Jump to content

Menu
Giving You and Your Child a Road Map to the Best Possible Education
The Well-Trained Mind Community

DS 4. Had a seizure last night.

MommyLiberty5013

By MommyLiberty5013,
in The Chat Board

 Share

Recommended Posts

MommyLiberty5013

MommyLiberty5013

Posted
Posted (edited)

UPDATE: We are home. The MRI was clear. The EEG was not. He displayed abnormalities on the left side of the brain, which affected his right side. Hence, the right side seizing. Based on the EEG, the pediatric neurologist is estimating without meds, he will have a 75% or greater of a relapse. So, we have decided to medicate two times daily and have rectal rescue meds if he seizes longer than 5 minutes.

 

Now that we have seen one seizure, both DH and I think he has had others at night, while asleep and both DH and I attributed his jerks to dreams. Sigh. Doctor is calling this epilepsy.

 

Our follow up is in September. The doctor wants to see how this med works out. We have a new normal. I like to write at times like this. It helps me calm and focus. This is from today...

 

Hi, It's DS here. I have a story for you.

 

I love to run around and when I do, I make sure to go as fast as my legs will carry me. I swing my arms with fierce intention back and forth. I climb trees and other things with the same determination. I give these kisses called "smackers" and mom says they are the best kisses in the whole world. She loves getting a smacker from me. I will fight raccoons for my marshmallows - golly I enjoy that squishy sweetness - I do steal them from the pantry and I will not pass up any opportunity for gum. If my big brother and sister can do it, well, I will be close behind. Naps?? Haha, I ditched those when I was two. Dad says I am pretty happy when I am dirty - but I like it best when my snot is smeared together with field dirt across my upper lip. Mom doesn't let me give her smackers then, but I have been known to try and get one past her defenses. Yes, I love to smile and if you let me, I'll tell you my banana joke. It's that one about the banana going to the doctor because he wasn't peeling well.

 

The other night I wasn't peeling well. Daddy came into my room and found me in bed making noises like stifled cries. For some reason my right arm was twitching. Scooped up in Daddy's arms, we went down to the family room and there was mom. My whole right arm began to shake and I stared at my parents with dilated pupils as my chest began to heave and I made really weird coughing noises - like hacks. Mom looked at Dad, Dad looked at Mom, and I heard Mom say a new word, "He's having a seizure."

 

"What means 'seizure,' Mommy?" I wanted to ask, but my speech had been robbed from me. Daddy held me close; my whole body shook in his arms. Mom looked so funny, she had two phones up to her head, one to each ear - on one she had the 911 operator and the other she had Grand Dad. I knew mom was a multi-tasker extraordinaire, but this really took the cake for her capabilities. Both my parents were so calm and despite my now convulsing face and leg, they were there and spoke encouragement to me and prayers over me.

 

What's happening, Mom? Dad, why can't I speak? Now there's new people in the room. Hey - I have seen people like this before on our learning DVDs - they have on uniforms and carry equipment...

 

After while, Daddy carried me into the darkness outside, I had stopped shaking, but I was limp and lifeless. There was a bright light illuminating our driveway, and red and blue smaller lights swirled in the tree branches. Daddy put me on a bed, but this bed had seatbelts. What kind of bed is that? Then, I felt myself go up and up and soon, Mom's face appeared beside me, she also had my favorite stuffed animal, John Bear. I got him on my Baptism day and he's named after John the Baptist. He's blue.

 

The other faces, I did not know and hey - what's this thing that's squeezing my arm? Why is my finger lit up red? Am I E.T.? Mommy sang me Twinkle Twinkle, but for some reason she couldn't make it through the song and her singing turned to some kind of whisper. It was like mommy's song got swallowed by an unhappy emotion. Anita, the lady in the uniform continued for her. I like Twinkle Twinkle and I managed a small smile. That made Mommy and Anita very happy. Hey - what's this thing squeezing my arm again? I love this red finger light and I put up my hand to show Mom. She and Anita liked that too, so I smiled again.

 

Pretty soon, we got into a hospital, I think. I was once at a hospital before when I hurt my finger, but now there were more people in my room than I remember from before. Dad was there too, I think he followed behind me while I rode with Mom and Anita. Everybody was very nice, but they kept squeezing my arm, and Hey! Why are you taking off my clothing? My right arm fell limp on the bed. They kept wanting me to squeeze their hands.

 

Hi, Meme! Why are you here too? I smiled. This was some kind of party and I even got a new shirt that had clowns on it - it was ripped though, the back was all open, pretty dumb if you ask me. The doctor said my underpants looked cool - yeah, I put on the Flash ones that morning. We're pretty much into super hero underwear around my house. Sometimes I even load up on them and wear two at a time. But, that other night, it was just my Flash ones. I am kinda bummed I didn't have on the Superman ones too. Now, THOSE are cool. I managed another smile and the doctor liked that. So I kept smiling and began to make a few words. Everybody seemed fairly happy about that too. So, finally I just asked if I could watch some TV.

 

Mom was like, "Yes! Whatever you want, DS." So then some ladies in blue pajamas came around and stuck this thing into the back of my hand. Pretty much any lady who saw me commented on my tan and every lady in there had on blue pjs and sneakers - that is an odd combination.

 

They found it amazing that I did not utter a sound when they put that needle in my hand, in fact I was more interested in whether the blood that came out was green. Mom said it would be pink, but no, Mom, boys don't have pink blood. I informed her that my blood was actually red and marveled at it filling the tubes. Dad, Mom, MeMe, and the doctor who also had on pajamas, discussed something called a "Full panel" and a "CT Scan." I know "C" and "T," but, "Scan" I had no idea about.

 

As it turns out, a CT Scan is this long bed in a cold room with a huge lifesaver candy at one end. If I laid really still the huge lifesaver took a picture of my head. I got to go on that ride. John Bear didn't. He had to stay back in my room that had the shower curtains for walls. Mom watched from the Mission Control room and Daddy stood beside me and had to wear a heavy cover over his body - I think it was made of lead because I could not destroy it with my super powers.

 

Little by little my body returned to normal - I could say and do anything I wanted to and my body obeyed. Well, pretty much. My eye lids kept drooping while I watched TV back in my shower curtain room and I fell fast asleep.

 

What was really odd was the next day, I woke up in a totally new room at a completely new hospital. Apparently during the wee early hours of the morning on the next day, Mom and Dad moved me to the new hospital - this hospital was ALL for kids. Ladies here wore colorful pajamas. I even had a police doggy come visit my room and sit on my bed. Here at this hospital, I heard some more letters, "EEG" and "MRI."

 

The first one means sitting in bed with 26 colorful wires glued to my head for several hours. Mom put on the "Network" for me and we watched a cake making competition about Wonder Woman cakes. Too bad it wasn't Superman. I like him better and no one will ever catch me in super girl underpants.

 

My EEG was something called "abnormal." It showed abnormalities in the electrical impulses on the left side of my brain. My kids' brain doctor with polka dots on his socks, said that there is a 75% chance I would have another seizure. I don't get "75%" or the word "chance," but I know it caused Mom and Dad to be very serious and ask a lot of questions.

 

While I was preparing for my MRI, I overheard Mommy tell Daddy what she had written down on her paper. She wrote, "I am not worried." And, I do not think either one of my parents were worried. There was a lot of care about them, but no fear and certainly there was never any panic. I felt safe. I did hear them pray a lot to Jesus and ask Him to be close and to provide peace, comfort, and healing. I like that. It is what we do in our family. More families should pray, I think...

 

For my next ride, I went in a wheel chair deep into the basement of the hospital. It was fun riding elevators and zooming down hallways. In this next ride, I had to be completely asleep because they didn't want me to wiggle and to be honest, wiggling is what I do best. This new doctor lady, who also commented on my tan, put me to sleep with some white milk stuff in my hand shot area where the blood had come out the night before. The last thing I remember was Mom and Dad standing above me, my eyes widened, then closed, and I fell fast asleep.

 

I guess while I was in that ride having my head photographed, Dad and Mom did some talking and mom cried too, I imagine. See, she and daddy had been running on something called adrenaline and 3 1/2 hours of sleep. I think a bit of tiredness and emotion finally caught up with her. Dad got on Amazon and ordered a book about seizures and Mom called Grand Dad. Then, Dad called my grandparents in Iowa. Family is what my family does best. We're pretty tight and we are Team ***********. My people have my back.

 

After my MRI ride, my kid brain doctor with polka dot socks came back and said my brain pictures were fine. Everyone seemed very happy about that. I mostly just watched some cartoons and heard a few words that I don't know, like, "Medication two times per day." "Normal life." "Can eat and do whatever he wants." "Be watched closely while in the tub or a pool." "Rescue medication." And this other word that I cannot quite say yet....

 

"Ep...."

"Epil..."

Yeah, "It's Epilepsy."

 

I have something called Epilepsy. Mom and Dad say our family is on a new journey. That's cool because B********s love adventures. Well, I am sure Mom and Dad would not have chosen this sort of adventure and would rather our family adventure only be things like hiking and traveling, but it did come and now they are facing this as a team and so are my brother and sisters. It's what we do.

 

So really, I am the same kid. I will get to wear a cool bracelet - I picked blue. Mom or Dad squirt a yogurt-tasting liquid in my mouth in the morning and evening. And if I have another seizure, my family and community of friends knows what to do to keep me safe and rescue me if my seizure goes too long.

 

Plus...I have the doctor with the polka dot socks to manage my medications and help advise my parents. I have the super hero underpants. And, I have the biggest, best, strongest super hero ever and His name is Jesus. I'm gonna ask Mommy for Jesus underwear. Me and Jesus and my underpants will show this Epilepsy villain who is boss!

 

 

 

 

 

 

 

 

 

 

 

He's otherwise healthy. No known allergies. DH found him in bed seizing. It lasted 15 minutes. Called 911 and by the time they arrived it had stopped. Fully affected right arm, leg, and right side of face. Took ambulance to ER in town.

Blood work and Urine normal. CT normal. Moved him last night to a Children's Hospital in the big city. MRI today at 2. Hooked up now with an EEG (26 wires measuring his brain electricity). His vitals have remained stable. Staff has confirmed a partial seizure not related to his body temp changing drastically in a short period of time, which can cause kids to seize.

DH and I are in 3.5 hours of sleep. Please pray for us.

Edited by MommyLiberty5013
Link to comment
Share on other sites
momacacia

momacacia

Posted
Posted

Will pray.

 

My dd had her first febrile seizure at 5. Eventually had the EEG and a diagnosis. We did the GAPS diet (similar to Johns Hopkins ketogenic diet, just more balanced imo) and she's been seizure free since a month after we started the protocol. I remember the first Thanksgiving after realizing it was working. Still so grateful!

  • Like 1
Link to comment
Share on other sites
unsinkable

unsinkable

Posted
Posted

He's otherwise healthy. No known allergies. DH found him in bed seizing. It lasted 15 minutes. Called 911 and by the time they arrived it had stopped. Fully affected right arm, leg, and right side of face. Took ambulance to ER in town.

 

Blood work and Urine normal. CT normal. Moved him last night to a Children's Hospital in the big city. MRI today at 2. Hooked up now with an EEG (26 wires measuring his brain electricity). His vitals have remained stable. Staff has confirmed a partial seizure not related to his body temp changing drastically in a short period of time, which can cause kids to seize.

 

DH and I are in 3.5 hours of sleep. Please pray for us.

Lots of hugs and strength.

 

My Dd's epilepsy presented the same way, except she didn't completely stop seizing for hours; they just kept pushing different meds. It was a nightmare.

 

If you have any questions, let me know.

 

I'm really sorry.

  • Like 1
Link to comment
Share on other sites
displace

displace

Posted
Posted (edited)

Prayers for your dc!

Have they checked him for diabetes? Just asking because we've dealt with a couple hypoglycemic seizures and they're pretty violent.

(((Hugs)))

They likely checked that with the first labs in the ER. Edited by displace
  • Like 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
 Share
Go to topic listing
×
×
  • Create New...