Options and Answers

Our trip to Milwaukee was a successful venture. For Ayden, the fact that we stopped at Rise and Roll both on the way and tonight made the trip, but there was much more to it than that. We met a new neurosurgeon and neurologist at Wisconsin Children's, both doctors were very helpful and we feel like we learned a lot. Most importantly, they truly cared about our Bubba and wanted to give us the best answers they could.
Ayden has two issues at the moment:
1. Head pain that is causing aggressive behavior.
2. Seizures - Myoclonic jerks and drop seizures causing decline in muscle movement and cognitive function.
Today it was made clear that both of these are valid concerns but likely caused by two different issues. For the first issue we can add a device to his current shunt and hopefully fix any possible overdraining. The procedure is about 45 minutes and outpatient at that! Since we do live over 4 hours away he would like us to stay overnight to insure all went well if/when we do this. This is something we have suspected for quite a awhile so the quick fix is exciting.
Next, the seizures that answer is two fold. First, from the neurologist's standpoint we will try a VEEG with IV dose of a medicine he used to take to see if there are any changes in the seizures. If it works we go home on the medicine, if not we go home on another medicine and hope it works. The neurosurgeon found a centimeter of the right hemisphere that could be removed with another surgery, but we have no guarantees it will work so we are willing to try the medicines briefly(this is key). The benefit of the VEEG medicine scenario is that Wisconsin can then look closely at his seizures and we need to "try" other options first. The neurosurgeon explained the surgery and it would be much less invasive than his previous two hemispherectomies. There are always risks, but allowing our son to have drop seizures and continue to lose function with continuos seizures is full of risks too! The most powerful statement all day was from the neurologist,"His declines are very concerning and there is obviously something wrong that needs treated." We have waited for those words and it felt good to be surrounded by a staff that seemed to get it.
We have only sought a second opinion once before when Ayden was first diagnosed with Tourette's syndrome. That opinion was reversed days later and I am so glad I trusted my gut then. I think the same has to apply here and we are glad that a fresh set of eyes could lead to answers. Now it is back to waiting on calls from Wisconsin to get everything set up and of course tracking data. Thank you for all the support and prayers. We truly feel that we are on the right track to a healthy Bubba soon.