n/m

[Love]

n/m 

Edited November 19, 2015 by Love

[Ottakee]

It is tough with teens.  Our neurologist has a dietician on staff and we have discussed the Ketogenic diet....or a modified version of it.  That is where your high fats and very low carbs comes in.  They did admit that while it was very helpful for some kids, it was very very difficult to start with an older child/teen as it is so hard to follow long term.

 

My girls are both on meds with few to no side effects so we are staying with this.  We do try to give them healthy fats---omega 3s, coconut oil, real butter, etc.

[MeAndTheBoys]

edited--  too much detail in my reply :)  All that to say, my 10 year old was dx with epilepsy last February.  I wish I knew what set him off--more power to you for finding some foods that trigger! but it does sound very restrictive.  I don't know that it would be healthy to cut out ALL of those things.  And if the meds are working, maybe come up with a more generally healthy eating plan.  I hate, hate, hate having DS on meds.  But the doctor scared me enough with talking about brain damage from the weird activity he has and brain damage from seizures, as well as potential for injury when falling down with a grand mal.

 

I hate this disease.  I hope he outgrows it, as a lot of 10-14 year olds do.  Hope your baby does too--  It's just an invisible monster right now, hiding---but still there.

 

B

[Love]

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Edited November 19, 2015 by Love

[MeAndTheBoys]

Sorry I deleted all that detail--it was TOO MUCH for anyone to read, but you did respond.  Okay, I get your story now--I was confused before :)  You have a different situation for sure--we saw "weird stuff".  Don't know why it showed up weird on a EEG, but at least we saw something.

 

Seizures are very mysterious and I don't like them.  I'm sure I already said that :)

 

B---

 

I will post more later, but just wanted to say she did have EEGs, MRIs, and a CAT scan. Nothing was very conclusive on why she was having seizures.

She had seen two neurologists over the years for this and migraines, but we mainly just see her regular doctor and he's been great.

 

[Love]

 

 

.  

Edited November 19, 2015 by Love

[Katy]

Personally I would lead her towards making the decision that she wants to follow the diet, but I would make sure it was ultimately her decision.  No epilepsy here, but I do have severe chronic cluster headaches, which respond more to antiseizure meds than to migraine meds, so I've experimented with a ketogenic diet too.

 

First I'd decide it would be up to her until after Christmas because this is a major life change.  It's not that she couldn't still have treats, it's just that you'll need to experiment with lowest carb versions (mainly coconut flour baked goods,  seaweed noodles, etc), and possibly watch calorie intake too.  The major change in a keto diet for our family has been the amount of cooking.  It's actually more of an inconvenience than anything else.  You can always get beef patties and salad at Wendy's, but you can't fake a homemade dressing made with avocado or fractionated coconut oil.

 

DD is 13.  I'd read & watch everything I could from the Charlie Foundation and buy some books about ketogenic diets (Anything by Terry Wahls, Keto Clarity, and anything else that seemed appealing to either of you).  I'd go through them together (maybe even take turns reading them aloud to each other so you can pause to discuss anything you find interesting).

 

Learn all you can and then talk about it.  These decisions will have long term ramifications for her, so I would lead with the concern that by not following the diet she might be putting herself in danger in all sorts of ways.   And then I would ask her to make a decision, with the proviso that if she decided to try the diet, your whole family should keep the foods she finds especially tempting out of the house for a while, you should more or less try to follow the same diet for the whole family (adding in fruits, veggies, and natural, non-tempting starches like sweet potatoes and squash for the rest of the family as desired), and if she tries the diet she should stick to it without cheating for a certain period of time (I'd go with three months, though six might give her a better idea of if she can stick to this long term or not). 

 

You should also make sure she's getting a REALLY good quality multivitamin, because B-vitamin deficiencies are thought to be one of the reasons people have trouble sticking to a low carb diet for long stretches of time.  I use Thorne Research's Basic Prenatal vitamins, which I get from Amazon (and think it's a good idea to switch daughters to a prenatal at puberty).

 

Oh, one more thing- watch out for artificial sweeteners.  Apparently stevia can have birth control effects on some people.  My cycle got completely unpredictable when I was consuming too much stevia, and there are a lot of anecdotal stories out there of the same.  Others have starches built in that can affect blood sugar too.

[LostSurprise]

I want to start by saying I have a son with severe epilepsy who has been on the Ketogenic Diet for 7 years. 

 

I would love to try the ketogenic diet.  It seems like DD isn't 'bad enough' for anyone to want to take her on.  I wish parents were given more of an option.  Then again, after the diet issues this past month, it would be amazing it a little tiny pill could fix everything without side effects.  

 

My dh told me recently they they are working on a pill option for Ketogenic Diet. They've isolated some of the chemicals from the KD that affect seizures and are trying to come up with a pill form. Not a short term answer...but maybe some day down the road. 

 

Secondly, you don't have to go full Keto to experience positive impact. Some people don't need the complete restrictions of the Ketogenic Diet. You can do a modified Atkins (google modified atkins for epilepsy to see some examples) without medical intervention. Basically that means she can eat all the meat, fat, nuts, vegetables she wants but that she is counting carbs and keeping it under a certain number (60 is common but google around because this is a little fuzzy for me. We did modified Atkins when coming off the KD once but the carbs were much more restrictive than is normally used). She can have what she wants but in a much smaller number. If you try this be more careful about carbs before bed time and educate yourselves about carb load...basically some carbs have much more intensity because they digest quickly. 

 

Any medical diet is restrictive. There are teens with gluten allergies, adults on paleo, vegetarians, vegans, folks who restrict for religious reasons. Don't worry too much about missing out. We're all different. We all miss out on something. However, it is important, as a teen, that she has input into her diet. Make her a part of the grand experiment. 

 

edited--  too much detail in my reply :)  All that to say, my 10 year old was dx with epilepsy last February.  I wish I knew what set him off--more power to you for finding some foods that trigger! but it does sound very restrictive.  I don't know that it would be healthy to cut out ALL of those things.  And if the meds are working, maybe come up with a more generally healthy eating plan. 

 

At least one study shows that the Ketogenic Diet has no long term health implications. It does need to be overseen by a doctor though, and vitamin supplements (multi, calcium) are common. 

 

 

 

People have seizures. All of us can. It's one way our brain handles stress. Some people are a little more susceptible than others. It's not unusual for a teen who is susceptible to have a problem when the hormonal surges of puberty hit. Most often those seizures are easily controlled with medication and many people "out-grow" them by adulthood when their system is stable again. I hope this is the case for your daughter. 

[Whereneverever]

What medication are you trying first? I second the modified Adkins suggestion. My seven year old has intractable epilepsy. The sooner you get seizures controlled, the better likelihood you have of long term control. That's hard to grasp as a young teen. 

 

And if you feel like your neurologist isn't taking this seriously, get a new one. Are you going to one of the big clinics? I'm sure we'd all help you brainstorm. 

 

This is tough, tough, tough. 

[Doodlebug]

My DH developed seizures in his early 20s.

 

He has temporal lobe epilepsy, which causes large seizures when non medicated, and smaller complex partial seizures when medicated. For us, medication is 80 percent of the answer -- it keeps those massive seizures at bay.

 

But recording those smaller breakthrough seizures on our calendar showed a tendency toward Saturday seizures. Looking at our routine, I asked him to limit his coffee to one cup/day. It has made a tremendous difference in seizure frequency.

 

So, for us, both diet and medication have proven incredibly helpful.

 

Definitely record your DDs seizures on a calendar and keep a journal of diet (there are apps for that). For a long time, we asked our neuro, "Could ____ cause a seizure," and we were told "probably not." But it really is an individual thing. Finding out triggers that are unique to your DD is a very important part of eliminating seizures! Hormones can trigger, so definitely see if seizures are lining up in a specific week of her cycle.

[Love]

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Edited November 19, 2015 by Love

[Whereneverever]

One of my DDs docs explained it like this- pretend the seizure goes down a path in the brain. The more you walk down a certain path, the deeper and more pronounced the path. You want to keep the electrical energy in your brain from firing in that abnormal way.

 

The longer you go seizure free the better. I don't think I would try to induce seizures if you know something like food does it for her, but I'm not a clinician. 

[Katy]

If gluten is a trigger, gluten is a trigger.   I can tell you for sure that anything I'm allergic to is a trigger for cluster headaches, even though technically "foods don't trigger CH."  My neurologist said it had to do with the levels of inflammation in the body, and that even mild allergies make inflammation worse.

 

I would go to Hopkins and see a pediatric neurologist, for the sole reason that they are likely to be up on the most current research and understand dietary therapy.  They may be able to do follow up appointments by coordinating with your current doctor, so you don't have to go into Hopkins as often.

[LostSurprise]

You really should see a neurologist, even if your pediatrician is excellent a neurologist will be more familiar with all the options. When my son had his first seizure we were immediately referred...by his ped...to a neurologist. They have so much more experience with this kind of thing, especially if the first medication doesn't work well with your child. 

[JFSinIL]

If gluten is a trigger, gluten is a trigger.   I can tell you for sure that anything I'm allergic to is a trigger for cluster headaches, even though technically "foods don't trigger CH."  My neurologist said it had to do with the levels of inflammation in the body, and that even mild allergies make inflammation worse.

 

I would go to Hopkins and see a pediatric neurologist, for the sole reason that they are likely to be up on the most current research and understand dietary therapy.  They may be able to do follow up appointments by coordinating with your current doctor, so you don't have to go into Hopkins as often.

 

Yes, go to Hopkins.  My kid's neuro got his degree from Hopkins, they are very up on the ketogenic diet there, and probably also up on dietary triggers for seizures (I assume), so they may well be able to help you sort out what dietary triggers she may have while using meds to control the activity, too.

[Whereneverever]

What kind of seizures is she having? I'm a little surprised at Tegretol as a first line choice. I'm gonna really ditto the suggestions to please go to Hopkins and see a peds neuro. 

[Mergath]

Thank you everybody.  Right now she is on Tegretol (generic version).

 

My DH just got off the phone with the Danny Did Foundation, and they are helping us get a Sami Monitor for DD to use at night, which is wonderful.  Right now she is wearing a bell bracelet to bed, and we are using a baby monitor.  So knowing the Sami is coming is wonderful.  We also got her the Sleep Safe anti-suffocation pillow and that really added to our peace of mind.  

 

We aren't seeing a neurologist at all right now.  Her doctor wanted to put her on the meds for a month and do a blood test before sending her back to one.  I'm happy with that.  He is really good doctor, and he respects what the parents want (although he can't do the keto diet).  I usually have researched a lot before we go in, and he always suggests what I was already thinking.

 

On one hand, I would love to take her to John Hopkins (it's not far)- but really, our doctor is already doing what's standard, so I'm not sure if any other specialists would/could do anything differently.  She has already had a ton of tests and nothing very conclusive came of it.  It started years ago when she for migraines, but then she migraines stopped a long time ago, and now this has started.  

 

I have had the same thing with doctors telling me that a certain food can't really cause seizures.  They should follow my DD around for a week!  The gluten thing for her is almost instantaneous.  That's why I was just thinking- should I put her on gluten now that she's on the pill?  Because if the whole point of her being on the pills is to "train" her brain not to have seizures, then I really think the pills should also be training her brain not to have seizures when she eats gluten!  And they can't do that is she's not on gluten.  But somehow I don't think I'm thinking of it right. Does that even make sense?  

 

I just feel bad telling her she needs to take the pills and should stay on some form of a diet, but if that's what it takes, then- she will understand and be okay.  

 

Did your doctor explain that the pills might not work?  You have to wait to see if they'll even have an effect.  You can't just assume the pills are a magic bullet and now that she's on them, she won't have any more seizures.  I have temporal lobe photosensitive epilepsy, which began when I was in eighth grade, and I was on almost every epilepsy medication out there.  None of them helped at all.  I finally found a med I can take before a seizure that can help prevent them, but that's the only treatment I have.

 

The best thing she can do is to find a medication that works and stay on it, and avoid all triggers besides.  Even if a med works, it may not stop 100% of the seizures.  

 

This isn't the kind of thing where you can fiddle with it yourself and check in with the family doc every few months.  You need to find a neurologist and work with him/her to find the best treatment with the fewest side effects. 

[Love]

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Edited November 19, 2015 by Love

[Ali in OR]

My 17 yo dd has had life-long intractable seizures. While my keto diet info is a little old, she was on the diet from age 3-6. My informal knowledge through contact with other parents tells me that there may be some possibility of achieving keto diet advantages without doing full-blown keto. I have a friend whose young daughter has found some success in using a very low carb diet. A full keto diet is medically supervised and at least 10 years ago the philosophy was that you are not on it forever because of possible long-term health issues. Dd had somewhat regular bloodwork--I know for instance that her triglycerides were high while on the diet. The diet allowed us to reduce her seizure meds but we were never able to get fully off them. We have never had full control of seizures with either diet or meds. She's been on meds-only for the last 11 years and it's okay. If you can be seizure free with some reasonable dietary changes, wonderful, but I wouldn't hesitate to use seizure meds if that was what was needed. And if using meds, I would probably just follow a regular diet.

 

Be aware that a true keto diet is almost no carbs. And it's not gluten that is the enemy, it's carbs. For some reason the body is less likely to have seizures if it is burning fat for energy instead of carbs and is thus in a ketotic state. My daughter's meal numbers were derived to provide enough protein for cell growth, almost no carbs, and the bulk of her calories from pure fat. I just pulled out her old binder and her numbers for each meal were 3.7 gm carbs, 5 gm protein, and 31 gm fat. Carbs from any source counted, so while most meals involved a relatively large amount of whipping cream for the fat, we had to count the carbs in the cream as part of her 3.7 gm for the meal. Her scrambled egg meal was 74 gm cream, 23 gm eggs, 3 gm butter, and 2 gm cheerios (I think that was like 8 O's). Everything had to be calculated and weighed. We had to switch toothpaste to one with no carbs because that small amount might be enough to lose the ketotic state and have a seizure. She was chronically constipated due to virtually no fiber, so she had to take a laxative with no carbs (milk of magnesia). We had to supplement for vitamins and calcium. She was a toddler/small child and we had total control over her diet--it gets a lot harder when kids are older.

 

Having lived with keto diet and with meds, I lean toward meds for seizure control. If there are serious side effects from meds or seizures still can't be controlled, I might start looking at diet. Diet changes become more attractive if you can find some success doing something less severe than full-blown keto, like my friend whose 4th grader is totally gung-ho on eating low-carb.

 

I definitely agree that you need to be looking at these possibilities with a peds neuro--they are the ones with the real hands-on experience of all kinds of seizure issues. Find out what's going on now in the area of diet research. Find out what options there are for meds (my dd was on tegretol as a baby and it really messed with her--we were thrilled to get her off of that and on to others she tolerated better). Oh, and triggers--sometimes you can identify them, sometimes you never know why she is having seizure issues. Obvious here--sleep deprivation pretty consistently brings on seizures, and losing sleep due to waking early is worse than losing sleep due to staying up late. That's why they prep you to sleep-deprive your child before an EEG by waking them up at 3:00 am. Coming down with an illness is a trigger--first sign of illness is often a seizure here. Then I start getting wild theories about more seizures around the equinoxes, or a sudden temperature change like going out of the house in 20 degree weather. I think our problem-solving brains are always looking for the "why?", and more often than not we just don't know.

 

Hope you'll find the keys for good control for your dd.

[Mergath]

Have you researched vagus nerve stimulators yet? They're successful for a lot of people.

[Ottakee]

My daughter was on Tegretol for a while.

 

A few thoughts:

 

We did name brand Tegretol.  If you use the generic, make SURE the pharmacy doesn't change suppliers on you so that you get generic Tegretol from company x this month and company Y next month.  Seizure meds are very touchy and just changing from one generic to a different one can be enough to bring on seizures.  I have one dd that MUST have name brand seizure meds and can not tolerate the generics while the other dd does OK on the generics.

 

Did they tell you to do the blood test 12 hours AFTER her last dose of meds and BEFORE the next dose (assuming she is taking it twice a day).  This makes timing very important for the trip to the lab.  If they are super busy and you tend to have to wait 1/2 hour, try to go get registered at 11 1/2 hours.  Doing it this way helps show the blood level the same each time.

 

You mention migraines,  We have a daughter that take Lamictal for both seizures and migraines and it works well.

[Doodlebug]

I third, fourth, and fifth the suggestions to look into Hopkins.  You're right, local doctors are doing all the standard stuff... but neuro medical research is constantly on the edge of discovery.  

 

We spent 3 fruitless years working with local neurologists who knew their stuff, but their answer was always more medication (which is standard)... to the point that DH couldn't think. 

 

We headed to the NIH.  DH was with them for 3 years, participating in a clinical trial and was eventually referred for neuro surgery.  

It's amazing what lengths doctors will go to when the facility, technology, and budget all support them finding an answer to your problem.  Temporal lobechtomy offers one of the most succesful outcomes for irretractable temporal lobe epilepsy -- but no one was telling us that locally.     

 

[speedmom4]

I agree with what so many others have said. Your dd needs a neurologist. For example, our neuro will not allow my ds to be on generic meds. The manufacturers can change and although most of the ingredients stay the same there can be differences and differences aren't good for epilepsy. My son also has a Vagus Nerve Stimulator, which has helped, but hasn't cured ds's epilepsy. 

 

Has your dd had an EEG or an MRI? Those would be very standard tests. An MRI will rule out any potential reasons why your dd has started having seizures. An EEG will likely show how often your dd is actually seizing. It will also show if there is seizure activity in the brain that isn't manifesting itself physically. 

 

I am not trying to scare you but people die of epilepsy every year. A pediatrician is not capable of handling a complex neurological condition such as epilepsy. 

 

God Bless,

Elise in NC

[Love]

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Edited November 19, 2015 by Love

[Mergath]

What exactly scares you about the vagus nerve stimulators?

[Love]

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Edited November 19, 2015 by Love

[Mergath]

I don't think they actually cut into the head to do it.  The vagus nerve can be accessed via the neck, and that's how the people I know have had it done.

[Whereneverever]

Yeah, VNS placement isn't brain surgery like a lobectomy or resection would be. My seven year old is supposed to have a workup for one as our next step. 

[kroe1]

I wish there was more research on seizures and diet. There seems to be many different triggers for each person.

 

At any rate, we have a dog whose trigger is a soft plastic found in dog chew toys. We cannot even serve her food in Tupperware. Go figure. I am just thankful we discovered the trigger.

[speedmom4]

Well, I guess we haven't given much thought to it because we're still on her first 24 hours of meds.

 

I wouldn't rule out any necessary surgery as a last resort- but it's just hard to imagine anyone cutting into my child's head like that, and then her having something permanently inside her body.

 

I completely understand that people really need it and I support that. We're just still more comfortable with something we see as less invasive, if there's still options left.

A VNS is not placed in the brain. It has a battery about the size of a silver dollar, a little bigger and thicker, and it is in the chest wall right below his left collar bone. The wires go up into his neck and wrap around his vagus nerve which sends electilrical impulses up into the brain.

 

Obviously you all aren't at that point yet. My son was diagnosed with epilepsy at 3 and had the VNS surgery at 6. I would just keep it in the back of your mind as an option someday. Hopefully between the diet and meds surgery will never be necessary.

 

I would imagine at Hopkins they are used to dealing with all kinds of people and all ways of paying. People from all oer the world go there for treatment. I would definitely call and find out the situation. I imagine any good neuro will be very familiar with the ketogenic diet.

 

God Bless,

 

Elise in NC

[speedmom4]

I forgot to ask if you all have emergency meds on hand, just in case?

 

I always keep Klonipin and Diastat at home in the event of a cluster of seizures or any seizure lasting more than 5 minutes. Thankfully I haven't had to use them often. The issue with epilepsy is that seizures may always stay the same or they can change without any warning. It's not a predictable condition.

 

Anyway (((hugs))) to you! It sounds like you are doing all you can.

 

God Bless,

 

Elise in NC

[Katy]

If you suspect something is a trigger but aren't sure, that's why you keep a diary.  If you blame the food, but really it was a flashing light on TV that triggered the incident, you won't know unless you try it again.  When I suspect something is an issue for me I try it three times, under different conditions.  If every time it's a trigger, then I know it's a trigger.  I've heard other people don't trust that something is a trigger unless it works 5 times, at different times of day and in different locations.  Otherwise it could just be a coincidence.

[Love]

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Edited November 19, 2015 by Love

[fruitofthewomb]

I was keeping a dairy, but I was probably being too cautious. If I really thought it was a certain food, I just couldn't make myself give it to her again. If we had been doing it for a long time, I am sure I would have felt braver to try something again, but we only did it for a couple of months before we went back in for the medicine. But I will keep going the dairy. I have a few things to write down already. She has started having side effects from the meds already, and I want to keep track of those too. DH called the doctor and talked to him, and he said to give it a week.

 

 

I will ask about the emergency meds. DH and I were just talking about those on the way to the doctor too, but I didn't think in there to ask for them. Thanks.

 

 

Ugh- and the seizures caused by plastic! That's one reason why I didn't know if I would ever get the diet worked out- because of all the variables. The younger children have a lot of plastic dishes that she still uses, and it never occurred to me it could be that. We have those huge power lines in our general area too. She didn't have seizures until we moved to this area, and some people think it could be that, or the lights in buildings we go to, or farming chemicals in the area, or- or- or.... It's just endless.

Hugs to you. My dd who is 9 has a brain tumor & seizures as a result (dealing with this for over 5 years now). She is actually inpatient right now being monitored & having brain mapping done. I don't have any advice that hasn't already been given but just wanted you to know that I understand. All the variables & what ifs. I get it.

[speedmom4]

I was keeping a dairy, but I was probably being too cautious.  If I really thought it was a certain food, I just couldn't make myself give it to her again.  If we had been doing it for a long time, I am sure I would have felt braver to try something again, but we only did it for a couple of months before we went back in for the medicine.  But I will keep going the dairy.  I have a few things to write down already.  She has started having side effects from the meds already, and I want to keep track of those too.  DH called the doctor and talked to him, and he said to give it a week.  

 

 

I will ask about the emergency meds.  DH and I were just talking about those on the way to the doctor too, but I didn't think in there to ask for them.  Thanks.

 

 

Ugh- and the seizures caused by plastic!  That's one reason why I didn't know if I would ever get the diet worked out- because of all the variables.  The younger children have a lot of plastic dishes that she still uses, and it never occurred to me it could be that.  We have those huge power lines in our general area too.  She didn't have seizures until we moved to this area, and some people think it could be that, or the lights in buildings we go to, or farming chemicals in the area, or- or- or.... It's just endless.  

 

You could drive yourself insane worrying about all the potential causes of your dd's seizures. The longer my son has epilepsy (12 years now) the more I think that most of his seizures have no triggers. I definitely know of some of his triggers, like exhaustion. Also if my son hurts himself by falling or playing too rough with his brother he will have a seizure. I know FOR SURE those are his triggers. 

 

The best thing you can do is to educate yourself about epilepsy but don't let it take over your life. Reassure your dd that everything is going to be ok. The side effects of the meds will more than likely disappear after a few weeks but if not there are so many other meds out there to try. 

 

(((Hugs)))

 

Elise in NC

[Whereneverever]

I forgot to ask if you all have emergency meds on hand, just in case?

 

I always keep Klonipin and Diastat at home in the event of a cluster of seizures or any seizure lasting more than 5 minutes. Thankfully I haven't had to use them often. The issue with epilepsy is that seizures may always stay the same or they can change without any warning. It's not a predictable condition.

 

Anyway (((hugs))) to you! It sounds like you are doing all you can.

 

God Bless,

 

Elise in NC

 

When you ask about emergency meds, at her age I would shy away from Diastat. It's administered rectally.

 

Nasal versed is super easy to give and has been really effective here. It's cheap per dose, as well, which is nice when you need it often. 

[Love]

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Edited November 19, 2015 by Love