My first child was born healthy and very happy, we had everything we had hoped for, after her second set of immunizations Amanda developed infantile spasms, a type of seizure that is linked to West Syndrome. She was misdiagnosed with West Syndrome which is where one hemisphere of the brain develops slower than the other. Most likely her problem was a vaccine reaction. Amanda was born in 1996 and developed seizures when she was 5 months old. She would have a set of 12 to 15 every 4 hours to begin with. They looked like a full body crunch with an eye roll, brief, but the repetition made them very difficult for Amanda.
She was initially treated with massive doses of prednisone, which removed the happy go lucky girl we knew and loved. She gained a lot of weight and at first we saw a decline in seizures, then it turned around, she started having sets of 200 spasms which took over 1 hour to happen, life was becoming unbearable.
Once the prednisone failed the next drug suggested was Depekane. I was not interested. I was caught in a tough spot, her life had gotten more difficult by introducing the last drug. I looked into possible side effects and saw liver failure. Amanda was more of a Murphy's law kid, if it could go wrong it usually would go wrong. I tried one dose of the drug she threw up immediately and I threw it out.
I had been checking on-line at the time for drugs and solutions to what Amanda had and how to possibly fix it. My dad mentioned the movie "First do no Harm". Someone told him about it. I just kept searching and didn't give much weight to my Dad's suggestion. I still found my way back to that suggestions, my own way, the longer way. I found a website that discussed West Syndrome and everyone was really depressed. I found a website that discussed drug therapy and from the parent's perspective what the good, bad of each treatment was. That website was eye opening, many drugs per kid over many years and no solutions.
I then found the website on the Ketogenic Diet, people were optomistic and chatty, happy, struggling but with purpose. I found the group I wanted to belong to, the happy ones. I ordered the video and the book and did my reading. I was thinking we would have to travel to the United States to John's Hopkins to get the diet done, I was prepared to do anything. I was discussing my choice with an early intervention worker. She mentioned an upcoming Epilepsy seminar that had a local Doctor in Edmonton and a Ketogenic Diet Coaches that were local. They were going to be there and it was the upcoming weekend. I couldn't believe how luck could be so close to us. I went to the seminar and met with the Doctor and Team. I needed a referral, and it was suggested I get a referral to the Glenrose as well for her assessment.
I was happy to be leaving my other Doctor, he was prescribing Prednisone, going on holidays and doing absolutely no testing of her blood to make sure she wasn't suffering from the treatment. I met a family who had nearly lost their daughter to Prednisone at the Epilepsy Seminar. I was starting to feel like every opportunity of treatment that involved drugs had a shady side the doctor's weren't willing to discuss or acknowledge, they kept placing the blame and the focus on what they were treating instead of possible side effects of the treatment.
I made it, Amanda began the diet close to the University Hospital, it couldn't be done in the hospital as they didn't approve of the treatment, but we needed to be close in case she had issues during the fasting process. Amanda had no problems fasting, she quit eating period. I had been breast feeding and she had never wanted to take a bottle, now she wouldn't eat or drink. She was allergic to cow's milk a big portion of the diet is usually milk. I was hunting for alternatives, it was becoming difficult. Finally I found a formula just for this, it had protein and fat, it was soy based and I could order it in locally.
After dropping 10 pounds in a very short time, Amanda was put on a Nose tube. She then quit swallowing. You see the Murphy's law yes, if it could go wrong it did. After being on the nose tube and no longer swallowing she was headed for a g-tube. Once the g-tube was in I thought my problems were over, not. She now had reflux, what when in, came right back out and with a child that doesn't swallow, the other option is to choke constantly. We started her on zantac and prepulsid (this drug is no longer on the market due to heart problems it caused). Once the food stayed in, the seizures slowly went away.
We were nervous to do a count, we recorded seizures every day in a book, we were recording less and less, then it was no longer daily, then we crossed our fingers and hoped we wouldn't have to open the book again. The only time Amanda had seizures was if she got sick and threw up her meal. For the next 3 years Amanda was on the diet. I researched more and more and discovered her other issues were Autistic in nature, they could also be linked to prednisone as a possible cause. She didn't talk anymore, she had irrational fears and couldn't walk independently. She had issues with balance, she could only walk with her fisher price walker, she screamed in any other room than the room we were in for most of the day, to lay her in the bath was torture. It was all proprioceptive. We began substituting some of her oil for yeast free oil and added Nystatin to her regime. I was pregnant with my second child and Amanda still needed to be carried everywhere at 4 years old. I couldn't possibly carry two kids.
Within days Amanda let go of her fisher price walker and stood in the middle of the living room, something she had never done before. Although this is what I had researched should be the outcome, my Murphy's law little girl hid behind this glowing girl free standing in my living room. Within weeks she started taking a few steps, then walking along the wall. She lost her fear of the other rooms, the upstairs and soon I began to understand some of her fears. She would duck down when she came into my bedroom where there was a ceiling fan going. She had no idea how far away it was, it scared her. Two weeks before the birth of my son and 4 months after beginning the Nystatin, Amanda walked down the middle of the hallway without holding onto the walls. My life was starting to get some sunshine back in it, the happy girl was returning, life was something we were beginning to live again.
One of the things that prevent people from taking drastic steps towards holistic treatment is usually it is not the advice of their treating Doctor. I do not think people should just choose to do this treatment unless they have researched it and understand that your life becomes the diet, the diet is first and foremost the only thing that matters. We had a 13 hour schedule, she was on a g-tube from 8:00 a.m. to 9:00 p.m. with short breaks. I purchased a Pet pump to allow us the freedom to go into town and buy groceries or go for a meal. This was after being on the g-tube for 2 years already before hand. I was anal and had complete control of everything in her life, this is a very stressful position to be in. If there was a mistake, a seizure it was my fault, I took very few risks without researching them. Any change to her diet could bring on a seizure, so adding Nystatin was a risk that had to be worth while.
I believed in the diet and the exactness of it. I experimented with why there were problems, you couldn't put the oil into the meal or it stuck to her bag and tube leaving behind important grams of oil that would drastically change the ratio of the diet. I used a syringe for the oil, I also understood that she could throw up during a meal, which again would change the ratio, so I would divide the oil, first 1/2 before her first 1/2 of the meal the other 1/2 before the second half of her meal. I used Ross Carbohydrate formula for her main ingredient, I added baby food that had protein and veggies in it, usually a chicken and broccoli from heinz, or a carrots and beef from heinz, either way the GI index of the vegetable plays a big roll, not all carbs should be used as the higher the GI the more likely of seizure activity. I added the oil at the end to the tenth of a gram I used safflower oil once we went on Nystatin.
My daughter is 15, she hasn't had a seizure since she was 2 or 3 years old. She speaks, she walks, runs a bit. She still suffers developmental delays and although she looks normal she has typical autistic behaviours except, she is sociable, loves to be hugged, kissed, she likes eye contact, but has a very short attention span and still has a lot of sensitivities to sound. She loves music, she is a growing teenager with a sweet tooth. I let her eat whatever she wants. I control the sugar as it gives her most of her behaviours. Do I believe that keeping her on a controlled diet would help, yes, it may help her cope a lot better. Right now we are trying to live with less control and enjoy the time we have. We are living every day to its fullest and in time I may find ways to improve her situation further, but for now I am so very thankful for her health, her ability to be who she is and to always be positive and happy.