New here, parent of child with epilepsy

[dragonlady1978]

Hello everyone, found this place searching for information and been lurking for a bit. Not really sure how to jump in so I'll just get to it and spill-I really need a place to do that so please bear with me

My name is Laura, and I live in Louisiana (US) with my husband and 3 children. I also have a stepdaughter who is 20 and no longer lives with us.

My youngest son Hunter is 5, we found out when he was about a year old that he had epilepsy. It started with a few febrile seizures and we were told it was nothing and not related to epilepsy even though there was a family history. A few weeks after those he started having seizures regularly.

EEG showed seizure activity in the right occipital part of his brain. They presented as periods of a few minutes at most of staring off or eyes rolling back, he would make clicking sounds with his mouth, be unresponsive/unaware of surroundings, and tic type pinching movements with his hands, sometimes he would vomit. Most of his seizures happened at night, he'd sit up or get out of bed right before it happened. After those and also any during the day he always fell asleep afterwards, seemed to take alot out of him.

I hated the idea of him being on any of the meds, such horrible side effects, but less scary than the seizures. We finally ended up settling on Trileptal, it seemed to be the best combination of effectiveness with the least bad effects for him. Adjusted dose over the next few years when he'd begin to have large numbers of seizures again. We tried changing to Lamictal at one point as he got to the high end of his safe level of Trileptal, but it just wasn't for him....he never got over the constant hand tremors and dizziness, total lack of coordination, and he had grand mals while on it. Something about how he metabolized it made the effects worse than the reason for taking it.

When he was 4, the activity changed. He began having periods where he behaved strangely several minutes before onset, he'd hallucinate sounds/smells, say strange things or slur words, more daytime seizures. His whole body gets very rigid, sometimes his lips turn blue and he stops breathing.

Most recent EEG showed activity now in both right occipital and right temporal lobe sections of his brain. Neurologist said in temporal lobe it is constant and aggressive, even when he is not exhibiting anything outwardly. Right now he is on both Trileptal and Keppra (with Dystatin for breakthroughs that are severe or cluster), since adding the Keppra he is having the least amount of seizures ever, and for that I am thankful.

However the Keppra has a very significant effect on his moods and emotions. It's almost like he's bipolar. He gets very angry or depressed out of nowhere and is inconsolable, and it disappears as fast as it comes on. He's been having bouts where he says very bad things or threatens to run away or kill himself and it is heartbreaking. It makes me feel horrible that it is by my choice and direction that he takes something that makes him feel this way, yet on the other hand I feel I have no choice as the alternative is to risk him having a fatal seizure.

I've read everything I can and found some promising info about B-6 helping with Keppra side effects, but if it has been helping the improvement is minimal at best. I'm planning on experimenting with upping the B-6 dosage soon, since the Keppra has worked so well I am loathe to try guinea pigging him on other anticonvulsants again.

Right now I'm just hanging on and trying not to pull my hair out. He has developmental delay, and while I'm terrified of him starting school I'm currently in the process of having him evaluated by the school district for IEP. I have no family close and could never bring myself to even attempt putting him in any daycare, but next year he reaches the age mandatory for school attendance.... while finances dictate I need to go back to work I'm on the fence about whether to homeschool until I see how the pupil appraisal goes and how they intend to deal with him.

I've ranted enough, off to read some more posts

 

[epileric]

Welcome DragonLady

I know I've had seizures all my life & they've changed so often, in patterns, intensity & even what kind many times.

I've also been on Keppra & it sounds like your son got some of the side-effects I had except I was just so out of it I was like a zombie. It was almost nice to be angry because I could remember what I was talking about. As far as the vitamine B6 goes, try looking for either a liquid or sublingual form. More of it will be absorbed and faster that way.

I guess if you've been lurking for a while you know about the nursery. Lots of parents there who I'm sure can relate very well to what you're going through.

Make yourself at home.

 

[Rae1889]

Have you talked to your sons neurologist about putting him on a special diet and using neurofeedback. There are a lot of parents on here that are controlling their child's epilepsy using diet, nutrition, vitamins and neurofeedback. Dutchmom and RobinN come to mind.

 

[RobinN]

Lots of information, though buried deep is information and anecdotal evidence that making nutritional changes can reduce or eliminate seizure activity.

My daughter case is most likely very different, though she seems to have a reactive sensitivity to foods that trigger a blood sugar imbalance. Making different food choices has allowed her to be seizure free for 7 months, and med free for 2.5 yrs . We also supplement daily and will continue this for about another 1.5 yrs as long as she remains seizure free. Then the nutritionist wants us to begin adding in more of the foods to replace the vitamins and minerals. Yet I doubt she would eat that much fish, or be able to get that much magnesium from her current food choices. Vitamin D is also a big one for us.

 

[Dutch mom]

Welcome to another mom,

My special needs son started out with seizures at age 1,5 Nocturnal myclonics + complex partials at first, absence seizuers during the day. Valporate, Topamax, Ethymal and added on clobazam didn't help. Next was Lamictal on which his seizures became worse, just like what happened to your son, he started to have tonic stiff cramps and grand mal tonic-clonics on Lamictal. Unfortunally, those didn't go away after weaning off Lamictal. At age 5 Lennox Gastaut syndrome was diagnosed. Keppra, Luminal and Felbatol where next but didn't help either and some of the side effects seemed worse than the many seizures. That's when we started the ketogenic diet. This is the only treatment that helped my son to reduce his seizures. He's on the keto diet for 6,5 years now, AED-free since 5,5 years. His seizures reduced with 80% an his EEG improved >70%

Was the keto diet ever mentioned as a possibility for your boy? The older a child is, the more difficult this diet is, so it is an opportunity worth to try at a young age better than saving it as a last possibility.

 

[dragonlady1978]

Thank you all so much for the welcomes and information

Our neurologist has not suggested any diet changes at all and she poo-poo'ed the B-6 idea when I brought it up. I'm doing it anyway, grasping at straws. I will definitely get some sublingual, he dislikes swallowing pills anyway.

I have read about people having success with ketogenic diets, but I have not tried it yet myself. He has very strong aversions to different food textures, and he HATES meat pretty much on the whole so I need to do some more research.

It does give me hope to know that quite alot of people are able to go off meds with diet changes, I have tried to learn as much as I can on my own about it but the science is somewhat beyond my understanding. I hear that word and associate it with the Atkins diet I did a few years back.

I wish that we had a more supportive neuro, a good doc is hard to come by.

We live near Baton Rouge, Louisiana-there are only 3 pediatric neurologists in the area. One isn't taking new patients, one I tried and disliked her push to more and stronger meds-I'm already on my last choice.

There is a neuro department at the Children's hospital in New Orleans and I would be more than happy to make the drive, but they specialize in surgery as treatment and that idea has stopped me cold. I know it's an option many are thankful for, but I just can't bring myself to even consider it at this point. I know there's a chance we might do better, butI have been afraid to drop my last local line only to have the new doctor want an even more aggressive treatment that the terrible meds we already deal with.

I'll be doing some more reading and see if I can't come to a better understanding and ideas about how to implement some form of diet changes that will help. I'd be interested to find out to what degree success in seizure control can be had with, for lack of a better word-partial following of the diet? It would take a good long while of gradual changes to get him willing to regularly eat what I'm thinking is going to be very different than what we manage to get into him now. If it will make the difference of being seizure free, I'd figure out a way to make it happen.

 

[Fezzak]

My son has been on the ketogenic diet since October of last year. It is difficult to craft meals, and there's definitely a lot of work involved on your end in monitoring and staying on top of what your son eats. Also, there are a few key elements in successfully implementing the diet. If you would like more information, please let me know. I'm new to the forum and am trying to get our success story out there. I'll probably start a new thread when I have time to sit down and write it all out and link back to that. For now -- feel free to send me a PM if you would like more information.

Also, the best thing you can do for your interaction with the neurologist is empower yourself by researching as much as you can. Acupuncture, for instance, has been used around the world to treat epilepsy. The efficacy of any given treatment depends on the individual case, so it's impossible to give a guarantee that "X" treatment will stop seizures. Looking at the potential risks of a treatment and comparing that with the efficacy in studies ended up being the way we convinced our neurologists to let us try the ketogenic diet. I know, convincing a doctor to allow you to use a therapy that has been around for thousands of years...

There are trials of the ketogenic diet, and its success when used as the only treatment is very high. One of the most notable trials was performed at the John's Hopkins Epilepsy Center.

Carnitine seems to be the missing link in the diet and is surprisingly not mentioned in many discussions about the diet. Carnitine helps the body digest and assimilate the fat, which makes producing ketones require less fat. I would suggest trying to find a dietitian who specializes in neurology patients as their knowledge is directly applicable to the way diet affects brain function. That may be a good place to start, if you're interested in dietary therapy.

 

[GalaxyGirl]

Hi there,
I can't comment on your sons medical condition with any authority but thought I should chime in as the parent of a special needs son as well. My son has autism/ADHD/juvenile bipolar and I have run through at least 9 years of what you have to look forward to in special education. As for your concerns about him going to school, my best advice is this - Thoroughly check out their special education department, ask to see the classroom he will be attending and meet with the teacher/look online for anything good or bad about the school districts program or your states program (each state is different). Some school districts have great special education departments and some or HORRIFIC. Find out of the school uses "time out rooms" and what they consist of. All schools are "allowed" to use them but some do so punitively and ridiculously. Time out rooms/area can range from calming pillowed areas with books and toys for winding down to 4x6 concrete cells with locking steel doors in the basement ( I am not kidding as this happened to my son). Ask what their policy is on elopement. If your child has tendency or might develop a tendency to wander off, you need to know how they will handle it. Will they keep the classroom doors latched? Will they simply redirect him if does get out? Or will they call the police and have him escorted home for leaving class (also has happened to my son at age 7)? Are they medically trained to deal with seizures? Does the school actually have a school nurse who is an RN? Most schools here dont have more than a first aid box. Do you have any charter schools you turn to as an alternative? Private schools with grants? You may also want to look into Easter Seals as they provide afterschool care to children with disabilities. Have you signed him up for SSI? I didn't do so until my child was a preteen but it is a great help and guarantees free medical insurance as well.

Well, I better get some sleep but I hope all goes wonderfully for you and your son.

Best wishes,
GG

 

[dragonlady1978]

Thanks GalaxyGirl, you've given me alot to inquire about-we go January 12th to his pupil appraisal and I'm writing down your questions to ask myself. I can't believe what you have gone through with your school system, that is seriously disturbing. I'm not holding my breath to have anything wonderful here, Louisiana is not exactly known for its superb schools.

I did apply for SSI. We meet the criteria for the disability and income, etc., but we were turned down due to the resource requirements.

My husband's father donated his home to him several years ago in a well meaning gesture, to ensure that he got it when he passes away (even though he is currently healthy as a horse). There is property that was owned by his grandfather that has been in probate for years between cousins and he hoped to avoid anything like that. It's only worth about 25k and it may be 20 years down the road we can do anything with it-if ever-but it puts us far above what is allowed for "resources". I tried asking if we could put it in writing that we can't sell it until he passes or something to that effect, and was told flat-out that if we were truly in dire straits and needed the assitance of SSI that we own the property and should therefore sell it or rent it out (nevermind it leaves the father who meant well homeless)...and then we wouldn't need SSI for a long while anyway because we'd have the proceeds from the sale of said resource. I hadn't even considered that stupid little piece of paper or I wouldn't have bothered applying. It sounds ungrateful to look a gift horse in the mouth, but I really wish he'd have just kept it.

 

[RobinN]

I would consider nutritional changes and not "diets". It is my opinion that each individual needs certain nutritients and not a "one size fits all diet". It also might be worth eliminating additives and possibly food sources that cause inflammation.

 

[Dragongiraffe]

Hello dragonlady,
as our names are a little connected, I wanted to say "hello" too. I know I am late, but hope we get to know each other a little more in time.