Hey there to whomever will listen! My son is 8 years old and has been taking seizures since he was 2 yrs old. His seizures started out as febrile seizures and slowly progressed. We started him on valproic acid after he had about 3-4 seizures. Over the years, he ahs slowly progressed with his seizures getting worse. They went from febrile seizures to grand mals to absence and myoclonic seizures that stated around the same time.
At 18 months old, he ended up having a severe case of bronchitis with an extreme high fever that reached over 103. At this point and time, he was sick for a few weeks, The doctors didn't feel the need to keep him in the hospital for treatment so we took him home. During all of this he also was severely sick for more than 2 yrs with severe back to back infections with his tonsils and adnoids. At the age of 3.5 yrs old he had them removed. Since the age of 2 yrs old, he has been on more medications than I can count.
Now at this present time, he takes 4 seizure meds 3 times daily and 1 med to help him sleep. My son had to start wearing a helmat when he was 6 yrs old because of the severity of his myoclonic attacks. He is a awesome kid though because not once has he ever complained about having to wear the helmet. He has actually only complained about being too hot in it because it is made out of neoprene and hard plastic. It also has a face guard to protect his mouth area.
There have been several times that he's had to have stitches because of his seizure activity. About 3 yrs ago, he was diagnosed with ADD which cannot be treated because of his seizures being so uncontrolled. Although for the past 5 months, he hasn't had any seizures! He is now in grade 3 and so far has been doing really awesome at school. For a long time we have had huge behavior issues and trying to discipline him and trying to teach him right from wrong has been my biggest challange.
I have researched everything on this syndrome and haven't found nothing that suggests any type of therapies or how to deal with everything. When he was young, he was delayed but I didn't think nothing about it because everyone always told me to not worry cause boys developed slower than girls. My 10 yr old was having conversations when she was about 2 yrs of age and there had been nothing wrong with her medically. Now I have a 19 months old who seems to be following in the same footsteps as his brother and had a febrile seizure at 9 months old. So we immediately had him tested for epilepsy. Nothing showed up thankfully but he is delayed and we've had every tests known to man for delayment done and nothing shows. His eyes are fine, his ears are fine. His mri,eeg,and blood tests all came back fine.
If there are any questions, please feel free to ask. I would love to hear from others who are dealing with this particular type of epilepsy. Lennox-Gastaut Syndrome. Someone needs to do more for this syndrome and get more info out here for those of us who are living with it daily. Thanks a lot..... Sarah
You are not alone!
Hi Sarah,
I know how difficult and overwhelming this all may seem to you. But, your story is almost a carbon copy of my story with Adam. Today Adam is seizure and drug free and has been for over 10 years - I hope I can help you to do the same.
Now the good news!! There are treatments out there that saved Adams life - the doctors know about them, and often dismiss them. They have been around for more than 80 years and work better than the medications. I honestly do not think Adam would still be here if I had not found these TWO treatments. That is why I wrote this site - for parents just like you!
Adam today has no seizures, no medications, no behavor problems and is the most wonderful young man you could ever meet. His autism is reduced by 90% and he functions very well although his brain was damaged from status seizures.
There are three podcasts you need to listen to, then you need to call me. I would love to chat with you over the phone. The treatments are called:
Please listen to all of these podcasts - they will be a huge eye-opener for you:
I also want to send you a complimentary copy of my ebook. I think you will find that your son is very similar to Adam and i would love to help you get him well again.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
604-538-6460
Lennox Gastaut
After getting clinical diagnosis. We decided to get 2nd opinion. A Video EEG was ordered and confirmed Lennox Gastaut.
Lennox Gastaut
This vis how our son was diagnosed after being on the video EEG monitor for 5 days. Everyday his previous nights results would be sent over to another hospital to a team of doctors to be looked at. By the end of the week, they had said that he definitely had LGS.
Lennox Gastaut Syndrome
Hi Sarah,
I know this is difficult news to absorb - please know you are not alone and there are options for you. I highly recommend the ketogenic diet - it seems to work remarkably well on kids with LGS.
Listen to all three of my podcasts and get the book "The Ketogenic diet- A treatment for children and other with epilepsy" by Dr. John Freeman. It will open your eyes and answer many questions.
I wish you all the best!
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
general update
As of this far, my son hasn't had any seizures in about 6 months. This is great for him because he hasn't had this kind of break in a few years. His doctor is thrilled with his improvements! Although his behavior needs some huge adjustments. I'm trying to focus on making his behavior better now that he has some control over his seizures. I know this is the best time to teach him stuff. The biggest problem I'm having though is that he doesn't seem to be interested in learning proper behaviors or proper manners unless it has something to do with the cartoons he is interested in. His biggest behavioral downfall is that he is constantly hurting people when ever he tries to play or he purposely hurts his siblings. It is very frustrating to go through this alone because his father works a lot of hours right now. And I don't have family here in the same town. They all live about 4 hours away from me. I'm still waiting for him to get behavioral therapy through the regional childrens center. We've been waiting for about 4 months now. I'm thinking of putting him into a low grade martial arts so that he has somewhere to exert his energy and to learn responsibility and obedience and respect and self control.....at least I hope this will work this way. His doctor is all for this martial arts thing. He is very supportive of this decision.
My husband and I have decided not to do the ketogenic diet because of his seizures being controlled for now. If we had to go this way with our son, then this will be our last resort. I hope that this type of news holds hope for some of our other parents out here. My family has gone through the last 6 or 7 years trying to find the right combination of meds for our son and trying to find the right doctor. It has been the biggest strain on our family because for a long time, we felt that we were living in the doctors offices. He is doing better in school as well right now. Still a lot of trying times.