After Grace finished her round of steroid treatment and her seizures were now gone, I began an interesting era in my life. I was still spooked from the things I had read on the internet, and I did not get back on to search for help with Grace for about 2 1/2 more years. I came out of my deep grief and denial, but I was still bargaining. I still had hope that Grace would grow out of this and at least catch up to the point where noone could tell she had a disability. I was just thinking about this time the other day. I recall the constant feeling of guilt and almost panic that we needed to be doing therapy therapy therapy. I went over body parts in the bath tub. I used flash cards and books to teach her words over and over. I would do stretches on her legs to alleviate the tightness in her muscles. We were receiving in-home therapy through the early childhood intervention program, and I set goals to do a set amt of therapy with her every day. I found a book called "What to do About Your Brain Injured Child" by Glenn Doman. I read in this book about a type of therapy program which supposedly "bridges" the injured part of your child's brain and helps them to achieve many physical and mental goals. The program, however, was very time intensive. In some cases more than 8 hours a day. The results reported in the book though, were amazing.
I decided to ask my neurologist about this approach. He knew about the Doman method, and recalled when it first came about in the 70s people flocked to try this therapy. He said that people gave up everything and all of their time to do this and only achieved what he called "mild" improvement. He said that all of the best parts of the method, like vestibular stimulation, repetitive movements and therapies, brushing techniques etc were adopted into mainstream therapies and that the allure of the program wained. I have to admit that the thought of doing therapy 8 hours a day and depending on volunteers to help with it seemed a bit daunting. One particular part of the therapy was a thing called "patterning" which consisted of four people, one for each limb, to make bending and straightening movements which resembled crawling, a repeated number of times every day. This required patience and a lot of help obviously. The theory is that these repetitive movements create the bridge in the brain over the part that is impeding crawling or walking in the affected individual. We tried this with the enlisted help of Dallas, McKay, and grandparents. We were only mildly effective at keeping a routine up. It was just too hard to get that many people twice a day and besides that Grace became increasingly unhappy about this therapy.
I did read a couple of stories of children with IS on the internet. I was desperately looking for stories of children who had recovered and were leading normal lives. I have found that alot of parents do this in the initial stages. I found the story of a girl whose parents were very holistic and had not even gotten their daughter vaccinated and she still got infantile spasms. There is speculation that getting the pertussis vaccine increases the risk of IS. A friend and chiropractor told me that it was Grace's vaccine that had caused her IS. After reading this story the guilt of getting her vaccinated subsided. Another story I read was about a family who visited a facility similar to the Doman program facility in Pennsylvania in Oregon. It was called the Northwest Neurodevelopmental Training Center. I began to read up on this place. The more I read, the more I became interested in visiting their facility. I talked to Dallas and we decided to use his frequent flyer miles to go up and pay them a visit. I have an aunt-my mother's sister- who lives in suburban Washington state and we thought that the trip would be a good way to visit her and the NNTC and also have a nice trip for our tenth wedding anniversary.
We made the travel arrangements and called my Aunt Daisy Dean to see if we could spend a couple of nights with her. We left McKay and Alexa with Dallas' parents for the time we were gone. We went in the spring of 2004- Grace was 1 1/2 yrs. old. We had a lovely vacation, we went to Canada, to the beach in Oregon, visited with my aunt, and also went to the NNTC. They set us up on a program similar to the Doman one, and it only required about 45 minutes a day. The only problem for me was the patterning. It would require the help of volunteers to do it with her twice a day. We were to do brushing on her skin to help with the sensory issues, we were to do spinning to help with vestibular issues, -I can't remember all of the recommendations, but there were a few more. Grace proved to be a good traveler, and we enjoyed ourselves.
When we arrived home, getting on this program proved to be a chore. Whenever I thought about trying to get all the volunteers required for the patterning alone, I became very overwhelmed. I have a hard time functioning when I feel this way. I had guilt to the max thinking that I was being selfish for not wanting to commit to this. I also had guilt whenever I let any of her traditional therapies slide at all. Some days I just was too tired or overwhelmed and couldn't get them done. I felt like if I didn't do these things that Grace wouldn't make the progress she needed to.
I still felt desperate to find the "miracle cure" for Grace. As I mentioned before we had Grace in chiropractic care for a while. I think we pursued it for about a year. She had many problems with IBS and constipation and we thought the chiropractic would help with that if anything. It really didn't have much of a result even with regular adjustments. I have used chiropractors frequently for back problems and the treatment saved me from what were some pretty substantial back injuries, but the other aspects of the treatment never materialized for Grace. We tried two different nutritional supplements that both promised and advertised amazing results with kids with disabilities. We tried each one for a year thinking that if we were to have any results that would be long enough to get them. These supplements both were very costly and we invested a lot of money to try them. Luckily, the second one had a program to help with the cost for using the supplement for kids with medical conditions and we used that gratefully. I will not put the names of the products here, but if you want to know, you can contact me directly. One of them even has an almost miraculous story about pretty much "curing" a young girl of down syndrome. After this time of chasing miracle cures and therapies and not getting any results, we learned a lot of valuable lessons.
We continued like this until Grace was 3 years old. The continuous cycle of therapy, guilt, therapy, hope, and remaining a shell of the person I once was. I didn't enjoy cooking, gardening, scrap booking, or any of the other hobbies I used to enjoy. I was able to go through every day life feeling about half way back to normal. We had fun vacations, family get togethers, and overall it was an ok time, but on the inside I had constant guilt, hope and the feeling of being overwhelmed. I was grateful however, that she had not had any more seizures. We concluded that since she had not had any more seizures for more than 2 years, that she would most likely never have any more.
Next time....emergence.
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