17yr old son diagnosed 1 year ago

yram

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Hiya,
I normally avoid forums in general for various reasons but this is pretty good and seems to have loads of helpful and knowledgeable people so here goes................Sorry it is soo long - will keep it shorter in future!
My (then 16yr old) son was diagnosed with primary genralised epilepsy in March 2009. He first collapsed in the bathroom in November 2008 but we could not confirm it was a seizure.We had him taken to hospital for checks ,EEg,MRI Xray,bloods,toxicology.all came back clear. The only indication that he could have had a seizure was his tongue had a small bite mark and he couldn't remember anything. Then in Feb 2009 he had a seizure ,again early in the morning while he was on a school adventure weekend trip.This time there were witnesses and it seems like he had a tonic-clonic/grand mal seizure. This came as a total shock.We have no history that we know of in either of our families. He has never been sick or had any injuries let alone head injuries.He is fit and healthy and has always eaten well ( crunches on carrots and apples and fruit rather than junk).
He went through similar tests but the neurologist suggested a Video EEG to confirm.The results came back with a positive diagnosis and they said something about 3hz spikes (still confuses me).
We agreed to put him on epilim (Sodium valproate)and within 2 months he was on 500mg x 2 a day. He seems to be handling it well.No more seizures so far. only side effects seem to be slight weight gain and allergies to some creams (gets rash). He does get a bit moody now and then but I have been getting him sessions with Bodytalk to help with this and it seems to help.
Now that he seems stable,I am thinking about alternate treatments because he really hates the meds (who likes them anyway!).I read about biofeedback and got excited .I phoned the neurologist and she is totally agianst it ,even citing that if it was her child she would not do it. I have noticed ,that she is not v forthcoming on other forms of treatment at all,although she was thorough on the diagnosis side.She keeps saying that this is the best form of treatment for him now and biofeedback does not help this type of epilepsy.She also said it could make it worse by stimulating the brain more.
I find that hard to believe based on the research available on the web
My point is that why should I wait before things are really bad before trying alternate therapies?
Yes he is one of the lucky ones who seems to responding to the AEDs,but I have brought up my kids with minimal medical intervention all their lives and this is a bummer!They haven't even been on anitbiotics more than twice in their whole lives.They see a doctor maybe once a year if that.
I have a theory that there is always an underlying reason for illnesses and symptoms. Whether it is an injury or genetic or if none of these then it is just the way the person handles their thoughts and feelings which can then manifest in physical symptoms. I could be wrong but I have always felt the mind is a powerful organ. But now how do I pursue this without putting him at risk? I am in South Africa and I feel that often most specialists seem to think alike-how do we make money from medical kickbacks! Apologies to any who do not do this but I haven't had the right experience yet. Is what the neuro saying right? Should I just accept this and let him stay on meds forever.my instinct says he should not.
 

Nakamova

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Hi yram, Welcome to CWE!

The brain IS amazingly plastic, and the ability for it to rewire itself is astounding, (although I'm sure it varies from person to person). Your neuro may be against biofeedback/neurofeedback, but it has helped people, and doesn't seem to have any side effects. So I would encourage your son to try it, and see how it goes (while staying on the anti-seizure meds for the time being). The only drawback may be cost -- at least here in the U.S. it's very unusual to get the sessions paid for by insurance.

Another route to consider is dietary. More and more people are finding out that gluten seems to play a role in their seizures, and for others, low blood sugar or a nutritional imbalance can be a trigger.

Best,
Nakamova
 

yram

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Thanks Kakmova..... I really do not mind paying for the treatment but unfortunately I am in Durban and I can't seem to find anyone who practices biofeedback for epilepsy.I am concerned that if the practitioner is not properly qualified it will not be an effective experience.Also ,newer treatments tend to arrive in Johannesburg and Cape Town far quicker than Durban ( smaller town and far away from Jhb and CT). So if there are any other durbanites here please let me know :).
I will also try the change in diet. If anything low GI will help the weight gin as well.
 

RobinN

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Hi yram,
My daughter was a patient of neurofeedback (you can read about it in Rebecca's story linked in my signature). I highly recommend it. However, now that I am more knowledgeable, I would say it is best to get nutritional changes/improvements underway prior to doing neurofeedback. I saw positive gains during treatment in many areas, but she was med free going into treatment. Many are able to reduce meds following nutritional changes, and during NFB training.

I personally don't think that your neurologist is very well informed on the subject.
There are many alternatives, and medication unfortunately is only one route, but the one that is offered immediately following the second seizure.

You can check out this site, to see if there are providers near you:
http://www.eegspectrum.com/Providers/
 

Rae1889

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I'm not sure if this is correct or not,
But as fas as I know, neurofeedback is a "generic" process. The information on the EEG is given, and they work with that. This is used for autistic children as well and most children with autism also have seizures.

I would also see if its possible to get referred to a new neurologist, or if they have an epileptologist. *someone who specializes in E* If she isnt willing to work with you, then you need someone else. It is your son, and ultamitely your and his descison on what treatments you would like to try. Not hers. She can give her medical opinion, give you all the pros and cons, but in the end, should let the descion be up to you.

Do you know what triggered his seizure? *what made him have the seizure as opposed tro what caused his epilepsy*

Does he experiance anything else he finds "odd"? there are many other types of seizures than just a grand mal, and most people have more than grand mals. There are absences *small staring spells*, myoclonics *twitchs* simple partials *mysterious smells, tunnel vision, intense emotions suddenly*, comple partials *unresponsive behaviour like walking aimlessly, fidgeting with clothes* and then tonic clonics.

Epilepsy can come out of nowhere at any age, and sometimes the "invisible seizures" are ignored as "nothing to worry about" until they generalize into a tonic clonic.

Going back through his history, has there been any other strange events that your remember? Sleep walking? frequent bed wetting with 'night terrors"?

Anything that he has been to the hospital for? What did he go on antibiotics for? as certain infections and illness can cause seizures in the long run. *Meningitis, chicken pox can cause an adverse reaction in some people, etc* Allergies to anything? Anythings at all that you remember can help bring things into perspective.

Have you ever heard of a seizure diary?
 

yram

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@robinN - We are vegetarian so I have supplemented his diet already with a multivitamin and he also has the omega oil (EyeQ- omega 3 and omega 6 fish oils.) supplements to help him focus on school as he is in his final year before University. I am wondering whether I need to be a bit more selective on the suppplements - should they be organic? should they contain more of one thing than another?...that sort of thing.

I am seriously thinking of changing the neuro.It is pretty in drastic in a small place like durban as all the medical people tend to know each other.But maybe if I contact a practitioner for NFB thenthey will know someone who is more broadminded
 

yram

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Hi Rae,
It's so good to talk to people who know so much and think along the same lines.I have very good friends but they can't really help much as they aren't so clued up on this. I have tried looking for an epileptologist ,but not much luck so far. The service here is so crap. The neuro only returns my call 4 days later. The neurotechnologist that did the VEEg has not even replied to my mail from last week.
We cannot pinpoint a common trigger for the seizures for sure. The only commonality is that they both occurred early in the morning ( not even after a late night). The first time he had one,his last memory was of looking out of the bathroom window to see what the weather was like .On his second one he was sleep deprived,and had been playstationing.So we keep an eye on these two things.Very difficult for a teenage boy!He woke up and went outside and looked at the weather /sky again.Then he doesn't remember.But his friends said he came back inside and turned on the radio and then he fell.They caught him and lowered him to the couch ,then he started "convulsing".He does not even remember coming back in side. I read about the memory loss after seizure -so I assume that is why. I have never seen of the odd behaviour you have asked,or anything else.I have racked my brain over the last year for any clue.The antibiotics were for a common chest infection/flu.They weren't anything more than amoxyllin. He had occupational therapy for 3 months as a child (5yrs old) as the teacher noticed signs that his gross and fine motor skills were not as developed as they should be. But this involved physical training and fine motor activities -no meds,injuries or anything invasive. He was ok after about 3months and went on to doing sprots and being very active.
I have recorded info around his 2 seizures,time place,food,activities...Is that what you mean by a diary? He hasn't had any others since he started meds so it is very limited info.Not that I am not grateful for the lack of seizures but I would like him off meds as soon as I think it is possible without jeopardising his chances of being seizure free for 2+ years (the magic 2yr milestone ...eh?)
 

Rae1889

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Well, it sounds to me that he is photosensitive. maybe to movement more-so than flashing light?

Checking the weather, he could see sunlight moving through the trees, or cars passing, and the patterns can cause a seizure. The playstation can cause a seizure to. the graphics, and the intense consentration. So thats my first guess to that.

The walking inside part, sounds to me like a complex partial first. and then it generalize into a tonic clonic. This isnt uncommon, so I could almost bet money on that.

As far as the occupational therapy. Was he ever told that he doesnt pay attention? Absenses can be so small that they may not be noticed. You dont even need to stop mid sentence. sometimes it could be while listening in class, or a small skip/stutter in speaking. When I have an absence, I usually dont even know I had one and I can go right back to where I was in the conversation if they are short enough. I have had some that last a really long time.

You should ask him if he has experianced any of the "invisible" type seizures. the smells, or sounds *like you can hear a radio but cant make out what it says etc* or tingles or feelings etc. because those ones are personal experiances, they usually arent visible from the outside
 

Nakamova

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I would add that though your son may have been having complex partials, he may not have. My situation has been tonic-clonics without warning, and no other kinds of seizures, so it can vary from individual to individual. And it's not unusual for him to have no memory what he was doing immediately before the tonic-clonic occurred. Either way, finding and eliminating primary and secondary triggers can make a difference, so if it looks like Playstation/fatigue may play a role, then do your best to encourage breaks, and good sleeping habits.

I don't know how available they are in South Africa, but there are home EEG systems that you can get to help re-train the brain. Having a neurofeedback practitioner do the training is preferable of course, but it's possible a home system could help, especially since the training is in some ways like doing a video game.
 

Rae1889

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Hey Nakamova and Yram.

Me and Chris515 were looking at getting one, and so far as I can tell, you can order them online too. and order "game" like packages. I think we saw them for about 2500-6000 dollars depending on the type you wanted.
 

Nakamova

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If you get one let me know! I looked into getting a home system a few years back, but they were only PC-based (and I'm mac all the way baby). The other thing I'd heard is that it can be tricky to get the electrodes placed properly, but maybe the set-ups have gotten better now.
 

yram

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Wow...so much to think about. The neuro never mentioned partial at all. Lucky I have a CD copy of the Video EEG to get a second opinion.

Feel like I've been sitting idle for too long....

But I got a msg with contact details of a neurotherapy practitioner today...out of the blue. I don't who sent it yet....she said she has worked together with a neurologist on a child with epilepsy in Durban....I am quite amazed cos I have been loking for a few weeks now.
There is a website of a company in SA that supplies this eqpmt as well. I can't believe that my current neuro says it could make the epilepsy worse! I will chat to this practitioner and the new neuro and see what their opinions are.
It really feels like I am making some positive progress - even if it is only information at the moment.

Thanks guys :)
 

Rae1889

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I don't actually think it can make it worse if you know what you are doing. I have heard a few *may 2?* people say that it made it worse, but you cant help but wonder what else could have contributed to that.

Definitely Nak. It won't be for a while until after I am married, and we have paid it off a bit more. but Yeah. I didnt check and see the MAc part of it, but I do have a PC sitting there and doing nothing at the moment. collecting dust and looking envious at our Mac!
 

yram

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I'll ask him about the "invisible" things. It would be great if he read some of the posts here,but I think he has alot on his plate with exams andhectic study schedules. He also tends to not want to think about it too much.More like "let me take the meds and then this will be over in a couple of years".This is partly because of the way the neuro spoke when he was first diagnosed and partly cos he is a very positive thinker in a simple way.He doesn't like to hear bad news and if he does he will listen to the "fix" ,apply it and then carry on. Sweet really ,but expectations are harder to manage like that.
 

RobinN

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My daughter is also of the mindset not wanting to think about it on the good days.
She did not understand why with medication she was getting worse. Doctors did not have any answers for her.
It wasn't until she began to follow, understand and believe that nutrition was actually helping her remain seizure free, that she is being more proactive by herself.
 

Terri

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Moving to Durban - need a good neurologist

Hi
Am in Jhb at the moment, moving to Durban at the end of the year, and will need a neurologist for Tegan, my 13 year old daughter.
Anyone got any recommendations?
Tegan is taking Zarontin and Lamictin. Her EEG shows her petit mal seizures are not totally under control
 

yram

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Hi Terri,
Can your Neuro refer you to someone in Durbs?
We are on our second one but I am not convinced. The one we have now
is Dr Bhagwan and he came highly recommended from a few friends who are in the field. When I say not convinced , it's because I am looking for a more openminded approach to treatment , not because he isn't thorough or caring etc .
 

Terri

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Thanx

Hi
I will ask our doc up here, we will be in Westville, so will also look for someone close by.
I really learnt so much about this new trauma in our lives from this website, and will continue to learn more everyday.
Thanx for the reply
 

yram

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This forum is great . It has so many different levels if knowledge and from various perspectives. The information and support on this forum help with all sorts of questions. When my son was diagnosed , it was so difficult to understand . I found several sites which just kept saying the same thing: the drugs are the only treatment. For the time being , because his seizures are controlled and he is away from home, we are not thinking of changing the treatment plan but maybe later choose to wean him off and use alternatives. It's a hard choice. Dr Bhagwan is in Durban town centre. His rooms look pretty basic ( no fancy uptown plush rooms) but he is quite knowledgeable. Prior to him we saw Dr Francis. She was the doctor who diagnose him and was very thorough but I found she was narrow when it came to treatment options. I think generally the doctors get kickbacks here from the med companies and are quick to prescribe . My personal opinion and I have no proof to support this theory. He had a 24 hr EEG with Candice Bottcher at Entabeni. She was the first person to break the news to us but at that point I was in denial and thought about 2nd opinion. I haven't really looked for another Neuro and I haven't found an epileptologist in Durban .
 
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