Newbie and distraught

[patrickh]

Hi Everyone,

I am new to this site and hope it brings some comfort. I have had a week of sleepless nights and lots of tears.

Out of the blue starting October my Son started having Tonic-Clonic Seizures so far he's had 3 each one exactly a month apart.

This has absolutely terrified me and my wife. The first two times October, November he was playing Xbox so we immediately removed this as we thought we may have found the trigger. Then last week he had another in the bathroom almost to the day. He is 15 years old.

He is going through exams at the moment and is also on Antibiotics for Acne so we are trying to eliminate everything that may have triggered this. Antibiotics say one of the low side effect is pressure on the brain.onder:

On his last seizure it was strange as he came in from School and started to revise for his exams the next day which was unusual as he usually has the be asked. Then went to the bathroom and boom we heard the fall.

He has had the EEG and test result shows generalized Seizure activity. We still need to discuss the tests with the hospital.

They have said they will prescribe him Sodium Volporate and reading the potential side effects has absolutely terrified me.

I don't know what to do and have been looking at alternate medicines and diets (CBD oil, Keto diet etc) that hopefully may bring things under control.

Should we listen to doctors about this and go along with the medication ?

I understand this is a difficult question to ask. I'm looking for any advice possible.

I feel so sad anyone who has to live with this condition.

Thanks
Patrick

 

[Porkette]

Hi Patrick,

Welcome to CWE! I'm so sorry that your son has started to have seizures. I was 10 when I started to have seizure (55 now). There is a possibility that the x-box could be triggering the seizures or bright colors this is known as being photosensitive. I had that problem until I had surgery to reduce my seizures. Also if when your son is in the bathroom and if he's showering the hot water can sometimes trigger seizures for some people. I learned that after keeping track of my seizures and my Epileptologist told me hot water can fire up the neurons in the brain and trigger seizures for some people.
To find the correct seizure med for your son ask the Dr. to do a DNA test all they do is draw blood and get some salvia from the inside of his mouth, this is sent to the lab where they can see the amount of enzymes in a persons liver along with their body chemistry and match that up to the best seizure med with the least side effects. They can also tell if a person is drug resistant like I am. This is when I was put on cbd and it has decreased my seizures greatly. I get it in a mouth spray and squirt it in my mouth twice a day. If you are interested check out healthyhempoil.com they have many different types of cbd but before you buy any check with your pharmacist to make sure cbd won't interact with any seizure meds your son is on now. I wish you and your son only the best of luck and May God Bless You and Your Family!

Sue

 

[Nakamova]

Hi Patrick, welcome to CWE!

It's important that seizures can be gotten under control sooner, rather than later. If they are uncontrolled they have a tendency to progress in terms of frequency, duration, or kind. Diets can take awhile to have an effect, and restrictive ones can be hard to follow and maintain. CBD oil -- in a way, a kind of medication -- is often unregulated in terms of dosage and consistency, and at this point lacks the hard data in terms of long-term efficacy and side effects. I'm not ruling those out, just making the argument fpr trying a seizure med first, even if your ultimate goal is to reduce the medication and/or try alternate treatments.

That said, there are many different seizure medications out there. You should ask your son's docs why they are recommending sodium valproate in particular. You should let them know that you are uncomfortable with the side effects. You should push them to suggest other medications and describe the pros and cons of each. And if you opt for a particular medication, you should ask them for detailed information about what side effects to look for. You should also ask about their comfort level with alternative treatments, and whether they would recommend other neurologists who are open to such treatments

Important to keep in mind as you navigate this: Epilepsy is a catch-all term for a very individualized disorder. Not only are there many different causes, but there is also a wide variation in the course it will take in any given individual, and how responsive someone will be to a particular treatment or dose.

I feel so sad anyone who has to live with this condition.

Don't be! Epilepsy is not a death sentence, it's not contagious, and it's not degenerative. It's very common (1 in 100 teenagers has epilepsy), it's not contagious, and the majority of folks respond to medication. And your son has a strong caring team on his side.

I'm not glossing over the negatives, nor downplaying your fears, but it can be helpful to think about epilepsy as you would about asthma or diabetes or a serious allergy. There are many ways to be protective and proactive. I recommend you check out this link: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ for helpful info and tips.

:hugs:

Nakamova

 

[patrickh]

Thanks Porkette and Nakamova much appreciated.

I'm based in the UK so DNA testing (think it's called Pharmacogenomics) for the right medication is still not used. It's all trial and error.
There are some private places that do this but it's so expensive here. I guess once it becomes more common the costs will reduce.

I will discuss this with them about my worries of S Volproate. According to the doctor Usually they start kids off on "low" dosage of SV (500Mg) and increase once in system and no side effects. I believe the common side effect is rapid weight gain. If my son detects he's putting on weight he will stop taking them for sure as he's quite self conscious boy. Another problem will be him rejecting these himself. He doesn't know yet he has to go on medication.

Thanks for all the help. Will keep you posted.

Regards
Patrick

 

[Hobbes]

hi Patrick,

They don’t do a lot of testing for enzyme issues in the US unless one has troubles with a number of drugs. So it’s a lot of experimenting on oneself for the most part. The docs almost always start with a low dose and move up. Some people get control with the low dose and would get ill with a higher dose. So it’s really systematic experimentation for each person, not fun sometimes. Epilepsy meds sound really scary but if the meds are just right or pretty close to good, things are pretty great. And generally a well chosen drug works for a lot of people. Not everyone gets side effects and not all side effects last so I learn about side effects for a few reasons a. is some issue a likely side effect (vs epilepsy getting worse) and b. which side effects are an immediate concern to call in and c. how long to try it before determining if some med isn’t worth the side effect. As a parent of a child with epilepsy (and a congenital condition) I’m primarily interested in avoiding drugs with common cognitive impacts, weight impacts are next.

How much does your son know about his condition? If your docs aren’t including him, he’s old enough to be included. Of course everyone is different, what teen wants to have to work on additional skills (self advocacy, knowledge about his condition, etc..) and hear about lifestyle modifications that could help but he can’t be shielded from this completely, it’s his health.

FWIW our child’s generalized seizures are completely controlled with medication. The partials are not quite but the medication needed to have slightly better control (but nothing fully controlled) is not worth it. The one medication that works enough is slightly problematic, was planning on getting off it until they discovered the generalized seizures when we lowered the dose during a long EEG. Our child’s generalized seizures are considered a genetic epilepsy with a good chance of this will stop in teens (hopefully the partials are part of that). When it was only partials when first diagnosed, the expectation was partials would be lifelong. One can’t always know what’s going to happen. The more they know about the type of epilepsy involved, the better. But even then, there’s a range of how patients do. I hope you give your son room to live his best life. It will take some adjustment but then so many things do.

 

[patrickh]

Many thanks Hobbes much appreciated.

We told him today he will need to take medication after the EEG test showed up as Generalized seizure and there is a possibility he could have another so we need to control. The first thing he said was "what is the side effects" ?

We told him we will all discuss with the Doctor and he can ask any questions directly to the Epilepsy consultant we will see.

We will see Christmas through first before starting him next week.

Thanks again.

Patrick

 

[resaebiunne]

I'm with Nakamova regarding alternative diets. I know that they are common among many people (and not just epileptics), but there is nowhere near the amount of research conducted on how well they will perform. I suggest this as an approach taken alongside medication for good measure, at least at first. If done appropriately, you will find that you will be able to take less medication to get control of the seizures.

It seems that you are most concerned about the side effects of the medications, especially the sodium valproate. Weight gain IS a good concern. I gained around 50 pounds last summer in 5 months from this medicine. As a result of this, and because another medication I was on was not working, I was put on a medication called Topamax. Interestingly, Topamax actually causes one to lose weight, although the topamax has its own side effects.

In the 2 years that I've been going through medications (none of which have controlled my generalized epilepsy), I've been on Keppra, Vimpat, Topamax (on now), sodium valproate (on now), and Lamictal (actually caused me to have more seizures). I also have a mental illness for which I've been on Saphris and Latuda (on now) which are both anti-psychotic medications. Aside from the lamictal, which caused me to have about 15 seizures a day average, the topamax has been the worst side effect wise. I've had brief dizzy spells and brief memory loss issues, both of which seem to be possibly going away.

BTW, when I say I have multiple seizures a day, I mean myoclonic jerks. I haven't had a full blown tonic-clonic since December of last year.

Do your research and get informed, which is what you are doing, but don't let what you are reading scare you away. You have to try out the meds, ideally at a fair dose and for maybe 2-3 months, and see how you react to them for yourself. That is the only way to know what the side effects are going to be. Some meds, there may be no side effects; some meds there may be temporary side effects; others you may have to go off the meds for safety reasons. It's all trial and error.

Good luck and happy holidays!

 

[patrickh]

Thanks resaebiunne

Much appreciated. Will see how it goes with my Son.

Have a great Xmas.

Regards
Patrick