Admittedly, I don’t have a child with Epilepsy, so my ‘back to school’ challenges are a bit different than many. Still, I certainly share some of the unique obstacles faced by parents of kids with Epilepsy.
Last year was Hayden’s first year of ‘real school’, if you are like me and call Pre-Kindergarten just that; 5-days-a-week, 3 hours each day. I made a promise to myself and to my husband that I would be very frank and honest with the teachers and the school administrators about our situation. After all, I’m not the Mom in the drop-off and pick-up line at school twice-a-day, and my ability to get to school for volunteer opportunities, parent organization meetings, even trips to the nurse’s office is a bit limited. So, the first week of school, once I met her teachers, I sent them a letter via email. I reiterated how excited we were for the school year and I was very up front about my Epilepsy and how our family functions each day. I gave the teachers information on just who would drop off and pick up Hayden each day, and I also explained to them that even though Epilepsy and seizures were a big part of Hayden’s life and she was very used to reacting, there may be a couple of days following ‘one of Mommy’s terrible incidents’ that she comes to school a bit rattled.
I also gave them links to great Epilepsy resources so they could take it upon themselves (if they chose), to learn more about Epilepsy and how children deal with this. The response I received from her teachers was wonderful and I believe I had them on my team this last school year in terms of living life with Epilepsy.
Will I have the same connection this year? I don’t know, but I will certainly try. Don’t get me wrong, there was a time or two when I was offended or hurt by comments or indirect reaction to our life. One example…I rode to school for pick-up with my Mom one late morning, when she volunteered to help. I was on my way inside when a teacher who was helping to get the kids in the proper cars saw me, turned to the Pre-Kindergarten group waiting anxiously for their rides, and said, “Hayden, your babysitter is here!”
“Babysitter?” Wonder how she made that assumption?! I held my composure, turned to her, stuck out my hand and introduced myself as my daughter’s mother.
Needless to say, I think the more information we give our educators, the better.
When it comes to sending your child with Epilepsy to school, you shouldn’t feel alone. There are many resources that can help. The Epilepsy Foundation has printable material and also provides you with the language to use when you speak to your child’s teacher. Contact your local affiliate if there is one close-by…they have great seizure-smart programs and will even go into the school to educate teachers, administrators and the kids on seizures and how to react.
Also, you will probably want the teachers to track your child’s seizures. It’s not too tough with printable logs from SiezureTracker.com, and it can only help in managing your child’s seizures. It’s a good idea to check with them once-a-week so you can make sure the logs are accurate and well-kept.
Talk, talk, talk. Seriously…communicate with the school about your child’s behavior and seizure activity. “If parents takes the lead, you’ll end up with better results,” according to Russell Derry, Director of Education for the Epilepsy Foundation of Michigan. “Be an advocate for your child, make sure you have a sound plan in terms of informing teachers, administrators, school nurses and even other students about your child’s seizure patterns.”
I’ve had so much on my mind these last few days…actually, let me clarify. Tucket has been on my mind.
If you haven’t ‘met’ (I mean virtually or in person) our black labrador retriever, Tucket, I’ll give you some insider info.
My husband and I came into this marriage more than 8 years ago with a dog each. I had Bogey, my sweet old Golden Retriever, and he had Tucket who at that time was a barely 2-year-old lab, incredibly smart and remarkably well-behaved. Tucket was Andrew’s dog, through and through, but in January 2003, when I became sick and began this journey called Epilepsy, Tucket really became ‘my’ dog. We always marveled at how he could sense seizures. He was not trained to be a seizure alert dog, but he has this amazing quality. He climbs into my lap when my auras begin, sometimes even tugging at my clothes so I know to sit down on a piece of furniture if I’m standing. He’s devoted, incredibly smart and truly loved, even protective, but more than anything, he has made this journey with us from the start. He understands Epilepsy perhaps more than many of the adults I come into contact with!
So, when we found out on Saturday that Tucket has a mast cell tumor–malignant– in the worst place possible…the back leg near the joint, my world, our world, was rocked. And, it’s still shaking. The advice from the oncologist was simple…have the tumor removed, ASAP.
Devotion to our animals continues to amaze me. It’s no wonder they become integral parts of our families. I have a hard time imagining my life with Epilepsy, without Tucket. He’s a friend, a great snuggler, a sounding board (yes, I believe he listens to me), a caregiver and a healer. Everything everyone tells you about animals and their healing power is true. Tucket is not only a great companion, but he is there for me when I need him most. He never judges me or questions my decisions (except maybe when Hayden and I choose to give him one cookie in the morning instead of two!). Hayden and I like to call him ‘Nurse Tucket’ when I’m at my worst.
So, you’ll have to excuse my worry and apprehension while we await the results of surgery scheduled for next Tuesday. It’s just so hard to imagine my life without my 4-legged companion! I bet many of you have similar, if not the same experiences with your pets. My advice today…give them a giant hug and a kiss…you just never know when life with your animal will change forever!
I promised myself I would never take so-called negative comments to heart, but I had to write about this one.
“…why do people who have these disorders, which they themselves describe as horrible, life altering, etc., continue to breed. Why do they do this? Yes, she happened to have a “normal” child, but so many do not. These become the “million dollar babies” which suck the system dry. There are many children waiting to be adopted. Selfish, stupid, these are only some of the thoughts I have of them. I work in an emergency room, and after seeing some patients with these chronic, inherited diseases, sickle cell, etc., who come in in agony, screaming with pain, and then see them pregnant, it makes me want to scream myself. What are they thinking? This is not an inspiration, this is selfishness. Go out an volunteer with children who suffer from epilepsy, don’t potentially make one!..” (August 1, 2010)
Selfish? Stupid? It’s one thing to insult my blog or my choice of posts…or even how I look, but when someone insults my child, or my choice to have a child, that gets my blood boiling! I guess I never looked at my desire to start a family as selfish or stupid. And, I think it makes sense to review the facts.
First, according to the Epilepsy Foundation of America, in 70% of all Epilepsy cases, there is no known cause. The Foundation has a lot of information on its site that points to this. There is a lot of research going on right now to figure out the genetic link to Epilepsy. I have Hayden checked very carefully by her pediatrician each year, and my epileptologist (as a favor to me) does his own bit of checking as well. Do I worry that I might have passed my disorder on to my daughter? The answer is simple…yes, every hour of every day of my life. But, I have also done a ton of research on this and I know that the risk is ever-so-slight since I was diagnosed in my early 30′s after suffering from encephalitis and meningitis.
I worked closely with my epileptologists at the time, the team at Johns Hopkins in Baltimore, and I also worked with a high-risk OB group at Hopkins. My pregnancy was carefully planned and incredibly watched, week-by-week.
As for my child, I pride myself on the fact that she has just as normal a life as her friends and classmates, and I work very hard at this. Does her mother have seizures? Yes, but she is cognizant of that and she knows how to react. I surround myself with people who understand and care, from my husband to my very, very close friends. So, I never worry that she is deprived of love and attention.
Will she one day have Epilepsy? That remains to be seen. I don’t know that anyone can reasonably predict this, not even my epileptologist. But, if that does happen, we are prepared, and I have a hard time believing she will become a ‘million-dollar baby’.
Not much surprises me in the Epilepsy world, but this is a story I had to watch and then watch again…and again…and again. The story itself is something I’ve been following for a while.
A neurologist in Detroit is accused of misdiagnosing hundreds of children…telling them they had Epilepsy. It turns out, they don’t. He prescribed medication for virtually all of them, brutal and terrifying anti-seizure medications. Many of them suffered horrific side effects and their lives were seriously altered. The state of Michigan is even investigating the doctor…saying he may have mis-read EEGs and other tests, accusing him of negligence and incompetence.
So, is it true? Did he misdiagnose to cash in with the pharmaceutical companies? That’s another part of the story. Channel 4 talks to a pharmaceutical rep who says she gave the doctor ‘the royal treatment’ so he would prescribe the anti-seizure drug she represented. The case is still wide open. The doctor is living and practicing in Saudi Arabia now, and the more than 200 kids are now seeing other doctors and their families have filed suit against the doctor and Oakwood Hospital. If anything, the story teaches us that a second opinion is in order if your symptoms don’t match the diagnosis. Scary…but true.
You can watch the ‘raw’ interview (un-edited) with reporter, Karen Drew, by clicking here (fyi, it’s 35 minutes long, so be prepared!):
Thank you everyone, for the kind comments about the aolhealth.com article that posted late last week. As always, I was honest, frank and direct when asked to talk about living life with Epilepsy.
I heard from SO many readers, both new and old…and your compliments were very encouraging, not to mention, welcome! I also received lots of advice, questions and words of encouragement. It’s why I’m doing what I’m doing with this blog!
For the most part, the comments were sort of these, ‘right there with ya’ statements. I think when you have Epilepsy or when you care for someone with Epilepsy, you share this significant bond with others who live with it. We can swap stories of medications that work and don’t work, treatment options, doctor preferences, means of support, etc. Friendships that develop, whether in person or virtual, can be so strong and are frankly the means that get us through this thing we call Epilepsy.
What puzzled me though, were the few negative and almost bitter comments about me or Epilepsy in general. I’m tough, but when it comes to being critical of this disease, I can’t help but react. And, the comments came from both those living with Epilepsy and those who don’t. It’s crazy to re-hash negativity, but I wanted to say a few things about this because it’s been lingering in my mind all weekend. Yes, I’m troubled! And, let me say that the following points are absolutely my opinion, but I hope you’ll give this some thought.
So, here goes…
1. We won’t move forward in terms of bringing Epilepsy out of the shadows if we don’t remain positive. In other words, wondering why other diseases like cancer or arthritis get more public funding or more attention won’t help our cause. We all know it’s a huge issue, but put that energy into raising awareness and talking facts about Epilepsy! It’s that simple. And, we will get results if we all stick together. It will take time, but I’m confident it will work.
2. Each person CAN and will make a difference. Whether you support SUDEP awareness with a foundation like Danny Did or your Epilepsy Foundation affiliate, you can be heard. But, we shouldn’t resent those who don’t want to support a certain organization. There’s a group, or even multiple groups, out there for everyone. Personally, I select my affiliations carefully and with pride. I know I can make a difference with the Epilepsy Foundation of Michigan, and it’s right here in my backyard. But, that doesn’t mean I don’t lend my support to other groups that have a mission I believe in. I look for strength and presence in an organization.If you must contact an organization and request that they clarify their mission, do so! Whether you support a group financially or with your presence, it’s your right to know exactly what they stand for, and it’s your right to choose who you’d like to back.
3. We all have VERY different struggles with Epilepsy, and as my Dad used to say…’you don’t know what’s going on behind someone’s front door’, so in other words, we shouldn’t judge! Many of us share challenges with medications, family struggles when it comes to support and understanding, setbacks in terms of schooling and driving, employment issues, and overall tough times. But, we can help each other by understanding, suggesting and accepting, not resenting.
4. Finally, connect! In other words, there are literally millions out there who share this struggle. The web can help us do this, so really…it’s not too hard! If I can help someone and even comfort her by detailing how I felt during my pregnancy and what my Epilepsy was like during those 9 1/2 months, I’m thrilled to do it. My life with Epilepsy is everything BUT perfect and never will be, and I’m encouraged when I swap stories with someone and we can discuss how to solve our similar issues. We can all call ourselves advocates if we understand and accept each other.
So, call it a rant…or say I’m simply getting a few things off my chest. I wanted to make those 4 points on this Monday morning. I hope you’ll give this some thought and move forward with your own push for awareness and advocacy!
By the way..all comments welcome!
The story of my Epilepsy diagnosis isn’t exactly a pretty one, but really…who doesn’t have a tumultuous journey with this so-called condition?
I was contacted a couple of weeks ago by a writer for aolhealth.com. As I always say…any and all times we have the opportunity to talk about Epilepsy, it’s a good thing!
I know I’ll do everything I can to make sure this happens!
With all of the internet traffic we see lately on Epilepsy and living life with Epilepsy, I haven’t seen much on this news story that was released on Monday:
The headline read: Only some epilepsy drugs may raise suicide risk.
The study was done in the UK, and consisted of more than 44,000 UK patients who used epilepsy drugs between 1990 and 2005. Researchers found an increased risk of suicide, attempted suicide or “self-harm” only among current users of certain newer medications that had previously been linked to a risk of depression.
The drugs? Topiramate (Topamax), Tiagabine (Gabitril), Levetiracetam (Keppra) and Vigabatrin (Sabril).
Everyone on an anti-seizure medication, from Topamax to Dilantin to Vimpat can see the words right on their pill bottle. I checked mine this morning, and there they were: ‘May increase risk of suicidal thoughts and activities’. It most likely depends on your pharmacy, but my pill bottle is filled with other warnings too. It’s a mess of red and yellow stickers (and teeny tiny writing). ‘Medication should be taken with plenty of water (that one is in bold type); ‘May cause drowsiness, alcohol may intensify this effect, use with care when operating a car or dangerous machinery’; ‘This medication may lower the effectiveness of some forms of birth control. Consult your doctor or pharmacist’.
It’s confusing and many of those stickers can be overlooked if we aren’t cognizant of what we are taking. Before you begin a medication, you must speak to your neurologist about the possible side effects. Do your own research on the internet. Know what you are in for before popping that first pill in your mouth. We read often about how depression is so prevalent in people with Epilepsy; we have to know what to expect and what certain drugs can do to us. And, if you aren’t comfortable with the side effects, talk to your neurologist. You may have other options.
Talking to your family and friends, those who are around you often, might also help. People who are close to you will notice changes in your behavior, perhaps even before your notice them in yourself. So, it’s nothing to be ashamed of if you let your spouse, partner or parent know about these warnings. Are the stickers necessary? Yes, but to some degree, we must ‘warn’ ourselves and be prepared for what might happen when we take a certain medication.
As for Monday’s news, doctors will probably tell us if you take medications other than the ones mentioned in this study, you still must be aware. The fact is, thoughts of suicide or depression in general may be associated with the actual seizures. Mood changes may occur before, during or after a seizure, and in other people with Epilepsy, mood changes are not related to the timing of a seizure, but relate to where the seizure is coming from in the brain. A seizure that comes from an emotional center in the brain may be more likely to produce a change in mood.
How often seizures happen also plays a role in depression. People who have seizures frequently may be more likely to feel depressed than people who have well-controlled seizures.
So, there’s still a great need for awareness, and don’t make a secret of the potential side effects of your anti-seizure medications. It just might help you and others around you.
For more information on Epilepsy and Depression, click here.
We ask the question so often. Why don’t more people ‘Talk about It’? In other words, why is it so difficult to speak freely and honestly about Epilepsy and seizures?
Greg Grunberg has done an excellent job of pushing the issue, as have organizations like the Epilepsy Foundation of America, its affiliates, CURE, The Danny Did Foundation. But really…is it so tough to be frank about this? Apparently, yes.
A friend who is deeply involved in Epilepsy programs and advocacy said something to me yesterday that really stuck. She said that it will be the young people that bring Epilepsy out of the shadows. In other words, they seem to have shed the fear and have made the commitment to help erase the stigma. They recognize that some won’t accept their situation, but still, they move forward. When you look around and really examine all of your relationships with advocates, those who live with Epilepsy and those who care for people living with Epilepsy, isn’t this the case?
I’ve mentioned before in other posts that I have no issues speaking freely about my illness, either to others in the Epilepsy world, or those who have no affiliation. I’ve suffered greatly for this; lost friends, sacrificed the trust of co-workers, and raised some eyebrows among other things. But, I committed myself to honesty because this is truly the only way we can help raise awareness and erase the stigma. And, I see so many others who have approached this in a similar way.
But, when I see or read about young people like Kaitlin Nolte or a young man named, Michael Hutton, winner of the 2010 Dakota Pequeno Memorial Scholarship from the Epilepsy Foundation of Michigan, I’m amazed at how open they are about their Epilepsy. They have courage and strength that is so admirable. Not only do they live with their Epilepsy, but they are fighting to make a difference and to raise awareness. Chances are, they suffer like so many of us do, but they don’t let their pain stand in the way of their goals.
It might be too late for many to begin to talk openly about their Epilepsy, but we can certainly support the young people that are fighting to raise awareness and bring more attention to this condition. Whether it’s a $10 donation to their campaign for an organization’s event, the purchase of a purple beaded bracelet or simply reaching out to send them a note of hope, we can support their efforts. Helping them will help us all!
Epilepsy Advocate has launched a new campaign, Women Succeeding with Epilepsy. It’s a super collection of articles and webcasts that are available to all who wish to explore this interesting world of women living with the condition.
It’s true, we have some issues that differ from men. Can I have children if I also have seizures? How do hormones affect my Epilepsy? Can I raise a family if I have Epilepsy? How about something like osteoporosis? Is there a greater risk with Epilepsy?
Blanca Vazquez, M.D., is an attending physician in Neurology and director of Clinical Trials and Outpatient Services at the Comprehensive Epilepsy Center at New York University Langone Medical Center in New York. And, Elizabeth Battaglino Cahill, RN, is the executive director of HealthyWomen, a non-profit organization providing women with in-depth, objective, medically-approved information on a broad range of women’s health issues.
Epilepsy advocates come in many different varieties. They can be those of us who live with Epilepsy, family members or good friends of those with Epilepsy, doctors and others in the medical field who deal each day with Epilepsy…or simply people who understand this complex world, and care.
I met Susan Noble online several months ago. She is an epilepsy advocate. Can she be classified in any of these advocacy categories? Perhaps, maybe in several, but I think her strongest characteristic is the fact that she is determined to make a difference when it comes to Epilepsy and those touched by it.
Susan lives in Florida and I had the chance to speak with her a few days ago.
“I wanted to do something to make a difference. I’m just that type of person,” she began when I asked her why she is so involved in the Epilepsy world. “I’ve been blessed my whole life. And, when you have someone in your family or in your group of friends who is affected by Epilepsy, you must get involved.” Susan has a family-member with Epilepsy.
Susan has partnered with two other women, Amy Lunn Mosser and Katie Hughes-Schroeder, to create a non-profit organization, The Fighting Epilepsy Foundation. The organization will be based in Chicago. She said the majority of funds raised will go towards research…and technology. The non-profit filings are pending, and Susan said she and her partners are beginning to schedule events and fund-raisers.
“We are three ladies, two of whom have kids with Epilepsy and I think this is our mission,” she said. She is committed to making her foundation unique and to cater to both children and adults. “We all seem to want the same thing. We will focus on research, support and finding a cure.” Susan said her foundation will also work to help parents of children with Epilepsy find the proper monitoring equipment. She has a particular focus on SUDEP and other conditions or situations related to Epilepsy. “I know someone who is terrified to let her two your children sleep alone at night. She is so petrified of SUDEP, she sleeps each night with her kids at her side.”
She wants to educate people, promoting support groups and connecting those who have Epilepsy. “I don’t want to fail, and I know there are many other organizations out there with similar goals and people behind them who are so determined to make a difference,” she said. “I’m hoping that someday, we can all be partners in advocacy, support and research. After all, isn’t that what Epilepsy needs?”
The organization has several events already on the books:
-September 2010: A launch reception for the Fighting Epilepsy Foundation in Texas
-October 2010: A launch party in the Chicago area for The Fighting Epilepsy Foundation
-October 2010: A 5K run/walk in the Chicago area to raise funds
-November 2010: A Texas Hold-em event in the Chicago area to raise funds
-April 2011: A walk to raise funds in Lincoln, NE
More information on these events will be available soon.