A Scared Mom

[mygator]

Hello Everyone!!

My oldest daughter (13 years) was diagnosed with epilepsy back in July of 2008. We had no idea that our lives were about to change so dramatically that day. It had been a great summer day. We had been enjoying time together as a family and were in the process of making some cheeseburgers on the grill. Then it happened, the grandaddy of them all. She was just putting the finishing touches on her burger when she grabbed her head and began to stumble backwards. We helped her to the ground, layed her on her side as she had begun frothing at the mouth, she was groaning, her eyes had rolled backward, her arm was in the odd contorted position. Mind you I have been in the healthcare field for awhile and until that moment I thought I knew what a seizure would be like. I had been trained to handle them although I had never seen on until now that is. This was so different, this was my very own child. She was transported by ambulance to the hospital and admitted for observation. All tests, scans came out normal.

The next day she was visited by her primary care Dr and informed that a Neurologist would be up to do and eeg and access her. This was all done and the results were that our daughter would have another seizure. She was now labeled a person with epilepsy. She was prescribed carbamazapein 100mg 2x daily. He had informed us that this was a great med but could help cause a seizure if the activity wandered to the other side. Scary yes but we made it through. She did have some breakthrough seizures during weeks that she would miss a dose or two. These seizures were nothing compared to the first. I will be asking for advice on those later. Cause I do not know how to name them.

This past Wednesday we received the dreaded phone call from school. This has been her biggest fear by far. She had a seizure at school and was bleeding. This was all I knew as I climbed into the car to go to her side. I had no idea what to expect when I arrived. She was in the nurse's office with someone applying pressure to her head which as we all know head wounds bleed alot, well this one was no different. She was awake and talking so again it was not as bad as that first god awful seizure. We brought her home, she remained queasy so kept an eye on her. I had decided that I would be headed into the urgent care with her to check out her head, so I hopped into the shower and she had another one as I was bringing her some fresh socks, again a much simpler one but this time I was able to see her eyes as her head moved her pupils were absolutley huge.
She came out of it, we left and shortly after leaving home she had another one. Arrived at the urgent care and they sent us to the hospital. Sitting in registration she had another one.
By this time I'm completly beside myself. I had never been this scared in my life. They immediately pulled her in got the iv going and did the proper bloodwork which all eventually came back normal. Even the carbamazapein was in her system at its proper level. They determined that she indeed needed to close up the wound on her head with staples. They kept her for several hours and saw no need to do further testing and they did not see and reason to keep her. I contacted the neurologist who set up and appt for the following day. He now has her on Lamoctil and will eventually wean her off of the carbamazapein.

I'm horrified. I'm so scared for this young lady. It has become painfully obvious that she has dangerous episodes, this falling down scares me. I cannot be there all the time to catch her like I want to be. I cannot just kiss it and make it go away. She is afraid that her friends will look at her differently, she is afraid that she will loose her friends because she is "different".

How do I do this?

 

[Nakamova]

Hi mygator, welcome to CWE.

Many hugs to you and your daughter. The most confusing and scariest time with epilepsy is often in the first few years after an initial seizure an diagnosis. There are three big things to get a handle on -- one is the seizures themselves, the second is the treatment (usually meds), and third is figuring out how to relate to the rest of world.

Everyone has a different story on coming to terms with the "Big Three", and you can read many of them on this site. For a caregiver it can be especially scary to see the seizures and feel that there's nothing to be done. But in fact, there's plenty you can do -- you've already made a good move in searching for info and empathy here at CWE. Being proactive and informed can go a long way.

Unfortunately, it can sometimes take awhile to find the right medication to control seizures. What works for one person might not work for another. It can mean trying a few different meds and evaluating them not only for their ability to reduce or control seizures, but also for their side effects. It sounds like Carbamazepine was a bad fit for your daughter; Lamictal may be the winner. One very helpful thing to do is for you and your daughter to keep a seizure journal -- recording not only the seizures (what happens, how long, how frequent), but also anything that might be a contributing factor or trigger -- sleep, diet, metabolism, nutrition, hormones, and any emotional or environmental stresses. Some people have found that fluctuating hormones can be a trigger -- given that your daughter had her first seizure at thirteen perhaps this is a contributing factor (and worth asking your neurologist about).

As for her friends -- yes, it's probably the case that her friends will look at her differently. In some ways you do too -- you are scared for her and worried and protective to an extent that you probably weren't before. With her friends and schoolmates the best approach is to be matter-of-fact. Make sure they know what to do during a seizure (most people still have outdated ideas), and and also try and give them a sense of what's going on during one -- in many ways a tonic-clonic seizure appears more disturbing than it actually is for the person experiencing it. It's possible that your daughter may lose some friends because she's "different" -- that can happen in highschool whether someone has epilepsy or not -- but those may not be the friends worth keeping. If your daughter can reach a certain comfort level with what she's going through, that will help her friends to do so as well. If you and she can be open about her fears and concerns, that will help her friends to empathize and understand.

One more thing: I recommend that you read the blog/posts of RobinN on this site. She talks about her daughter's progress with epilepsy, as well as the nutritional approach she has taken to help control the seizures.

Best,
Nakamova

 

[Meetz1064]

Hi there,

mygator, and welcome to CWE. I'm happy to meet you, but sorry your daughter (and you) are going through such trying times.

E(pilepsy) can be a pain in the arse, and scary--especially for someone watching. The seizures themselves cause us E patients no pain, but the injuries might, if there are any, depending on the seizure type.

The first one you describe, as well as a couple of others, sounds just like a Tonic Clonic (Grand Mal), which you'll see abbreviated as a T.C. or t/c around here. I'm going to put in a link for you to check out that describes different types of seizures. Follow it, and you can get a better idea of the other types that your daughter may have.

Seizure Types

Being calm is the ultimate thing for a caregiver to show the E patient--otherwise the E patient tends to react badly. It isn't an easy thing to do, I'm sure of this. But, it's necessary. Your knowledge of what to do made things much easier, for both of you--and especially for her. Too many people do things wrong that can cause too much damage. So kudos to you.

Nutrition plays a HUGE role in E patients......and for quite a few of us, it also plays in our ability to control them. I am one of those people, as is RobinN's daughter that Nakamova mentioned.

Keeping a detailed journal, as Nakamova also mentioned is an EXTREMELY USEFUL tool. Not only for you, but for the doctors as well. Tracking foods, sleep and menstrual cycles, amongst many other things can help you determine what the triggers are--or at least give you a better idea of what they are. And if your daughter is triggered by the hormones tied to her cycle, that is CATAMENIAL EPILEPSY, and doctors CAN help that.

Also, please keep in mind that you may be on a "med-merry-go-round" for a bit in order to find the right "fit" for your daughter. It would be nice if the first med we all tried was exactly the right fit, but that's not usually the case.

Remember that you can lean on us here, for whatever you need. The Library and Kitchen are chock full of information, and the Padded Room is great for venting when you need to. Mr B has built us an AWESOME home here for this dinner party. So kick up your feet, sit back, and absorb.......

Before I forget. I do have a pretty detailed list of what to put in journal, if you'd like it. Just let me know, and I'll post it for you.

Take care, and welcome to CWE.

Meetz
:rock:

 

[skillefer]

Hi mygator! Welcome to CWE. First of all, let me say, that like your daughter, I have grand mal (tonic clonic) seizures. I had them when I was little. Then, they disappeared until I hit 13. Then they started up again. So I am going to speak from my experience. First of all, alot of my feelings about myself and the fact that I had seizures were effected by how I saw my parents deal with them. Just like infants, who learn how to respond to things by watching and seeing how adults do, so do kids. Yes, she will have people that she thought were her friends who will not want to hang out anymore. It happens. And you know what? Those people arent' really friends. Friends stick with you through the tough stuff.

Now, for you mom... Epilepsy is not the end of the world. I still have an occasional breakthrough seizure. But I also have a graduate degree, a wonderful career as a teacher, and a wonderful family and friends. And yes, I'm married and have a seven month old baby. I also drive. Epilepsy does not always rob people of opportunities. There are many people here with degrees, careers, kids, families, etc...I choose to think of E as being like asthma or diabetes. Treatable. Not necessarily curable, but treatable. It only effects me as much as I let it. Now, that attitude has taken years to develop, but it's there. Yes, tonic clonic's are scary to watch. (I've watched and done first aid for others who had them when I was living in the dorms in college. ) (My hubby says mine look like my arms and legs do a complete 180 degree twist... ) There are a couple of things that you and your daughter might want to do. First, have her start keeping a journal. (Just like Nakamova suggested...) Also, keep track of her periods...believe it or not, hormone fluctuations around a period can trigger seizures too. Also, make sure that your daughter gets at least 7 hours of sleep every night. (sleep deprivation is a major trigger for lots of people as is consumption of too many stimulants like coffee, energy drinks, and OTC cold medicines...) Make sure that she's eating a healthy diet. (Low blood sugar can trigger seizures, so make sure that she doesn't eat too many sweets, and that she eats regularly, not skipping meals.) Don't be surprised if EEG's come back normal. I've only had one abnormal EEG in over 30 years. And most of all...remember that you and she are not alone. We're here for you! So feel free to ask questions, vent when your frustrated, and just chime in... Hope this helped...

 

[RobinN]

Hello and welcome to CWE

My daughter was diagnosed at the age of 14. She has tonic clonic seizures. Another name for them is generalized seizures. Many of Rebecca's happen at school.

I am confused to your daughters initial care. Why did they put her on medication immediately following one seizure? How can they tell from one EEG that she will eventually have another seizure. No one can predict that. They can possibly guess it will, but it is not a fact.

Another question is one I would ask your school. Why did they not call paramedics following a fall that caused a head injury that required stitches. I can't tell from your post where in the world you live, but I do know that here in CA there simply is no choice if that were to occur to my daughter. She would be transported to the ER immediately. If she hits her head hard, without blood, there is no question. Now that is not to say that the ER simply does routine tests, and tells us to call her neurologist the next day. However, it would have been far better if a head would had been treated immediately, especially without the history to back it up.

You can read our story here under my signature. But it was a wild ride in the beginning. We followed conventional medical practice and tried four medications. The side effects simply were not acceptable and the seizures increased. This is hard to judge when the patient is put on meds immediately. I kept a journal of the episodes and each drug had it own set of symptoms. Life spiraled out of control for my daughter. It wasn't until I began doing my own research and finding that there were alternatives to medication.

We now have a nutritional plan that we are working with. We are tweaking it, and finding ways to heal from the inside out. Blood sugar levels were a red flag for me, as were other minor medical concerns that I never connected the dots. Now I believe they are all interconnected as the body is a fine tuned machine. When one area is not functioning, it is a signal that care needs to taken to find out why. I guess now I am thankful that she has had seizures, because what wasn't noticeable before, could have been blown up to be a chronic illness over time.

Seizures are a symptom. Most conventional doctors will only treat the symptoms.

As for friends and people being meanies....yup... it will happen.
Many have been afraid of my daughters situation. If they are truly good friends they stick by and are supportive. Others, don't have the grace to do so. My daughter has been seeing a therapist from the beginning to help her deal with her struggles, challenges, and has been a great "rock" for both of us. I highly recommend it. She listened when I needed to cry, and was there when I was hovering too much, and a balance when my husband and I did not see eye to eye as to how to approach my daughters needs.

Ask first at school for a 504 plan immediately. It will allow your daughter some room, with her medical needs. Then if you think it is necessary, you can move on to an IEP. This will help with with her academic plan, just in case you need guidelines for her teachers, and support with special situations. Everyone is different, everyone has their challenges. We just don't often see what they are. Most hide them. Unfortunately for our daughters it is visible, but that can be seen as a good thing. It is all in how you approach it. I have teachers all the time come to me telling me how impressed they are with Rebecca. They share that if this were to happen to them, they would most likely not be able to get back up and face it. My daughter continues to walk back into a classroom where she had a seizure and keep her head high. I am so proud of her. She is also teaching 1200 students what it is like to live with a seizure disorder. You can't learn that in a book.

 

[mygator]

Hi everyone!!! Thank you one and all for responding to me. It is so very appreciated.
But now I have to get through each of your responses to answer any questions or comments that you may have had.

So please hang in there with me. I think I will start with RobinN seeing as it is the first post that I can see right below me.

Her initial care. I really do not know how to respond as never having gone through this with family or friends to me this was normal. When they did the eeg we were not there. My husband drove me home so I could shower and grab a few things for Abby just in case she was trapped there longer. When we arrived back like an hour later the nurse that had been with Abby told me that the eeg was done and was currently reading the results. Hour or so later he came in and literally said your daughter is going to have another one. He explained some things to us and it is certainly possible that I just did not hear what he was saying to us. He put her on this first med(carbamazepine). However he warned us that this med was good for a certain type of seizure however should the activity wander it could help cause a seizure. I do believe he had found a lot of activity going on at the time of the eeg. I'm sorry I wish that I could remember more for you. Cross between stress at the moment and 2 years ago.

The school I honestly have questions about. Way back when she was first diagnosed we came up with a plan. It does not appear to me that anything was followed. Funny part is this is the 2nd time this nurse has failed me. The first time she told me that my youngest daughter had pink eye, so I grabbed the kid out of school took her to the Dr and he tells me that no she does not have pink eye. I did not require antibiotics, he gave me the name of an over the counter allergy drop that had her eye like new within a couple of hours. Then with Abby and her head wound she told me when we first walked in that it just wasn't big enough to need medical attention. It was Abby and her fatigue and another seizure that made me say emergency room here we come. I just knew something was not right. Thank god the fatigue was just because of the seizures. The Dr at the emergency room said her wound was not bad however she felt it best to close it up with 2 staple. Now something to mention is that by the time that we got home(20 -30 minutes)after her school seizure her head stopped bleeding and scabbed over already. But in the emergency room it started again.

Although the school behavior I do question highly. I'm grateful that this week we are registering her for high school and I can say without a doubt that this will be handled very differently. They will get it right or suffer the consequences of mom.

But since that very first seizure almost 2 years ago she has had 8 more seizures. I feel like hell right now. I question everything even sending her to school now. I will be talking to the school but I really wanted to concentrate on getting Abby over this bump in the road before anything else.

I have also started keeping a journal since her "bad day" last week to try and get a feel for what is happening. Anyway RobinN I hope that I have covered everything for you. Please do not hesitate to spread some advice.

 

[skillefer]

Ps...if you have any school based questions..I'm a teacher. Feel free to ask.
Just realized my reply might have sounded scolding...didn't mean for it to.

 

[RobinN]

I understand what you mean by just wanting to get through the school year. It would not be my advice to take her out of school, but I do understand the fear. What helps at our school, are clear instructions as to what you want to see the school to do in case of a seizure. If she hits her head on concrete, how long a seizure before EMTs are called, are you to be called after each episode, how long to recover...etc. Also it might be worth your while to take a few of her good friends that she spends time with at break, and teach them how to make her comfortable, and who to contact. Rebecca's friends feel very proud when they are able to help keep her comfortable.

Your journal will be very helpful. If you can go back and fill in some gaps from the past if you can remember what occurred. Also if she has started her period, keep a record of that, as that has proven to be a trigger for many women. The term for seizures that occur at this time, (or even on off days if they are connected to ovulation or hormonal surges) are called Catamenial Seizures. You can Google that and find a lot of information about it. Rebecca's first neurologist, when I asked if seizures could be related to hormones, he said No. You will find that there are quite a few doctors that should not be discussing the situation with you, because they simply do not have enough info. I gather there is about one chapter on neuro-health in their text books.

I understand that you are nervous about the number of seizures that your daughter has had over the 2 yrs. Rebecca had none until she was 14. When she was on meds she was having 6 - Tonic Clonic seizures per month (at the most). Now that we are approaching it with alternative ideas.... she can go for 4 months without any seizures. As she is progressively healing (blood sugar levels, gut health, clearing liver of toxins) she is improving. Her ability to ride out the hormonal surges each month is stronger.
She made it through this month just fine.

Keep using your intuition. It is a good indication as to what you daughter needs. If something does not feel right, or if you need a second opinion... take heed of the voice speaking to you. Just remember that your daughter was fine for 11 or 12 yrs. Work to get her back to that state of health. The body is incredible, and can fix many wrongs if we let it, and feed it properly. Medication can work for some, but it presents its own set of problems. Thankfully it didn't work for us, which has allowed me to search out alternative therapies. The quality of my daughters life is far better for having done so.

 

[Blondie47]

Hello mygator,

Oh boy can I relate...it is so very hard to understand it all sometimes.
My daughter has epilepsy, and is 14. She is learning how to cope with it and I am learning how to cope with it and her having it! It's been a year and a half now.
Take care

 

[alivenwell]

I saw both sides of this coin. I saw a roommate have multiple Grand Mal seizures. At the time I also felt scared for her wellbeing. I wondered if she was go to into status. I wondered if I did the same stuff. Although I lived with this condition for most of my life, this was an incredibly horrifying experience.

As a person with epilepsy, like others stated, we are fortunate to find our true friends. I'd suggest that your daughter not go swimming. But, try to treat her as normally as possible.

I had catemenial seizures as a teenager. And, the thought of a major seizure followed by a few minor ones is not a consolation either. The official name for that is kindling.

But, I have beat the system, obtained several college degrees, several professional certifications and found the right medication. I now drive. I am employed for many years using those degrees.

My mom has been my rock and inspiration to do my best at whatever I wanted to do for life within limitations.

I feel strongly about taking brand-name only drugs. Others in here have inspired me to eat little gluten or soy. My active dog needs a stress-busting walk every night. For me, personally, stress has been a huge factor in causing seizures. School is stressful. Kids can be downright cruel. Education is the key to making the school and body of students and teachers aware of epilepsy. If there is a branch of the Epilepsy Foundation in your area, please reach out to them and obtain pamphlets and support.

As time progresses, you may want to look into calcium supplements because some anti-seizure drugs cause osteoporosis. I use calcium chews that are chocolate (my favorite!).

I am grateful to guidance counselors who told me I could not take college preparatory classes. Out of defiance, as well as a strong desire to improve my future, I fought for and won college preparatory courses and did quite well in them.

The public is more aware of this condition. I also take Lamictal and it has kept my seizures away for many many years. Why? I have no idea. However, I suggest you pre-count all medication, set alarms on a watch/cell phone for meds and keep track of your daughter's diet and stress. It sounds obsessive-compulsive, but it works for me.

My mom has been an incredibly supportive person for me as I grew up and struggled with this condition. She has been the rock in my life.

 

[cher1985]

hey there mygator,

my name is Sharon but my nickname is Cher and I can say I understand some of what you and your daughter are going though, I've had Grand mal seizures since I was 11yrs old, and pretty much have a big lists of meds they tried on me, they did EEG's and an MRI found nothing(then), my seizures stopped for a time after I started my period(age 13), I was home schooled so my parents and teachers are the same people.

And they started up again in feb. '07 my parents have been very understanding, a few of my friends stopped wanting to hang out with me once they started driving. but my doctors and parents have helped me find some answers, in october of 2007 they did an MRI with contrast and found that I have a scar on my brain, right now I don't work not due to the seizures, my parents have bad backs and need me to help out, my mother also has a seizure disorder and had one in july(the first one I had EVER seen).

and in case your daughter doesn't want to tell people you should look into getting a medical ID they have bracelets and necklaces.

hope this helped out a little and if you want you can send me a PM.

~S~

 

[becks]

hi there welcome i'm becks
i have had epilepsy for 13yrs since i was 19 but i haven't let it stop my life you need to install this into your daughter life does go on and she's no different to any one else if you start treating her like this she will feel it, the seizures become easier to deal with and it will become secod nature it has to my husband we have been together since i was 20 he saw my first fit on my 21st birthday great present he freaked but now he's relaxed the more he freaks out the more i freak out.

just hang in there it will get easier just dont start treating your daughter like she hasa disease cause it's not the way i explain it to people is my brain is a computer and sometimes it overloads and needs time to reboot people dont seem so stand offish then.