We started Potassium Bromide a few weeks ago. This is a medication that is considered "old school". It was used for hundreds of years, but fell out of doctor's circulation when bigger and better Anti-Epileptic Drugs (AEDs) came along. It is still widely used by veterinarians, to treat dogs with epilepsy.
Since Cole is severely intractable (hard to treat) our treatment team is at a crossroads where we are ready to use out-of-the-box treatments. Bromide takes a very long time to reach therapeutic level, about three months. We are going extremely slow since Cole is so sensitive and Bromide has an incredible half life. It stays in the system for weeks, versus hours like other drugs. You can not get it at your local pharmacy. We have been using a compound pharmacy that is out of state to make it for us.
So far, it has been good. Potassium Bromide is a salt, so it dissolves well in warm water and is easy to push through Cole's g-tube. We will just have to be patient and see if it makes a difference. We are really looking to decrease myoclonics, since he is still having on average 400 a day.
One concern was that Bromide can interact with chlorine and patients are cautioned to stay away from chlorinated water. However, there is no research to back this up, just hearsay from an organic chemist who is certain that the reaction between chlorine and bromide would cause an effect similar to
the bends in SCUBA diving. Our doctor gave us all of the necessary precautions and warnings. Us being us...we tried it out in lots of different environments. We poured three capsules in the pool, waiting for effervescence. We tried a cap in the hot tub, to see if increased temperature would cause the bubbles. We called vets and asked if they had ever heard of cautioning pet owners to keep their animals away from pool. Their opinions and alll of our tests turned up negative. We then decided to not totally submerge Cole and took him to our local splash pad.
He had a good time testing our hypothesis!
No problems. We showed the pictures to his doctor and he laughed. Apparently, we have proved ourselves. We always keep a close eye on Cole anyway when he is swimming. I am just glad that we didn't have to take something else that he loves away from him.
We also started Prevacid, after finding that his upper GI series revealed he is having reflux, which could be the reason for his gagging all of the time. Since starting both of these medications, Cole's seizure control has been better. The Bromide is certainly not therapeutic yet, and Prevacid is certainly not an AED. Who knows?! I am just grateful that it seems like we have broken out of the cycle of needing rescue meds
every day.
I love that this conference not only gives you the opportunity to connect with other families, but with incredible doctors; who could end up helping you in the future.
The consultations are incredible and you have the chance to have one on one time with the best doctors in the world...without having to pay a dime! I try to tell everyone that you are entitled to a second opinion, and a third and a fourth. You are the best advocate for your child and should totally trust your doctor and treatment plan.
I had the opportunity to once again share meals with these people and get to know them outside of their offices. It was something that really impressed me at the first conference.
We had the opportunity to hear from doctors around the world with the magic of the internet. There were presentations from Italy and Australia, even though the doctors were not physically present. We can give each other feedback and spur ideas for new research and treatments. It also gives us the opportunity to laugh. I made Dr Miller laugh more than once with a recount of our summer. See, even he thinks we are never boring ;)
