Epilepsy Moms Blogs

I was desperate to learn all about what could be triggering Adam’s unpredictable behavior. I was not sure if it was the medication he was on for his seizures, or a part of his autistic spectrum. Adam had epilepsy and autism so we had many challenges.

I attended a lecture that certainly taught me a lot – things every parent need to know.

The lecture was hosted by a local health network, and the guest was Dr. Lendon Smith. Dr smith was a pediatrician for over 50 years and had seen it all. His interest in how food affects a child started when his own child was a bed-wetter and the doctor told him that the child had a pychological problem and that it was the mother’s fault. As it turned out, his son was allergic to dairy and when the dairy was removed from the diet, the bed-wetting stopped.

He studied food allergies extensively and wrote many books on the subject before his death. My favorite book was called “Feed your Body Right”.

In Dr. Smith’s lecture he asked several questions which helped me identify some of Adam’s allergy symptoms. Here are some symptoms that Adam had, which point to a Magnesium deficiency:

1.Does he have trouble relaxing and going to sleep at night?
2.Does he have muscle cramps in his feet and calves?
3.Does he have trouble with excessive noise or seem uncomfortable in crowds?
4.Would he steal chocolate?

There’s more. I loved this stuff. For the first time I felt like someone understood me and that Adam’s bad behavior wasn’t my fault, or his!

See if you can relate to these questions:

1.Is he a Jekyll-and-Hyde type of person?
2.Does he have mood swings for no reason?
3.Does he have food cravings like milk, ice cream, wheat, eggs, Soya, corn, peanuts and would he almost kill to get them?
4.Did he have colic as a baby, ear infections, asthma, constipation or diarrhea, tonsillitis, strep throat, tonsillectomy and bed-wetting?
5.Does he have dark lower lids and circles under his eyes?
6.Does he snort or clear his throat a lot?

This group of questions indicates that there may be some hypoglycemia or blood sugar problem from eating sugar or eating something that they are allergic to. It is highly possible that a hyperactive child has food sensitivities, most commonly to dairy products. Once you take dairy products out of your child’s diet, it takes three weeks to get the dairy and the secondary chemicals from the dairy out of his system. Once his system is cleared of all diary products, he can have small portions of dairy foods every fourth or fifth day.

Something else I learned was that within 2 hours of eating a food the child is allergic to, many children get bright red ears. I found this to be an interesting observation.

Here is the recommended program for a child with food allergies or sensitivities:

•No dairy products
•No sugar
•No colored or impoverished foods (white bread, doughnuts, sugared cereals etc)
•Use fruit as dessert
•Drink water or non-sugared fruit juices
•Better if he eats small amounts frequently every 2-3 hours
•Add 1000mg of calcium and 500mg of magnesium daily
•Vitamin B6 – 50 to 100mg daily will help memory
•Vitamin C 1000mg daily makes everything work better
•If he is excessively thirsty or has ever had asthma or eczema, he might be genetically in need of extra essential fatty acids. Try Evening Primrose oil. (Essential fatty acids are needed to make the sheath around the nerve cells)

It takes about 3 weeks for this diet program to affect your child’s behavior, but by then your child’s teacher should notice that your child is no longer distracted by every sight and sound in the classroom. He should be less anxious and no longer exhibiting outrageous mood swings. Statistics show that 80 percent of the children who have the symptoms listed above usually respond favorably to this diet program, however it may not work for everyone. Try dairy removal first, then what removal.

For parents struggling with behavior issues, try these ideas before popping the increasingly popular ritalin.

Today so much more is known about allergies and dairy and wheat seem to be the biggest culprits. Read more about the wheat free diet here:

Warmly,
Arlene Martell

This has always been of interest to me and something I wanted to know more about. Why do 25% of kids with epilepsy also have autistic characteristics, and vice versa. I asked my pediatrician about this years ago and he emailed me a medical paper that talked about there being a link in the brain between epilepsy and autism and that sometimes when a child who is autistic suffers a trauma – the seizures will start.

With my son Adam, he developed the autistic tendancies at about 18 months to 2 years of age. He was bright and alert, but obsessive compulsive. He always lined things up continuously, he made lego structures well beyond his years that were completely symmetrical on both sides – they were amazing. He walked around the house pointing to and counting electrical plugs. He always wanted the green sippy cup and did not like to leave his routine. As he got older, his symptoms increased dramatically to full blown aspergers with little to no eye contact and extreme behaviour.

When Adam was four, my husband and I went out on a much needed date. We had Adam (4), Justin (3) and Shelby (1). We rarely went out and when my brother and his wife offered to babysit, we jumped at the chance. We were going to a movie and the kids were in their pj’s getting ready for bed when my husband joked to Adam “see you in a week!”. Adam flipped out and started to cry. I felt terrible leaving him. That night was Adams first Grand Mal seizure and start of our nightmare. A coincidence?

For years I worked on how to help Adam. I went to countless seminars. I tried herbs, chiropractic, essential oils, diet changes and studied food allergies. One of the professionals who made a lasting impact on me was Dr. Lendon Smith. He was a remarkable man who was a pediatrician his entire career – who focused on the characteristics of these kids. When I met him, he said “Let me tell you about Adam” – He knew that that traits were the same in these problem kids.

He said Adam is blond-haired, blue eyed, or red-haried freckle faced. He walks on his toes, he has ear infections, and has a Jekyll-and-Hyde personality. He nailed it. I paid attention. In a future podcast I am going to talk more about food allergies.

Today we have learned so much more about how gluten and casein free diets and how little changes can make a big difference.

There are strategies in place now that you can follow such as:

- Gluten free and casein free diet
- Investigating and removing food allergies and sensitivities
- Removing candida and other yeasts from the gut
- The importance of gut health and leaky gut syndrome
- Supplementation of vitamins, especially B6 and B12
- The importance of probiotics and the problem with antibiotics
- Glutathione – the body’s chief detoxifying agent which autistic children are often low in

Jenny McCarthy recently released a new book called “Healing and Preventing Autism… A complete guide“. She co-authored the book with autism expert, Dr. Jerry Kartzinel. This book is an essential read for any parent with a child diagnosed with autism or who suspects that their child could be showing signs of autism.

I strongly recommend this book to any parent who suspects their child is developing autistic tendancies. The earlier you start on treatment the better. These were some of the strategies we implemented with Adam and had huge success.

I wish you well.

Arlene Martell

No one could have prepared me for the journey into the world of seizures. For eight long years, it consumed my life and all my attention went in that direction. Now that my son is seizure free, I remember what our family went through, so I dedicate much of my time to helping educate other moms, shorten their learning curve, tell them the mistakes I made, and hopefully make their journey a little easier.

I learned alot and I am happy to share it. Much of what I learned I stumbled upon as there was no Internet or support to speak of when I needed it most. I spent many years in frustration and even anger. I was watching my dreams for my son disappear and did not know how to help him.

Even though each families story may be slightly different, there are many similarities and we can learn from each other.  It is an honor to mentor and encourage parents whose child may be newly diagnosed.  I want parents to know they are not alone.  I look forward to talking about a variety of topics that cover many aspects of epilepsy, treatment options, resources, stories and the emotional aspects that are rarely discussed.

As more treatment options become available, parents are learning to become more involved in their child’s treatment decisions so becoming educated is more important that ever.  Epilepsy is a balancing act. How a parent reacts to the challenge will directly impact their child, other siblings, spouse, educators and others who are a part of your child’s life. There are many challenges – and many rewards along the way.

My journey with epilepsy began in 1991 when my son Adam, then 4 years old, had his first seizure. Like most parents, it was the beginning of years of struggle to control seizures, constant doctors appointments, changing of medications 6 times, experimental drugs and terrible side effects. The discussion of surgery seemed like the last option. It was heartbreaking and there was a point when I truly wanted to give up hope.

Adam was diagnosed with Lennox Gastaut Syndrome. He had multiple seizure types including absence seizures all day long, tonic clonic 3 to 4 times a week, drop seizures and more. It was devastating to watch him turn from a bright happy little boy to a child who could no longer function and looked sad and depressed.  His prognosis was grim — continued seizures and progressive mental retardation. Adam is the oldest of 4 children and it was very difficult to watch as his younger siblings, one by one, caught up and passed him.

Along with epilepsy, Adam had Asperger’s syndrome, a form of autism. Although he could talk, he was extremely obsessive compulsive and anti-social. His world was in tumoil. He preferred to be alone and as his seizures increased, his abilities decreased. The side effects of the medication left him lethargic. He had stomach aches, leg cramps, mouth burn, thinning hair and his short term memory was gone making learning a challenge. He spent a lot of time throwing up and sleeping on the couch in his classroom.

Worse than all this – he became angry and violent and with a newborn in the house, he could not be trusted. He screamed for no reason, he could not leave the house because he would not find his way home 2 houses away. He could never be left with other children alone. In grade 3 he attacked his teacher who was sent to the hospital in an ambulance.  He was transferred to a school for children with behavior problems. Things just seemed to go from bad to worse. His life was out of control.

No one needs to tell me how hard this is. I have been through it all.

When nothing else worked –  I prayed. Within 3 days, my prayers were answered.  On TV, Dateline NBC did a special show on epilepsy and talked about a treatment, a high-fat diet called the Ketogenic diet that worked well on kids when medications failed.  I knew it was the answer we were searching for. About 3 months later, when Adam was 8 years old, we started the ketogenic diet. Within 3 days, the seizures stopped. It was like a miracle. Our hope returned.

That was 14 years ago – hard to believe. Once we got the seizures under control, we worked on the autism and found an equally effective treatment called Neurotherapy. In future blogs I will talk about both these treatments in great detail – the benefits, the downside, the controversy.

When Adam was eleven, I was co-founder of The Fraser Valley Epilepsy Society, later renamed The Center for Seizure and Epilepsy Education in B.C.  We produced much needed educational materials for schools, support for parents and workshops for parents and health care providers. We produced 4 well known epilepsy TV commercials, now viewed all over the world in different languages.  The society continues to thrive and now have a dozen or more PSA’s.

In early April of 2009, Adam turned 22. In 2005 he graduated from high school with his peers, after completing a life skills program. He looked so handsome. Although thriving in most areas of his life, there was some lingering damage to his brain from the many episodes of Status seizures.

I now work on a website dedicated to helping other moms. My site is called EpilepsyMoms.com and shares stories from other parents, a newsletter and free podcasts interviews I do on a variety of topics related to epilepsy. My life was changed forever, and I hope I can have a positive impact on yours by sharing what I learned.

Warmly,

Arlene Martell
White Rock, B.C. (Canada)