Thursday, November 5, 2009

Treatment for Epilepsy

The goal of epilepsy treatment is to stop seizures from occurring. Sounds simple enough right? If only that were true. Unfortunately there are several types of seizure, several types of epilepsy, and with epilepsy being an 'unknown', treatment can be rather difficult.

When two people take the same antibiotic for the same infection those two people will metabolize the medication differently and therefore get different results. Sure, the infection will most likely be eradicated by the medication, but the speed in which that occurs and the side effects experienced by either individual will likely be different.

The same is true for an epileptic. Fortunately there are various types of medications that work on the different chemical pathways in the brain. Each medicine controls one or more pathway. Therefore each medication will attempt to control a specific type of seizure or a few types of seizures. Of course, I am not a doctor and this is not proper medical descriptions!

Other than medication there is a natural way to help control seizures. That is through diet and behavior modification. From the diet stand point there are two diets that help reduce the likely hood of seizures. One is the Ketogenic diet. This is a very specific diet that must be controlled by an epileptologist and a dietitian. It must be followed to the T. No fudging, no mix ups, no last minute 'forgot to pack lunch let's swing through a drive-through'. Very controlled. We have not tried this as we do not have an epileptologist available to us in Oklahoma City. The other one is the gluten-free, dairy-free, vegan diet. This is where we fall in. We are 90% accurate on this diet. Meaning, when we are away from home. Out and about, visiting friends/family, in a restaurant, or at a church dinner we do not strictly follow this diet. I have not figured that part out yet. The rest of the time, in my home, we are following this diet. That is not to say that on occasion we will have an old time favorite. However, we have noticed a difference in Avagrace's alertness, color, spark, and general quality of life when we follow this diet.

Research has shown that any neurological disorder will benefit from the gluten-free, dairy-free, vegetarian diet. This is because the gluten, dairy, and animal product is not something that we can easily or effectively digest. Your immune system is in your gut and so when you have stuff in there that can't be digested easily or at all it just sits there until something else can sweep it out. When you have a neurological disorder, or any issue that requires your body systems to work extra hard for, your immune system must be at it's optimum state. If your brain does not have the proper nutrients or the best fuel it isn't going to function well. For someone with a neurological issue they are going to be even more sensitive to this. And if your gut is trying to digest something for multiple days it is going to get tired, slow down because it hasn't had a break, and it won't be able to properly absorb the good stuff.

Other than diet and medications it helps if you know what your triggers are. We still do not know all of Avagrace's triggers are. We do know two. One is when she breathes incorrectly. Like if she is crying and can't catch her breathe, or she has been running and is having a harder time breathing. Her other known trigger is when she is tired. So the world stops for Avagrace to sleep and nap. One down fall for her is that she has always had trouble sleeping. She will sometimes wake up for a few hours in the middle of the night and just not be able to fall back asleep. So she just lays there with her eyes closed, trying to sleep. Some people are light sensitive. Some people will have a seizure from a flashing light. Some people can have a seizure because of music. As wide and varied as are humans, so is epilepsy and its triggers. Keeping a seizure journal can really help you learn your triggers.

The plan for tomorrow is to talk about medication more in depth. I am heading out of town for a few days so if for some chance their is no Internet connection where I am I will post and be back Sunday night. God Bless and please tell one person each day all that you can about epilepsy! Together we can make a difference!

Tuesday, November 3, 2009

What is a seizure?

The best definition that I can find on the web is located HERE if you don't want a full out explanation basically it is when your brain misfires.

Every second your brain is sending electrical messages back and forth throughout your brain. When someone has a seizure it misfires or jumbles signals. As if your brain were one of the old telephones, like in Little House on the Prairie where you shared a line. All day the switch board would ring and the operator would connect you to an open line. It would go smoothly until something made every housewife in the prairie pick up their phone all at once and then lots of anxious women were excitedly talking on the same line trying to connect to someone else. The operator lady would go crazy...

In our household we explain it to our little kids as a brain being silly. Her brain is so active that it just gets silly sometimes. She can't control it and so she has to take medicine to help the brain do what it is suppose to do. Right now she is on her 7th try of medicine combinations/dosages. The downfall is that she is a slave to her meds. She must take them every day at the same time or it will not work. The medicines are also very strong and they control your pathways in your brain. Dramatic stuff. The side effects are what is so trying. Her current meds have made her forget and regress. One day she actually forgot her name for 45 minutes! She knows she is not remembering stuff that she once knew and to her that is the most difficult. To my mama's heart, seeing her struggle is also difficult. She will not be in remission until she has been seizure free and medication free for one or more years (it differs by state/hospital/doctor/epilepsy group). She will not be considered in control until she has been seizure free on meds for at least 6 months and up to two years depending on the 'group.'

For now we take it one day at a time. Tomorrow I will tell you about different seizures and in a few days I will tell you about lifestyle changes. If there is anything you want to know please leave a message and I will gladly add it to my list of topics! I will also have some special guest interviews later in the month so check back and check back often.

Now for my story as to why knowing the protocol is so important!

I was in an off base nationally known pharmacy picking up meds for Avagrace when a gentleman taller and much larger than me fell backwards into a seizure. A man sitting in the chairs behind us jumped up and grabbed something from his pocket and started to shove it into the guys mouth. At which point myself and the pharmacist were yelling "no, stop!" Fortunately the pharmacist jumped over the counter and stopped the man from inserting his...get this....'un-opened pocket knife' into the guys mouth. The man thought he was doing a good thing. He thought he was controlling his tongue so he wouldn't choke on it. He was so embarrassed. The man's seizure lasted 8 long minutes and when he came out of the seizure and saw the medics he was so mad. "I am fine" he insisted. "I have been dealing with this my whole life, I am here to pick up my medication. I couldn't afford it last week!" At which point the police then became involved and the man lost his license to drive and now he probably won't be able to afford his medicine again because he will now loose his job. He was yelling that at the chops because he has been fired from several jobs because of his epilepsy and is now in construction. He said without his car and without his job he had nothing. The cops offered him a ride home as they towed his car away and he cried. He told them that he had been turned down for Social Security and had spent the maximum amount of time on food stamps and TANF (welfare). He was at a total loss and so was I. Hearing him, a grown man old enough to be my dad, sob as he sat in the middle of the pharmacy floor, over the same issue that was facing us in a very different way, broke me. So many people will say "epilepsy doesn't change your life, you can live a normal life with epilepsy" this frustrates me. Yes, of course this is the goal and yes of course it is possible. However, it is rarely the norm. Epilepsy needs your help. People suffering from this silent terror need your help too!

Monday, November 2, 2009

A spoon is great, but not for seizures! Epilepsy Awareness Month

Many, many people, still to this day, tell me to "always carry a spoon with me and Avagrace will be fine! It shocks me to know that this is such a common-knowledge thing, because it is so very-very wrong! Read on and I will explain!

First let me share Avagrace's first seizure. We were at my in-laws house enjoying family time and wrapping up our last day on the East coast. We were blessed with a two week trip in February of this year. Brendan and the kids were downstairs in their living room-style basement. The kids were playing and dancing and the TV was on in the background. Brendan saw Avagrace fall while spinning and dancing. It wasn’t a hard fall, it didn’t even make him cringe or jump. She just fell backwards and bumped her head on the round coffee table, she then came forward onto all fours as Bren waited for a cry or a giggle. Instead she fell to the side and began to visibly seiz.

I was upstairs preparing lunch as Aidan came running upstairs to tell me something for the umpteenth time. Yet even before he spoke I could tell that this time was different. He is our 'always dramatic child' and so I took a moment to wash my hands and then followed him downstairs. Halfway down the stair case I heard Bren yelling and so I ran to him. He was on his knees with his fingers in Gracie's mouth trying to open her airway because she wasn't breathing, as I got closer I could tell that she was seizing. I started yelling call 911 as Bren's dad came out of the office to see what all the comotion was about. He called immediately and I told Brendan to stop doing what he was doing because you aren't supposed to put anything in a seizing persons mouth. He said that he had to keep his fingers in her mouth to keep her airway open. She was biting down on his fingers very hard but he thought he was saving her life. I didn't argue because he has had more recent training than I so I figured that he knew something I didn't. The 911 lady confirmed to my father in-law that he was suppose to remove his hands from her mouth but he couldn't bring himself to do it. He said that "next to Jesus himself" telling him to stop, he wouldn't have been able to. All I could do was pray loudly and continually tell Gracie to stay with us and that I loved her and that she was going to be ok! When she relaxed she was in and out of consciousness and she was so ashen and blue in the face. The paramedics had arrived just moments after the seizure stopped. They boarded her up in a neck brace and all and off we went to the Washington DC children's hospital. When we got there they did a CT scan and showed no damage to her brain and no fracture to her skull or neck. Because there was no damage, no bruising, and not even a mark on her, they were not confident that the fall happened before the seizure. They released us to fly home as long as we followed up with a neurologist as soon as we got back to Oklahoma.

I am going to end there to point a few things out. First, seizures can happen anytime anywhere. Epilepsy can start at anytime in life although it often happens before the age of five, and after the age of fifteen. Seizures can happen from head injury, high fevers, or unknown factors such as genetics. Epilepsy is actually a symptom more than a disease. It is a symptom of an unknown disease/condition and so it is the condition at this point. More research is needed to understand why people have these unknown recurrent seizures and what is causing their brain to misfire. A person does not have the diagnosis of epilepsy until they have had multiple seizures that were not a result of fever or head injury.

The second thing that I want to point out the reactions of Brendan and I to her first seizure. Brendan had never seen a seizure before. He has had training as have I in first aid/CPR and emergency response. Yet, when you see your own child in a situation it is very difficult to remember what to do. Since her first seizure Brendan has never put anything in her mouth and he has followed protocol during seizures, but knowing what to do is not always easy to follow. Me on the other hand, I am the loud one. "Breathe Gracie, Mommy's here, Lord please help my baby" I am talking to her during the seizure even though all the Dr's say she cannot hear me. When she comes out of the seizure though, she is exhausted, sore, and cold and wants to hear my voice. I will talk more about all of this as the month goes on but today I just want all of you to know the protocol of what to do during a seizure.

If someone is having a seizure here is what you do.

Make sure the person is lying flat on their back or on their side in a safe place. Stay with them and if you can cradle their head in your lap so as to raise the neck up a bit to assist in opening their airway as soon as they can breathe. When the seizure stops roll them to their side so if they vomit they will not choke.

Call 911. Some people say you should not call 911 unless the seizure lasts longer than 2 minutes. However, if someone has a seizure their brain will benefit from oxygen being given as soon as possible. Some epileptics may be embarrassed or mad that a fuss was made over them. However, a seizure is life threatening no matter how short it is. The greater care the better. Besides you never know how long it will last. I couldn't believe it when Gracie had one that was 37 minutes long. I thought it was never going to end!

NEVER PUT ANYTHING IN THEIR MOUTH! A person cannot swallow their tongue. They may bite it and bite it very badly, but they cannot swallow it. Someone asked me if they could bite it off, well I will double check before I answer that but if that would happen they would not likely swallow it, especially if they were lying on their side as soon as the seizure stopped. When the person is seizing their muscles are completely locked up. Swallowing cannot occur until the seizure stops. When the seizure stops people generally cough, spit, or throw-up. Then take in a big breathe. If a person is biting their tongue during the seizure, and you will know from the great amount of blood, rolling them onto their side will protect them as much as possible. Avagrace had a seizure during breakfast one morning, just as she took a bite of oatmeal. She dropped the spoon but had oatmeal in her mouth during the entire seizure. We laid her on her side and she spit the oatmeal out when she stopped seizing.

Spoons in the mouth have broken teeth, damaged jaws, and choked individuals when they did come out of the seizure. Tongue depressors have been broken off and have also choked people.

Restraining a person damages their muscles that are already locked and tense. A person needs to be left alone during the seizure unless they have a special medication that needs to be given like Avagrace. However, unless you have been trained to administer said medication do not attempt it. The medics will take care of that when they arrive.

Lastly, try to time it. I know that is very hard when you are in the midst of such turmoil. But it is very beneficial for the patient and doctor to have thorough notes on each seizure. I will explain more on this later as well.

So let it all soak in and please pass the word on.