Seventeen Months

What is this?  Another blog posting from the elusive Epilepys Really Stinks Blogger?  Well, yes.

It's been seventeen months since Liz had her last seizure.  That's the best she's done in, well...ever, actually.  That's not to say there hasn't been issues, but I don't think they're seizure related issues.

In April, she experienced some, for lack of a better term, stuff that I couldn't explain.  Violent bursts of temper, emotional outbursts, and acting out in troubling (and weird) ways (Ex. I walked in on her spreading poop all over her bathroom walls and toilet.  She promptly was given a stern talking-to, and a sponge with some cleaner.).   I called her neurologist, and explained what was going on to him.  He suggested that we see a pediatric psychiatrist, since he didn't believe that her actions were related to seizure activity.  He said that in a lot of pediatric epilepsy cases, the children also experience psychiatric issues.  So, I got on the phone to the insurance, and made her appointment with the best pediatric psychiatrist in the area. 

Now ask me when her appointment is?  Big Hint:  Notice I didn't say "was".  It's July 20th.  Fact is, when you get an appointment with a good pediatric psychiatrist, you wait for your appointment.  In the meantime, she was still having issues, so I was faced with trying to find ways to deal with and cope with her chaotic bursts. 

This is going to sound absolutely INSANE, but I turned to acupuncture.  In January of this year, I was diagnosed with Fibromyalgia (which, by the way, also really stinks).  Instead of taking the nasty medications that my doctors wanted me to take, I turned to a more natural way of treating it.  I did what I do best, and turned to the internet to research ways to treat the pain and weird symptoms of this condition.  The one I came across consistently was acupuncture, so I did some more research and found an absolutely fabulous acupuncturist in our area.  I now see her about every two weeks, and when I told her about what was going on with Liz, she said, "Let me work on her!"  So, she did for three sessions, and it has helped SO MUCH.  Liz doesn't mind the needles, and at the end of her session, she can tell the difference in before and after.  She knows when she needs it, and I let her make the decision.  She still has bursts of odd activity and temper, but it's fewer and far between than it was before. 

So, that's the gist of it.  She's not had seizures in a LONG time, but she's still going through some weird stuff.  My fears get the best of me sometimes, and I worry that she'll be diagnosed with Bipolar Disorder or an anxiety disorder.  My gut tells me it's related to her ADHD diagnosis, but I'm, of course, not a doctor.  We'll see in a few weeks what the doctor thinks. 

Thanks for reading, and have a great 4th of July!!

Questions About Why I'm Not Posting

My darling sister asked me the other day why I haven't posted in so long.  Actually, her exact words were, "What's up with that?!" 

The fact of the matter is that my sweet girl is doing quite well.  The last time we had documented seizure activity was February.  She's progressed to second grade, and is doing quite well in her class.  In fact, in her parent-teacher conference, her teacher expressed that she is doing so well that she's on grade level for reading, and is progressing nicely in math.  We're all so encouraged this year.

Tomorrow starts off Epilepsy Awareness Month.  For an epilepsy advocate, like myself, it's arguably one of the most important months of the year.  You want to raise awareness.  You want to make sure EVERYONE you interact with is aware of seizure first aid.  You want to chase away stigma. 

I'm in the unique position of being the student council sponsor for my high school.  We've made it a project of ours to raise epilepsy awareness on our campus by posting seizure first aid around the school, and selling epilepsy awareness bracelets.

Please do what you can to continue to raise awareness where you are.  The world is not aware enough about epilepsy, what it is, and what it means for us as parents/friends/family members of people with epilepsy.

A secret

Would you like to know a secret?  On August 22nd, it will be seven years since Liz had her first seizure. 

Continued Normalcy

I'm a little nervous about how normal things are with my family right now.  Liz continues to impress me with her handling of the summer routine change.  Although, at this point, one could argue that we've created a summer routine, and that's the reason for the excellent transition.  I'd have to agree, honestly.  Even the most basic routine helps her with anxiety, and she keeps a fairly even temperament.

One of my fellow teachers is going through a situation with her husband in which he is essentially being diagnosed with epilepsy.  Another mutual friend was updating me on the situation, and she remarked that she couldn't help but think about Liz when talking to our other friend.  The husband had suffered a black out while driving, and that got her to thinking about what Liz's life will be like as she gets older.  Will she drive?  Will she go to college?  Will she have children?  I replied as I always reply:  "I have no idea, but I really hope so."  Let's be honest, though.  She probably won't drive because we have had terrible experiences with seizures returning when her meds dip below therapeutic levels, and based on that fact, no state is going to give her a license.  I hope she goes to college, and I want that to be her decision.  The mom in me will have a difficult time letting her go, though ("Please, Liz...you can go there and live at home."  "Mom, I'm 35!!  Let me go!!").  As for the children?  Well, she's eight years old.  I'll worry about that later.

Liz and I are visiting family next week, so I'm sure I'll update my blog about how well she handled the trip.  It should be really interesting.  Have a great day!!

Over A Month...

It has been over a month since I have last posted.  In that month, I received the scores of my high school students' TAKS tests, negotiated the mine fields of public education, lived through school being out for another year, taken Liz to the neurologist, and started teaching summer school.

The fact of the matter is that nothing terribly interesting has been happening.  I had a week off between the end of school and the start of the first session of summer school.  In that time, I took Liz to the local splash pads several times, signed her up for summer reading, and completed several art projects with her.  We also started an herb garden that's responding well to us.

Her neurologist appointment went well.  He wants us to continue on as we've been going, and keep up with the behavior therapy appointments.  Nothing changed in that regard.

Liz had a behavior therapy appointment last week, and since she's negotiated the start of summer vacation so well, we're only doing appointments once a month.  We've established a very tentative schedule, and it seems to be working for us thus far.  It's a nice change from the chaos that was our lives for a few months.  She's so much more calm, and she's been feeling less anxiety than before.

She's been engaging children at the splash pads, and playing with them without too many issues.  I confess that I got a little teary-eyed when I saw her playing with a little girl last week, and being completely comfortable while doing so.  I was so proud of her.

I'm going to make an attempt at keeping up with this blog this summer.  Since most days (outside of summer school) I rarely open up a laptop, it might be a little more challenging than it is regularly. 

Have a great summer, everyone!!

Thief

When your child is diagnosed with epilepsy, the doctors give you a speech.  It usually involves being told that:

1. Your child has epilepsy.
2. We're going to put your child on medication.
3. Most likely, everything will be fine.

Number 3 is a lie.  Rarely is everything "fine."  Most of the time the first medication isn't effective in controlling the seizures.  When you finally find a medication (or mixture of medications) that work, you face the side effects of them.  You start to notice that your child can't do the math homework that just last week she was capable of doing.  Your normally meek and mild-mannered little girl suddenly has fits of temper so violent, you fear for her (and your) safety.  One day walking outside in sweltering heat, you notice your child hasn't so much as broken out in a sweat and is pink with heat.  Upon consulting the medication's list of side effects, you realize your little girl doesn't sweat anymore. 

All of these things you're willing to accept because your child has reached full seizure control, and that is more important than tantrums, cognitive slowing, or lack of perspiring.  After awhile you work around the side effects.

• Cognitive slowing?  She's allowed more time to work out math problems.  You even have her school put it in her IEP.
• Violent fits of temper? Vitamin B-6 (50 mgs twice a day) will offset most of the mood swings. 
• No sweating?  No problem!! You start to carry around a battery-powered fan that sprays water.  Bottled water takes up permanent residence in your purse, and you begin to carry a damp rag when you venture outdoors.

It becomes your normal.  You don't even question it after awhile.  It just is.

Then something happens that makes you realize how much seizure disorders take from your child and your family.  It steals it away from you, and you don't even realize that it's being taken.  From the first seizure on, it steals bits away from your child...memories, parts of her personality, her ability to take care of herself.  The ultimate possibility (and of course, fear) is that it's going to take a life.

Doctors dont explain to you about Sudden Unexpected Death in EPilepsy (SUDEP).  I'm sure that if I went to my daughter's doctor, and asked him outright about it, he'd have a conversation with me about it.  Fortunately, I don't need to.  I know all about it.  I've researched it.  Epilepsy can steal a life at any point.  A person can have controlled seizures for years, and out of the blue have a seizure that ends up killing him/her.  It is my greatest fear as a mother of a child with epilepsy.

Epilepsy steals your peace of mind, your child's health, your child's peace of mind...it is a thief that sneaks up on you, and strikes when you least expect it. 

I belong to a network of mothers that have children with disabilities.  One of the mothers in that network lost her daughter to epilepsy on Saturday.  As much as you tell yourself that her body isn't in pain anymore, and she's in a much better place, as a mother, you can't help but want your daughter with you.  No mother should ever have to face the death of her child.  It's not something you come back from once it has happened.  My thoughts and prayers are with her and her family.

My Motto

You can tell that I'm a history teacher.  This poster was created by the British government in 1939 as a way to boost morale during World War II.  Every time I see it, I think about how appropriate it is for just about everything, so it's become my motto.  You can get through just about anything life throws you just by doing this. 

It's probably cliche, but it's true.  Just sayin'.