Well it's been a while since we posted but we have news! Many of you may remember that, in 2012, Brady took part in a clinical trial for a potential treatment for Angelman Syndrome. The medication was an antibiotic called minocycline. We have been fairly quiet while we anxiously awaited the results to be published....now they have been published and we can speak freely about our experience.

So let me backtrack a bit before we I begin to share our experience. Brady has struggled with seizures since 8mths of age. He is well known in the community because of the severity of his seizures....but I like to think that maybe it's in part due to him being a cutie; however,  I am a bit partial :) Anyway, in 2009 he was placed in a coma due to seizures and again in 2011 he was placed in another coma, also due to seizures. We had gone through some pretty dark days by the time the trial was announced and we were able to apply.

During his last coma, we were all voting to win money from an amazing company called Vivint. I sat by my sweet boy's hospital bed and voted faithfully every day. I begged our friends and family to vote and most did. You see, we were experiencing something that many of our families have or will experience, so we knew all to well the significance of winning this money for our clinical trial. It was a surreal experience, to say the least. Our community rallied around us and many dedicated their daily votes to Brady. Guess what...we WON that money! Brady recovered from his medical crisis and we signed up for that trial at the first of 2012.

When we found out that he had been selected, I literally cried. It was like the stars had aligned and I knew that he was meant to do this. Nothing happens by coincidence. Even if we don't
 always understand or realize it, God has a plan for each and every one of us. Brady was in that coma July 2011, and had fully recovered by the time the trial selection started. He was chosen and we were one of the first to head to Tampa to a clinical trial for a potential Angelman treatment.

So in a few months we headed to Tampa to start this medication. We had no expectations but hoped for the best. We gave the first dose two days before we left Tampa. The first thing we noticed was when we stopped at a store on the way home, Brady held my hand as I walked to the cashier and asked for a price. She flipped the toy over, told me the price, and I took it back to the shelf. In a few minutes Brady let go of my hand, grabbed a toy and took off to the cashier. I followed behind him wondering what he was up to and to my surprise he handed the cashier the toy. She looked at me like "what does he want" I said "ummm, he wants it know the price", lol. She told him the price then handed it back to him. He was perfectly content and took the toy back to the shelf.

Then in the way home, Brady was happy and didn't fuss...this is not normal. He has always screamed when we went in long trips. Heck he screamed for the 7hr drive to get to Tampa. But our ride home was different. We tried to dismiss this as a coincidence because there was no way that we could possibly be seeing changes after only a few doses. Needless to say, it was a very happy ride home :)

So as the 8 weeks rocked on, we began to hear more vocalizations, he began repeating some words that we asked him to repeat, he began following simple commands, he started showing an interest in the iPad, finding his favorite movies on Netflix and actually watching them and seemed to just be more aware of his surroundings. The biggest thing was that our boy who had spent much of his life wining and fussing for hours at the time, hitting, pinching, and pulling hair, had begun
 to mellow out. There were too just many coincidences to continue to consider them all coincidence.

His behaviors began to disappear and a ray of sunshine began to peak through the clouds.
Before the trial, people used to say "my child is perfect the way he or she is" or "I don't want to
change who they are" well let me tell you, a fussy boy who was unhappy in his own skin, is NOT who my boy truly is. He was not that "happy Angel" that some got to take comfort in. I heard people say, well at least our kids are happy, but Brady wasn't. To date, Brady is a beautiful happy boy. He is stubborn like any 12yr old boy but mino has allowed his personality to shine. He is silly, sassy, and  entertaining like his mommy and bullheaded like his daddy, haha.

His communication is amazing and we have gone from 10 words pre-mino to currently 26 words. Did I mention that he has been seizure free for three years, aside from two little absent seizures? Also, did I mention that he now has a normal EEG? I will post pics of before and after EEGs and you can decide for yourself if there is a change.  I don't know why mino has worked so well for Brady but I just know that it has changed our lives. Maybe it's a combination of finally having seizure control, which I attribute to mino. Maybe the VNS (device implanted for seizures)plays a part in it. Maybe it's all of the above, I really don't care...I'm just happy to be where we are now. 

I also wanted to mention that we have been able to eliminate one seizure med and are now only on two meds. Our VNS settings are also much lower than ever before. Do I think mino is a cure, absolutely not. Do I believe that mino will allow us to eliminate all seizure meds, no. Do I believe in my heart that mino will be a treatment for some, absolutely. Again, it's not just about what all it has done for Brady but, if I were going to really  believe in a cure/treatment, I needed proof that AS could be changed, and mino has given us that. 

It may not work the same for everyone but we can all take comfort in knowing that AS can actually be altered. Years ago when Brady was diagnosed, they said do therapies, work with him at home, but for the most part just take him home and love him....AS will never be treated, let alone cured. I say to those "professionals" may you choke on your words, ha! Foundation for Angelman Syndrome Therapeutics has given us hope. This organization does not mess around :) They are already gearing up for the next clinical trial, which could be even bigger than the mino trial. To learn more, visit www.CureAngelman.org

So in summary, these are the changes that we have seen since beginning mino: improved cognition, major behavior improvements, more vocalizations, improved communication, overall awareness,seizure control, improved focus/concentration.

Would I recommend mino to anyone? Absolutely, 50mgsx2! Feel free to shoot me a message or email if you would like to know more or I can answer any questions. I can only share our experience, so I'm sure that some were not as positive as ours. For the most part, I do know that it was pretty successful. Here are the results if anyone wants to check them out ;)
. http://www.biomedcentral.com/1471-2377/14/232/abstract