Can it just get any easier????

[SoCalMarisa]

Hi all, I'm new here but not new to Epilepsy. My son had his first Grand Mal 2 years ago October at age 4 and it's been a roller coaster ride since then. He has Benign Rolandic Epilepsy with primarily Nocturnal Seizures. When he doesn't get good sleep he has a seizure. They generally hit after 1am and before 6am, which always makes for a fun night and few days following. Getting his neuro on board with the whole idea that his trigger is being tired was a challenge. Keeping a journal helped. He has had lapses or periods where he was seizure free for up to 9 months, then bam. Of course all tests show normal brain activity. Prior to him having seizures he used to get horrible night terrors. Always typically when he didn't get a nap. Those went away but then the seizures replace the night terrors. (Neuro says no direct correlation-HA!) He's probably the only 6 year old who still gets 3 hour naps. He does not get good sleep and we use Melatonin to help him rest properly. He isn't currently on any of the anti-seizure medication because his seizures are so few and far between. Plus we really don't want to use them if we can get away with altering diet to help him along. But are not completely unwilling to cross that bridge.

When I asked his doctor about diets and foods for epileptics his only comment was the Ketogenic diet really wouldn't affect his type of epilepsy. But he didn't have any suggestions. Now, I'm feeling like I'm teaching the doctor. We are with an HMO and are limited in our choices for Dr.'s and considering his ped. neuro is the head of his department we're kinda in a spot. Our next opt out is May of next year so we need to tough it out with him until then. Luckily my keeping a journal and being adamant about my sons needs has helped in opening the Dr.'s mind that he may not have all the answers. Now we are working together, instead of the mighty Doctor knows best.

Hayden starts first grade in fall and they wanted to keep him back because they were not happy with his cognitive - not understanding that it's an epilepsy thing not a maturity thing and we need to learn how to teach him rather than mask the problem. It's a private school and they really don't have much of a program for children with learning disabilities. So I've bullied them and Hayden starts first grade but he will have a tutor with pull-outs during the day.

My main problem now and that's why I'm here and oh so sorry for the long build up - is he of course is a very hyper boy with an active imagination. I just know when he gets into first, his teacher is going to say he has ADD/ADHD and that he needs to be medicated. [groans] So in speaking with the pediatrician about possibly changing his diet to reduce his hyperactivity she was onboard. Her first response was take him off dairy, which is going to be fun because dairy is his main food group. Milk, yogurt, cheese, ice cream. The boy could quite literally live off dairy. Then she recommended going organic. This is a whole new world for me. We aren't bad eaters here. We eat lots of fruits and vegetables. I do more cooking than preparing. But we are also your typical family who eats your regular commercial foods. I feel sooooo lost. Our first change was to put the boy on Almond Milk for his cereal, which was this past Saturday. I think he looks at is as an adventure because he really enjoys this. Thank the Lord!

He has calmed down a bit and his personality seems more aware. which makes us more interested in changing his diet. What I don't understand is how come his neuro didn't suggest these changes to me in the first place? I understand he is a busy Doctor but how come we didn't receive a welcome to epilepsy packet that included dietary suggestions. & NOW WHAT? Where do I begin? Money of course is tight so we can't just wipe out our pantry and start over. Feeding a family of 4 is a tough thing to do already in this economy. But we do want to make smart changes for our family.

Here are some questions I have.​

When I asked his pedia about gluten she said he's not autistic so not removing gluten shouldn't be an issue? But I just read on the board that gluten can be an issue?

Why is Soy so bad for Epileptics?

Is goats milk ok or not?

Again sorry for the long post but given that my sons seizures can go a few months with gaps he is not your typical epileptic but he still is one and since we don't see his Dr. very often I'm always full of questions. If you're still here thanks for your help and reading all my yammering on. + I hope I'm in the right forum!

~Marisa

 

[Nakamova]

Hi Marisa, welcome to CWE!

You ask some excellent questions. As far as your neurologist goes....well, there seems to be a wide range out there in terms of quality and communication abilities. Some neurologists aren't particularly interested in treatments that don't involve meds. Some aren't particularly interested in insights that come from the patient or the parents. Many understandably feel that they can't recommend a treatment if there isn't a ton of data to support it. This makes sense for invasive treatments or medication, but perhaps less so for dietary/nutritional changes and neurofeedback where side effects are less of an issue. I salute you for being persistent in considering non-medication approaches, despite resistance from your son's doctors.

Gluten can definitely be an issue for people with seizure disorders. The list of neurological symptoms linked to gluten sensitivity includes balance and gait disorders, migraines, seizures, and development of brain lesions and calcifications. Celiac Disease, the most recognized form of gluten sensitivity, is a known cause of epilepsy. This does not mean that all seizures are caused by gluten. Still, it is something to watch out for, especially given that dietary changes can have fewer (or no) side effects compared to medications.

Soy isn't bad for all people with seizure disorders. It can be a factor for those who are triggered by high or fluctuating estrogen levels, since soy contains phytoestrogens that behave similarly in the body. Along with gluten, dairy proteins, and corn, soy is one of those foods that can cause malabsorption issues and health effects secondary to this malabsorption.

All dairy products based on cow milk are high in glutamine (an excitotoxin and potential seizure trigger for many). Goat milk contains much less glutamine than cow milk, so it's worth trying as a substitute to see if it helps. If a complete elimination of glutamine is required, then goat milk would have to be crossed off the list.

Any dietary changes should be done gradually, in part to help the system adjust, and in part to help in identifying particular sensitivities. It can take several months before results become clear. You might want to check out this thread http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/ where CWE member RobinN tracks how neurofeedback and dietary changes have helped her daughter.

Best,
Nakamova

 

[SoCalMarisa]

Thanks so much for your response Nakamova. I really don't like to feel like I'm a fish out of water and that's how dealing with this condition makes me feel. There is so much to learn and it gets overwhelming at times. But thank you!

 

[Nakamova]

It can definitely seem overwhelming. And dietary adjustments aren't always easy to make. Go slow, and keep a diary if possible so you can see what seems to help. It may be that a diet like the Modified Atkins Diet works better for your son than an elimination diet -- it will take some patience, and trial and error. It's nice that your son's pediatrician is on board -- that should help.

Keep us posted!

 

[NeuroNotes]

Prior to him having seizures he used to get horrible night terrors. Always typically when he didn't get a nap. Those went away but then the seizures replace the night terrors. (Neuro says no direct correlation-HA!)

Hi Marisa, welcome. My first initial thought after reading your post was: "She should fire that doctor and find another one as soon as possible. Fire him in his face - your fired". LOL Thankfully your son got a proper diagnosis. That's huge when you consider how many people are generally misdiagnosed or not diagnosed at all, no matter how many times they see a doctor. You are right...you do have to learn more (on your own) and then educate the doctors. Where's our paycheck?

After reading your post, it seems apparent to me that you are an amazing mother, attentive and aware. Your child is so very fortunate to have you. I wished my parents had been more aware of my situation when I was a child, but they listened to the doctors, thinking they were getting sound medical advise. I don't blame them considering the 'god complex' that has been so prevalent within this profession and society.

Here's what the doctors told my parents:

"Your daughter is going through a period of adjustment due to the arrival of her new sibling...she's acting up because she wants attention." =/

My seizures began with night terrors, and I remember having them starting at around age 4, but they could have been earlier. They were always the same, starting with a floating vision on the wall, then electrical sensations in my fingers, on my left hand. I would clutch my hand into a fist hoping that it would curtail my next stage of the experience, which I feared the most, a sensed presence that would chase me. I thought it was trying to come inside my tummy. I would feel sharp stabbing pains in my mid to upper abdomen. After that, I would feel like I was being sucked down this black hole. During naps, I had out-of-body experiences quite often. They created a lot of fear as well, because I could see everyone, but they couldn't see me, nor could they hear me while having the experience. Those types of night 'and' day terrors continued until I was around age 10. I didn't find out that I had TLE until I was well into adulthood, and it was quite by accident. I think the terror of living with this disorder 'alone', was actually worse than the actual night terrors/seizures themselves.

In the earlier years, between age 4 and 6, after having a night terror/seizure, I would scream, engulfed with fear, running round the house, often taking off my clothes. I can remember feeling very electrical and I couldn't stand anything touching my skin. I can tell you that I was so afraid to have another night terror/seizure, not because they were incredibly frightening, but because I feared I might be disciplined for 'acting up'. To add insult to injury, I started having absence seizures in school along with TLE symptoms. One day, while packing for a move, I found my report cards from those earlier years in elementary school and kindergarten. Under teachers comments it would read: "Needs to pay better attention in school. Does too much talking at times. Prefers to work alone."

One of the side-effects for me, after having a seizure, was talking a lot...babble. I would become a chatter bug. After discovering I had a seizure disorder, I was doing research on the symptoms and found out that the chatter bug activity was indeed a side-effect. hahah, now I just make very long posts. :embarrassed:

My parents were concerned, but still took the advise of the last doctor(s). That produced a lot of psychological suffering for me through the years. Getting back to your son's doctor, considering the fact that this doctor seems to know little about the symptoms of the disorders he diagnosed, you and your son are probably better off not getting any advise or direction from him. I think you did the best thing by coming here to CWE. You will learn a lot for sure, and find a strong support system, which is so necessary.

Here are a few comments from parents on other sites. These children were diagnosed with BRE:

"My son started having "episodes 2 yrs ago when he was 8. He was thought to have NT by his pediatrician until I sent hem a video tape of an episode and he referred him to a Neurologist. He diagnosed him with BRE or Benign Rolandic Epilepsy. The symptoms can overlap with the parasomnia (night terrors) symptoms. He usually always gets them when he is ill with a fever and they occour within the first 2-3 hours of his sleeping at night. He will come to my bed and try to talk but his words are all jumbled up. He has a very distinct far away look in his eyes even though he is looking at me. Sometimes he is panicked or does strange things like wanting to go outside or turn the t.v. off when it is not on. He "walks" on the bed and throws his head back repeatedly. He has said as best as he can that he is "out" of his body or I am "back there". Sometimes he says his head really hurts and cries. The episodes last about 3-10 minutes and he remembers some parts and some parts he does not. He will go right back to sleep when they are finished. Sometimes he has 2 or 3 in one night."

http://www.nightterrors.org

"Our daughter was diagnosed with BREC (Benign Rolandic Epilepsy of Childhood) 2 years ago. She had "night terrors" as a baby, and when she started crying hysterically in her sleep around age 8 or so we assumed it was the same thing."

http://www.epilepsy.com/story/976740

The image and comments below come from one of Dr. Todd Murphy's sites. He's a behavioral neuroscientist who had childhood epilepsy and now does research in this area. He has interviewed many children and has given them a very much needed voice. Here's one of several on his 'Visions' page.

Quoting Dr. Murphy:

"This picture was drawn by a 7-year old boy who showed many signs of Temporal Lobe Epilepsy.

He said the vision came to him at night, and that it was very frightening for him.

His father did not think his experiences were significant. Until he talked to me, that is.

One conversation later, that kid knew that God was not punishing him with a demon,

and that many people had similar experiences. He was not alone with it any longer."

More children's stories/experiences: http://www.shaktitechnology.com/Visions.htm


The above comment was exactly how I felt as a kid. I wished more doctors were aware of just how terrorizing this disorder can be for children. Lack of education and empathy among doctors and the school system can lead one to years of unnecessary guilt, frustration, isolation and negative self-reflection, which can invariably lead to serious depression and hopelessness. Studies show that too much self-reflection leads to depression. When you are misunderstood and/or feel you have no voice, there's little else one can do but self-reflect and blame him/herself.

Here's a great public service announcement video helping to bring awareness to teachers. Out of the mouths of babes:

[ame]http://youtu.be/BcdxpjvsXNY[/ame]

I believe your son will begin to see more benefits from the diet changes, and there are a few people here who are very knowledgeable in nutrition, having found great success. It is comforting to read that your son will not be on this journey alone. Neither will you. I wish you and your son the very best, and please feel free to PM me anytime.

Again, welcome. You are among friends...friends who understand and care. Ƹ̵̡Ӝ̵̨̄Ʒ

 

[SoCalMarisa]

Thanks NeuroNotes for all the information. There is so much to weed through. As a child I had a lot of de ja vu's, my constant comment on report cards was that I daydreamed a lot and was in my own world. I had migraines too. School was a definite challenge for me and basically became my social outlet with education as a hindrance to my socializing. Now as an adult I find it easier to study and retain. Looking back there is so much that could have been done for me regarding my education and health but I think I slipped under the radar. His Kindergarten Teacher made a very strong case to hold back my son in Kindergarten because his cognitive is not what they would like to see in him. When asked a question he has to think over his response and he always looks to the side when thinking. My contention is this isn't a maturity thing rather an epilepsy thing and we need to learn how to teach him because this will always be a problem for him. Next year will be the same thing but different grade. I don't want to have a 10 year old kindergartner just because they don't like how he responds. At least he will hopefully outgrow it.

I have already come to the determination that Dr.'s are really just trying to make their flat world round and haven't quite figured out how to do it when it comes to E. As for us, with the breaks in seizures we get complacent and then it all starts up again. I've gotten used to dealing with the seizures and can recognize when one is going to hit. I just feel like I'm not only educating my family but also the Dr.'s

Hubby and I have been discussing Hayden's diet almost daily. Removing Milk is almost a physical blow to my husband. But he knows we are doing this for the boy. For now the Almond Milk is working but being an Mexican/Italian family I need to find a cheese substitute for those yummy dishes I prepare in the fall/winter. Looks like I'm going to be using Goats Milk Cheese in those instances and continue with the Almond Milk for his other cravings. Thanks so much for sharing your personal experience.

 

[SoCalMarisa]

I spent some time on Robins thread and wow she has gone through a lot with her daughter. I hope I have time so finish it tonight. She does post a lot of information. Thanks!

 

[Nakamova]

My niece is vegan, and has been able to create all sorts of "cheese" recipes, including a vegan cheesecake! But I think tofu plays a major role in the fake cheese effect, so if soy is also an irritant for your son that might not work...

 

[SoCalMarisa]

It's so hard to believe just how many foods have soy in it! I spent the better part of an hour this morning on the phone with a girlfriend of mine. Her daughters birthday is this weekend and she wanted to make sure she had the right type of cupcake for Hayden. Her son also is off the same foods as my Hayden so it was a very informative conversation. Now I have a shopping buddy. =)

 

[USRN39GS]

Did you know that there are studies that show autism and epilepsy can be linked? Of course I don't have the link in front of me right now, but it is on another website, on the Epilepsy Foundation page. There was something else that stood out in your note - you are concerned about the label of ADD/ADHD. Many children are getting that label now and they probably aren't. There is even debate on whether or not autism is going to be included as a mental health disorder. Many characteristics of ADD/ADHD and of autism are characteristics of gifted/talented individuals. If you look at the list of famous people with epilepsy it consists of a long list of gifted and talented people. Have you considered having your child tested? Just because a person is slower to respond doesn't mean they don't understand....A person can slow down their thoughts because others can't keep up, or they can't think of the right word they want to use as fast as they are thinking, or they need to use a different word so people will understand, etc....Don't worry about writing so much..it's called hypergraphia. You will constantly be teaching the doctors and they will never learn/listen/or understand either - they are just surviving the best they can in the system they have to work in, educated in an archaic broken system, and have little authority, as I was reminded recently, to help change anything. Keep observing,documenting, and reading. Take care.

 

[SoCalMarisa]

Thanks. That is a lot to think about. We have an appointment with his neuro at the end of this month. Hopefully it will be a good meeting. Right now the taking him off milk has worked wonders. He did have a relapse this weekend though. I was out of town and my mother in law watched the kids. She apparently didn't follow the "absolutely no milk" rule. When I got home yesterday the boy was bouncing off the walls. Now we are back to square one. Today is better and hopefully tomorrow will be an improvement on today.