New member with son with absence seizures

[JKE Mom]

Hello,

I am new and so glad I found this site. I have a 9 year old son that was diagnosed in March of 2008 with absence seizures. It has been a long road of doctors telling me "he is just a boy, he'll catch up" and "you are over reacting" to being told it is ADD/ADHD, then no, it is auditory processing, to now finally the comfirmation that it is epilepsy. We have tried Keppra and Zarontin which did not work. He is now on Lamictal, and his seizures continue to get worse - up to about 100 a day now lasting from 2-10 seconds. I am so upset that he conitues to decline right infront of my eyes. We did try neurofeedback and his condition continued to get worse. Out of pure frustration, I took him to a holistic nurse practioner who talked alot about nutrition and my son's signs of possible celiac disease and malabsorbtion issues. I was in shock, yet, so anxious to see what his blood and urine tests show. The nurse practioner was so refreshing to talk to and gave me the feeling that there are other things that need to be explored with my son's condition. The neurologists would only mention that I may want to try the ketogenic diet, but never talked about food allergies. Whenever I would ask them about other causes to his seizures, I was told that many of the causes are not known. Does this story sound familiar to anyone and has anyone had success with decreasing or even elimination seizures with diet?? Anyone's experiences with celiac disease? My son is suffering in his own silence and I promised him that his mommy is not giving up until we get some answers and he feels better. He has been in the hospital for V EEG's 3 times in the past 10 months with no improvement. HELP!

I do have some form of seizure history in my family. My father was on phenobarbirtal, dilantin and tegretol for 35 years and would still have break though grand mals. Amazingly, after a series of grand mal seizures and then going into a comma, a neurologist walked into the ICU and observed one of my dad's seizures and told us that he does not have epilepsy, but orthostatic hypotensive syncopy. He has been off all of his meds since 1989 and has not had 1 seizure since. My son's neurologist is not sure if my father did indeed have epilepsy or he was mis-diagnosed for all this time. He had his first grand mal at 18. I have no idea if my father's condition is related to my sons.

Thank you in advance for anyone's help or perspective.

[sixpack]

Yes there are some folks on here that use diet to reduce seizures. I think it depends on the ultimate cause of your son's seizures as to whether it would help or not. does that make any sense??? I guess it's better to say that not all people's seizures would improve based on diet. My daughter's seizures are due to her brain malformation, for instance. But I think it's well worth looking into.

As to your son's issue being related to your father's I don't know.

[Crazy Monkey]

Hiya JKE Mom

Welcome to CWE

You have come to the right place for support and information, everyone here is very friendly and we all try to help each other.

I am an adult living with absence seizures, I was diagnosed at the age of 10, I currently have up to 50 a day, though on a bad day I can go over 100. I have also tried several meds including Zarontin, but none of these were successful, I am also now taking Lamictal.

It took a while but Lamictal is the reason I am now down to 50 or less a day, if my meds get out of sync or I get tired/stressed then my seizures skyrocket. So I know Lamictal is trying to do its job, even if it is only half way.

A cause has never been determined for my seizures, they just seem to be 'one of those things'. I am unable to help you diet wise as it is something I have never really tried. I know that some people on CWE have a reasonable level of success by using diet and supplements.

I have now learnt to live with my seizures, I don't pay too much attention too them when they happen. I lead a normal active life and try not to let the seizures hold me back in anyway.

One thing I was always told as a kid by my neurologist was that it is very common to grow out of having absences, so fingers crossed for you son, hopefully he will.

Take Care

The Crazy Monkey

[skillefer]

Hi JKE mom! Welcome to CWE. I agree with six pack. It's hard to tell if your father's and your son's seizures are related. As for celiac, yes, there are several people here who have celiac, and several who have used diet to decrease and even rid themselves or children of seizures. Try talking to Robbin and Living Fruity. While some have used high protein diets, others have gone vegetarian.

[LivingFruity]

Hi JKE Welcome to CWE! I can only imagine how frustrating your situation must be right now. Finding a doctor that will support you and your son, will help you to understand, and who is willing to look for a cause and solution other than just treating the symptoms is difficult. I'm sure it's even harder to watch your son get worse. My thoughts are with you.

We're currently treating my 7-yr old son with a combination of nutrition and cranial therapy. All of my research has all brought me back to nutrition being a large factor in my son's seizures. There's a lot of information in the library here on alternative therapies. We have some excellent nutrition topics being discussed in Zoe's Corner of the Kitchen Forum.

If I could suggest a couple of books for you, they would be Treating Epilepsy Naturally and Excitotoxins: The Taste that Kills.

Make yourself at home, ask questions, or just take the time to vent frustrations. We're here for you

[drarvindr]

Hi,
, if your son has celiac disease , he could have problems that cause reduced absorption of nutrients and drugs from his gut , which could explain none of the drugs improving anything. classical fat malabsorption sometimes caused by giardia infestation, cystic fibrosis or celiac disease , can present as stools floating in the bowl and difficult to flush down. a gluten free diet can help your son . you may want to try for absence seizures depakene (sodium valproate). it works on different epileptogenic mechanisms and is kind of a one size fits all drug , though of course there is no guarantee but it may help.

[Bernard]

Hi JKE Mom, welcome to the forum.

... I have a 9 year old son that was diagnosed in March of 2008 with absence seizures. ... We did try neurofeedback and his condition continued to get worse. ...

My wife used to have multiple, daily absence seizures too, but they were completely eliminated after she used EEG neurofeedback for just over 5 months.

I'm curious. How long did your son train with neurofeedback? Do you know what neurofeedback system (hardware/machine) or protocol (SMR training, QEEG guided training) was being used?

[JKE Mom]

Thank you to everyone for your warm welcome and words. I took a step back for a bit as my children all decided to take turns with pneumonia and strep throat! Ahhh, it never ends.

Bernard, I am not sure if I can properly answer your question about the different types. My son did 50 sessions with the 1st practioner. I do know that the software she used was called NeuroCybernetics, INc. I have a printout from one of his sessions where his theta shot up to a 75.6. His theta was 4-7 inhibit, reward was 12-15 SMR/Beta, and the inhibit was 22-36 High Beta. She would attach the electrode to the right side of his brain/head. The 2nd practioner took a different approach and attached the electrode directly to and worked on the SMR strip. We only worked with him for about 2 months, when my son seemed to get worse. The therapist told us that he felt our son needed to be a little more stablized before we continued and for some reason, felt his brain was rejecting what he was trying to accomplish. The 2nd practioner has 10 yrs exp. with epilepsy and has successfully helped patients reach seizure free status. Once we get our son under some form of control and stop the decline, we will go back to strengthen and regulate his brainwave patterns. I don't know if I am explaining this properly. I am sorry if I am not! I do still speak to both therapists, so I could ask them specific questions and get back to you.

On another note, the nurse practioner called and they did find some issues within our son's blood/urine test results. We go in on Monday to discuss the results in detail. THey didn't tell me much over the phone, but did indicate they found gluten and casein sensitivities. If he does have some food allergies and was consuming them at high quantities, maybe that could explain why the neurofeedback was not repsonding as well???

I will continue to keep on digging deeper!!

Thank you to all of you again. I feel so alone at times and don't know where to turn.

JKE MOM

[JKE Mom]

Bernard,

I did forget to mention that the first time we turned to neurofeedback, we were treating our son for what we thought was an ADD/ADHD issue. We had no idea he was having seizures. It wasn't until he was working with the therapist and he theta shot up to 75.6. She immediately stopped and called me into the room and said something else was going on. Our son had his first EEG 2 days later, and it was then when we discovered, it isn't ADD/ADHD, but seizures. He was admitted to the hospital 2 days after that for his first video EEG and epilepsy was then confirmed. So, when the medication wasn't working, I researched and found a neruofeedback therapist that had worked with people that had seizure disorders and started to work with him. The other therapist had no experience and specialized more with autism and attention issues.

Thanks! : )

[Bernard]

Interesting. Thanks.

SMR normalization is the first approach that was studied for seizures. Recent studies of QEEG guided neurofeedback appear to be yielding much better results.

[klkerber]

Hi JKEMOM! I just recently joined CWE (last week) and have found it to be very helpful...Everyone is so generous with offering their stories and suggestions!

My four-year old daughter was diagnosed this passed January, (On her birthday...Happy birthday, Gracie) with Absence epilepsy. I noticed her staring spells a couple of weeks earlier. They seemed to come out of nowhere...I recognized what I was looking at because I had a student who had staring seizures about nine years ago. I started keeping track of the times Gracie's seizures occured and my husband and I even video taped several of them. So, when we finally got in to see the neurologist, we were well prepared. The diagnosis was made immediately and confirmed four days later after a "text-book" EEG. She's been on Ethosuximide since and it hasn't really worked. I have to admit, her seizures have decreased but she recently had a surge of them a couple of weeks ago. Realizing that we were going to have to make a decision on our next course of treatment, I started researching the different drugs and bought the book Treating Epilepsy Naturally...I love this book! It has given me hope that there might be some explanation to her epilepsy (ie: food allergies, hypoglycemia etc...). One of the most interesting things that I discovered is the ill-effects of aspartame. Gracie loves yogurt and all we ever have in the house is non-fat yogurt (loaded with aspartame!!!). We have switched her yogurt to an organic formula and not only have her seizures decreased (almost non-existent) but her night sleeping has improved drastically (this has been a problem since she was 18 months old). It's amazing!!! I highly recommend this book. Our next course of action is to eliminate other suspect foods and hope for the best.

I look forward to hearing more of your story and future successes!

[Meetz1064]

and welcome to CWE! I apologize for not having greeted you earlier.

I am an E patient, and have been, apparently since I was born. I was actually diagnosed when I was 13 months old.

I was just diagnosed as a celiac patient, with a major lactose intolerance as well, in the last couple of weeks. I have known that I have a gluten intolerance for a number of years now, but have now beenofficially diagnosed. YIPPEE.

Because of the knowledge that I've had about my intolerances, I have been following a form of the GARD diet. And YES, it has helped me, and my seizure control. Even though 2 more forms of E have shown up for a grand total of 4 (all are nocturnal), my tonic clonics are under complete control, and I truly believe the diet has everything to do with it. I think clearer, and feel much better. Check out this link:

http://www.coping-with-epilepsy.com/...gard+diet.html

If you look at the following page, it has a list of very common tags in it, and you will see tags for the Modified Atkins Diet, LGIT diet, and the Ketogenic Diet as well as plenty of other information.

http://www.coping-with-epilepsy.com/

You might want to go check out the Library and the Kitchen to start out with--there is quite a bit of information in those 2 particular areas about diets.

I was diagnosed as a celiac when my body started to revolt badly--and I'm still losing some weight--I've lost almost 50 pounds now in about 2 months' time. But, as I am working my way onto the celiac diet, I've noticed that there is one med that I don't have to take anymore that I've been taking for the last 5 years.... and I don't need my pain meds as much, either.

Getting control of your child's diet can do only GOOD things, I promise. You will become an avid label reader.....

Take care.

Meetz

[katie's mom]

Welcome to the site JKE mom!

I just want to share my support & condolences over the battles with epilepsy! It is SO frustrating to feel like you are losing your child & the drugs aren't doing a thing!! Believe me, I have been there!!

I know that it is nice to have a medical person taking the time to talk to you, etc. but I would be VERY careful about giving to much weight to a nurse practitioner's advice. They are the LEAST educated of all medical practitioners and I have some family members in medicine - one of my neighbors is an NP who got her degree ONLINE - very scary considering that study of basic human anatomy requires hands on exposure (i.e., the basic cadaver lab). I certainly understand your desire to hope the troubles can be explained by something BESIDES idiopathic epilepsy - i.e., an allergy. However, if you visit sites/read articles about epilepsy - especially for children, a lot of ADD/emotional/attention related issues are usually a symptom not a cause of the basic epilepsy. Food can influence epilepsy activity but minor diet tweaking is not enough to control it. Usually the only causes of epilepsy in CERTAIN cases are brain damage/tumors or heart conditions. For most of epilepsy patients, though, it's just an unknown mechanism related to genes.

Not trying to dash your hopes, though. There is an alternative that deals with diet that your neurologist has already mentioned to you: the Ketogenic Diet. My 4yo daughter's epilepsy has been declared intractable, med-resistant. We were losing our little girls personality & mental abilities every day UNTIL we tried the Ketogenic Diet. It is hard but it does work. It has been around since the 1920's and is better-researched than any other diet treatment or alternative therapy. It is something that I wish we had tried MONTHS AGO. Please consider giving it a try and remember that your neurologist recommended it because he SPECIALIZES in this stuff, he is not just looking to justify a paycheck at a single treatment-specific clinic. Not that the NP doesn't mean well, and not that neurologists are always easy to deal with - trust me, I wish mine had taken the time he needed to get Katie on the diet MUCH sooner - but the Ketogenic Diet has much more years of verified statistics to back it up than any other alternative therapy.

I would definitely consider this route first. This is coming from someone who understands how precious time is when you're watching your child decline daily and who has seen the effects of wasting time on treatments that don't get the job done.

Best of luck!

Kristi

[mjwill]

This is a reply to you and all others who have kids with absence seizures. Our daughter was 4 when she started having seizures. They occurred every 10 min at their worst point. We went through many tests, many neurologist visits and the only suggestion was medicine. We were fortunate enough to eliminate her seizures completely with changes in her diet. She has been seizure-free for over a year, we had a big celebration to mark the year! We went through several variations of diet changes (GARD, then salicylate-free) then finally with the guidance of allergy tests (both IgG and IgE) we eliminated gluten, dairy, corn, soy (and a lot of other things) and did a 4-day rotation diet of meats, non-gluten grains, (basically everything was rotated on a 4 day schedule, even fruit!). It was amazing to watch her energy come back slowly over about a 3 month period during which her seizures slowly grew less and less frequent. Good luck to everyone. It took a lot of work (especially from my wife and all the cooking and shopping) but obviously it was worth it.

[RobinN]

Awesome MJwill !
I have yet to try the rotation approach, but you have certainly intrigued me.
I also have not demanded the IgG and IgE test. Do you think they are necessary. We are doing semi GARD, but I know I could be better.

Your post is extremely encouraging.

Would you please introduce yourself in the Foyer, so others can welcome you and hear your story.