Brittany's Story-The Long Road-Part 2

We finally took her off of steroids because they weren't stopping the seizures. The next year, the seizures continued. We had tried every drug possible. This baby was on more drugs than you can imagine. We were in and out of hospitals. But I got stronger with each day! I researched and researched and researched. I knew everything about Infantile Spasms. I also learned quickly (which I wish I would have known that first night) that the people who are on some of these sites are those who are (many times) the worst cases. So always take the information knowing that there are less severe cases. Reality is, when Brittany's Infantile Spasms moved on to tonic clonic seizures, I left the Infantile Spasm chatroom.

I was now on the level with my daughter's doctors. I was part of the decision making team. We discussed everything and I had the final say on which route we would take. Honestly because it was all trial and error. So after we all discussed it, I would take their recommendations and make a decision on what the next step was. Actually, a funny story was that I thought I was going to be arrested for drug smuggling. Brittany was put on a non approved FDA drug that we had shipped in from Italy, Canada, Mexico. One day, it was stopped by customs. It took me five days to track it down. When I finally did, they said they weren't releasing it because it was not legal in the U.S. I finally spoke with a supervisor and told him---"MY child is going to die from withdrawals if I don't get that drug. So here are your choices--1) let me know who I have to sue and who is going to take responsibility for her death or 2) come down here and arrest me for drug trafficking but bring the drugs with you... Oh let me know what time you are going to be here so the media can be here to witness it. It was 7AM and I was on the phone calling airlines because I was going up to Canada to get the drug and bring it back. The doorbell rang and miraculously, the pills were delivered.

Brittany received PT, OT, Speech, Special Education. She worked so hard and she hated it. Her muscles were like a Rag Doll now. She had no muscle tone, she couldn't even hold up her head. Her seizures continued and we were running out of drugs. I looked at the book written by a prominent doctor "Understanding Children's Epilepsy", Dr. Orrin Devinsky and decided Brittany needed to go to him. After much string pulling (thanks to my sister-in-law), we got an appointment with him. We also had seen about 4 other doctors who were specialists in her type of seizures and no one gave us much hope. She was hospitalized, wiped clean of all drugs and we started over including a modified version of the Ketogenic Diet. Emergency trips to the hospital, weeks on end in the hospital, we just kept trying and trying. Something had to work. I wasn't giving up. I started meeting other families and now I was becoming known as I guess a parent advocate. I started learning all about the Early Intervention Program, I learned all about the drugs, various treatments, alternative medicine (which we tried a different type every two months including Amma Therapy, Herbs, Cranial Sacral Therapy, BioFeedback, Chromotherapy, Aromatherapy, Music Therapy, Hippotherapy and the list goes on). The Holistic College was so intrigued by Brittany that when the founder came in from Korea, they had her look at her. She said it was going to pass,it needed to escape her body. It needed to come out on its own (wonderful I thought).

Now, neurologists were giving out my number along with various organizations to talk to parents whose children were being diagnosed with seizures and infantile spasms. And everytime I got that call, my heart would ache. Knowing the path these parents were going to have to take. To this day, I still get that ache in my heart as I try to give them enough information and hope, yet I know they have no idea what they are in for emotionally, physically and financially.

So now G-d comes into the picture again. I made a deal. Did I sell my soul, I don't think so but if that's what it would have taken, I would have done it. I asked him to point me in the direction. That I would continue to give, to do charity work, to help any possible way that I could...just help my daughter. And let Him direct me and show me what he wanted me to do. So I kept doing my charity work, I kept talking to parents and I honestly got my support from supporting others.

The turning point was this one major hospital trip. We rushed into the city with her having uncontrollable seizures. This time, I was really scared because they were not stopping. Her heart rate was going crazy, her pressure was going crazy and she was seizing out of control. They doubled the Adavan but I thought this was the end. It had never been like this before but after what seemed like an exorcist 15 minutes, the Adavan kicked in and it stopped. The absolute worse neurologist in the world came in and recommended a drug that caused irreversible liver damage. It's your only chance. I went home and researched until 4AM. My gut told me don't do it. I went with my gut and tried two more popular drugs combined with the diet. It's what my heart was telling me to do. I stopped the start of the drug at 4:15AM. I ran over to the hospital to make sure that she wasn't given the drug. And the neurologist was furious with me. I will never forget her purposely vicious words "You know your daughter will never be normal. She is mentally retarded. You do know that don't you?" It was like a firehose put on full blast and smashed me against a wall. I had never felt such pain from words before..and my answer was "I know she is mentally retarded but I want her to live the best life she can and I want to try this first".

Well, screw you Ms. Neurologist because my decision stopped her seizures (for the most part the were finally under control). You were doing a study on the drug and that's why you were pushing it you Bitch.

So a side note to that sad soul:
I am a big believer that what goes around comes around and honey we will meet again. You are the only person in this world that I am determined to meet up again with and I will. And my daughter will walk to you in her walker and she will show you the beautiful girl that she is. Because you cannot even hold a candle to her as a human being. She certainly outshines you and has changed this world in so many ways, more than you can ever accomplish, she is a star!!!"

So that was a little over 1 1/2 years of torture. Until Brittany was 2. On her third birthday, we didn't have a birthday party. We had a one year seizure free party and had balloons that said 1 year seizure free and cake and invited over 60 people. Everyone who helped us on this long journey of hell. And as all of you know, it didn't stop when her seizures stopped but that was when we started to take a turn for the better. It's been a real slow road (and she has break throughs once in awhile) but at least we leveled off and have been taking steps in the right direction.

That was our beginning...that 1 1/2 years is what was the start to a whole new life that is changed forever. In fact, most people don't know this story because I walked around during that time with a fake smile on my face saying..."Everything is fine". And while most people know all the charity things that I do, they don't know how it all started from that deal and promise that I made. And I could have probably slowed down by now but I get so much from helping others. In fact, there was one organization whose director couldn't figure out my motives. Why would I organize a whole charity event and offer my marketing skills for FREE. I'm still he's still asking himself that question because it truly comes from my heart! I hope you got something out of Brittany's Beginning! It's a hard part of my life to share but I'm sure you will see that this experience not only changed me to be a better person but Brittany is an extremely special person. She has a way of touching people and bringing out the good in them and they go on to help others. So as you get to know us, I hope you will get to see what an amazing miracle Brittany is!