DSD4

Home from the Dravet Syndrome Spectrum Disorders 4 Biennial Conference! I have been working for months and months to prepare for this and I was so busy the entire time. I am so glad that we got the opportunity to participate in something that we are passionate about.

When I was deciding what to pack, I had to conclude that I have a severe addiction to stripes. It might be hereditary.I spent a lot of time putting together these bags for the families and doctors. Special shout out to my amazing committee!I even had Dr Dravet herself sign my book! Can you believe that she didn't have a copy? I was pleased to be the person to present her with a copy of her own book. It was amazing that we were able to give these to every family.
She is not a fan of getting her picture taken. I got a better photo later on in the week. So much happened! We saw old friends, made new ones and learned a lot. I will need to break it all up or the post will be a mile long!

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.

Celebrities

We finally got to meet our friend Evan and his dog, Mindy! They just got home from 4 Paws for Ability. You might recognize Evan from his appearances on Good Morning America, stories in the Washington Post and other publicity based on his book "My Seizure Dog".

I have actually been friend's with Evan's mom for a long time, even before we moved to D.C. We are so happy for Evan and the impact that he has made. Slugger really enjoyed getting to play with Mindy and show her his home turf.We actually met Mindy when she was just a ball of fluff, on the day that she and her brother came to 4 Paws for Ability, while we were there getting Slugger. It was great to see her all grown up and with her special boy. Cole really enjoyed getting to spend time with Evan and showing him all of his toys. We can't wait to see Evan and Mindy again soon!Mindy's television debut was last week on FOX News, you can see it HERE! I teased Evan and told him that we were so lucky to have celebrities at our house ;)

Dentist

We took Cole to the dentist for the first time! Based on recommendations online, I chose a dentist that was known for doing well with special needs patients. The office was beautiful and had a lot of distractions for kids. The staff was wonderful and we really liked the doctor.Cole loved getting to blow up gloves with the air. It took him a while to settle down even though there was a magnificent dragon coming out of the wall and he is obsessed with dragons (and underwater creatures) lately. They were extremely accommodating and Cole did not cry.
The doctor was not worried about his two teeth that have ground down during seizure activity. She said to worry only if we see a visible nerve.

We go back in 6 months!

Brotherly Love

We love it when we have a chance to visit Slugger's siblings. Lucky for us, two of them live in the D.C. Metro area. We stopped by and saw his sister, Samba after a doctor's appointment. They really enjoyed running around and Samba's favorite-wrestling!It was hard to get a picture, they were moving so fast! I think it is great that these two still recognize each other. They act completely different than if they were with another dog. Even when Sid's family member came to our house, without him, Slugger acted exactly as he does when he is with Samba or Shaggy. He could totally smell his brother and was really disappointed when he could not find him. He moped for an entire day after his scent left.
We love Samba and her family. Her mom even came all of the way to our house to help me clean. She knew that this summer has been hard and I have been backsliding on housekeeping ;) I really appreciate friends who can read between the lines and who sacrifice their time and energy to serve us.

I can't believe that the S Litter is going to be 2 soon. Time for a party!

Lighten Up

Kids, it seems like it has been downright depressing around Warriors lately. I'm sorry it has been a little towards the dark side. Yes, it has been rough lately and it seems like our universe is revolving around seizures, but we still find time to laugh and do semi-normal stuff. Because who ever said we were trying to be normal :)

Things like making Bacon Cheddar Scones three times in two weeks. Um, maybe this is why my pants don't fit? I curse my friend for introducing me to them.Things like trying a new, matte color and trying to prove to myself that red lipstick is a state of mind. Hey, maybe if I can rock it in Target I can rock it on date night.

Or having doggie family reunions after another marathon doctor's appointment. The bone health clinic is SO not on my good list. Slugger was so happy to play with his sister, Samba.
Welcome to DC, where ghetto gas stations are the norm. They didn't even try duct tape, just went for plain old clear packing tape to hold it together. Apparently, the owners were not raised on a farm, or they would have done it right the first time. *wink, wink*

We will try to take a little time each day to lighten up. You should too ;)

Dr Niki's Report

There have been questions about clarifying Brian's injuries. My Emmy screen play was really not clear enough and I tried to not make him look foolish. Yard work can be dangerous ;) It was more about how crazy our day was. I am glad though that so many of you have asked about him.

He finished cutting up the tree. Then he got attacked by a great white shark that came out of nowhere!

OK....so maybe, not a shark. But that would be an awesome story and one that my dad would totally tell ;)

He has 14 small puncture wounds on one leg, right by his knee, from a shark tooth hand saw. I will spare you pictures. There really was the blood, the almost fainting, the banging on the door, the seizures. I told you, no one could make this stuff up. He has a nice limp and we are watching it for infection. AND he will probably continue to live up to his reputation of not being very "handy". Hey, the man has many other talents.

You know that you can always tune in for more! We usually like to be a comedy, but lately it has been a drama kind of series. Coming up this week-Cole finally gets his wheelchair that I ordered in April. We head back to the bone specialist and Cole's first trip to the dentist. Gonna be a nail biter! haha

In good news: It is 11:00 pm and Cole did not have a major seizure today! Plenty of small ones, but hey...we will take what we can get! It has been 5 weeks with only 4 days that we did not need rescue meds. We can only hope that he is turning a corner.