Worried Mum of 13yo Boy

[Mollydolly]

Hello

My son turned 13 in July, 2 days later he had his first ever (as we know) seizure. It happened at bedtime, lasted between 1 and 2 minutes (I think, even though it felt like forever) it was a tonic clonic seizure and his mouth and nose went blue.

17 days later it happened again at bedtime, not quite as severe.

He was taken to hospital both times by ambulance and has also had an EEG, which returned - normal! we have had 2 outpatient appointments with a General Peadiatrician, on the second we were discharged.

3 months after the last seizure and 6 days after being discharged my son had another seizure at bedtime and went to hospital again. We are now in the process of being referred back and I have asked for an MRI scan.

We were offered Tegratol by the Registrar at our 1st outpatient visit but we decided against it as we were worried that if he started medication we wouldn't know if the meds had stopped the seizures or if they had stopped anyway.

At our 2nd outpatients appointment a different Registrar seemed to support our decision.

The Doctor? or whoever we saw at the last admission to hospital also supported our decision and said at the moment she thinks the side effects outweigh the benefits.

I was told to go back to my GP which I did, he doesn't support our decision and basically thinks my son should be on medication and basically scarred me with what he was saying.

I am so worried, confused, overwhelmed by all this information and also by the lack of information.

Don't really know what I expect anyone to say in response to me but feel I need to write it down and share it with someone/anyone!!!!

Sorry if I have rambled on.

 

[hootie]

Welcome to CWE!

Sorry you are going through this with your son. It is confusing when you get conflicting advice from medical personnel. My advice is do your research to help you determine what is best for your child.

Is there a chance he had been exposed to something new before these episodes...a new food, cleaning supplies, etc? Keep an eye on what is going on and keep a journal. It may help you to track down a trigger. Could it be that he was over tired those particular nights? Did he bump his head before this started?

 

[jimijimenez]

yeah! its hard at first and theres a lot to learn, its a scary illness, by our perception rather than it base. Your son does have epilepsy technically and this can take sometime to adjust to, especially for him. The eeg has to record while a seizure is happening, a negative eeg doesnt mean he doesnt have epilepsy sadly, it means he didnt have a seizure at that exact moment in time. On the upside youve caught it early (took me 2O years) and this helps the long term outcome statistically. Also on the upside, if its just tonic clonics and not simple complex partials also (eg dejavu, unable to talk at times/ forget time/spatial distortions etc without convulsions) drugs are quite effective then. If you treat it now it will potentially mean he should be cured and be able to stop taking them sooner and be able to drive etc. If you wait a) seizures do damage the brain b) the more seizures you have the more likely you are to have more c) drugs wont be as effective. I was diagnosed late, refused with medication, and after it getting out of control, accepted their role.I will have to take them for a very long time. BY all means be cautious, yes the drugs have side effects especially at the start, make sure he sleeps well, make sure he eats well and has enough blood sugar, stress (and prob in his case new hormones and brain maturity) are also triggers take care of these and less drugs are needed. Some of the newer drugs have fewer side effects and this can be a way you can minimise the downside also. tegretol is not the worst! My advice is really... he is having to many seizures...and they are not under control currently...and I can almost promise you they will return...hes rate is too high... so when he is ready.. maybe even school holidays is a good time..give the tegretol a shot.. and hang in there it will be okay. your lucky youve caught it early and hes lucky he has caring parents! x

 

[Nakamova]

Hi Mollydolly, welcome to CWE!

I'm sorry that confusing messages from the docs are making a tough time tougher. I know it would be great if the EEG could confirm your son's situation one way or another, but unfortunately false negatives and false positives are fairly common. Quite a few CWE members definitely have epilepsy, but have never generated a positive EEG test. More than two seizures does indicates a vulnerability to having future seizures.

So it comes down to whether or not to medicate. As jim says above, there is a risk that your son's seizures will increase or cause other problems. The meds have their downsides too -- they need to be taken consistently to be safe and effective, and they can have a range of side effects. There are quite a few meds out there to try, but the process of finding the right one can sometimes be drawn-out and tiring.

I think you should discuss treatment options in detail with your son's neurologist. Ask about all the meds out there -- which ones have the best track record in teenagers, what potential side effects might be, how long your son would need to be medicated before considering coming off the meds (usually 2 to 5 years), etc. You might want to learn about neurofeedback -- it's an alternative treatment that doesn't involve meds. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Hootie's suggestion of a journal is an excellent one. Sometimes seizures that come "out of the blue" can be triggered by one or more things in our environment. Triggers can be physical, physiological, and emotional. Some sample triggers: Fatigue, low blood sugar, dehydration, food sensitivities or allergies (MSG, Nutrasweet, gluten, etc.), infection/illness, flashing lights, physical stress. Was there anything in your sons' diet or routine that might have played a role? [It needn't necessarily be something unusual. In my case, aspartame (Nutrasweet) played a role. I had been drinking diet sodas for many years, but on the days preceding my initial seizures, that's ALL I had been consuming, no food. That plus a lack of sleep plus emotional stress seemed to b what pushed me over the edge.]

I hope you get some answers soon. Feel free to check back here with questions -- CWE members can offer a lot of advice and support.

Best,
Nakamova

 

[Malla]

Hello Molly, I am sorry to hear that your son has got epilepsy. Yes, it is frightening to both watch and endure the seizures in the beginning. It takes time to get over the fear. I think many of us with epilepsy have encountered doctors with different meanings regarding treatment and it can be both confusing and discouraging - especially when you really need some answers - now! ..... I have had 2 EEG's and they have both been normal. I have also had an MR scan - also normal. Having normal scans and tests does not mean you don't have epilepsy. So don't give up! In this forum you can search for answers. It has helped me tremendously - especially to compare symptoms and to get some answers to what is happening to me. Your son is in my prayers. Sincerely Malla


Oh and my triggers are pc/tv monitors, fluorcent lights, physical pain (headaches, neck/back pain) getting startled can also send me into a seizure. Then I have noticed aspartame, caffein and nicotine.