Son had a seizure this morning...worried. Update #26

[Cakes]

DS is 19, he has had panic attacks but more around age 17-18 than the last year.

 

This morning he told his girlfriend that he was about to have a panic attack, then he sat on his bed and had a full blown seizure. He was disoriented for more than an hour.

 

We took him to the ER and they found nothing, blood work was good, CT scan showed nothing.

 

We are being referred to a neurologist for further testing. 

 

Dr said it could easily be a one time event, but we think this is actually his third. The first two did not result in shaking/convulsing, he thought they were panic attacks but in both events he was very disoriented...so I am thinking they were small seizures.

 

I am looking for some information from anyone who has any experience with this sort of thing. I am very nervous about what is potentially coming down the pike for him. Driving privileges are lost, he commutes 30 mins each way to college. Thankfully he is on break and potentially can get clearance from the neurologist if all of the tests come back ok, but just as likely may need to go on anti-siezure meds :-(

 

 

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[unsinkable]

:grouphug:

 

I'm really sorry your son and you are dealing with this.

 

My DD gets a very strong fear aura before she has a seizure. She makes a loud startled gasp and she gets a scared panicked look on her face, then it starts. I wonder if your son feeling like he is going to have a panic attack is an aura?

 

The disorientation afterward is a very common postictal (after seizure) symptom.

 

For now, I recommend he log everything he can about what happened before the episodes while it is fresh in his mind. Was he stressed? Tired? Hungry? What had he eaten? And have who ever witnessed the seizure write down what they remember.

 

Hopefully he can get into the Neuro soon.

[Ottakee]

I agree with writing down everything that happened the 24 hours before as well as during/after.  Eating, drinking, alcohol, smoking, sleeping, etc.

 

Did they do an EEG while he was in the hospital?  If not, I would call Monday to the primary and see about getting one ordered ASAP as the neurologist will almost certainly want this.....or call the neuro and ask for the order.  Might save a step in the process.

[Cakes]

Thanks for the replies.

 

The Dr said that many people feel a precursor to there seizures and that may very well be his panic attack...which may not really be a panic attack. sigh.

 

They did not order an EEG but told us the Neuro will want it asap, I plan to call on Monday. 

 

My gut tells me that there are more seizures in his future and I am wondering how this will change his life. Driving, college, career. I feel a bit overwhelmed. 

 

I will ask DS and his girlfriend to write down everything. It happened at 11 today, it is one of the scariest sights I have ever seen. He hadn't eaten yet. Just hung out at home last night, nothing unusual. But I can see how one could begin to piece together patterns with a journal. He has said before that he believes his panic attacks are related to sugar consumption, but I am not sure because he always eats junk food anyways.

[momacacia]

You may want to look into the GAPS or ketogenic diet protocols, in the case he might be able to avoid drug treatment, if you would be interested in that.

[LostSurprise]

I want to reassure you a bit. 

 

Most people can control their seizures through medications. There may be a rough year or so while finding the right one(s), but most people can stabilize their seizures, show they had no seizures in a 6 month period, and try for a license again. 

 

For more severe epilepsy, driving a car is not everything. It's easy to get around if your world is geared that way. Severe epilepsy may preclude some dangerous physical occupations, but most white collar careers are still open. Millions of people deal with epilepsy and manage to have busy, fruitful lives with careers and families. Some people on this board have epilepsy. 

 

I hope things work out for you. It's best if an EEG is done soon, possibly even a 3 day EEG. It's good to have confirmation so things can move forward. 

[merry gardens]

(((hugs)))

[Whereneverever]

With the history of panic attacks I'd want to see a neuro experienced with psychogenic seizures. Did anyone happen to notice if his eyes were open or closed?

 

I hope that you can get this figured out asap- there are some great medication options that work for a lot of people. 

 

Hugs, mama. 

[Guest]

No experience, but prayers.

[Cakes]

Thank you all for your kind responses. 

Whereneverever...his eyes were open during the seizure and closed as the seizure subsided. Thank you for the suggestion I will be sure to ask about psychogenic seizures, I was just reading about them.

I wonder if panic attacks can be a precursor or warning sign that the brain is having an electrical malfunction.

[sheryl]

Well, hugs to you.  My dd, 15, has seizures.  While it can be traumatic (especially in the beginning), it's not the end of the world. 

 

Epilepsy is defined as one having 2 or more seizures.   As the dr said, it could be a one time event.  Many people have single episode seizure but are not classified as having epilepsy b/c it is a single event. 

 

By all means, take him to that neurologist.    More than likely they will recommend an eeg - ambulatory or sleep-deprived.   The ambulatory eeg requires the patient to wear the headgear (wires, electrodes) for a designated period of time, usually 24 OR 48 OR 72 hours at home, etc.  They return to the office to have all of this removed.  The sleep deprived patient and parent/s stay up later than usual, sleep for only a few hours and wake up and stay awake for most of the early morning hours and up to going in to the drs, office for the actual eeg test performed in the office.  I've seen several others reply over the years re: sleep deprived eegs and each dr. works it a little differently in terms of the hours.  For years, my dh and I take shifts and our dd's looks like this.   Awake to 11 pm.  Sleep 11 pm to 2 am.  Awake 2 am to appt. time of 8 or 9 am.  During the appt. time which is the eeg test, she will sleep and they will perform their eeg test. 

 

She had a grand mal March 2007 which evolved into absence seizures for 1 year.  She became seizure free ON MEDS early 2008.  We are thankful to God for this. 

 

Your son may or may not have epilepsy.  If he has 2, he will be legally classified as having epilepsy and there are certain parameters in which you will learn to work.  For instance, we had to request permission from the state that she be allowed to take driver's training class and apply for permit, etc.  We did that.  They granted us permission.  She finished her class, passed her permit and is driving very well with dh and/or myself. 

 

We tried weaning her, unsuccessfully, 2 years ago.  However, she was taking 2 meds.  Two different kinds.   One had 12 tablets in a day and the other 3.   After the weaning attempt 2 years ago, we never put her back on the one med (12 tablets a day)!!!!!   And, the one med she took 3 of a day, she's only taken 2 pills for the last 2 years!    So, she's only taking 1 or the 2 meds.   And, of that one med, she's already down by 33%!!!!! 

 

Over the years the dr. would alternate sleep-deprived and ambulatory.  Then he focused on ambulatory.   At my suggestion, we had her complete an ambulatory the first weekend in Dec.  That's right - a 72 hour.   It came back, as all of hers do, normal.  (except the one that showed she seized 2 years ago b/c she was off of meds). 

 

We are now going to wean her again this next summer.  I'm 50/50.  Not sure.  It's true I'd like her to be weaned, not seize and have a "clean" eeg.   But, I know God will give us the strength we need and she'll need if it doesn't work out in her favor. 

 

People respond to the same meds differently.  So, if med A works for one it may not work for your ds IF he needs to go on meds.  It may be trail and error in terms of med name and dose. 

 

You and your ds will be fine.  Get that eeg asap and keep an eye on him.  I was the only one to pick up our dd's absence seizures for 2 months!   I knew something was going on, but dh was clueless.  

 

Make sure he gets his sleep.  Vitamins.   Exercise.   My dd's neurologist said it's important to keep as "normal" or as "usual" a lifestyle as possible.   If a person is "recently" diagnosed they will suggest no: swimming, skydiving, bathing, horseback riding (high risk activities).  At least until the seizures are controlled.  And, some people have triggers.  If your ds has one, learn what it is and how to cope.

 

There's much more.  Try to relax and become educated through support groups, neurologist (TAKE/KEEP NOTES), etc.

 

 

 

 

[sheryl]

Also,

 

both eeg's gather the same information but in slightly different ways so they may suggest one this time and the other one the next time.

 

Also, more than one eeg may be necessary to "truly" get a representation as not all seizure activity may show up on an eeg.  But, over a period of time and the consistency of tests, if there are seizures they will eventually show up.

[Cakes]

Thank you sheryl. I am sure this is something one adjusts to, just as with anything else in life! Right now I am just a bit shocked and unsure of what the future will hold. 

 

I will call the neuro on Monday. Hopefully be able to get in with in a week to two. 

 

I am wondering about college and how we will cope with that. I guess we have a few weeks before spring semester starts up. 

 

What would college alternatives be? Are there any? I suppose if he needed to find some on line classes he could. LOL...homeschool college :-)

 

PS...it appears it was a grand mal.

 

[unsinkable]

Thank you sheryl. I am sure this is something one adjusts to, just as with anything else in life! Right now I am just a bit shocked and unsure of what the future will hold.

 

I will call the euro on Monday. Hopefully be able to get in with in a week to two.

 

I am wondering about college and how we will cope with that. I guess we have a few weeks before spring semester starts up.

 

What would college alternatives be? Are there any? I suppose if he needed to find some on line classes he could. LOL...homeschool college :-)

 

PS...it appears it was a grand mal.

I know there are a lot of what ifs? going through your mind. I'm the same way. :-)

 

For school, he could carpool or take mass transit or move onto/closer to campus. Obviously I don't know if any of those are feasible but I'd throw them out there.

 

I'd definitely tell the Health Center on campus what is going on and find out if they have resources to help. Also Student Services. Once you start reaching out, you might find resources and options you haven't thought of.

 

You can trying googling for Epilepsy Foundation offices in your area and see what services they offer.

 

:grouphug:

 

I know there is so much to think about and no decisions need to be made immediately.

[Whereneverever]

Panicky feelings can absolutely be a precurser- that's the aura someone mentioned above. My DD gets a feeling that something isn't right, usually with enough time to sit down so she doesn't fall.

 

You've got this, mama. You aren't alone. The Epilepsy Foundation has amazing resources.

[Ewe Mama]

:grouphug:

[sheryl]

the ketogenic diet may be an assist but in NO way should it be expected to be a FULL substitute. 

 

there are many things that are helpful, such as: high grade fish oil, exercise, etc.  but even these should not be practiced alone without the use of med/s if needed. 

 

let me add here that I did NOT want to put dd on meds b/c I thought i'd try the natural route b/c, well, natural is better, right!   well, sometimes the use of meds outweighs the other risks.  I did not want to jeopardize my dd so we ended up giving her meds.  additionally, we give her fish oil, d3 and the list goes on......

 

so, the ketogenic diet may help some, but not all and it may work in combination with other techniques but please do not consider it a stand alone/panacea.

 

really we are putting the cart before the horse, b/c he may not even have epilepsy.  I would read these replies and put it on the back burner until you hear the results from the neurologist.   you have enough background info. to give you a jump start in case you need it.  but if you don't need it you are putting yourself through a lot of unnecessary stress. 

[Cakes]

Thank you, and Sheryl you are right....the cart is in front of the horse. For me information is everything! I will read and research and take lots of deep breaths. All of what has been shared is immensely helpful even if it may be premature.

 

Life is all about change isn't it? Sometimes we just have to play the hand we are dealt to the best of our ability and I always believe that things happen for a reason. At some point the reason will be revealed. For now we hang tight and get to the neuro and learn how to move forward with a happy and healthy life.

 

 

[Whereneverever]

I don't think I saw anyone mention this- if this happens again before you see the neuro and it lasts over 5 mins, call an ambulance. 

[Jasperstone]

Oh, how scary for you and your son. ((((HUGS))))

[Cakes]

After reading about different types of seizures pondering all of this last night I am convinced that this is not his first seizure.

 

I think of a seizure as thing that causes convulsions, this is the first time that (we are aware) this has happened. But he has had a few panic attacks in the past that have led to some level of disorientation. I am thinking that any type of neural disruption may fall under the seizure category. Perhaps I am wrong but my gut tells me that this is not an isolated event....or that these smaller events have been leading up to 'this big one'.

 

We will not know anything more until we get in to see the neurologist, but I am mentally bracing myself for difficult news.

 

I will research the links provided above.

 

I am well versed in the GAPs protocol...this is my pickiest child. I am not sure that I can get him to try it. He is severely and unreasonably picky. It has been suggested by a therapist that DS may be affected by Aspergers. This came up last year when he saw a therapist to sort out some school pressures. We have not had a diagnosis, but I am reading the epilepsy and spectrum are related. I have been on the fence about seeking out a diagnosis because I feel that having a label will hurt him, cause him to sort of give up and give in to his limitations. I think it would devastate him. 

 

Anyway, I have a lot on my mind this morning. I appreciate all of the words of wisdom,  the support, the hugs and all of the links shared here!

[unsinkable]

After reading about different types of seizures pondering all of this last night I am convinced that this is not his first seizure.

 

I think of a seizure as thing that causes convulsions, this is the first time that (we are aware) this has happened. But he has had a few panic attacks in the past that have led to some level of disorientation. I am thinking that any type of neural disruption may fall under the seizure category. Perhaps I am wrong but my gut tells me that this is not an isolated event....or that these smaller events have been leading up to 'this big one'.

 

We will not know anything more until we get in to see the neurologist, but I am mentally bracing myself for difficult news.

 

I will research the links provided above.

 

I am well versed in the GAPs protocol...this is my pickiest child. I am not sure that I can get him to try it. He is severely and unreasonably picky. It has been suggested by a therapist that DS may be affected by Aspergers. This came up last year when he saw a therapist to sort out some school pressures. We have not had a diagnosis, but I am reading the epilepsy and spectrum are related. I have been on the fence about seeking out a diagnosis because I feel that having a label will hurt him, cause him to sort of give up and give in to his limitations. I think it would devastate him.

 

Anyway, I have a lot on my mind this morning. I appreciate all of the words of wisdom, the support, the hugs and all of the links shared here!

Definitely tell the Neuro your suspicions of other incidents. They are all parts of the puzzle, IMO.

 

Temporal lobe epilepsy has long been confused with other things but it shows up clearly on EEGs.

[Cakes]

Update:

 

Yesterday morning DS had two panic attacks. After all of the reading that we have done we recognize that they are not simple panic attacks but look more like partial complex seizures. I looked up temporal lobe seizure and found the description there...lip smacking and  speech disturbance/jumbled were what concerned me. He has had these events before but until the seizure on Sat. we thought they were just panic attacks :-(

 

Took him to urgent care, where they gave him and anti seizure med to keep him safe until we get in for the neuro appt. (2 weeks away!) at least we have the EEG scheduled for tomorrow. The urgent care Dr advised me to call everyday and there will likely be an opening they can fit us into.

 

It is looking more and more like he has epilepsy. I am pretty certain that the grand mal was not an isolated incident. 

 

After the neuro appt we will need to meet with DS's college and see if they can switch him to some online classes so that we do not have to drive him this upcoming semester, although we could if that can not accommodate us. 

 

Sigh. Poor guy, he is feeling scared and frustrated. Things always happen for a reason and I am racking my brain to try to help him to prepare to potentially embrace a new normal and figure out how to rock it rather than feel victimized. No small task there.

 

 

 

 

[SemiSweet]

:grouphug: How scary. Hope he can get into neuro earlier. My thoughts are with you and your ds.

[fraidycat]

:grouphug: :grouphug:

[Tap]

Update:

 

Yesterday morning DS had two panic attacks. After all of the reading that we have done we recognize that they are not simple panic attacks but look more like partial complex seizures. I looked up temporal lobe seizure and found the description there...lip smacking and  speech disturbance/jumbled were what concerned me. He has had these events before but until the seizure on Sat. we thought they were just panic attacks :-(

 

Took him to urgent care, where they gave him and anti seizure med to keep him safe until we get in for the neuro appt. (2 weeks away!) at least we have the EEG scheduled for tomorrow. The urgent care Dr advised me to call everyday and there will likely be an opening they can fit us into.

 

It is looking more and more like he has epilepsy. I am pretty certain that the grand mal was not an isolated incident. 

 

After the euro appt we will need to meet with DS's college and see if they can switch him to some online classes so that we do not have to drive him this upcoming semester, although we could if that can not accommodate us. 

 

Sigh. Poor guy, he is feeling scared and frustrated. Things always happen for a reason and I am racking my brain to try to help him to prepare to potentially embrace a new normal and figure out how to rock it rather than feel victimized. No small task there.

Wow, what a lot to take in for your family.  I am glad you are finally getting some answers.   :grouphug:  :grouphug:

[Pawz4me]

:grouphug: :grouphug:

[shukriyya]

:grouphug:

[happi duck]

(Hugs)

[Stacia]

:grouphug: :grouphug:

[Peach]

Thinking of you and your son...we went through this last year - my son is 16. It can be scary but take it a day at a time and you can get through it. Knowing is half the battle, as they say, and once you get some answers and a plan of action you'll feel much more in control. Hang in there!

[Ewe Mama]

:grouphug: :grouphug:

[applethyme]

:grouphug:  :grouphug: :grouphug:  

[Ottakee]

The hardest part is the not knowing.  It isn't easy once you know, but then you know what you are facing, have a plan of attack, etc.  Keep us posted......and I agree with calling every day for a cancellation for the EEG and neurologist.  I almost always get into specialists earlier that way.

[Amira]

:grouphug: I hope you get some answers in the next few weeks. Good luck!

[heartosunshine]

:grouphug:

[Tsuga]

You're in my thoughts.

[Guest]

I am sorry; such a frightening thing.

[trulycrabby]

Gosh, hugs to you and your family. :grouphug:

[Whereneverever]

Did they send him home with a rescue med, too?

[unsinkable]

(((Cakes)))

 

I'm sorry to read your update.

 

Good luck with the EEG tomorrow! It should go smoothly...it is a lot easier with a teenager than a toddler or young kid who'd rather socialize with the EEG tech than try to fall asleep. :lol:

 

And I hope a Neuro appt opens soon.

[Firefly]

What a scary thing to experience!  I'm sending good thought to you and your son; I hope you get some encouraging news at the doctors.

[Whereneverever]

(((Cakes)))

 

I'm sorry to read your update.

 

Good luck with the EEG tomorrow! It should go smoothly...it is a lot easier with a teenager than a toddler or young kid who'd rather socialize with the EEG tech than try to fall asleep. :lol:

 

And I hope a Neuro appt opens soon.

 

SRSLY, last EEG they put Frozen on while attaching everything and then TURNED IT OFF. My kid was not amused. 

[Cakes]

Thank you for all of the hugs and support!

 

Neurology called and can get him in for an appointment in one week, which is a week sooner than planned. They should have the results of the EEG by then. 

 

Fingers crossed!

[Melissa in Australia]

:grouphug:  :grouphug:

[unsinkable]

SRSLY, last EEG they put Frozen on while attaching everything and then TURNED IT OFF. My kid was not amused.

Huh? SMH...

 

Poor bunny. Who turns off Frozen?

[Lizzie in Ma]

:grouphug: :grouphug: