The Scariest Moments of My Life To Date.

I couldn't sleep Friday. I don't know why but I just couldn't. I finally decided to try to sleep at 3:30am.

Robbie came in around 4:30 - he said his stomach was bugging him and he couldn't sleep either. So he snuggled in between Rob and I and we all slept.

I woke up a little before 6. I needed to shower and dress and start the day. I went downstairs and not even 5 minutes later I hear a commotion upstairs... Rob's voice. I figure Robbie must be up and he is telling him to go back to bed. But then.. I hear Rob screaming my name.

"Jeannie.. hurry.. Robbie is having a seizure.'

I turned cold.

I ran up the stairs and into my room. Robbie was not seizing anymore. His lips were blue and his eyes were open. I couldn't see the blue of his eyes anymore because his pupils were so dilated.

I thought he was dead and I swear my heart stopped.

I grabbed him and yelled his name. He didn't answer me bug I could feel his heart beating a million miles a minute. I heard him breathing really strangely. And then his color returned and he closed his eyes. He looked like he was sleeping but he wouldn't wake up.

Rob was already on the phone with 911. They said to turn him on his side. Which wasn't a problem since he'd kind of rolled onto his side on his own. I held him and kissed him and tried to wake him up but he was completely non-responsive.

The police and ambulance were there faster than you can imagine.

They put oxygen on him but he still didn't respond. They said it was normal after a seizure. The word normal didn't seem to fit seeing my boy like that.

He woke up after about 10 minutes. He was disoriented and wanted to pee. He tried to stand but almost fell down.

Rob told the ambulance driver that Robbie was sleeping and then he farted. Loudly. So Rob turned toward Robbie and the bed was vibrating. He thought the Robbie was laughing - but when he turned him over he realized it was not laughter. He tried waking him up. He thought it was some sort of joke - but then he screamed for me.

They took him by ambulance to Southside. Robbie woke up more in the ambulance and was nervous and crying that he wanted to go home. At the hospital he complained that he was hungry and wanted to go home. They gave him a CAT scan and took some blood and then they transferred him by ambulance to Cohen's Children's Hospital (formerly Schneider's). He was still hungry and now he was worried about missing our block party.. almost back to his old self.

He ate a bagel, saw 3 or 4 doctors and did a bunch of tests that seemed like field tests for sobriety. They gave him an EEG.

They said 1 unprovoked seizure (meaning unrelated to any identifiable trigger - medicine, fever, etc..) is tested and watched. He is now 50% more likely to have a 2nd seizure within a year and will be classified as epileptic and put on medication. They said epilepsy is a condition - not so much a 'disease' - but I was frustrated that they couldn't tell me the CAUSE of the 'condition'. She said it's fairly common that they never find out the cause.

His CAT Scan showed no identifiable brain bleeds or tumors, but they will want to do an MRI. His EEG showed a pattern of irregular 'spiking' activity - but the neurologist has already gone by then so he couldn't tell me exactly what that meant.

We were discharged around 3pm and I wanted to call off having people at the house.. but Robbie was looking forward to it. And my friends/family wouldn't hear of us being alone. So they came over and took his mind off of his worries and mine off of mine for a little while. GREAT group of people.

For now.. Robbie's sleeping in my bed. I keep wondering if this has happened before in his own bed and we never noticed/knew.

Monday - follow up with Robbie's ped and get a recommendation for a local pediatric neurologist to see if there is an alternative to going to Queens.

Sunday - cuddle my babies and thank God for them.

Re: The Scariest Moments of My Life To Date.

woah.

I have no words for that.

Glad he is ok.

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How scary! Hope you get some answers

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Wow. I hope you get some answers.

For Robbie not wanting to miss out on fun!

for all of you.

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We had a child in my day care that had seizures like that and even though he wasn't my child the fear of seeing a child you care about with blue lips and for lack of a better word looking"dead", I can attest to how terrifying it truly is. I can't even imagine the fear when it is your own child. The said it was febrile seizures brought on by the sudden spike in a fever from ear infections.

I hope you find answers quickly!!

Re: The Scariest Moments of My Life To Date.

OMG how so very scary. It sounds like you and your husband worked together really well in taking care of Robbie during this. I'm so glad he is okay.

On a side note, this year we had a speaker come to my school to talk about epilepsy (she spoke during a faculty meeting). I don't remember the name of her organization, but there is definitely help and support out there!

Re: The Scariest Moments of My Life To Date.

oh Jeannie.

I am so sorry. I know it's a common thing but it's never common when it's your child. I hope you get the answers you need. I'm glad you were with him.

Re: The Scariest Moments of My Life To Date.

Thanks guys.

It definitely is not uncommon. Neurologist said roughly 3% of children will have some type of seizure in their life. Most of them will be febrile seizures. She said people have 'seizure thresholds' - some people are just more susceptible to them. Robbie did not have a febrile seizure - there was no infection or fever in his system so they classify it as an unprovoked seizure which just means they have no idea what brought it on.

Based on his EEG reading the resident seemed to think it would be fairly likely he will have another episode 'within a year'. So they gave us some tips for the next time. I figure I'd pass them on. You should first protect the seizing person's head. Put a pillow under them or place their head in your lap so they don't hurt themselves. Don't put anything in their mouths - no wallets or anything - it doesn't help, they won't 'swallow their tongue'. Turn the seizing person gently on their side. This way, if they vomit, they will not aspirate back into their lungs. Calling their name, slapping their face, pinching them or otherwise trying to 'snap them out of it' is useless - it needs to run it's course. After a grand mal seizure there is something called a postictal period - the person may fall into a really deep kind of 'sleep'. They said a seizure is like your body just ran a marathon and it needs to recover. The person may not be responsive at all during this period - and there may be some confusion or lack of coordination immediately after they start to come around. They said for a first seizure - you should call the ambulance. If Robbie has a second unprovoked seizure we should again call the ambulance and bring him to the ER. Other than that - the only time a seizure is a medical emergency is if the person injures themselves or if it goes on for longer than 5 minutes. I never want it to happen - EVER again. But I think we are prepared if it does.

The only thing to 'worry' about is that there is some abnormality that the CAT scan didn't pick up. The MRI will hopefully show that there is nothing to worry about in that direction.

I really appreciate the good thoughts!

Message edited 8/15/2010 1:25:18 PM.

Re: The Scariest Moments of My Life To Date.

I have been there...scariest thing. Kerri had 3 unprovoked seizures in a row the day before her first birthday. We were in Schneiders for two days doing EEG's and tests. They couldn't give us any reason but she was on medication for two years. She has not had a seizure since that day. He may not have another one, hang in there

Message edited 8/15/2010 1:35:38 PM.

Re: The Scariest Moments of My Life To Date.

Posted by Moehick

I have been there...scariest thing. Kerri had 3 unprovoked seizures in a row the day before her first birthday. We were in Schneiders for two days doing EEG's and tests. They couldn't give us any reason but she was on medication for two years. She has not had a seizure since that day. He may not have another one, hang in there

Re: The Scariest Moments of My Life To Date.

Absolutely! Ask away. It was such a scary time. Kerri was on the med from her first birthday (which she spent in the hospital) till she was 2 1/2. We actually weaned her off the meds after a year and a half instead of the two years (with our doctors permission). She is 4 and besides that one day has not had another one. I make sure to always keep her well hydrated so she is not at risk for another.

Re: The Scariest Moments of My Life To Date.

Omg, I'm so sorry. That's so scary.

I've heard good things about Dr. "D" from Good Sam. Pediatric neurology. I use Dr. Winnick in Bay Shore. (I have vertigo) He is very nice but I'm not sure if he cares for children.

I hope this never happens again.

Re: The Scariest Moments of My Life To Date.

What a scare! Hugs to your family hope you never have to experience this again.
Dr. Grossman in New hyde Park is excellent - but his bedside manner is nothing to write home about.

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Re: The Scariest Moments of My Life To Date.

Oh my goodness! I'm sorry you had to go through that. I know exactly what that's like...my DD suffered an unexplained seizure shortly before age 2. She was hospitalized for 2 nights and underwent every battery of tests you can imagine (including a spinal tap ) --no cause was ever found. She was never put on medication, but like you, we were advised she would be more likely to seize again...she is 3 now and never has again.

Thanks for the tips and reminders...wow, it's so hard to think about keeping your cool in a situation like that--I am glad you all were able to.

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Re: The Scariest Moments of My Life To Date.

I cannot even imagine how scary. So many hugs and prayers that this never happens again!!!!

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Re: The Scariest Moments of My Life To Date.

Jeannie, that is so scary... I really hope he is okay

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Omg! the exact same thing happened to my cousin's neighbor's son on Wednesday. He was also rushed to Schneider's.

He is fine now. I hope your soon is feeling better!!:hug

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Wow, Jeannie, how scary!

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How scary! I have chills from reading this. Poor little guy.

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OMG! So scary!!!!!!! I was teary just reading that, I cannot imagine how terrifying that had to be.

I hope you get some answers and that this never happens again!

Re: The Scariest Moments of My Life To Date.

OMG!

Re: The Scariest Moments of My Life To Date.

That is so scary!!!