If you don't treat epilepsy...

[Starburst]

I am still really new to the world of epilepsy so please excuse any ignorance I display. As I have mentioned elsewhere, I have a 10-month-old son who has been having seizures since he was a few days old. His seizures only take place when he is asleep. Otherwise, he is perfectly normal while awake. He wakes up right after having a seizure and immediately starts playing and generally does not appear to be disoriented or confused. His development is also normal. This has led me to wonder if he really needs to be treated with medication (he is currently on phenobarbital). Although he is taking medication, his seizures are not fully controlled. The doctor has been pretty admant that we should get the seizures under control so that my son is not affected down the road. This almost certainly means more medication and perhaps introducing different types of medication as well. I feel hesitant as I hate the thought of taking a perfectly normal functioning child and medicating him to the point where he will start to experience side-effects, especially any long-term side-effects that affect his ability to learn.

On the flip side, I have a 17-year-old son who has probably had epilepsy for years but was not diagnosed until recently. The doctor believes this could have been the cause of his OCD, which suddenly became apparent to us earlier this year. The OCD has been devastating to my son and to our family, and I only wish I had known about the epilepsy earlier so we could have treated him and possibly averted the crisis he is currently in.

I know I am rambling away here, but I am just wondering if it is ever appropriate to NOT treat epilepsy with medication? How would you know or make such a decision? Besides OCD, what are some possible consequences of not treating epilepsy? Although I have made the decision to continue treating my infant, I feel like I need more information to help me feel that I am making the right choice for him.

Sorry if this is confusing, but perhaps it will help others who are faced with similar decisions.

 

[MonkeyBoy]

I am new to this as well as I try to learn as much as possible to help a male relative that experienced several Grand Mal Seizures earlier this year. I think that your question boils down to an individual decision based on known facts, feelings, and desires. As for my relative? he said from the very beginning NO Prescription Medicines and we aggressively sought natural means to bring resolution. It is a work in progress but for 3 months it is working and he is looks and feels great and is as active as before the seizures. You can read my posts on his journey to get an idea of how extreme it has been. He like me has questions of why do people immediately turn to prescription medicines for this without fully understanding all the facts? We understand that when this unexpected "thing" occurs it is scary and stressful. It makes people turn to the doctor for immediate relief but the doctors are not always well trained and are operating from a position of little experience and/or having to follow a set of rules and procedures given to them from the hospital / big pharma. My thought to you is to keep plowing into it and sift through the mountains of data while separating that which makes sense to you and removing the garbage that does not. Do not be a follower but a leader.... best wishes for your children and for you.

 

[PFunk]

Hi um-adam

I think what most people will tell you on this site is; no matter the means, it is most important to get the seizures under control. With each seizure someone has, it is easier to have the next. Here’s a good metaphor. Think of epilepsy as erosion along a flooded river bank. Each seizure (flood) erodes the bank a little more. Over time, floods of smaller and smaller sizes fill that eroded channel. Our brains are much the same. The more and more neurons miss fire down a particular pathway, the easier and easier it is to happen again. That’s why epilepsy is a progressive condition

I hope the best for you and your family as you seek answers and search for seizure control!!

 

[Silat]

The two most severe ramifications of not controlling seizures are these:
http://en.wikipedia.org/wiki/Status_epilepticus
http://en.wikipedia.org/wiki/SUDEP

That doesn't mean they can't be controlled by other means, in some people they can be. In others, anti-convulsants are the only approach that works. Figuring out whether they can be controlled by alternative methods is something you'll have to work closely with the doctors to find out.

That said, if they say take the meds, since they're children, give them the meds... When they're adults, they can make the decisions for themselves but as children the primary goal should be to keep the seizures under control so that your children are safe. If that means medication... that means medication. :?

 

[julie wishes]

What an incredibly hard situation. You have some really good answers here. I say knowledge is power. Research everything you can. Maybe try the American academy of pediatrics for their recommendations, but garranteed its going to be medicate. From my reading and research (all of one month) it seems there are many faces of seizures and epilepsy. Many choices. Many meds. Many diet strategies. Many supplements to try. It seems a daunting task to get through it all... BUT so worth the effort. So again, knowledge is power. Learn all you can and make a very informed decision. Being that your son is a minor, he's counting on you. And I would suggest separating the two boys situations. Don't compare the two since you really don't know if they are the same or not.

I can only imagine how hard it must be to feel so responsible for these heavy decisions when it comes to your children. Im glad you are reaching out and trying to figure this out. What a great Daddy!

 

[stilldancing_98]

There is a book called epilepsy in Children 3rd Edition. It talks about different seizure types and the medications for them. then you can look them up on line and then if you have a trusted pharmacist talk to them about the medication. I have nocturnal and day time seizures and so does my 14 year old who has had epilepsy since birth.Get a team that can help treat him. That can help answer all your questions as you grow.I think coming here where you can find support is a good start. PM me if you have any questions.