnati One Month Later

Its been a month since we made our first trip to Cincinnati. Over the past four weeks we’ve titrated Jordan back up on Vigabatrin and zonisamide. We also discontinued the keto diet which wasn’t proving itself to be effective for him.

Jordan is not completely seizure free but his spasms have drastically reduced. On his previous medications he was having about 4-5 clusters a day with full body flexors. Just this past week he has had days where we only caught one cluster and they look more like eye rolls or subtle jerks of his arms.

What I’m more excited for is that his development seems to have sky rocketed over the last week and a half. He is making more vocal sounds than he ever has, he is holding up his upper body for long periods of time, and he is even starting to push his butt up to get into a crawling position. Getting the go ahead on stopping keto has also been so helpful. If the diet was actually doing something for him I would have continued but it wasn’t the answer for us. If anything I felt like it was hindering his development even further by being so restrictive.

We also received the results of his genetic test. There was no major genetic abnormality found which is good, but they did find a variance of unknown significance (VUS). Which basically means there is a gene that could be related but at this time they’re not considering it directly harmful. The gene they found in Jordan is also so far back in his gene line that they don’t feel like it could be clinically significant. We have a kit to test Matthew who is healthy and with no epilepsy. If Mathew has the same gene they would rule it out as being a problem. For now Jordans case is still cryptogenic- meaning no cause.

We are scheduled to head back to Cincinnati at the end of the month and he will have an EEG and follow up with his doctor there. I look forward to the visit and hope for positive results every day.

Our experience with Cincinnati has been nothing short of exceptional. They respond and treat you like you’re their only patient. This is an experience we aren’t use to. We still love Jordans neurologist here and we don’t have any hard feeling about the way things started. I’m generally not a grudge holder, I understand everyone is human, and people don’t know what they don’t know. Everyone has knowledge and expertise in their own rights and I can’t punish someone for not having the same knowledge as someone else. It was my responsibility to realize that something more needed to be done and it was time for a second opinion.

The only downfall of everything is all of Jordans services are currently out of network so we’re paying out of pocket. I’m trying to fight for his insurance to cover it but either way I’ll make it work if he’s getting the care that he needs. So don’t be surprised if you find me selling feet pics.