Last week we did another IVIG infusion and there was no change in her seizures. She is having between 2-3 short grandmal seizures every morning in her sleep (between 6:30-8:30am). Sometimes when she takes an afternoon nap she will have very short ones while sleeping. She is still doing pretty good during her awake time. We increased her felbatol med at the beginning of the week to see if it would help, so far no change.
I talked to Dr. Tuxhorn at the Cleveland Clinic today to get her input. Her thought were to try to keep working with the felbatol increase for the next 2 weeks. If that doesn't help to try bromides. From my understanding bromides were one of the first drugs used for seizures many many years ago, before anti-seizure meds were used. It is no longer FDA approved and used only in the US in vets on animals. It is still used in Germany were Dr. Tuxhorn originally practiced before the Cleveland Clinic. She is pretty much the only doctor in the US that has experience working with Bromides. It is a pretty tricky drug to use and you have to have someone who knows how to use it. When we were at the hospital at Primary children's in Dec and I mentioned that we were thinking Bromides the on-call neurologists mouth just dropped, it is just unheard of to use now. The reason she wants us to wait 2 weeks is she is currently working with another doctor on a formulation of the bromides so we will be able to get a local pharmacy to compound it. The reason she is thinking Bromides is they are very effective against grandmal seizure type. With Doose syndrome a lot of patients continue with these nocturnal grandmal seizures that are very resistant to medication. Dr. Tuxhorn is working with a lot of other Doose families and is trying to come up with a possibility to help these kids. We feel so blessed that we are able to see a doctor that is doing on going research and knows so much about such a rare and terrible disorder.
On a positive note! Lauren got approved for Make a Wish. Her physical therapist kept mentioning that we needed to apply. After our last hospital stay I put in her application and forgot about it. Make a wish contacts her doctors and they are the ones who decides if she is "eligible". We should be meeting soon with the volunteers to go over what Lauren's wish would be. Since she is not verbal enough to say on her own what her wish would be, so we help think what she would like. They told me that they send half of the children to Walt Disney World, they say that it is a trip that can't be created on your own. They have a place called -give kids the world-where they stay, it is an amazing place (http://www.gktw.org/). From what I understand they have villas where the family stays, an ice cream pallor, miniature golf, movie theater, pony stable, etc.
Along with the wish they grant she is considered a "wish child" and we are a "wish family" for 5 years. That means she gets invitations to different events during that time. We just got our first invitation in the mail, it is a "Princess tea party" with the junior miss contestants. Lauren and her 3 sisters all get to dress up as their favorite princess. As you can imagine we have some very excited girls. It is such an amazing program.
Tami