Clinic

Sorry for the late post. Last night I was banished to our little apartment down the street. By now we all know no sleep+stress+hospital food on an irregular schedule...does not equal good things for Niki. I, however, forgot that the apartment did not have internet.

Here is the post I had started before I was sent to my room.

Today we had the opportunity to attend the Ion Channel Clinic at Miami Childrens Hospital Brain Institute. This is one of the main reasons that we have chosen to focus Cole's care here, far away from our home. This hospital has the only group of specialists that focus on Dravet Syndrome and sodium channel disorders in the western world. The others are in Italy and France. Lovely locations, but no insurance is going to foot the bill :) There are other doctors in the U.S. that specialize in Dravet, but this is the only complete group that we are aware of. For a population that only has 1,000 in the world, for over 50 patients to be seen here, it means that they have the knowledge, experience and resources to treat someone with such a rare illness. We met some of the staff at the IDEA League conference in August 2010, and have had a few friends who have traveled here since then. We have been waiting for 9 months to attend this clinic. After fights with our old insurance, trying convince other medical professionals, a move, new insurance and negative time off..we were ready for this day.As a medical professional in my past life, I was more than impressed. The structure they have set up is any parents (or social workers) dream. The waiting rooms are small, so you can always see the desk and they are not overcrowded. Beautiful murals decorated the walls of the hospital, but these are just white and large television screens are in each corner. However, if your child is prone to overstimulation, they have a separate room the has hardly any patterns, no tv and some some toys, set off to the side. They really have thought of everything. On clinic day, there are no other neurology appointments at the Brain Institute. Only the sodium channel kids come and it is more like a family reunion than a doctors appointment. The kids run free in the waiting room, and you don't have to worry about them disrupting anyone, because all of the staff and other parents already know their name. You are then shown to an exam room and you just stay there as the doctors come to YOU. In one room, on one day, you can see 5 doctors..and QUICKLY! That is unheard of in other hospitals I have been to. The dragging your child back and forth on different days, at different times can be life consuming. You have to rotate your entire schedule around the specific openings, because who knows when they could see you again? It is so refreshing to know that on the second Wednesday of every month, if I needed an appointment, I would be seen. You can make other appointments for emergencies, but wow-that would just make life so much more simple.After clinic and seeing your doctors, everyone goes to the conference room, where they serve lunch and have a speaker. Once again, it is like a family reunion with the chatter floating around the room containing words like tonic-clonic, stiripentol and respite, instead of conversations about Uncle Albert's latest knee replacement. After everyone is finished eating, the speaker (usually one of the doctors from the clinic or another staff member from Miami Childrens) starts a discussion about a certain topic. The specialists are all there, so they can hear the parents concerns, wish list and progress from the previous month. There were physicians holding children during lunch and interacting with everyone like it was a true family gathering. This hospital realizes that it is not just about the medication and the diagnosis. Having a sick child is about an entire lifestyle change and every aspect is affected. Brian and I just stared in wonder most of the time. This hospital is so beautiful anyway, we felt like we were being transported to some sort of medical Disneyland! All of the pictures are from the luncheon in the conference room, so obviously it is not geared towards kids. I will post pics of the beautiful grounds and rooms soon!

They usually have someone to watch the children in a room across the hall during the speaker, so the parents can participate in the discussion. They pre-arrange for someone to come and sit with your child if they are on the unit so both parents can attend. Cole prefers people with carts of toys to us anyway :) Everyone signs up to get and e-mail afterwards with contact information of everyone attending and leaves with well wishes from doctors and parents alike. No one cares if your child starts screaming and clapping in the middle of a presentation. Everyone also has developed the weird sense of humor that is just like yours. It was truly a great experience.For anyone who is reading this that has a child with Dravet Syndrome, I encourage you to look into Miami Childrens Brain Institute. The staff is warm and friendly and the treatments are cutting edge. They get two thumbs up from me, and that is kind of hard to achieve.