Parents must make a proactive effort to reach out to teachers to make sure the needs of their child is being met. The teachers need a full understanding of any issues your child might face and how it will affect his learning and socialization with other kids in the classroom.

Here are some of the best tools we used:

You simply cannot assume that the school has trained it’s staff to handle the various scenarios that can arise when a child with epilepsy goes to school. As a parent, you become the educator to make sure your child is as comfortable as possible and all bases are covered.

I went to great lengths to make sure the school was perfectly clear of what to expect. We did up an individual education plan together that outlined my sons abilities academically, physically and emotionally. They were then able to meet his needs and tailor the lessons to his ability.

Adam was often very groggy or even physically ill while on the medication. It was a daily adjustment for the teachers. If you feel you need extra support, enquire about getting a teachers aid – even one that can be shared with another student. Our school had a couch in the classroom that Adam could rest on if he became tired. If that is not possible, ask them if you can bring in a beanbag chair or similar.

Adam also had behavior issues and short term memory problems. I had his doctor actually come to the classroom to talk to the teachers about what they could expect and how best to deal with temper. There was a system in place if he became angry or frustrated. There was a system in place to challenge him, then play time as a reward.

We made it a priority to have him interact with other kids as much as possible. They would even give him a rotating “buddy” that would help him. This was great because it gave the kids a sense of accomplishment and protectiveness over him instead of an attitude.

You want school to be fun, but not a babysitting service. Each child will learn at a different level depending on their seizure control, medications and other underlying conditions.

The best thing you can do is have great communication. The journal was fantastic and each day the teachers wrote down what he did, any problems or concerns and comments. I also wrote back what he did in the evening or any comments I had.

I also did a great podcast where I interview the Executive Director of the Center of Epilepsy and Seizure Education where we talk about supporting your child with epilepsy.

All the best to you and your child!
Arlene Martell
EpilepsyMoms.com

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

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

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

There are some important things I learned along the way that I think can help make your journey a little easier. It takes a little more work, but it can be done. I want to share these with you because most parents are overwhelmed and just need a little encouragement and direction along the way!

1. Don’t let the Guilt consume you
Every parent of a special needs child has guilt. If you’re feeling guilt regarding your child’s condition or feel you may have caused it, guilt over your decisions regarding their treatment, or guilt because you are unable to control your childs seizures, or any guilt at all, remember you are not alone. I recently did a podcast with Dr. Mittan and we talk about guilt at length. It will interfere with your ability to move forward so recognizing it and overcoming it is essential.

2. Don’t take the Criticism personally
People who do not understand your circumstance can be mean! They see something they are not comfortable with, or a bad behavour and they are quick to criticize. It can be hurtful and painful and has happened to me several times. Keep your chin up and let it go. Do not get into a debate with them. What I did was have little cards made up (the size of a business card). They simply stated “What you have just witnessed may have made you uncomfortable. My child has been diagnosed with _________ and does not always have the ability to act or say appropriate things and we are in treatment. If you would like to discuss this further, I would be happy to chat. call (name) at (xxx-xxxx). These can be modified in any way to suit your needs. They worked great.

3. Make time for other kids, spouse and yourself
This is huge and often overlooked when you are so consumed with your daily tasks. It is important to Keep things as normal as possible – have fun – go places – take short day trips. As a parent you will become overwhelmed fast so apply for respite. Someone will come into your home and watch your child so you can take a break, or they will take your child out.

It is important to keep both parents involved in the treatment and care of the child. Don’t try and go it alone – involve your spouse. Be aware that having a child with special needs places a huge strain on your relationship so you need to take time to date and spend quality time together without your child. It is equally important to make time for yourself – have lunch with a friend. Treat yourself to a spa treatment.

Take your other kids out – try not to put them on the back burner. They have just as many needs. Use the respite time to take them out and make sure they are praised for their accomplishments.

4. Read everything – Learn everything
It is really important to understand your child condition and to get the correct diagnosis. If you are incorrectly describing your childs seizures, your doctor might prescribe the wrong medication or treatment. Video tape the seizures for your doctor and do your own research. Early intervention is the key. The Internet will open a whole new world of information for you. Read other peoples blogs and experiences.

5. Go with your gut
Easy to say and hard to do – if you are not happy with what is going on, time to find your inner strength and face each challenge head on. Challenging your doctor, or switching doctors is not easy but could be in the best interest of your child. Remember that if you are wanting to try an alternative treatment such as the Ketogenic diet, quite often the doctor will not tell you about these treatments or may tell you it is too difficult. You must be persistent and do not stop until you are happy. Keep the communication open and be the “sqeaky wheel”.

6. Be money smart
Be smart about money. You may need to budget just to pay the cost of medication, cost of various therapies and possibly rehabilitation or special diet needs. Having a special needs child can incur additional expenses that can be major. Find out if there is financial aid available from local, state and government agencies. Keep all receipts together and check with an accountant on how you can claim expenses.

7. Have a strong support group
The Internet is full of great support groups. These other parents will understand what you are going through much more than anyone else. Learn from them and ask questions. Ask for help from friends and relatives who are part of the child’s life. Join your local epilepsy society and get on their newsletter list.

Have a meeting and explain your childs condition and abilities to teachers so they have a better understanding and can meet your childs needs. One of the things I did was get a note from my pediatrician to give to the teacher – in fact when we were having issues, he came to the school and talked to the education team.

Teach every child to have self-respect and discipline. Some may feel that disciplining a special needs child sounds harsh but it’s vital. Set limits based on the individual child’s level and ability to understand.

8. Choose your doctor
Choose the best professionals available. It is extremely important to get a BIG binder and start to Keep records. Record the diagnosis, and change if any. Write down each treatment, therapy, tests, appointment, specialist, therapists, facilities, and prescriptions. Record what worked, and what didn’t. Keep an accurate seizure record. Make a list of seizure triggers, anything that happened within two days of the seizure. Ask the doctor why they are pursuing the treatment and what the benefits are. Write it down. Allow a reasonable time line for any new treatment to work. Be involved.
It is VERY easy to forget so a binder is essential so you can see at a glance the changes that are being made.

9. Journal your feelings
Writing down your feelings can be very theraputic. You will need to accept your child condition and love them as they are, not as you wish they might become. Take time to apreciate what makes your child special and celebrate each small accomplishment.

10. Grieve, get mad, then get to work
There is a grieving process – we will grieve the loss of what we had hoped for our child. We will cringe as we watch younger siblings pass them in abililies. We will have a tendancy to overprotect and shield them from the real world.

Once we get through the grieve and accept the condition, most parents will go through a stage where they get angry. Angry at themselves, the doctors, pretty much anything. They want badly to lay blame on what has happened or let the guilt creep in. This is normal.

The next stage is to get to work and follow all the steps outlined above. Become your childs advocate and work hard to make changes. Be realistic. determine your child’s strengths and limitations. Don’t try to force your child beyond his or her ability. Remember, this is a journey and not everything will work and not all advice is right for you. Be patient, give lots of hugs and make some great family memories together.

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)