Seizures

[Wavery]

It was actually a Dr recommendation to help him relax at night. And is on his med list in the computer at hospital. He's been taking it for about 2 years.

I'm not suggesting that melatonin caused the seizures or should not have been suggested. A lot of people have good results from melatonin. It is used, by some, in the treatment for seizures in certain cases.

The fact that it alters brain chemistry and he was not having seizures before taking melatonin may be cause for suspicion (I would think) but that would be something to talk to the Dr about. I would be suspect of any kind of chemical reaction or possibility of allergies. I once knew a lady that had seizures for years only to find out that she had an allergic reaction to the fillings in her teeth. They replaced her fillings with ceramic or something and she never had another seizure.

ANOTHER ....BTW.... don't ASSUME that the Neurologist is aware of the melatonin just because it is on his chart. My Phenobarb is on my chart. I had cancer surgery a few years ago and I constantly reminded the Dr and hospital about it. After surgery, there was no Phenobarb in my meds..... I asked about it and they were totally unaware. I went for 3-days without my seizure meds because the hospital (USC of all places) didn't stock it anymore and they would not let my wife bring it from home (A seizure would have surely killed me at that time). I constantly tell my Drs that I am allergic to Codeine (it immediately puts me into  anaphylactic shock), it's on all of my records and I tell them EVERY TIME that I go in. ...... what do they proscribe for pain when I was released from the hospital? ...... Vicodin..... 70% codeine........

Bottom line...... manage your own meds and be sure to discuss meds with the DR. Don't assume that they read your chart.

 

[cdibbs]

Hi there,

My wife has epilepsy but hasn't had a seizure for eight years now.  (Knock knock knock).  She used to have them quite regularly, but they have kind of stopped.  What I wanted to point out though is that she was able to sense or feel them coming.  There were several warning signs for her.  Hopefully your son will not have any more, but if the do continue hopefully he will be able to identify these signs. 

I'm sure as an outsider looking inward this may sound silly.  I can't imagine my daughter going through the same thing.  However, we have only a short time on this little earth.  Don't let this get in the way of enjoying life.  Just stay conscious of it.  Best of luck finding a source.  I've got a prayer for you and you family.

 

[Conquest102]

It's OK Dad's a trained EMT the only reason I even tried to move him was to get him out from under the piano. Then he started to gag and choke other wise yes just keep him from hurting himself.

I am confused about the Melatonin tablets they are suppose to be a dietary supplement for stress releif and sounder sleep. We buy them at sam's NO script needed.

As far as meds go I go over the list and ALWAYS ask why they are giving it. I have a pretty long list myself and have a couple of mistakes from staff in the past as well. It's funny how they try to get testy sometimes when you question them about meds. I don't care however they aren't the one its going to cause a problem for.

The time limit is 5 minutes and called status epilepticus.  We were told if he had another one before the neurologist visit to call 911 and get him back in. Yes otherwise its monitor and then calm and comfort when its over. I since have gotten all my books back out and had a massive refresher course and learned some new things from my research as well. Your advice has been VERY helpful I have passed it on to the DW as well.

Were not in total despair Gary just looking for advice and guidance from folks who are in the know with the RV side of it and what to look out for while trying to enjoy life.
What would you folks recommend for transport around campgrounds this summer since he is not suppose to drive. I'm guessing my RUCKUS is out of the eqation as well as his bicycle. He's kinda big to pull around in a wagon as well ;D. We don't want him to just sit around doing nothing the campground we are using has a beach into a lake should he have a vest on or would that draw to many stares. We like for the boys to fit in as best as they can which can be very hard sometimes.

I all ready have a sign on the front porch for rescue/police to let them know there are special needs kids here that may not respond to verbal commands. The 2 boys have a tendacy to shut things out when stressed. Trust me the last 18 years have been one H!@@ of a learning experiance for us. This is just another chapter in that book.

 

[Wavery]

It's OK Dad's a trained EMT the only reason I even tried to move him was to get him out from under the piano. Then he started to gag and choke other wise yes just keep him from hurting himself.

I am confused about the Melatonin tablets they are suppose to be a dietary supplement for stress releif and sounder sleep. We buy them at sam's NO script needed.

As far as meds go I go over the list and ALWAYS ask why they are giving it. I have a pretty long list myself and have a couple of mistakes from staff in the past as well. It's funny how they try to get testy sometimes when you question them about meds. I don't care however they aren't the one its going to cause a problem for.

The time limit is 5 minutes and called status epilepticus.  We were told if he had another one before the neurologist visit to call 911 and get him back in. Yes otherwise its monitor and then calm and comfort when its over. I since have gotten all my books back out and had a massive refresher course and learned some new things from my research as well. Your advice has been VERY helpful I have passed it on to the DW as well.

Were not in total despair Gary just looking for advice and guidance from folks who are in the know with the RV side of it and what to look out for while trying to enjoy life.
What would you folks recommend for transport around campgrounds this summer since he is not suppose to drive. I'm guessing my RUCKUS is out of the eqation as well as his bicycle. He's kinda big to pull around in a wagon as well ;D. We don't want him to just sit around doing nothing the campground we are using has a beach into a lake should he have a vest on or would that draw to many stares. We like for the boys to fit in as best as they can which can be very hard sometimes.

I all ready have a sign on the front porch for rescue/police to let them know there are special needs kids here that may not respond to verbal commands. The 2 boys have a tendacy to shut things out when stressed. Trust me the last 18 years have been one H!@@ of a learning experiance for us. This is just another chapter in that book.

If it were me..... I would restrict his activities on bikes & stuff for a few weeks to be sure that this isn't the "Start" of something. He may never have another seizure and he has NO IDEA what you are going through and what you witnessed. Chances are, the witnesses are far more traumatized than he is (at least that was my experience).

If he goes 12-months without another seizure, the incident MAY be an isolated one. If he has another one, things will change dramatically. It's sorta like if your car backfires once... it will concern you and make you wonder why it happened and if it will continue to happen. When/if it happens again, it's off to a mechanic to find out why because something is definitely wrong. The problem is, the brain is so complex and medical science is still in it's infancy as to understanding how it works.

The only thing that can be done, at this point, is to control the seizures with meds. They are experimenting with some types of brain surgery manipulating connections but they are a long way from real correction. Your son is young and chances are, they will come up with IDing and correcting these issues within his life time.

I will have to find out exactly what procedure that I had performed on me about a year ago. They were able to show me the exact place in my brain that was reacting to stimulation that produces seizures. I could actually see the reaction. To me... that was a miracle. It wasn't all that many years ago that I was told that it was "Impossible" to tell how or why the brain short circuits. At least now they can tell where and how it shorts. They just can't figure out how to fix it "YET".

It would be interesting to know if your son had an "aura" or an "odd feeling" just prior to the seizure. Some people have them and learn to get to the ground before the seizure starts.

 

[Conquest102]

His older brother was FREAKED OUT about it. The only thing we got out of him was he got up from the couch walked a couple of steps then spun around and fell down. The fall is what we heard from the other room it was very loud shook the house. we were told 6 months of NO driving but he doesn't drive anyway his vision is to bad no depth persepction or peripheiral. He's worn glasses since he was 2 yrs old. If you remember the name of the test I will ask the DR's about it.

 

[Wavery]

His older brother was FREAKED OUT about it. The only thing we got out of him was he got up from the couch walked a couple of steps then spun around and fell down. The fall is what we heard from the other room it was very loud shook the house. we were told 6 months of NO driving but he doesn't drive anyway his vision is to bad no depth persepction or peripheiral. He's worn glasses since he was 2 yrs old. If you remember the name of the test I will ask the DR's about it.

I would be surprised if they haven't already done it. It's basically an EEG and an MRI or CAT scan at the same time. I seem to remember that they used a florescent die or something to illuminate the area of activity.

Seizures can be hard on loved ones. Mine was so severe that my wife was scared to death to be around me and after my 2nd seizure, she really freaked and asked for a divorce. It was the ultimate in "friendly" divorce because her trauma was worse on me than the seizures, by far. It's just a shame that the kids had to suffer....... anyway..... the best thing to do is educate his brother.

Seizures are often very embarrassing to the patient.  If he does have another seizure, it's important that as few people as possible are in the room when he is going through it and comes out of it. Being calm and "normal" is critical, especially with young people. Often the patient will lose control of their bladder and bowels. Clean-up should be no big deal. Don't be surprised if he sleeps for 12-24-hours after a seizure. However, it's important to get life back to normal ASAP.

 

[John From Detroit]

One thought just came to mind.. I have witnessed one seizure in my 60+ years on this earth. And 2 or 3 more incidents that might be classed that way (I'm not sure). None were caused by epilepsy, All had other causes,, 3 of them Diet, The person had not eaten that morning, one of them did a real good Seizure, the other two just passed out.  The third one was yet another cause... I actually caught her as she fell.

 

[Frank Hurst]

Robert, there has been some very good advise being given by Waverly. As Wendy stated, dog can be "our sons" and although they are not human many of their brain functions are the same. When I have a dog that has had a seizure I emphasize that the owners keep good records. Keep notes: How long (Make a point of noting the time. When one is having a seizure 3 minutes can seem like 20-30 minutes), how strong, what part of the body involved, how long after eating...etc. 
Always follow your doctors advise, but as a veterinarian I do not put dogs on medication with their first seizure. I have had dogs that never have another seizure. However, if once on medication I would never change medication up or down without my doctor's advise.
I had an interesting case several years ago. Dog in an outside dog pen. Neighbors dog came into estrus and clients dog began to have epileptic seizures. Placed dog on phentobarbital for 3 weeks. No more seizures for 6 months until neighbors dog came into estrus again. After 2 years the clients dog began to have seizures through out the year and had to be put on medication full time, but the medication had to be increased for 3 weeks ever 6 months. This continued for 8-9 years. The client offered to pay for having the neighbors dog spayed but neighbor would not allow his dog to be spayed.

Frank

 

[kaylin640]

I would suggest a sleep study as most people with ADDHD or Autism disorders tend to have trouble sleeping that adds to the disorders.
Also have you researched other types of seizers
There are mild seizers people can have that most wouldn't even reconize as a seizer is it possible he has been having any of these prior to or after the grand mal seizer.
I have spent many years tending to People with horrible seizer problems
Your doing great to research as knowledge is your best friend

 

[Conquest102]

He had a sleep study about 2 years ago it was normal. He does snore but doesn't stop breathing. I slept on a cot next to him during the study.

We  did go to regular Dr. today and we will be changing the dose of melitonin to as needed instead of every night we will do a step down. Starting with a half tablet for 2 weeks then only as needed. He checked his data base and no mention of it causing seizure but people that have them can be made worse. Thats the reason for the change so not to add to any issues he may be having. Unless he has another one we will wait until the EEG results to do anything else. Which sounds like the correct approach to this. So far he has been acting ok. We did see a differance in his hand writing and brought samples to the DR. He said to make sure the neuro sees them as well. There also seems to be a gap in some memories going back to around Halloween thru Christmas 2012. Other wise like waverly said he has no issues he's his happy go lucky self.

Dr. also advised to keep him back from any camp fire we make this season. He was in Haiti and saw several children that had seizures with severe burns from falling into fires at night to stay warm. The rest of advice was the standard stuff NO driving someone should be around him at all times incase he has another one for the next 6 months unless the Neurologist says otherwise.

Again thanks to everyone for the advice and the support.

 

[davencjkan]

Don't know if this will help or not, but my wife and SIL (twins) both have epilepsy which didn't show up until their 20's.  They are both in their 60's now and still taking medication.  No seizures for a long time, but if one doesn't take her medicine for a few days, they start stuttering, which is the beginning of their seizures. 

It is easily manageable, but respect what the docs say and make sure it is followed.

 

[Conquest102]

Don't know if this will help or not, but my wife and SIL (twins) both have epilepsy which didn't show up until their 20's.  They are both in their 60's now and still taking medication.  No seizures for a long time, but if one doesn't take her medicine for a few days, they start stuttering, which is the beginning of their seizures. 

It is easily manageable, but respect what the docs say and make sure it is followed.

Great tip. He already has a stuttering problem since he was little. I know if you have read the other post the poor kid has a LOT of troubles BUT they don't keep him down for long. Its GREAT to hear so many good longterm out comes 

Dr orders are followed to the letter in my house with all the meds.

 

[JudyJB]

Age 18 is a very difficult time to end up with something like seizures, especially on top of Aspergers.

If he has another seizure, you might check into a service dog that alerts to serizures.  There are such things, and your son if he were alone would at least have some warning so he could sit or lie down.  In the meantime, I think he should be accompanied by a brother or family member who could observe at least from a distance.

I went to elementary school for many years, way back in the dark ages, with a boy who had seizures almost every day.  It freaked out the teachers, but we kids got very used to it.  The boy who sat behind him had the task of catching him and lowering him to the ground so he would not fall.  We just continued doing what we had been doing.  When the seizure was over, the boy would go to the office to rest a while. 

 

[Conquest102]

JudyJB Your story shows how well kids cope with issues that freak out adults. He does have a major advantage he has 7 watchers. He is home schooled so we the ones who love him the most are the closest to help him. Never thought about the dog might have to look into that wander how our cats will like the idea :.

So far he is doing well he has tried to use the excuse a couple of times to get out of chores. His sibling aren't gonna let that happen as long as it can be done safely. His chores aren't to tough we have tried to keep them very straight forward do to his other problem already.

 

[Wavery]

So far he has been acting ok. We did see a differance in his hand writing and brought samples to the DR. He said to make sure the neuro sees them as well. There also seems to be a gap in some memories going back to around Halloween thru Christmas 2012. Other wise like waverly said he has no issues he's his happy go lucky self.

As I mentioned previously, the seizure short circuits the brain and all sorts of quirky little things might be expected for the days or even weeks after. Lethargy is common for a few days, lapses of memory and motor function impairment shouldn't be cause for alarm but something to monitor quietly and discretely. I think if it were me, I wouldn't mention these things to him as dwelling on them may make recovery more difficult. If he thinks that others are watching his movements, it could make him feel unnecessarily selfconscious and that in itself could aggravate the issue.. Kinda like scratching a wound.....

Returning to life as "normal" is an important part of the healing process from a seizure. It is somewhat common for young people to feel like others may be seeing them as a "Freak". Young people tend to feel that way when anything is "Different" from what they per-sieve as "Normal"...... like freckles, acne, a limp.... stuttering for sure.

It's WAY to soon to start thinking about a service dog. I have a friend that has one that sleeps with him because he has "Sleep seizures". The dog senses the on-set of the seizes and licks my friends face to wake him up (at least, that's the theory). The service dogs for seizure disorders are still controversial and would probably only be worth considering for a person with a severe seizure disorder. At this point, I wouldn't consider that your son has a seizure disorder at all. If he has another one, things start getting a little more serious.

 

[Conquest102]

We are making sure not to dwell on it. Like you said just watching descretly. We go in the morning for the EEG so one step at a time. So far NO other episodes he has pretty much returned to normal as a teenager can get. He wanted to go out in the 6 inches of snow but little sis(7) conviniced him oterwise.