i was afraid of my child

Assuming Otter fell in the normal 90% of epilepsy cases, we expected the meds to work. He was almost 4. I woke up in the night. To the sound of gurgling. I ran into his room. I found my precious boy seizing. I screamed for Hubby. I left the room. I couldn't watch. Again.

As a parent, let me tell you. No matter how many grand mal seizures you watch your child experience, they NEVER get easier. Not for me. I was terrified to be alone with my own child. Do you have any idea how that made me feel as a mother? I was afraid. Of my 3-year-old child.

After a series of grand mals one night, Hubby went to work the next morning. Even though I begged and pleaded and cried in fear, wanting, NEEDING him to stay. I called my friend who lived a couple blocks away. I told her I'd call if he started seizing again, so she could come over and be with Raven in case I needed to go to the hospital.

The Beast started. I looked away. I called my friend. I started timing. One minute. Two minutes. Three minutes. "I'm going to the hospital."

We lived only a few blocks away from the hospital. When I arrived he was still seizing. I scooped up my boy and ran into the front doors, in my pajamas, bare foot, screaming for help. They took him from my arms. I collapsed. People stared at me with their hands over their mouths. Someone came and picked me up off the floor. It was like the scene of a movie.

He stopped seizing just as they were inserting the IV. He cried. He cried and cried and cried. I cried. He was scared. I was scared. We were scared.

I thank God everyday that he led us to a cure for this awful disease. My heart is racing reliving that moment. It will always be with me. I will always be afraid. It's not like we as mothers don't worry enough about our children the way it is.

Yes, he's in remission. Thank you God. But will it happen again? What if he's riding his bike? What if he's climbing the monkey bars? What if he's at the top of the slide? What if he's swimming? What if he's driving?

It will never end. I will always worry. I have to put my faith in God and trust that He will take care of my boy.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." ~Jeremiah 29:11


Linked at Shell's.

prayer is power: our story

Last week I told you I was going to make Prayer is Power a weekly post. I've been praying for God to show me how I can use this for Him. I want you to see the miracle of prayer, so each week there is going to be a featured blogger who shares how the power of prayer has affected his/her life.

If you would like to be featured, or know someone with a powerful story, please let me know.

Click the button below to post your requests and praises, {link welcome but not required} and grab the code on my sidebar to display the button on your blog.



The following is a post I wrote last year after getting Otter's normal EEG results.

Dear God~

I just heard the results. EEG NORMAL - FULL REMISSION. I am in awe of You. As tears of joy stream down my face, I fall to my knees and praise You for Your miracles. How can anyone not believe in You?

Do I know why You put this upon us in the first place? No I don't. Someday I plan on asking You face to face. What I do know... I am closer to You. I am closer to my son. I am closer to my husband. I am closer to my daughter. I've met people I never would have met. Is that why You did it? To save me? To save my marriage? It worked. You are the Ultimate Miracle Worker.

10 months ago, Otter was having seizures every day, sometimes up to 50. He was suffering. I was suffering. The EEG showed next to the worst there is. Seizure activity in his brain even when he wasn't having seizures. Our little boy was quickly slipping away from me, but I didn't lose faith. I knew You would bring us through...and You did.

I don't know what to say. I want to proclaim Your Miracle Work from the top of the world. You are The One. You are The Only. Thank You Lord. Thank You thank You thank You thank You. You saved him. You saved me. You saved our family. We will praise You forever and ever. You are always first in our lives. Thank you for letting us see who our little boy can be. We love You. Forever.AMEN!

God bless your week!

prayer is power

As I read Shell's post about her son, it got me thinking about the incredible power of prayer.

The school called this week and asked me to come right away. Otter had fallen and his nose was bleeding. He was acting disoriented and they were nervous he may have had or was going to have a seizure.

If you don't know, Otter has a history of epilepsy. He's been seizure-free for over 2 years but we saw a small absence seizure last month. We thought we were starting over and the devastation took over, but with the power of prayer it turned out to be a one time occurrence.

As soon as I got the call from the school, I immediately started praying. And you know what? He was completely fine. He was rolling around on the floor during PE and whacked his nose on the floor. The disorientation came from the fact that he FREAKS at the site of blood and especially when he gets bloody noses.

Our boy, our healthy normal boy, who they told us would be mentally retarded because of multiple daily seizures. The same "they" who told us diet was a last resort. Our boy, who was falling away from us so quickly, was cured.

Amazing miracles through the power of prayer. True and real miracles.

I just started a prayer journal and I'm so excited to be able to document this awesome power, to have on paper the miracles He performs.

Do you have a prayer request? Let me pray for you. Comment or email me at aliasblogger {at} yahoo {dot} com. And please share with me the miracles he's performed in your life.

otter's seizures

During a play Otter was in last week, I was sure I saw him have a seizure on stage. His eyes blinked rapidly and his movements slowed. Hubby didn't see it so I thought I was being paranoid. Thankfully Hubby was videotaping and when he watched the video he saw it too. When I asked Otter about it he said that sometimes he sees red dots and he feels like he's losing his mind. Today he told me that sometimes his eyes blink really fast and he sees flashing colors and the weather. The weather??? I know, right?

We sent the video to Dr. K and he confirmed that it was a seizure.

Although we haven't seen any more seizures since the play, Otter is able to tell me when he has them. When I asked him what happens when he has one, he was actually able to show me what they look like, which I think is CRAZY! When I mentioned this to Dr. K he said it's very odd that he would be able to do it on command, which would be more common for a tic. I sent him a video and it's looking like they may be tics. However, the video at the play still looks like a seizure. So who knows! If they are tics, his EEG will still be normal. Please pray this is the case! The Lord is taking care of us!

"The LORD will fight for you; you need only to be still." ~Exodus 14:14

devastation

It's looking like Otter's seizures have returned. Please pray for us. More to come later.

the story of my life

So once again I've been MIA for a few weeks. I wouldn't even consider myself to be that busy, just a tad on the lazy side maybe. When I get home I don't even have any energy to get on the computer, so you can only imagine what my house looks like. I'm so thankful I have a cleany husband.

So Otter's EEG went well, but the tech said he had a few discharges during sleep. :( His neuro at Hopkins hasn't seen the EEG yet so we won't know much until we hear from him. We had the same tech we had last year, but she was quite pleasant this go around thank heavens, or I would've not been so nice.

We decided to go to Six Flags instead of the water park, which was a good choice because it was a bit chilly. Word to the wise, don't go to an amusement park when you're pregnant, it's not that fun. It was perfect for Otter cuz I just took him on all his little rides, but there were even rides he liked that I couldn't go on! The best part was when I about got kicked off a ride, but neither of the workers had the guts to ask if I was pregnant. It was a great conversation to watch.

This Friday will be 5 years of marriage. The city will be honoring us with fireworks. :) Have a safe and happy 4th!

you're kidding me

Running a little late again.

Had OB appt on Friday.

STILL couldn't hear the heartbeat!

15 weeks now.

Checked on ultrasound.

Strong heartbeat!

Very active baby.

Posterior placenta.

5 more weeks until we find out the sex.

By the way I decided to find out the sex.

Heading to Children's tomorrow for Otter's EEG.

Not looking forward to sleep deprivation.

Can only sleep from 2-6 am.

Ugh.

If EEG's normal he's coming off the diet!

johns hopkins trip #3

• Roundtrip plane tickets from Denver to Baltimore: $558.00 (great deal huh)
• Hotel stay for 3 nights: $257.98
• Car rental for approximately 2 days and 16 hours: $112.76
• 8 months of seizure freedom: priceless
  

my passion for the county fair

It's 3 in the morning. Can't sleep. Not only because Otter just wet MY bed but because I'm unconsciously that excited for this week...the county fair.

Ever since I was a little girl, my favorite part of the summer has been the county fair. I don't know what it is exactly. The entire atmosphere just overwhelms me. Back then it was cotton candy, snow cones, and unlimited carnival rides. Now it's old friends, business expos, new friends, food, and unlimited carnival rides. I love to just walk the grounds and see who I'll run into. Last night it took us an hour just to get about 100 yards. I just LOVE LOVE LOVE it! The way the vacant grounds become a small city in just a day.

I've passed my passion down to Otter, who is now snow cones (actually just ice because of diet) and unlimited carnival rides. He's been blabbering all week about the rides. We'll have to do the cotton candy next year. I can't tell you what a huge weight has been lifted off my shoulders since he's not dropping. Last year was just stress. More about that later.

The peak of the fair comes on Saturday morning. The Parade. What is it about parades that are so great? I'm wondering how this year will be since Otter can't have candy. I'm sure we'll enjoy it just as much. I don't think it's about the candy but a 4-yr-old may feel differently. :)

So, if you're wondering where I am these next few days wonder no more. I'm living the dream folks, living the dream.

our miracle through Him

Dear God~

I just heard the results. EEG NORMAL - FULL REMISSION. I am in awe of You. As tears of joy stream down my face, I fall to my knees and praise You for Your miracles. How can anyone not believe in You?

Do I know why You put this upon us in the first place? No I don't. Someday I plan on asking You face to face. What I do know... I am closer to You. I am closer to my son. I am closer to my husband. I am closer to my daughter. I've met people I never would have met. Is that why You did it? To save me? To save my marriage? It worked. You are the Ultimate Miracle Worker.

10 months ago, Otter was having seizures every day, sometimes up to 50. He was suffering. I was suffering. The EEG showed next to the worst there is. Seizure activity in his brain even when he wasn't having seizures. Our little boy was quickly slipping away from me, but I didn't lose faith. I knew You would bring us through...and You did.

I don't know what to say. I want to proclaim Your Miracle Work from the top of the world. You are The One. You are The Only. Thank You Lord. Thank You thank You thank You thank You. You saved him. You saved me. You saved our family. We will praise You forever and ever. You are always first in our lives. Thank you for letting us see who our little boy can be. We love You. Forever.

AMEN!

To my readers: Thanks for your prayers! If you know of a good verse that fits this situation I'd love to hear it! Thanks!

true randomness

Before I start, I'm giving you a heads up that I have a lot of randomness going on and I'll be changing the subject lots. So don't try to connect one paragraph to another. You'll get confused. :)

So I've been spending the last few hours getting high off teacher shopping! I JUST LOVE ALL THAT TEACHER CRAP! If you're a new teacher you know exactly what I'm talking about! So many choices: calendars, pocket charts, alphabet sets, color sets, shape sets, number sets, bulletin boards, curriculum books, adfkgjhadsgkjhfasdlkgasdf;lhgadstlk;hjr. DO YOU SEE HOW EXCITED I AM??????? I'll post pix as soon as I get my classroom organized! I'M TOTALLY LOVING THIS!

So we're at the mall on Friday, (I told you,) and Hubby and I are watching the kids play in the kids' area. I jump at the LOUD DEEP sound of "THIS KID JUST SPIT ON MY KID! IS THIS YOUR SON?" I fearfully look over to find it is NOT my son, thank heavens, but immediately feel remorse for the mom whose son it was. Does that make sense? This man just keeps yelling! He goes around to each parent until he finds "the one", a little old lady scared out of her granny pannies. I thought he was gonna take the lady out! He told her she better deal with her son and assure it doesn't happen again, yatta yatta. He then tells his son, "He spits on you again you kick his ass." Wow, great parenting skills sir, except sir does not fit here at all. Did I mention this all happened as he was standing OUTSIDE the play area. Pretty sure he echoed throughout the entire mall. Whoa. Was I thankful that was not my son...this time. However I pray my son would know better.

We still haven't received Otter's EEG results yet. I called yesterday and they said it would be a few more days.

Do you ever wake up so pissed because you had the most perfect dream and then woke up to realize what your life REALLY was? I had one of those this morning. Ruined my entire day. Just gave me that ucky gut feeling. Don't get me wrong, I love my life. Hubby and I have actually been doing great lately, and my meds appear to be working. Holla! But let's face it, reality is reality.

Ok, I think I'll be done with my randomness for right now. Later.

salvation sunday on monday: God's word on epilepsy

And when they approached the multitude, a man came up to Him, kneeling before Him and saying, "Lord, do pity and have mercy on my son, for he has epilepsy and he suffers terribly; for frequently he falls into the fire and many times into the water. And I brought him to Your disciples, and they were not able to cure him."

And Jesus answered, "O you unbelieving and perverse generation! How long am I to remain with you? How long am I to bear with you? Bring him here to Me." And Jesus rebuked the demon, and it came out of him, and the boy was cured instantly.

Then the disciples came to Jesus and asked privately, "Why could we not drive it out?"

He said to them, "Because of the littleness of your faith. For truly I say to you, if you have faith like a grain of mustard seed, you can say to this mountain, 'Move from here to yonder place,' and it will move; and nothing will be impossible to you.
But this kind does not go out except by prayer and fasting."

Matthew 17:14-21, Amplified Bible

Is this crazy or what? Did you know that Otter's diet simulates the effects of fasting? I read this passage after Otter had started the diet and I about fell outta my seat! God really does talk to EVERYONE! I am positive that whatever you are going through, God has something to say about it in His Word. It's just amazing. Amazing I tell you! Amazing.

6 months seizure-free!

Today marks 6 months of seizure freedom for Otter. I can't even begin to describe what a huge milestone this is for us! We praise our Awesome Redeemer for getting us this far, and we pray for more seizure-free days, forever and ever!

Congratulations, Otter! We love you!

otter's eeg today

OK folks, brace yourselves, this may be a little harsh. I'm so pissed right now and I need to vent. No, I won't obviously send this letter to the Brooklyn B... who did Otter's EEG today, because I'm sure tomorrow I'll read this and think I'm overreacting. Plus, I'd never have the balls to go through with it anyway. (literally, hehehehe)

Dear EEG Technician~

Let me start off by saying I left my son's EEG this morning sick to my stomach. No, he was not a perfect angel during the procedure, but if you only knew half the shit he's been through you would possibly understand why ANY kind of test in a hospital setting is upsetting for him, whether it "hurts" or not. Let me add that you did not at all help ease the stressful situation.

I received negative feedback from you the entire procedure, and you made us all very uncomfortable, starting with the way you reacted to me telling you our neuro said sleep deprivation was not necessary. No, our doctor is not old, and that's a little insulting, don't you think? As I shared with you, he's known around the world for his work and he works at Johns Hopkins, one of the best known hospitals in the U.S. Yes, his name does sound familiar. Probably because he co-authored The Ketogenic Diet book. Ya, I could tell by the look on your face that was a shocker.

You mentioned my son was the only child you've ever met who had success on the diet. MAYBE THAT'S BECAUSE YOU DON'T KNOW ANYONE ON THE DIET BECAUSE THE HOSPITAL YOU WORK FOR DOESN'T BELIEVE IN IT, SO KIDS WHO COULD BE SEIZURE FREE ARE SUFFERING! I don't even want to think about where and what my child would be today without this miracle diet.

On a final note, the way you treated my son was pathetic. I swear if you talked to him the way you did one more time the shit would've hit the fan. From my observations, you don't work well with children. Therefore you may want to rethink your career choice at a CHILDREN'S hospital.

Sincerely,

P.S. Your little Brooklyn, NY accent doesn't help your image. It made me want to punch you in the face even more.

when in doubt, JUST TAKE IT

We got back late last night from our 1-day trip halfway across the country. Otter's appointment went great and we will begin weaning him off the Zonegran this week. We also found out that if things continue to go well, he can start coming off the diet in May of next year!!! Now, I'm letting you in on a little personal info here because I want the best neuro in the world to be recognized. We see Dr. Kossoff at Johns Hopkins. I found him on the internet and he is WONDERFUL! He's surpassed every possible expectation! He returns all my emails within the hour, even on weekends! What doctor does that? He cares so much for Otter and we are so blessed to have found him. He is our miracle!

We didn't take Raven on the trip, but I think we're going to for our next trip in November. We're planning on making that trip more of a vacation instead of a fly-in fly-out.

Now, if you recall, we left on Sunday and I hadn't yet packed as of Sunday morning. I haven't mentioned that although I'm the best procrastinator, I work very well under pressure. I'm not one of those last minute procrasties who does poor work. However, I do tend to over-pack a little. My theory is: when it doubt, just take it. I'm sure that every single time I've decided not to take something I always end up wishing I had. I have yet to take my own advice.

Hubby and I went rounds before we left because I wanted to take the umbrella stroller and he didn't. He thought it was just something extra to tote around because Otter can "walk just fine." I say why worry about where he is every 5 seconds and just put him in the flippin thing. So I said I would put it in the trunk just in case, and I actually let him talk me out of it! The stupid thing weighs like 2 lbs. It wouldn't have hurt anything in the trunk. And you'll never guess...ya, we pretty much needed it EVERYWHERE we went, but Hubby still wouldn't admit that I was right. However, I was sure to remind him at every available opportunity. In conclusion, (of this paragraph anyway) when in doubt, JUST TAKE IT! You're better off taking it and not needing it than not taking it and needing it, right?

The hotels, good, except that my presence apparently made the lights go on strike. We stayed in two hotels and at LEAST half the light bulbs were burnt out at each one. Just my luck.

The plane rides, good, except for an hour delay on the flight home. (It's ALWAYS the flight HOME.) And a slightly embarrassing moment when my son laughed and yelled, "Hehehe, that tickles my wiener," during take-off. (I asked Hubby and apparently it really does.)

The rental, a 2008 Hyundai Santa Fe, GREAT, it's always nice to pretend to own a vehicle we can't afford.

Now it's back to life, back to reality, but FIRST I'm gonna take a nap, (ya know, before I do the laundry...)

otter's epilepsy story

On April 27, 2007 my son, 3 yrs at the time, had his first tonic-clonic seizure (grand mal,) with another following about nine hours later. No tests were done because the seizures were thought to be contributed by him eating a flower. He was fine for a couple months.

On June 9, his eyes rolled and his head shook a little. I thought it was weird, but had been so paranoid I dismissed it as nothing. I think my husband was beginning to think I was crazy. Our friends noticed a few others in the following weeks. I took him to our doctor who made an appointment to see a neurologist a month later. I never knew there were different types of seizures, so I was shocked to hear the little episodes could in fact be seizures.

On July 1, he had another tonic-clonic. We took him to see a pediatrician & neurologist and an EEG was done. He had 4 hours of sleep, and had three tonic-clonic seizures the day of his EEG. The pediatrician prescribed Valproic Acid and sent us home. He was diagnosed with epilepsy after the EEG. He began having drop seizures, but neither the pediatrician nor neurologist would confirm that. After a few weeks on the Valproic Acid with no change in seizures, we actually met with the neurologist for the first time. He COMPLETELY misdiagnosed him with complex partial epilepsy, which I didn’t agree with at all. He was definitely not having complex partial seizures. He was then put on Trileptal, which made the seizures worse.

On August 7, we went to a Children’s Hospital. They diagnosed him with generalized convulsive epilepsy, having myoclonic, akinetic, absence and tonic-clonic seizures. He had drop seizures most often. They prescribed Depakote and Zonegran. The seizures continued.

On August 22, he had two tonic-clonic seizures. We took him back to Children’s and our neurologist ordered another EEG. An MRI was done which was normal, but the EEG showed patterns similar to the Lennox-Gastaut Syndrome. Our neuro replaced the Depakote with Keppra, and increased the Zonegran. Austin was then diagnosed with intractable epilepsy, (epilepsy that’s difficult to control.) He still continued to have seizures daily. He wore a helmet because he had drop attacks so frequently. The next medicine our neurologist wanted to try was Topamax, but I had heard horrible things about it and didn’t want him on it. I began researching the Ketogenic diet and found a link to atkinsforseizures.com. I emailed his story to a neuro at Johns Hopkins and he said it sounded like he had Doose syndrome, or myoclonic astatic epilepsy. We arranged an appointment to meet with the neuro to start the modified Atkins diet. We started the diet on October 19, 2007 and he was seizure-free by October 23.

In November 2007 he had another tonic-clonic due to a missed med dose. In late December he had four tonic-clonic seizures, which we think were possibly caused because he was fighting a viral infection, but we’re not for sure. Either way, he has been seizure-free since and we are so grateful for finding this diet. We contribute his healing to our Awesome God, and praise Him for our miracle!