Seizures

[hippiemamato3]

My DS16 has been having seizures - some absence and some with jerking/tremors/falling down. We are seeing a neurologist tomorrow and I'm nervous about it. I don't know how they will know if it's epilepsy or not - I doubt they will do an EEG tomorrow. What will they base it on?

[Ottakee]

I am sure they will do an EEG soon, possibly an MRI of the brain, and blood work. 

Most likely medication will be prescribed as well.  

 

[NorthwestMom]

Hugs to you. 

[katilac]

Usually if the person has had more than two unprovoked seizures (not provoked by high fever, a head injury, etc) then it will be considered epilepsy, so be prepared for them to use that word. 

They will take a medical history. They will probably test reflexes, the various senses, and memory. Some doctors do this with vocabulary recall or math facts, so don't be surprised if they ask weird questions. They actually do a few weird things, lol, like have you smell things, bare your teeth, and so on. They may observe him walking and picking things up. They will take blood or schedule it to be done. 

Additional testing will usually be scheduled during or after this visit, the EEG and so on. If they have reason to think the seizures are being provoked by infection, they may schedule a lumbar puncture. 

You might want to bring a pen and notebook to jot down information. 

Best of luck to your son, I hope they find answers quickly! 

 

[Melissa in Australia]

Hugs

 It is frightening seeing your child have a seizure

 Hugs

 

[SquirrellyMama]

At my dd's first neurologist appointment they did an EEG. We also left with meds that day. Hoping they get things figured out quickly for your ds.

Kelly

[sheryl]

Epilepsy is defined by the manifestation of "more than 1" seizure.  IOW, many people have 1 seizure for whatever reason.  People who have  2 or more seizures are classified as having epilepsy.

[J-rap]

My dh had a wake and sleep EEG.  I think they had him not sleep the night before and come in very early the next morning, or something like that.  I'm sure your doctor will want to do an MRI too.

Also, just so you know, not all diagnosis of epilepsy are permanent.  My dad was diagnosed with epilepsy in his teens, but had his last seizure in his 20's and has never had one since.  My sister has epilepsy (diagnosed around 10 or 11 I think?), but ever since the doctor figured out the right meds for her, she has never had a seizure.

[catz]

9 minutes ago, J-rap said:

My dh had a wake and sleep EEG.  I think they had him not sleep the night before and come in very early the next morning, or something like that.  I'm sure your doctor will want to do an MRI too.

Also, just so you know, not all diagnosis of epilepsy are permanent.  My dad was diagnosed with epilepsy in his teens, but had his last seizure in his 20's and has never had one since.  My sister has epilepsy (diagnosed around 10 or 11 I think?), but ever since the doctor figured out the right meds for her, she has never had a seizure.

This is true.  A friend's son had a series of  grand mal seizures.  They put him on anti-seizure medication.  5 years later he was able to wean off and has been fine since.  He's heading to college this fall.  

[sheryl]

Please know that YES a person can successfully outgrow seizures OR successfully be weaned from meds and STAY sz free but it is not a guarantee.  Speaking from experience, dd's onset began at 7 y 10 mo.   I didn't notice anything again until day before her 8th birthday (span of 2 months).  

She's been on meds ever since. We've been able to drop 1 med.  We've tried (unsuccessfully) weaning her 2 times and each time she reverted back to grand mal.  J-rap's dad's experience is very encouraging.  I've heard that many people do outgrow in their 20's.  But, not everyone.  Still, it's encouraging.  We'll try  weaning again in 5 years or so. DD will finish comm college, transfer, earn her bachelor's degree.  Some point after that when she's settled down a bit from jumping through hoops, we'll try weaning her again.  

[katilac]

57 minutes ago, sheryl said:

Epilepsy is defined by the manifestation of "more than 1" seizure.  IOW, many people have 1 seizure for whatever reason.  People who have  2 or more seizures are classified as having epilepsy.

Just to clarify, it's two or more unprovoked seizures. If you have a head injury or a high fever, either of those might cause more than two seizures but that would not be epilepsy. 

[sheryl]

Yes, that goes w/o saying if you're familiar with epilepsy.  My friend's son had a seizure in the dental chair.  One time.  No epilepsy.  Yes, unprovoked.  My point is when the "root" cause is epilepsy it is defined as 2 or more seizures.   I guess that wasn't clear in my first reply.   😉  And, do use caution b/c you have NO idea if that blunt force trauma to the head will cause future seizures.  See, some of it is a guessing game.   It MAY or MAY NOT trigger a future attack.

[SquirrellyMama]

1 hour ago, J-rap said:

Also, just so you know, not all diagnosis of epilepsy are permanent.  My dad was diagnosed with epilepsy in his teens, but had his last seizure in his 20's and has never had one since.  My sister has epilepsy (diagnosed around 10 or 11 I think?), but ever since the doctor figured out the right meds for her, she has never had a seizure.

Very true! My oldest dd was diagnosed at age 6, was put on medication for 4 years. The meds controlled her seizures, and she was able to stop medication at age 10. She hasn't had any seizures since. 

Kelly

[hippiemamato3]

We have a 24 hour EEG scheduled for 8/13 (and are on a cancellation list) so I guess they weren't too worried!

[katilac]

Keep us posted!

[Free Indeed]

Going through this with my daughter now. She was diagnosed last month, she is 18. Never had them in childhood. Then today was scary... 

last night (well 1:30 this morning) she had just came in from work and texted and said she felt like she was about to have a seizure but it felt different. Sure enough I go in her room and she was having one. I stay with her for an hour while she had a couple- but then she relaxed and went to sleep and I went to bed. Nothing unusual except the length of time. This morning she didn’t wake up. I left her alone and went back later and she still wasn’t awake. So I decided to wake her up. She wasn’t responding- Her sister (who is in nursing school) did a few “painful tests” and she doesn’t respond, but convulsed a little more- hers are not big convulsions- more of twitches. So we took to the emergency room. I called her boyfriend and he confirmed no drugs or alcohol last night which I figured when she was home early and drove- she’s not known for this, but I had to make sure.. After a bit at the hospital she did wake up and is now back to her normal self. She will follow up with her neurologist, but we have no answers. Its scary. 

[sheryl]

Free Indeed, I'm sorry you're faced with this.  It is scary.  DD was diagnosed when she was approx. 8 and she turned 20 this May.   Your dd was just diagnosed.  It may take time to find the right med/s and dose.  Our dd was on a med and still seizing.   I decided it was time for another neurologist b/c her 1st neuro was not proactive enough.  Sure enough we went to her 2nd neuro and within 30 days of adding a 2nd med dd became sz free.    To this day she is sz free ON meds.  When we've tried weaning her in 2012 and 2015 she had grand mal each time so she had to go back on med.  We'll wean her again in a few years after she graduates college.  Don't be discouraged if this takes time.  Keep a journal.  Look for triggers.  Oh, after dd's last wean attempt we (dh and I) opted to remove 1 of her meds.  And, with the 1 remaining, we've reduced the dose.  That was 3 years ago or so and she's done fine!  Hang in there.  It will get better. 

[sheryl]

Instead of fear though, become educated and know those situations happen.  Then be your child's advocate. Hang in there to Free Indeed and hippiemamma.   Those situations are NOT the norm.  They "do" happen but it is NOT commonplace. 

[katilac]

39 minutes ago, sheryl said:

Instead of fear though, become educated and know those situations happen.  Then be your child's advocate. Hang in there to Free Indeed and hippiemamma.   Those situations are NOT the norm.  They "do" happen but it is NOT commonplace. 

Agreed. I don't see anyone taking it lightly, I see families who are on top of things and doing everything they can. They are seeing doctors, they are following up, they have medical attention and are seeking answers. That's all they can do. 

Sometimes you do all the right things and still have a tragic outcome, but Sheryl is right, that is not the norm. FI and hmto3, just keep trucking and don't think about every last thing that could happen. You could get hit by a bus on the way to the doctor, but it itsn't likely and it doesn't help to think about it. Your doctors will work with you to find effective treatment. 

Edited July 17, 2019 by katilac

[hippiemamato3]

I'm not overly concerned at this point. Since the doctor didn't want an immediate EEG (or couldn't schedule one) I figure she thinks he's ok. 

[hippiemamato3]

On 7/16/2019 at 2:31 PM, hippiemamato3 said:

We have a 24 hour EEG scheduled for 8/13 (and are on a cancellation list) so I guess they weren't too worried!

They rescheduled that EEG to 9/5 and the seizures are getting worse. Super stressful. 

[BeachGal]

My youngest brother developed seizures around his early teen years that were caused by flickering light from his computer screen (this was back in the 1980s.) I think this might be photosensitive epilepsy. He went on a med but was able to wean off after a few years and has been fine ever since. I’ll ask him for more info. I was in college at the time but family members who were with him all learned how to recognize signs before the grand mal seizure would begin and then how to protect him during the seizure. Very scary.

Is there any way you could get your daughter in sooner? Maybe if there’s a cancellation? ETA: I see she is on a cancellation list. Ugh. I hope you can get in sooner.

Edited August 25, 2019 by BeachGal

[sheryl]

1 hour ago, hippiemamato3 said:

They rescheduled that EEG to 9/5 and the seizures are getting worse. Super stressful. 

Listen, do they know the sz are getting worse and you're terrified?  Have you used that terminology with someone there?  Call back and ask for the office manager and explain the situation again.  Have this person ask one of the neuros what they suggest as this could be quite serious.  Lastly, go to another practice.  Be put on a cancellation list. Do whatever it takes (almost) but ask them at what point is it too dangerous if it keeps intensifying.  Hope that makes sense. 

[sheryl]

17 minutes ago, Arctic Mama said:

Worst case scenario go to the hospital, a local children’s hospital would be even better.  With active seizure symptoms they should be able to get her on an EEG within a few hours in my experience.

Right, I was thinking that too.  Not sure if it would be more expensive there than at a drs office. 

[Ali in OR]

OP, I'm sorry you're going through this. We've had a rough couple of seizure weeks here too. My 22 yo has had seizures all her life. Neuro wanted to try weaning her off 1 of 3 anti-seizure meds and it went well for awhile. Until it didn't. Didn't get completely off that one, had to increase another, seizures better but not back to her recent level of control. All that to say I understand the stress! Hope you get answers soon. In the meantime, have him practice excellent sleep habits. We have our worst problems when her sleep gets messed up. Speaking of which, I better go give her her evening meds and get her to bed.

[prairiewindmomma]

1 hour ago, Arctic Mama said:

Worst case scenario go to the hospital, a local children’s hospital would be even better.  With active seizure symptoms they should be able to get her on an EEG within a few hours in my experience.

This is also our experience. The delay is unacceptable, IMO.

[Ottakee]

7 hours ago, prairiewindmomma said:

This is also our experience. The delay is unacceptable, IMO.

I agree.  We got EEGs within hours when things changed for my dd.

Do you have a children's hospital within a few hours drive?

Another suggestion is to post on a local FB page asking for ideas on where to go, who to see, etc.

When my dd had a seizure we had blood work, a CT or MRI (can't remember which it was that time) and an EEG all within the first 12 hours....likely a lot less.

[unsinkable]

11 hours ago, hippiemamato3 said:

They rescheduled that EEG to 9/5 and the seizures are getting worse. Super stressful. 

I'd familiarize yourself with when to call 911 (are you in the US?) for seizures but briefly...if a tonic clinic seizure lasts more than 5 minutes or the person is experiencing a series of seizures without recovering/appearing to recover/come back to her baseline. 

 You said your DS was having seizures and had a Neuro appt. Is this the first time he was seen for the seizures? Was he seen at an ER or by a ped/GP before the neuro?

And what else did the neuro do besides schedule the 24-hr EEG?

Was there ever baseline hour long EEG? What was the reason behind a 24-hr.EEG? Usually, those are ordered AFTER a shorter EEG is done but nothing is observable on the EEG but the seizure activity continues.I

Edited to.add: 

Oh, and you should keep a log of seizures activity. Time of day, duration, possible triggers. Also write a detailed description of what happened immediately before and during the seizure. SOmetimes what the person is doing before can trigger the seizure or actually be part of the seizure. And describe the seizure, don't "name" the seizure. "Grand mal" ( just to pick a name that sometimes is used)  is not really used any more and it also doesn't tell the neuro what is actually happening during the seizure.

Then note recovery time and behavior (ex: bad headache, slept 3 hours, difficulty communicating)

Edited August 25, 2019 by unsinkable
Added info

[unsinkable]

Oh, and you should keep a log of seizures activity. Time of day, duration, possible triggers. Also write a detailed description of what happened immediately before and during the seizure. SOmetimes what the person is doing before can trigger the seizure or actually be part of the seizure. And describe the seizure, don't "name" the seizure. "Grand mal" ( just to pick a name that sometimes is used)  is not really used any more and it also doesn't tell the neuro what is actually happening during the seizure.

Then note recovery time and behavior (ex: bad headache, slept 3 hours, difficulty communicating)

Edited August 25, 2019 by unsinkable
Can't spell

[prairiewindmomma]

Fwiw, if your child hasn’t had a clean MRI this year, and the expense wouldn’t break you, I would 100% be in the ER of a pediatric hospital today with overnight bags packed.

[unsinkable]

How is DS doing? 

 

[hippiemamato3]

On 8/25/2019 at 8:53 AM, unsinkable said:

 

 You said your DS was having seizures and had a Neuro appt. Is this the first time he was seen for the seizures? Was he seen at an ER or by a ped/GP before the neuro?

And what else did the neuro do besides schedule the 24-hr EEG?

Was there ever baseline hour long EEG? What was the reason behind a 24-hr.EEG? Usually, those are ordered AFTER a shorter EEG is done but nothing is observable on the EEG but the seizure activity continues.

He was seen by ped. This was our first neuro appt. She told him not to drive and scheduled the 24 hour EEG. There was no hour long EEG at any point.

[itsheresomewhere]

8 minutes ago, hippiemamato3 said:

He was seen by ped. This was our first neuro appt. She told him not to drive and scheduled the 24 hour EEG. There was no hour long EEG at any point.

Not surprised that they didn’t do a one hour EEG.  Our neurologist won’t even schedule one anymore as her experience is showing that the insurance company won’t pay for the 24 hour one since they paid for the one hour one.  I am also hearing that from quite a few friends who have to have EEGs.   

Keep a log of activity.  What he was doing, feeling, etc.

Edited August 27, 2019 by itsheresomewhere

[hippiemamato3]

Just figured I'd update. DS17 had a giant, terrifying status epilepticus tonic clonic seizure on 11/22 and has been diagnosed with JME with tonic clonic seizures. We've already had one medication with bad side effects and are doing better with a different one. 

[Chris in VA]

That must have been scary. Thx for updating us. Hope they sort out the meds quickly. 

[scholastica]

I'm so sorry. I'm glad you found a med that seems to be helping.

 

[prairiewindmomma]

2 hours ago, hippiemamato3 said:

Just figured I'd update. DS17 had a giant, terrifying status epilepticus tonic clonic seizure on 11/22 and has been diagnosed with JME with tonic clonic seizures. We've already had one medication with bad side effects and are doing better with a different one. 

Hoping he can have good control and some healing. Seizures can be super scary to watch. Hugs for all of you!