My 2 year old son had a seizure

[Big B Hova]

Well my son Jason is acting 100% normal like nothing happened (which is great)

Apparently he just had a OTA forced software update that was out of my control.

We stopped by the ostriche farm on the way home to let the kids have some fun.

Back home now. Thanks again everyone for the kind words and stories / input.

 

[was thatguy]

Dude.... my wife watches Chicago Med and they just did a show with a girl that had your daughter's condition.

My oldest was actually just diagnosed with a related terminal condition as well called homocystinuria. It's very Dimitar in its rarity and how it works. The body can't process certain amino acids that are present in most proteins. Right now her levels are pretty low and consistent low so she can manage with just some B6 supplements daily, but it is suppose to worsen over time and she will likely have to remove protein from her diet completely and just take the supplements like your daughter did.

Apparently My wife and I are carriers. We are working with our genetic doctor to test the other 3 as there are some symptoms in all 3 of them as well.

Wow
No one’s ever even heard of it over the 36 years since ash got diagnosed! As the show probably said, about 85% of those with msud are severely handicapped and don’t make it past teen years. Ashley is in the 15% with the “mild” version.
In her condition the proteins build up and eventually the white blood cells start killing everything. They see it as an unknown infection so on the warpath they go.
Dr Browner from Anchorage with Dr Scott from UCLA flew her all over the country with my then wife doing tests and trying to figure it out. Dr Browner is a living saint. He made it his career mission. He was the most dedicated dr I’ve ever known. We spent many many nights in the icu over that first 2 years. I’d relieve my wife after work and then she’d be back by midnight or so to stay in the room with ash. Dr Browner would be there until 1-2 AM every single night. Down to his T shirt and making his rounds.
He’d be back at 6 AM to make all his rounds again before heading to his private practice. Those nurses snapped up straight as soon as he would show up.
Anyway, none of that could have happened without Ash being on the Alaska Handicapped children’s fund as I had zero insurance. Dr Browner actually held back billing from his service and told me to my face that we would NEVER lose his services over money.
To this day I still give to the Ronald McDonald house charities for all the things they did back then and and more recently for Ashley’s son Kyle when he had his brain surgeries years back.

After 2 years they diagnosed her and then things got easier.
We could monitor her diet and that made all the difference.
As a 1-2 year old she simply would not eat. We never knew why, but it was because food made her hurt and her body knew it.
But we had to carry her files everywhere if we left town because NO ONE at any hospital ever believed us or heard of it.

Ashley would get McDonalds, but just eat the bun.
Or pizza, but have to scrape everything off.
No eggs, no meat, no anything that growing kids need.

 

[was thatguy]

Me too brother. I cant deal these days. I only cried twice as an adult before my daughter was born. Now its monthly it seems! She has changed me so much.

I have almost no empathy or even concern over adult people.
When some people get upset over somebody getting hurt or killed I almost feel nothing. I think it’s because of all the dying around me?
But kids…that’s a whole different story. Anything a kid says or does, or getting hurt or sick, will just destroy me.
I choked up when that kid stopped the bus the other day.
Now it’s all about my grandkids as my kids are now all adults!

 

[was thatguy]

Well my son Jason is acting 100% normal like nothing happened (which is great)

Apparently he just had a OTA forced software update that was out of my control.

We stopped by the ostriche farm on the way home to let the kids have some fun.

Back home now. Thanks again everyone for the kind words and stories / input.

View attachment 1224792

View attachment 1224793

View attachment 1224794

Great news!
“Jason version 2.0”

 

[Big B Hova]

Hardest thing I'm dealing with right now is I feel I need to be next to him 100% of the day now.

Sleeping. I guess it's just PTSD.

 

[RiverDave]

Man that is scary shit.. I hope they figure it out and he’s good going into the future! Was there any flashing lights or a tv around?

 

[Big B Hova]

Man that is scary shit.. I hope they figure it out and he’s good going into the future! Was there any flashing lights or a tv around?

No the kids were on the patio of the house we were renting just playing with die cast airplanes

 

[bilz]

Just read this, wow, I understand the feeling. Blue lips, nails with both my boys. Asthma was the cause. Wife and I took turns sleeping many a night to stand watch. Thoughts and prayers for your son and your family. We've been with Kaiser through many ups and downs. I believe you are in good hands.

 

[FCT]

I’m very sorry to hear. My 3 year old has petit Mail seizures. Has been to specialist and all we can get them to say is he will hopefully grow out of it and here is medication to prevent them because we can’t find anything wrong. He takes Kepra daily now and I hate it. The medication gives him crazy mood swings and makes him mean sometimes and that was never him. He is the kindest and sweetest little boy one could ever ask for. It is the safest medication at his age but hopefully soon we can change his medication to try something else. He has not had seizures since he has been on medication so that is a plus. Best of luck to you guys. It’s scary watching your baby like that

 

[LAVEYNICK]

Prayers to you guys. My little one has seizures for about two years then finally grew out of them. Glad hes doing better!

 

[jetboatperformance]

Our Grandon had one at 5 while in the Spa fortunately Rhonda dragged him out and by the time the paramedics arrived he was fine , Scary stuff Glad your little guy is OK

 

[Big B Hova]

Prayers to you guys. My little one has seizures for about two years then finally grew out of them. Glad hes doing better!

Febrile? Unprovoked?

 

[MOUZER]

my son had one at 1 yr old and again at 2 yrs old never had another all test where normal

 

[Nacibound]

My son had 3 before the age of 3, first one was a $800 amulance ride 2 miles to the hospital. It was caused by severe fever spikes that caused the seizures (Rapid increase in temperature). Our doctor told us he would grow out of it; he is now 28 and never had another... Hope all is well with your boy.

 

[Big B Hova]

My son had 3 before the age of 3, first one was a $800 amulance ride 2 miles to the hospital. It was caused by severe fever spikes that caused the seizures (Rapid increase in temperature). Our doctor told us he would grow out of it; he is now 28 and never had another... Hope all is well with your boy.

Those are Febrile seizures and are more common in young kids. At least you had a known cause of the seizure. That's the hard part to swallow about my son's case is he went from 100% normal to dieing in my arms in like 1 minute.

 

[WildHorses24]

Hardest thing I'm dealing with right now is I feel I need to be next to him 100% of the day now.

Sleeping. I guess it's just PTSD.

Follow your gut on the sleeping next to him....
Probably the scariest "Oh fuck" moment I've ever had was watching my helpless little guy have a seizure for the first time. I strongly suggest doing a resting EEG or the 24hr EEG, you need to know if he gets them in his sleep. We were told my son's seizures were so intense and so frequent while sleeping he was in danger of SUDEP (Sudden Unexplained Death by Epilepsy), either myself or my wife slept with one hand on his chest for a couple months! He was diagnosed with Absence Seizures and Epilepsy. There's many different types of seizures and causes, my boys looked like he was staring into space so they went unnoticed for a long time until they starting getting bad.
My son was 7 when we first saw them, he's 11 now. We've been on a roller coaster over the past couple years with this. He's still on meds and haven't seen one in almost 1.5 years. He would have 50ish a day (that we saw) when he was at his worst and now down to zero. I would suggest a neurologist should be brought in to determine if this was one off, life long or something he will grow out of by puberty. My son was diagnosed with life long Epilepsy but hopefully will grow out of the seizures. We're hoping we can get him off meds in another couple years of clear EEGs.
Things that trigger his seizures: Tired, Stress, hungry, flashing light and dehydration... to this day we always take snacks, water etc everywhere we go and force down his throat. He's cycled through 4 different seizure meds and finally landed on something that works a year ago. Hopefully you don't have to go through that, side affects of meds are almost worse than dealing with seizures!

I truly feel for you and know first hand how scary this was/is for you and your wife. I feel like I can't stress enough to follow up on this with a neurologist or even an epileptologist if you can. We were comfortable waiting the 4 months CHOC was going to take getting in.... long story short met the President of Epilepsy Foundation by dumb luck a week later at the bar in HB for the airshow. Told them our story, we had an appointment 3 days later for a resting EEG and that's when we were told about the VERY HIGH probability of SUDEP!!! He was on meds within 7 days of us seeing the first seizure, had we waited on CHOC....who knows the outcome.

I wish your little man the best and hope this does turn out to be a one off seizure and nothing more.

 

[steamin rice]

Scary stuff. I hope they get it figured out for you.

 

[Big B Hova]

Phone appt today with his normal pediatrician. I have a long list of questions ready.

 

[LAVEYNICK]

Febrile? Unprovoked?

I believe Grand Mal (Tonic clonic) .. she was on kepra for a long time which was dam near as bad as the seizures. Alot of kids it happens once and never happens again.

 

[Duramax]

I’m very sorry to hear. My 3 year old has petit Mail seizures. Has been to specialist and all we can get them to say is he will hopefully grow out of it and here is medication to prevent them because we can’t find anything wrong. He takes Kepra daily now and I hate it. The medication gives him crazy mood swings and makes him mean sometimes and that was never him. He is the kindest and sweetest little boy one could ever ask for. It is the safest medication at his age but hopefully soon we can change his medication to try something else. He has not had seizures since he has been on medication so that is a plus. Best of luck to you guys. It’s scary watching your baby like that

So sorry to hear. With three children under 6 this is a scary thread. Good luck to all of you...=(

 

[Big B Hova]

Lil good news update. We had a phone appt with my son's Pediatrician at Kaiser. He was very concerned about an unprovoked seizure and ordered a CT scan immediately. He also paged the neurologist at woodland hills Kaiser. Now he had a 24hr eeg ordered and an Mri with and without contrast.

We were rushed into the CT scan as soon as my wife got there an nothing found on the scan (good thing, ruling out tumors)

No we're setting up the mri and eeg. Might take a lil bit to get scheduled because it's going to be at Kaiser Sunset with more pediatric options.

Fingers

 

[Big B Hova]

I believe Grand Mal (Tonic clonic) .. she was on kepra for a long time which was dam near as bad as the seizures. Alot of kids it happens once and never happens again.

I hope this is my son's case.

 

[Big B Hova]

Mri scheduled for end of June (soonest kaiser can get a pediatric mri set up)

Pediatric Neurologist appt end of May.

Follow up appt with his main doctor.

Everything we have checked so far had been normal.

 

[RVRKID]

Sorry you guys are going thru this and good news on the CT Scan, so hoping it was just a 1 time deal.

 

[pronstar]

MRI with contrast is no joke.
I had one a few weeks ago and nearly lost my lunch when they started with the contrast injection…made me feel sick as a fucking dog for like 3 mins. I almost had to get out of there but I was able to hold it together.

 

[Singleton]

MRI with contrast is no joke.
I had one a few weeks ago and nearly lost my lunch when they started with the contrast injection…made me feel sick as a fucking dog for like 3 mins. I almost had to get out of there but I was able to hold it together.

11yo daughter just had one on her heart. We opted for sedation to make is easier.
MRI cleared the heart murmur concern, but found something else (left ventricular upper chamber non-compaction cardiomyopathy). So she now has to get annual MRI’s to track heart muscle.

Scary shit when you kids are ill.
Luckily she has zero restrictions / limitations - she could live forever without any complications or if the MRI’s start showing additional heart muscle weakness, treatments will start. Dr said, my medical insurance is the best he has seen in years. Kind of made the decision for me, no more job shopping.

 

[Big B Hova]

So lil update. Jason is finishing up his 24 hour EEG today. Mri is still scheduled for end of June. If both of these show nothing we hope it was just a 1 off seizure that some kids get while growing.

Cat scan normal. Blood work Normal. Peadatric neurologist didn't seem concerned because he's acting 100% normal and no family history of epilepsy. Fingers crossed

On the other hand, Jason fractured his Tibia about 3 weeks ago, and it took Kaiser 2 weeks to diagnose it, so he hasn't walked in almost 3 weeks.

He's a cute hot mess.

 

[MK1MOD0]

Great news on everything coming back normal so far. Sorry your little guy broke his leg. Boys will be boys. !

 

[OLDRAAT]

Good news indeed! Keep us posted.

 

[HNL2LHC]

Good to hear that things are checking off as normal. It is best that they put him through all tests to double check everything.

 

[Big B Hova]

Good to hear that things are checking off as normal. It is best that they put him through all tests to double check everything.

I agree

 

[Havasu blue label]

Great news

 

[Tank]

good news Brian. Scary as shit!

 

[Big B Hova]

Today lil Jason is having his MRI with and without contrast at Kaiser. This is the last test we have set up. CT scan was normal. 24 hour EEG done (awaiting results) and now MRI. Hopefully all checks off as normal and his seizure was just a random event and part of the brain growing or Febrile seizure.

 

[monkeyswrench]

I hope all is well. I also hope the noise from the MRI doesn't bother him too much.
He has an advantage over most of us though....most of us feel like a torpedo getting loaded

 

[Big B Hova]

I hope all is well. I also hope the noise from the MRI doesn't bother him too much.
He has an advantage over most of us though....most of us feel like a torpedo getting loaded

He's sedated. 2 years can't sit still for a TV show let alone a mri LOL

 

[Xtrmwakeboarder]

Today lil Jason is having his MRI with and without contrast at Kaiser. This is the last test we have set up. CT scan was normal. 24 hour EEG done (awaiting results) and now MRI. Hopefully all checks off as normal and his seizure was just a random event and part of the brain growing or Febrile seizure.

View attachment 1246839

Good luck lil man!

 

[ChumpChange]

He's sedated. 2 years can't sit still for a TV show let alone a mri LOL

Was just gonna ask the same question. I’ve had a couple of them the last couple years for my shoulders and it takes a bit to sit still.

 

[pronstar]

Was just gonna ask the same question. I’ve had a couple of them the last couple years for my shoulders and it takes a bit to sit still.

…especially when they inject the contrast.
I thought i was gonna hurl.

 

[Big B Hova]

Were back home now and he's acting completely Normal!

 

[Big B Hova]

So my son's 24 hour EEG came back abnormal. During 3rd stage sleep his brain is showing generalized spike and wave patterns that show increased risk of generalized onset seizures.

The pediatric neurologist at Kaiser recommended starting him on Generic Keppra to reduce risk of seizures.

We started him today. She said we can check again in 2 years +/- and repeat the EEG and see if he outgrows it.

 

[FreeBird236]

So my son's 24 hour EEG came back abnormal. During 3rd stage sleep his brain is showing generalized spike and wave patterns that show increased risk of generalized onset seizures.

The pediatric neurologist at Kaiser recommended starting him on Generic Keppra to reduce risk of seizures.

We started him today. She said we can check again in 2 years +/- and repeat the EEG and see if he outgrows it.

Sure was hoping it was nothing, as I'm sure you were too. It would seem like a good thing he's had no more seizures even without medicine, so hopefully it's mild and he outgrows it.