new to this and feeling lost

[Jacky'sMum]

Hi folks, I'm Jacky'sMum. He's 6 and in February was diagnosed with Frontal Lobe Epilepsy. We have no family history of this so it was definitely out of the blue. Jacky's seizures are generally nocturnal, he had a few early on in the daytime due to over tiredness til we worked out what was going on. There has been no luck so far with meds, first up we tried Tegratol. Then Keppra. Now Keppra + Sabril. It has been heartbreaking to see the change in my bright little boy. His fine motor skills are declining, he is anxious, frustrated, tired, destructive. He has an 11 year old sister that is a little resentful. My hubby works overseas for 8 weeks at a time but I am fortunate to have my parents and my husbands parents nearby for support. I know it is early days but I can't help but be impatient.... looking forward to getting loads of info from you all that will help me gain some inner strength

 

[Nakamova]

Hi Jacky'sMum, welcome to CWE!

<<hugs>>

I hope you and your son's doctors can find a treatment that will do the trick soon. There can be some trial and error before finding the right med (a frustrating process, I know), but there are many medications out there.

A few questions:
Is your son seeing a pediatric epileptologist? They have the widest knowledge of meds and other treatments such as diets or VNS.

Has he had any genetic testing? (Not to look for a family history, but see if there's a particular variant of epilepsy that might point to a certain medication, or suggest whether a dietary treatment might be successful.)

Along those lines, has there been any discussion of dietary approaches (such as the ketogenic diet or the Modified Atkins)? It may be worth considering if the meds are problematic.

You are doing all the right things by asking questions and looking for support. Whatever treatment path is being considered, your knowledge and your active participation in the decision-making process will make a huge difference. Make sure to take care of yourself too during all of this.

 

[Bernard]

Hi JM, welcome to CWE. :hello:

Sorry to hear that your boy has started this rollercoaster.

"anxious, frustrated, tired, destructive"

Just fyi, but Keppra is known to exacerbate those symptoms. It's possible that a little bit of vitamin B6 could lessen the side effects of Keppra.

 

[Porkette]

Hi Jacky'sMum,

Welcome to CWE! I'm sorry to hear you son is having seizures. I started having them when I was 10 (55 now). Keppra gave me a hot temper and I couldn't stay on the drug so I went on vimpat and that did wonders for me. To find the correct seizure med ask the Dr. to do a DNA test all they do is take some blood and get some salvia from his mouth, this will show the amount of enzymes in a persons liver along with their body chemistry and the Dr. can match all that up to the best seizure med for him with the least side effect this can also show if a person is drug resistant like me. l had this test done after trying over 10 different meds then my Dr. put me on the medical marijuana and that did wonders for me I am amazed at how that reduced my seizures.
Be sure to keep track of all his seizures get a calendar and write down what time the seizure happened and the type of seizure by doing this the Dr. may be able to see a pattern in his seizures which will be helpful to them in regards to giving him meds.
Also keep him about from aspartame (nutra sweet) that has been known to cause more electrical activity in the brain and in turn it bothers some people and triggers seizures for them. This happened to me when I was drinking diet soda. Here's wishing you and your family the best of luck and May God Bless All of You!

Sue

 

[Jacky'sMum]

Thanks Porkette, we have an appointment with Jacky's neurologist tomorrow and DNA testing is top of the questions! OH and bye bye Pepsi Max

 

[Fedup]

Epilepsy is a roller coaster of a life for anybody but I can only imagine the roller coaster you are on. I have no idea what you are feeling but I can imagine it, the fear and uncertainty alone must be overwhelming but take hearth, there is always chance things will work out ok with medication. His motor skills are still ok, its probably the medication. It takes a bit of twerking with medication to get things right but once you get it right things become better. It sounds like the medication " he is anxious, frustrated, tired, destructive", as Bernard said there is keppra rage, its something to think about.

There are a few here including myself who have grown up with this, believe it or not some of us drive and work, even get married so its not the end of the world yet. Its good you got support when your husband goes to work, it would take a lot out of you dealing with this. You will get through this just keep asking the questions and we will try to help you.

 

[valeriedl]

I was diagnosed with epilepsy when I was 27, I'm 42 now. The drs have no idea what could have caused it and there's no history of epilepsy in my family.

It took a good while to figure out what meds for me to be on because of the side effects or that they just didn't work. I got a VNS too. My seizures are under control now. I'm still having but on average 5 a month instead of 20.

Lack of sleep can be a seizure trigger so try to make sure he gets enough. Caffeine is another so avoid that. Stress can be another. I know you can't avoid stress just try to help him with things that are going on and make him feel better about things as best as you can.

Keppra can make you very angry very easy just over the littlest thing which could be stressful. This could be why he's being destructive.

My memory doesn't work nearly as good as it used to before I was diagnosed with epilepsy and this can be stressful. It was horrible at first, I might have forgotten things that just happened few hours ago! Now I might forget things that happened days to years ago. People will tell me about something that happened but I just don't remember doing it, it's almost as if they are telling me a story. I'll have trouble doing things, even the simplest things, at times just because I've forgotten how to do it. This is really stressful for me at times. If you tell him about something that happened don't try to push it on him and try to make him remember it, just let it go. If he's having problems doing something that he would normally know how to do don't insist that he know's how to do it. Just teach it to him as again if it were the first time he's ever done it.

This web sit has helped me a ton, I hope it does you too!