Wednesday, November 14, 2007

November is National Epilepsy Awareness Month

This is not going to be eloquent or funny. There may be grammatical errors... I really don't care... it is all I can do just to get this out. These are the facts.
Here Goes...

On the morning of July 30th 2006 Kid woke up complaining of a stomach ache. I was pregnant and tired and I had her scoot into my bed. She was having a hard time sleeping and was kind of in and out of it for the next two hours. At 8 am she sat up and let out the scream she always does right before she vomits. I scooped her up and took her to the bathroom and held her over the toilet. She threw up some stomach bile and then dry heaved for a long while. She wasn't crying which I thought was slightly unusual since dry heaving can be pretty painful. After some time had passed about 15 minutes it seemed like she was through, or at least clear that nothing else was coming up, so I put her on the toilet and she went potty. She was still not really helping me do anything and I can remember being a little annoyed that she wasn't supporting her own body weight. We kept asking her if her tummy hurt, and if she was done, and things like that and she didn't answer us. I actually remember snapping at Mr F that she didn't feel well and obviously didn't want to talk right now. After 30 minutes I told Mr F to call our friends and let them know that we would not be attending their daughter's birthday party.

I carried Kid to my bed and laid her down. I looked at her and knew something was not right. I asked her a question and I could see in her eyes that she was not there. She then started foaming from the mouth and went completely limp. I screamed for Mr F to call 911 and picked her up running downstairs... sure that I was holding my dead daughter... that she had just died in my arms.

When I got downstairs I set her in Mr F's lap and could see that she was shallowly breathing. Her eyes were open but completely vacant. We are fortunate in where we live, we live about 2 miles from a top hospital and right downtown. A fire truck and an ambulance were at our house in under a minute. The EMTs immediately suspected that Kid was having a seizure and in need of Oxygen. They loaded her into the ambulance and I was allowed to ride in the back with her. After what seemed like a really long time we were finally on our way. Kid was still out of it and I absolutely feared that she might die on our way. Thankfully she was receiving oxygen but I was very worried that they might have to intubate her or something before we got there.

At the hospital the doctors determined she was still seizing, by now it had been going on an hour, they took all her history and kept her on oxygen. At some point they got really unnerved that her oxygen levels were too low, at 86%, then I realized it had been in the 60s the whole time with the EMT and started to worry about her brain function. They gave Kid some medicine to stop the seizure. It didn't work. A while later, now the seizure had been going on for an hour and half, they gave her another dose. She was pretty doped up and soon she fell asleep. They sent her to have a CT scan. That came back normal. They gave her a spinal tap. That woke her up. They couldn't find any reason for her seizure. After her waking she was not normal. She had been given a lot of drugs but still it was disturbing, it was as if she had become retarded... and we were qutie worried that she had. Kid was previously a very bright, verbal child.... now she didn't make sense and would look right at me and ask "where is mommy".

She was admitted for observation. Once in our shared room she started becoming quite agitated, screaming, ripping at her IVs, thrashing (very unusual behavior for mild mannered Kid). I thought she surely was damaged. Only one parent could stay the night, so I sat on the window seat and listened to her heart rate monitor beep all night. I climbed in the bed to feel for her breath. Early in the morning the neurologist came and told me she'd need an EEG and then we would go home. I was assured that many, in fact most, children who have had a seizure only ever have that one seizure and that we may never know what caused it. That due to the length and severity of her seizure we would need to keep an emergency medication with us at all times. Many hours later we had the EEG and that came back normal as well. Many more hours later and we finally had the meeting with the pharmacist who taught us how to administer the rectal gel that is the emergency medication. If Kid was to have another seizure we were to time it and at 5 minutes call 911 and administer the medication. Any seizure under 5 minutes is okay, anything over 5 minutes could be life threatening. The gave me a folder of information and told me to buy this book.They scheduled us a follow-up appointment with the Neurologist for the end of November and discharged us.

Obviously this changed our life. I was terrified every moment of the day and night. I couldn't sleep(at all) for over a month. And in September I let her go to preschool and had to trust them to identify her non-convulsive type seizure and administer the medication. This was not easy. I sat in my car in the parking lot for many days. I cried any time I saw an ambulance. Having the medication on hand every where you go is something that takes thought and effort... and awareness... an awareness that seeps into every part of your day. I have a medicine in my bag "in case" she seizes.. to keep her from dying. That is not easy to live with. We were to told to go about our lives normally.... oh but to cancel that family vacation in Wyoming.. oh and no car trips you always need to be within a short distance of a hospital. The good news is that the longer a child goes without having a seizure the less likely they are to have a repeat seizure and to be Epileptic. If you can make it to 6 months seizure free you have a 90% chance of never having another one. At the three month mark we went to Disney World. We were very nervous about the flight, but hey they do have oxygen on board!, but knew that once we were in Disney World we could enjoy ourselves and feel comfortable that if anything were to happen we could get quick medical attention. We were starting to let ourselves feel that maybe her seizure was in fact a one time event.

Less than two weeks later on Monday, November 13th 2006, just after Mr F had gone to work Kid woke up complaining that her "tummy hurt". She started vomiting bile and "mouthing" (as I know recognized this to be an element of her seizure and not dry heaving). I took her to the bathroom and laid her down on her side. I got the clock and the phone and the medication. I waited for the five long minutes frantic nearly out of my mind screaming at Mr F over the phone. I went to administer the medication but she swatted my hand away... was that a sign that she was no longer seizing??!? The emergency medication has serious side effects and can lower her breathing rate and so giving it is dangerous too. I called 911 and asked what to do. They said the EMTs would know and to wait.

Again the fire trucks and ambulance were there within seconds. But this time the EMTs did not recognize this as a seizure and were not administering the medication. By this time I was certain that she was still seizing since her mouthing had returned. The EMTs were not moving quickly and not getting her oxygen... I wanted to jump out of my skin. They told me to get dressed. I did and when I returned I saw that Kid had both urinated and defecated in her pjs. This... people... is a definite sign that she was in fact seizing!!! I didn't know what to do... I asked if I should clean her up. The woman said yes. I couldn't believe nothing was happening yet. I cleaned her and we got her in the ambulance. This time I was not allowed to ride in back. The whole time the EMTs were talking to Kid, but they just didn't get it.. they thought she was postictal (the phase after a seizure when it is common for the patient to be "out of it") but she was still seizing. I was riding in the front helpless... hating myself for not just giving her the medication. Knowing that we were now going on 40 minutes of seizing and that Kid could suffer real serious consequences.

Mr F met us at the ER. This time Kid's seizure stopped on its own after about 45 minutes. They kept us in the ER and watched her for a few hours and diagnosed her as being Epileptic and started her on anti-seizure meds. They told us to see our neurologist a week later. A week?!? Yes one week.

Our neurologist was matter of fact about the whole thing. He went over the importance of the emergency medication and made it clear that if I don't know whether to give it or not that I should give it. He reminded us not to travel too far from medical attention and informed us that Kid would need to be on the anti-seizure medication for 2 full years. If she remains seizure free while on the medication for two years than they would wean her off of it. Most children outgrow Epilepsy in two years. He also scheduled a detailed MRI for Kid.

The MRI was hideous and terrifying. Children are put under for MRIs. Kid's MRI was the most detailed MRI, it took the tiniest slices of brain. It was 1.5 hours long. When she came out she was extremely agitated, since she was intubated (we were not allowed to be with her in this phase of recovery) so they drugged her. The gas they gave her to put her under made her very sick and she vomited all over herself. The drugs they gave her to calm her made her "out of it"... which is a lot like what she is like when she is seizing so I was pretty much having a complete panic attack until they finally wore off. The doctor told us we would get the results in the mail in a few weeks.

Two days later we got the phone call. I knew that was not good. They found a tiny imperfection in her hippocampus in the area that causes focal seizures. It is so small that it could be coincidental he told me. And yet he is calling me... I told myself. If Kid's seizures are caused by this abnormality she will not outgrow her Epilepsy, if this abnormality is merely a coincidence she still might. They don't know, we don't know, no one knows which. Epilepsy is not one thing, it is a broad term that covers many types of seizure disorders. Kid's form of Epilepsy is very unusual. Most seizures last less then 30 seconds. Kid's seizures were an hour and half and 45 minutes respectively. Kid's seizures are non-convulsive and so difficult to identify (even by trained EMTs). Kid seizures are called Status Epilepticus and are life threatening.

We wait and we watch and we listen and we worry. Every day. We lament the fact that Kid's personality is effected by her anti-seizure medication. That our once easy going, happy child is prone to tantrums and suffers from a very low frustration tolerance. I mourn that Kid and I , who once took weeks long road trips and had adventures, are for the most part grounded in Ann Arbor. I grieve and I grieve and I grieve... because honestly part of me died when I held her in my arms early in the morning Sunday July 30th and believed I had just lost my baby... forever... and that part of me is never coming back.

Today is November 14th 2008, Kid has been seizure free for one year. We continue to wait and hope that next year, today, we will be able to start weaning her from her medication. And that she will in fact have outgrown her Epilepsy and that she will continue to grow and thrive and amaze and impress and love and flourish as she so deserves to be able to do.

54 comments:

soap box girl said...

How terrifying this whole ordeal must have been for you and your husband. I don't know how you've managed. The fear alone would have rendered me useless. You really have faced this heroically.

I sincerely hope she will be free of medication this time next year, and it sounds like there's a good chance that she will be.

Thanks for sharing your story.

Mrs. Furious said...

thanks for reading it. :)

I've been working myself up to it for quite a while, what with awareness month and all...

katieo said...

Oh Mrs. F.
Anything I'm thinking of saying would probably come out trite or cheesy. So I'll just say I love my kids fiercely and there's nothing in the world like the fear of losing one.

Thanks for sharing.

Mrs. Furious said...

thanks.

now I must tell you (on a completely unrelated note) that your post today has kept me riveted!!! I may have to bring a little of that action over here...

katieo said...

lol, ok not to throw in fluffy comments onto a very serious post, but yeah! Who knew people were so passionate about groceries? It's been cracking me up all day!

Angie said...

I can't believe it's been a year since that day. I know I will never forget that day and seeing Kid brought down the stairs by the EMT. My heart broke for you and Mr. F that day (as it obviously did the first day i saw the ambulance and I ran down the road like a crazy woman). I pray (and you know I pray) that Kid has another good year and you can start weaning the drugs. You know you are all in my thoughts and prayers and that I love you.

Mrs. Furious said...

thank you Angie

we love you too

one of my most distinct memories of the first seizure is watching you run across the street from the back of the ambulance... I can see your face exactly...

katieo said...

I want Angie for a neighbor...

Angie said...

Yea. I remember that day. When I imagine it I get that same feeling. The same blood draining from my face.

I remember us turning the corner onto our street and thinking huh, ambulance, whose house it that. Then wait, is that the F's house? Nah, it's got to be at the anti-social's house. Then, Oh shit, shit, shit. It is the F's. Then can I go and see what's going on or is that being a nosy neighbor. Then fuck it! They are my friends. Got to see what's going on. Can I help. Oh God, please let everyone be okay. Never guessing it's Kid. Only thinking of something wrong with you/Baby F.

Never knew this would be your journey. I hope this journey is soon to be over. And the next journeys will be to Wyoming, Disney etc :-)

Mrs. Furious said...

Katieo,

yeah... you could do worse than having Angie as your neighbor! :)

michelline said...

Ad I sit her commenting, tears are rolling down my cheeks. Now I just want to go hug and kiss both of my girls who are thankfully healthy. I was on seizure medication from the time I was 2 until I was 5. Phenabarbitol. Anything and everything could provoke a seizure. I can't imagine what my mother went through. Reading your post made me realize some of what must have been in her mind.

This is a hugely powerful piece of writing. Thank you for taking the time to share this.

Robin said...

Thank you for sharing your story, I know it was hard. Your strength amazes me. Nothing scares me more than a life-threatening event happening to one of my kids. And you live with it everyday.

My thoughts and prayers are with you and your family.

etbroderick said...

Ugh. This was just heart-wrenching. I will never forget when my parents told me about this. The part that just wrecked me was that for a moment you thought she had died in your arms. I can't even go there. Ever since having Finn I have not been able to recover well once I get thinking about this...I am sorry that you and Matt have had to live this. You know--it's funny. I am so not religious. But I pray hard. For stuff like this I pray so hard I give myself a headache. And even though I don't know exactly to whom I am praying, I really believe in the power of prayer. I don't get to see Kid nearly as much as I'd like, so I am obviously not in tune with the subtleties of her personality like you and Matt are. But I hope you know that to me she is still a sweet and funny kiddo. I know her meds change her in ways, but she is such a toughie! She is so resilient! I am so proud of her and of you guys. Oy. I am so emotional now! Thanks for reminding me to pray again for Sweet Ruby. This is an important post for so many reasons. We all need to remember what is important in life. Sometimes we get way too caught up in the little stuff. Love, eileen.

Cara said...

I cannot imagine how terrifying this might be. I am really sorry you have had to go through it. You are stronger than most people ever could be for dealing with this so well. You are a great Mom :-)

Tina said...

Girl, BTDT! I can honestly say that I soooooooooooooooooooooo know how you feel.

First off, my mom had Epilepsy. Hers was so bad that she was, what's the best way to put this, institutionalized (sent to a live in home/hospice)when I was 14. Her seizures were what was then known as grand mal seizures (now known as tonic clonic) and she would completely fall out and convulse. Because of this, she ended up having massive head injuries, blood clots, major surgeries to remove said clots, wearing a helmet to protect her head, metal plates placed in her skull-you get the idea. It was extremely rough. I was scared it would happen to me (as hers onset when she was 20) or my kids.

B had seizures when he was 11 months old. Don't know why, but they were massive. I did the back of the ambulance trips, the medication, hospital stays (over Thanksgiving even), everything. He was on Phenobarbital until well after his first birthday. All his CT scans, MRI's, EEG's, EKG's all came back normal. They never attributed them to anything and he's been fine since 1998. It was a rough road, one I didn't ever think I'd have to go back down again...until I did.

K started having seizures last year, right around her first birthday. All her tests came back normal too. Hers though were attributed to her holding her breath. Evidently, a small percentage of children will pass out when they hold their breath and an even smaller percentage will have a seizure after they pass out. Leave it to my child to go all the way. She's been seizure free for over a year now and we're hoping for the next year to be the same.

It's tough, but good job at getting the word out. Not too many people know about how this affects kids and their parents. Here's praying your next year will be seizure free as well!

Mrs. Furious said...

Thanks everyone for all your comments and well wishes.

I'm having a hard time commenting to this so just know that I have read all your comments and do appreciate, greatly, what everyone has said.

Cheryl said...

Okay, I've finally pulled myself together. My poor boys are looking at me like I'm crazy, why is mommy crying and hugging us?
Because I love them with a strength I never imagined. Sometimes it just floors me, what I'd do for them. It's the way you love your girls.
I just had to say that you guys handle this horrible stress amazingly. I cannot imagine the fear and heaviness you carry around. I do think about that day, hearing you talk about thinking Kid died just breaks my heart. I think of that once in awhile and it always makes me cry and put my life back into perspective. Kid is strong and quite a little fighter (and sweet, smart, and beautiful). My first little niece, she holds a special place in my heart.
I love you Kid, and the rest of your family too.

Mrs. Furious said...

thank you Cheryl :)




PS
not enough pictures of Jake in that last Kodak album!

Tina said...

*Removing foot from mouth*

I wasn't trying to hurt you or make you feel bad. I just wanted you to know that I understood where you were coming from.

Sorry if what I posted offended or bothered you.

*Slinks back off to own blog site*

Mrs. Furious said...

Oh no Tina... not offended or bothered at all!

or by anyone else for that matter!


no I meant more that it is hard, or I feel weird, just responding the same way to everyone... like I can't make my responses match the comments...
No I really do appreciate all the comments :)

Mrs. Furious said...

Tina,

okay I just went back to read them over...
I think because I wrote that comment after yours you thought it was directed at you... no it wasn't... I was being sincere.

Tina said...

Gotcha! I just wanted you to know that I totally understand what you are feeling.

I'm here girl! You know, I think we must be the same person just living in different parts of the U.S.

MUAH!

eurydice said...

Wow, Mrs. F. That is terrifying! Hopefully she'll stay seizure free for the next year!

Thanks for sharing...

Feener said...

Wow, very informative post that maybe will help raise awareness as well. You sound like a very strong person and I hope that you and your wonderful brave child continue to move forward and be healthy.

Preppy Mama said...

Mrs. F- Thank you so much for sharing your story. I really feel clueless about Epilepsy and I appreciate you using your personal story to inform us and I plan to pass the word on.
You are an incredibly strong person and I will keep you in my prayers.

Amy said...

I've read where you mentioned one of the girls had neuro impairment, so working with kiddos that have neuro problems it striked a "hmmm?" in my head. So now I know (without having to ask and seem intrusive!)

Thank you for sharing your story. When I tell people I work with involved kids I typically get "oh that is so great, it really takes a special person to do that..." kind of response. My job is easy. I see a child for a blip of time compared to what parents have throughout each week. It's the parents that I admire, having the strength to continue on after tragedy steps into their lives. I know as a parent, you just do what you have to do, because it's your child and you would sooner have your eyes poked out than see them hurt in any way. It doesn't mean that it's not hard or stressful.

If this next year goes as fast as this last one has (at least for me!) time will fly by. Having a year seizure-free is just plain awesome and gives hope for this next year. I think another round of dancing to celebrate is in order!

Mrs. Furious said...

Hey thanks guys!

Julie said...

Wow, Mrs. F., what a living nightmare. Life is so fragile and precious...I am always having to remind myself that when my boys are driving me crazy. It makes me feel so sad to think of you holding your beautiful little girl with the fear that you were losing her. Thank you so much for sharing this with all of us.

Splaneyo said...

We are keepig our fingers crossed.

Mrs. Furious said...

thank you once again to everyone !

We really do appreciate all your comments and thoughts!

Avery Gray said...

How horrible! I can't imagine what that must be like. I hope everything works out okay, and that your precious little girl can come off that medication soon!

Bi0nicw0man said...

Mrs. F... you, my dear, are a strong, strong woman. I cross all my fingers and toes for the whole Furious family that the next year is as blessed as this last one has been. :)

Mrs. Furious said...

Thanks again everyone...

I feel Amy put it best when she said...
"I know as a parent, you just do what you have to do, because it's your child and you would sooner have your eyes poked out than see them hurt in any way"

thank you all for the compliments but I assure you they are undeserved... you would all do the same in my shoes...

Heather said...

Tuesday was a big day for you too. :) I'm so glad she's passed the year mark. Wonderful post. You are wonderfully brave.

Kiki said...

If its alright I'd like to post a link to this on my blog, I have a nephew who has been diagnosed with epilepsy. Just when he is about to get in the clear he has another seizure, the worst bit is he is a teenager and can't get his license until he goes 1-2 years without a seizure. Your story would be relevant for my family right now. I will check back for your approval.
Thank you so much for sharing your story, it is extremely poignant, and I appreciate your honesty.

Mrs. Furious said...

Kiki,

That would be fine. I am sorry that your family is having similar struggles. I hope that your nephew is doing as well as he can under the circumstances.

Kiki said...

Mrs. F, your kindness overwhelms me, your story is personal and I think that it will help my sister, I hope it will and in turn I hope only the best and brightest things for your daughter. Thanks again for the go ahead. Kiki

Danielle said...

Mrs. Furious,
I came across your post and felt compelled to comment. I am a kindergarten teacher and one of my students (and his family) is going through something VERY similar to what you went through with your daughter. The similarities in your stories are uncanny. I can't imagine the fear and agony you must have gone through. I hope that it's another good year for your daughter! I am holding my babies a bit more tightly tonight...

kenady said...

Mrs. F,
I linked to your blog from Kiki's and now that I have stopped crying I just wanted to say what a story... thanks so much for sharing it with all of us. I have two small children and my daughter is severely allergic to milk. When she was 6 weeks old she had an anaphylatic reaction to a milk based formula... her ears looked like cauliflower, then the vomitting and then her throat began to close. My husband sped us to the emergency room... I did not know what was causing the problem, but just "knew" something wasn't right. It was very scary...not quite the same as your story, but I certainly can understand the overwhelming feeling of helplessness when your child is in a life threatening situation and all you want to do is take it all away. I appreciate your honesty and now know much more about epilepsy. Thank you again for sharing your story and I sincerely hope that Kid sails through the next year with no seizures. -Kenady

Mrs. Furious said...

Kiki,

It is no problem... you are very welcome!



Danielle,

Thank you, and if you think the family would benefit feel free to give them the link to my post. I know for me, one of the hardest parts is that this type of seizure is not talked about very much in any of the literature.


Kenady,

Interestingly enough I always tell myself... at least she is not allergic peanuts!... anaphylatic reactions are terrifying and life threatening. IT sounds to me like you can very much relate. Best of luck to you with managing her allergy as she grows older (is it possible for her to outgrow it?)

Mrs. Furious said...

Danielle,

unless this is your turf... or you'd think they'd be offended by occassional swearing... in either case then of course don't pass it on. I didn't want you to feel guilty if that isn't what you want to do!! :)

kenady said...

The doctors said that most children with this type of allergy grow out of it at age 1, but she is now 4 and the allergy gets worse every year. We have an epi-pen with us at all times, her school has one, and I just pray that I won't have to stab her in the leg with it, but am prepared if I have to. It's amazing how you learn to live with it... our whole family uses dairy free butter, my son drinks soy milk, I've learned to cook and bake with out milk and amazingly it all tastes pretty good. So that's where we are now. Thanks for your encouraging words. -kenady

Mrs. Furious said...

Oh Kenady,

I'm sorry, I know that is not a good sign...

We were feeding Kid a wheat freee, dairy free, egg free, soy free diet for 1.5 years to see if we could eliminate her eczema (we did... and she outgrew these sensitivities thankfully).
I don't want to tell you info you already know... but we really liked the Enjoy Life brand of cookies and bagels (allergen free), and I used the Gluten Free Pantry baking mixes (also allergen free) made with Almond milk, and Vans frozen Wheat free waffles (I'm 99% positive they are dairy free as well) are excellent. The Ian's brand of frozen kid oriented chicken nuggets and stuff has a Gluten free line that is also Dairy free. Good luck!

kenady said...

Mrs. F,
Thank you for the tips on the foods. I will have to take the list with me to the Whole Foods Market (the closest one is 26 miles away). I try to make due with the goodies on the "Green" aisle at our Publix, but alas need to break out of the mold from time to time. I have become a professional at reading labels. Thanks again for your words. I am glad that my friend, Kiki, linked this post. If she hadn't we wouldn't have had this lovely chat. Hopefully we will meet again soon:) -Kenady

Mrs. Furious said...

You are more than welcome.

Danielle said...

Mrs F,
I will pass on the link to your blog. I think they are still in shock right now, so I'm not sure that they are ready to venture out of their shells yet. Thanks again!
~Danielle

Mrs. Furious said...

Hi Danielle,

I've been there... :(

Deb said...

I have done the unconscious, vomiting child thing, and I have waited out the EMT's, MRI's and EEG's. It is a terror unlike anything I had ever imagined before becoming a parent. A tiny part of me lives in fear every single day. My heart goes out to you, and I pray that Kid is one of the 80%.

Mrs. Furious said...

I'm really sorry to hear that Deb!
I hope this is a resolved health issue and not an ongoing one...

amber said...

Thank you for sharing your story and educating this reader.

Mrs. Furious said...

thanks Amber :)

The Middle Child said...

This post really hit home for me. I watched as my brother had seizure after seizure, but never for that amount of time. To this day he has wrecked his car three times (almost killed two wives and himself in these) and even after living with this condition for umpteen years, he is still hurt and embarassed, and upset that he cannot live life like everyone else. If he misses ONE DOSE of his meds he seizes. If he is late taking it (hours) he seizes.
I cannot imagine going through what you went through with my own child. He is my world and to think even for a moment I have lost him, I would lose my mind.

Congratulations on one year seizure free. And thanks for sharing.

Rebekah

The Middle Child said...

OMG, I just realized that comment I left made it sound like she will never have a normal life...

THAT IS SO NOT WHAT I MEANT... sorry about that. I was just sharing a little of our story.

My brothers seizures didn't start until he was 13, so it's all completely different....

I didn't mean... and I'm sorry.

Mrs. Furious said...

Rebekah,

No worries! :)

This is an emotional issue for everyone so I completely understand your wanting to share your story.

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