Bromide

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.