Jordan takes on Cincinnati

They always say it pays to know someone. That has never been more true. Matt has a friend who’s sister in law is a neurologist at Cincinnati Children’s. After talking with her for a couple weeks she was arranging to have us come out there for an evaluation.

Jordan was able to get to Cincinnati Children’s a lot quicker than initially expected. We expressed concerns about his regressing condition to our neurologist connection and what went from “it will take insurance two weeks” turned into “can you get here tomorrow?”. Of course we were going to do anything to get there ASAP.

We would have driven there if we needed to but gratefully a local charitable organization called Wings Flights of Hope came through very, very last minute and flew us there. What would have been a 7 hour drive took only about 2 hours.

There is something to be said about these hospitals that are #1 in the nation. They function completely different from what we are used to. Jordans local neurologist is wonderful but the system as a whole is beat down by inadequate staffing which leads to poor communication and coordination, amongst other administrative issues. Especially now that we have something to really compare it to those flaws are highlighted. The entire patient experience is different when you’re in a facility that is adequately staffed with professionals trained to give top tier care at every level.

Jordan was admitted on Thursday and was seen by some of the best infantile spasms doctors in the country. They put him right onto the EEG and he was scheduled for an MRI. Jordans EEG was still abnormal as we expected but there was a particularly “angry spot” that stood out. They were suspecting that he had a focal lesion that could potentially be corrected by surgery. However, his MRI that came the following day didn’t reveal anything suspicious that could be the cause of his IS.

The next step is to look at genetics. There could be a genetic component to his IS that we weren’t able to find on the epilepsy genetics panel. Jordan, my husband, and I all gave blood samples so they could complete a full genome test which will give us a ton more information. Now, a genetic cause for his IS is not ideal, and frankly will suck. There is no cure for genetic conditions, but it will possibly help with treatment if that’s the case.

The other possibility is that Jordans IS is cryptogenic. Meaning there is no cause for it. As frustrating as this can be it actually would be a best case scenario because these kids tend to have better developmental outcomes.

For the time being they did make some medication changes for Jordan and we are going to continue to follow through with the keto diet until it's appropriate to start to wean him off. Our hope is that our local neurologist will partner up with his team in Cincinnati to relieve some of the travel burden. For now, we will go out there next month for follow up and go from there.

While the news from Cincinnati wasn’t exactly the cut and dry outcome that we were hoping for, I still feel optimistic after talking with a team of doctors who’s focus is infantile spasms. There is still room for new treatments that will hopefully maximize Jordans potential.