Letter from Jennifer
Meghan’s Story
“It all began one sunny afternoon as Meghan was riding her 2 wheeler little mermaid bike that she had her first seizure. I remember like it was yesterday of the possibilities of what else it could be. I called my pediatrician and he minimized the possibility that it could be a seizure. I asked him when he wanted me to call him again. He said, “ It probably was nothing”. You won’t need to call”. I repeated myself and asked him again and he replied, “Call me when she has another seizure”. I indeed did see another upon 1,000’s more. We took our first trip to Neurology clinic February of 1999 and our first of many EEG’s. Our life changed dramatically in those short few weeks that Meghan was diagnosed with Epilepsy. It would take another 6 years that we would also find out that she had Autism as well. We believe autism is what hampered her in so many ways that we had no answers for. Our journey has been quite full of Dr. appointments, trips to the ER, Epilepsy Monitoring unit, evaluation of all sorts and many sleepless nights trying to figure out what to do next to stop the seizures. We failed 7 drugs, the keto diet, genetic testing and had the VNS implanted and finally had brain surgery in 03.
There has been many times when doctors made decisions without me and they clearly harmed Meghan. I remember one time that she went in to get a more thorough evaluation of her seizures and when we left she became incontinent and having more seizures than when we went in. It was a defining moment in Meghan’s care and not for the better. It was then that I knew a lot and I began to speak out even when my professionals didn’t like it. I let one pediatrician go and called him on the phone and said that I couldn’t work with him anymore. He asked why and I succinctly told him “You are not putting Meghan’s best interest at heart. You have not listened to me. He apologized and sent me a personal letter stating how he had failed me. I hope he learned of what parents were looking for to better serve them in the future really working as a team.
We have also toyed with the idea that she would have a metabolic or genetic disorder. We consulted a mitochondrial specialist at Cleveland Clinic and due to the intensity of the seizures he couldn’t make an accurate diagnosis until they were more controlled. He was such a good Dr. He stated it so clearly for me like no other had. He said, “Jennifer her brain is not working and we need to take that part out so she can start putting other pathways together”. That made so much more sense for me. I felt a sense of peace knowing that I was going to do brain surgery and I was at peace with my decision. I had hope that my life could indeed change. This doctor had told me the facts very clearly that I could feel good about it. After the brain surgery she had lost her entire left side including her swallowing, balance and vision. It was devastating to watch however; it offered us hope that the seizures would be reduced. They were greatly reduced but they still were a part of our life. Our world changed for the better. At this time I empowered myself to stand up for what was in my gut what was right for Meghan. This began my improvement work that would lead me down a path that I wasn’t trained for that I just walked! I remember we were in the hospital because she had been having a lot of seizures so we brought her and my pediatrician stopped by and said “We need to put a G tube in her since you are struggling so much with her eating and drinking”. I listened and I thought to myself. Now you mention what I can do after years of asking you for help with nutrition and her losing weight since being on an AED that causes anorexia. Now you take notice. Where were you all the weeks she was vomiting obviously having a reaction to the medication? “I will not do a G tube until we get off this medication! If she still is not eating after we get off then I will concede and really consider it. But until then I have to be her advocate and that is not in her best interest at this time.” My gut was right and I never denied professionals hearing about my gut again. She began to eat and now she is in the 50% and has a lot of ice cream to catch up on. At that moment when I looked back and knew my decision was right and knew that we were in no man’s land so eloquently stated by my friend Elizabeth Aquino who also has a daughter with intractable Epilepsy.
Meghan currently is having about 2-3 tonic clonic seizures/day. She is generally a very happy child but she has her moments. As a prepubescent girl, I think we can somewhat relate. She continues to amaze us with her ability in what she is learning. She is watching so much these days and learning through it.
She is beginning to go through puberty so her seizures are very volatile and unpredictable. I know we are in very dangerous territory with a whole new set of problems ready to be conquered. We have begun having cluster seizures again which require diastat but she recovers so much better than she did years ago. Those early years seem like a lifetime ago. The memory of those early years is fading but the pain of the loss is still there.
Those early days consisted of me staying at home waiting for the phone to ring. It would be her teacher calling she’s having a bunch today. I would drive up to school and come and get her. Some days she wouldn’t make it there. She missed 165 days of school that year. We are still finding that she heard a lot what we said and tried to teach her that year. If she had a long seizure or clusters I would give diastat. Typically it would take about 2-3 days for her to recover from that and then the process would start all over. It was a horrifying time to watch her detiorate. It wasn’t just that she had the seizure-they were hard enough to watch but that she wouldn’t eat and she was missing out in life. And frankly so was I. I didn’t dream that as a mom this is what I would be doing. The pain was intense to watch this and the destruction of our family was blatant. It was hard to get out and I was a wreck when I did get out.
As we matured through this tumultuous time and her seizures quieted down we had space to accept where she is and was. It took me 4-5 years to accept and I still struggle with it on memorable days but in general I am very thankful for the life I have. It’s given me more depth that I could imagine and my faith has grown immensely. But more importantly I can look at Meghan in a different light and see her for what she is. A beautiful 12 years old trying her best and wanting to be loved and accepted.
Unfortunately there was times that were very rough. I was mad at the world and many people that I had contacted with knew it. It still happens but now I am able to get through it much quicker and its not as intense. I also can tell people that this anger that you are seeing is sadness that I can’t explain- its loss of that child back in 1999. But making all the decisions all the time is wearing! Sometimes I can’t make one more decision. If you are the caregiver you have to take time out to get away from it all but its very hard to do. What I have found is going on vacation is a good way. You don’t get away entirely but you get in a new environment and that energizes me too. I also have found running and scrap booking as my ways out. It keeps me grounded as well as connecting to other parents that have children like Meghan. That has been life changing for me. Those people help me on a day in day out basis. We laugh and cry together about the good and bad. In fact, I have found about 5 of us that do things socially now and are one of the first phone calls I make when I have something great to tell or if I’m in a crisis. It’s amazing how those people have crossed my path.
There has been many amazing people that we have crossed paths with… teachers, administrators, parents, therapists, new friends, Dr’s and autism support staff that have touched us in ways that cannot be explained. We also have had those interactions with people that were not helpful, did not listen, did not care and didn’t do the right thing. Those people we try to forget or touch paths with them in ways for them to “get it”. Some days it’s hard to believe how they can’t get it but that’s just the way it is. It’s our job to keep talking and educating everyone we can so we can spread what we know. I have started very early with Meghan’s sister Lindsay going into her class and for her to go into her sister’s room at school to talk to her peers about her sister. We talk about what it means to have a sister that is nonverbal and how best to communicate with her.
About 1-½ years ago I found something that would change our lives, when a read a book called Strange Son. It was so inspirational to me I couldn’t put the 500 page book down. I felt compelled to find out more about this educational technique that a woman in Texas was teaching children that were non-verbal to learn academics. So I began this technique called Rapid Prompting method. It is a method that you have the child choose the correct choice, learn how to spell on an alphabet board and advance to typing on a computer. It sounded so much like Meghan. So I went to Texas and got her evaluated and sure enough it is another puzzle piece that we have added for her to be connected to the world. She is now progressing into 4th grade curriculum and taking tests-the first time in her educational experience. It is not just exhilarating for her family but also so empowering for Meghan. Can you imagine how she feels to have no ability to tell us what she wants with the exception of her behavior? She has lost her verbal ability and has very little control of what she can do. Here she can show us what she knows! It’s just another technique to help her become more independent.
At this time we are trying to find a balance in western medicine and homeopathy and giving Meghan the best quality of life, which is no easy task. There comes a point when the amount of medications affects the child so much that it clearly affects the quality of life. It’s hard to find that delicate balance. But it’s essential for our children to do just that.
As I feel wiser and a better read of Meghan I have also began working on improvement teams. I have had many opportunities to make a difference in how children with epilepsy are treated, work on grants to give the parent voice, work with agencies to understand what parents need and develop tools for parents. I have a forum that most parents don’t have. I have worked with other parents that have gone through similar experiences and we have tried to develop tools to help parents make their pathway easier –if that’s possible. One of the tools that we are very proud of is the care notebook. These notebooks can really help parents organize their information about their child and keep their thoughts compiled in one area. Parents have so much to juggle hopefully some of these tools will help alleviate for them not to have to remember everything. I began speaking locally and nationally on patient centered care. All of this work is emotional for me. It’s been a way for me to make sense of what has happened to Meghan, my family and myself. It’s been cathartic in many ways and other ways it makes me want to work more so more people in the community understand what we go through. These opportunities have allowed me to understand more on the side of the medical community, which has allowed me to make more sense of why patient centered care isn’t happening across the board. I feel this path that I am on is evolving and more opportunities for me to express my voice is just beginning and I know that Meghan and all the children will be impacted in better way.”
