My Child has Seizures, Now What??
By Faigy Morgenstern
Seizures are not always the thrashing on the ground, foaming at the mouth, uncontrolled jerking that has been described to us in our First Aid course. Often parents will notice behavior which they suspect are just not normal. However they are unable to figure out why or what is making their child behave this way. It may be as subtle as a daydreaming kind of stare, a sudden arm, or leg jerk, a loss of consciousness sometime for only a few seconds, head-drops, or unexplained sleepiness. The child may not feel or know that anything strange has happened either. As soon as the seizure is over they continue on with whatever they were doing. This oftentimes leave seizures undiagnosed. If you have passed this point, and now your child has been diagnosed with a seizure disorder, these steps will guide you to get the best possible outcome.
1. Seek the expertise of a neurologist or epiloptologist (neurologist whose specialty is epilepsy). If your child has been diagnosed with a seizure disorder by your pediatrician or neurologist it is time to find a specialist in seizure disorders i.e. an epilotologist, or a neurologist that sees lots of epilepsy patients. They see many more patients with epilepsy, thus they are far more knowledgeable and experienced with seizure control, learning from the experience of their patients. It is okay to be under the care of a regular or pediatric neurologist, if they see lots of epilepsy patients.
2. EEG Monitoring: Insist on a minimum of a 24 hour EEG monitoring. Insurance companies will easily cover a routine EEG which may only be taken for a period of 20 minutes to an hour. If your child is not having any seizures at that time, the diagnosis will be negative, but certainly inconclusive. Optimum, is a 3 day EEG with video monitoring, where the neurologist can see the recorded. albeit sometimes subtle body movements happening at the time of a seizure. You need to know those subtle signs to be able to monitor his seizure activity. The EEG will also help diagnose the type of seizure your child is having, (generalized, complex, partial etc). It is important to know the type so that medication proven to work best for that type of seizure is prescribed.
3.: The EEG will diagnose and inform you what type of seizure's your child is experiencing. Your next step is to find the cause. Seizures generally are caused by a chemical, hormonal imbalance in the brain, or a physical abnormality in the structure of the brain tissue. A brain MRI will be able to pinpoint the latter.
4. There is a definite correlation between increased seizure activity and illness. Therefore, do anything possible to keep your child’s body has healthy as you can by optimizing their diet. This means eliminating junk food, such as sugars, white flour, artificial sweeteners, preservatives etc. Offer them food rich in fat, (yes the more fat the better as healthy brain tissue needs lot of it-coconut oil is the best) protein, whole grains, and lots of fruit & vegetables. Consider it a possibility for your child to have food sensitivity such as gluten, milk/casein, wheat, nut or allergy etc.
5. If your child's seizure is due to an underlining disease, disorder or syndrome seek out a specialist of that particular disorder too. A syndrome often comes with a host of other medical issues that this specialist can help you manage and stay on top of. Again their expertise is greater because of the fact that this is their specialty. They may know which medication often works best with this particular group of patients.
6. Just because one medication was helpful for another child, does not mean that it is the medication on choice for your child. Get a diagnosis of the type/s of seizures your child is experiencing and let your doctor help you decide which medication can be most effective for that particular seizure. There are many medications, but each works differently and some are more effective for certain types of seizures than others.
7. If your child is on one or two medications and his seizures are still not under control, it is not a good idea to try another medication before making sure that the current medication is at a therapeutic (proven dose that seizure control can most likely be achieved) level or maximum dose. Often just a small increase will be all that is needed to reduce or eliminate the seizures completely. Also bear in mind that your child is growing and gaining weight, so doses do have to be adjusted periodically to meet their new weight/height requirements. The body also may get used to the medication and need constant boosts to keep the seizures under control. Adding numerous medication with all their inherent side-affects is counter productive in the long run and may exacerbate rather than calm down seizure activity.
8. With medications, more is not often better. Dosages should be started low and increased slowly. Yes, it may take weeks or even months to reach a therapeutic level, but giving your child a dose that is too high can be the cause of more seizures and toxicity.
Ketogenic Diet: Unfortunately many children with seizure have tried numerous meds, but still can’t seem to get them under control. A medically proven diet (no this is not a fad), the Ketogenic Diet can be tried as a last resort. It is a diet with a high fat to protein and carb ratio. This is a complicated diet but surprisingly lots of children (and their moms) are willing to go along with it when they see that it keeps them well. The aim of the diet is for the body to produce ketones. The body goes into a state of ketosis when it is burning fat rather than carbs for fuel. Doctors have not figured out why the ketones in the blood circulating in the brain seem to keep seizures at bay. And the higher the ketone levels the better.
9. f you are wondering if this diet may be beneficial to your child, you can first try a Modified Atkins Diet (MAD) for a week or two. If you see that there is any, even a slight improvement in the duration, intensity or frequency of seizures you may be encouraged to explore and learn more about the ketogenic diet. The Atkins diet, has the same goal as the ketogenic, it is to get the body into a state of ketosis so your body burns its store of fat.
10. Keep your child on a strict diet of only protein and fats, and minimal salad greens. Absolutely no fruits, or carbs (breads, cereal, rice, grains etc) should be eaten. Even a tiny cheat will not allow ketones to develop so you need to be motivated and firm at this point. Measure his urine ketone levels after day 3. (Ketostix can be purchased over-the-counter in a pharmacy). If his level is Moderate try to get it even higher by adhering strictly to the diet for another day or two. Once his levels are high, determine is you see any improvement in your child seizure activity, cognition, mood etc. If you do not see any improvement the ketogenic may still be tried, although it may not work. Keep in mind that many children do not respond well on MAD but do have complete or lesser seizures on the Ketogenic Diet. The Ketogenic diet does allow for carbohydrates and all fruits and vegetables, however its ratio to fat must be strictly adhered to.
11. Some children on MAD actually become seizure free entirely. If you are seeing success on the MAD diet, keep it up for a while. Your child may not need to go onto the more restrictive Ketogenic. If your child shows improvement on the MAD, however is still not entirely seizure free, you should definitely consider the KetogenicI highly recommend an online support group at: Health.Groups.yahoo.com/group/ketokids and CharlieFoundationforum.org. Another indispensible online tool for creating meal is at Ketocalculator.com You will get ideas encouragement and help from other parents dealing with this diet.
12. Do seek the expertise of a nutritionist or alternative doctor, but not as a first line of defense. First get first rate medical attention for your child's seizure and then supplement that with alternative therapies (chiropractic, nutritional supplementation, kinesiologist etc.). They may be able to reduce side affects to medications and even give you a better understanding for the possible cause of seizures (food, chemical or hormonal imbalances).
If have tried numerous medication and your child still has seizures, often adding more and more medication to your child cocktail will often may not be of any use. It can even be the source of toxicity and increase the likelihood for even more seizures. It is time to move on.
Do reconsider trying the Modified Atkins Diet. If there is some improvement in seizure (shorter duration or less frequent, better focus & cognition) but still not full control, be encouraged to try the Ketogenic Diet. Yes it is difficult but it is do-able as can be attested by hundreds of parents. You must seek the expertise of a Ketogenic Dietician. Do not do this alone!
13. Brain (Epilepsy) Surgery. You have tried it all! This is a tough one. Brain surgery resects brain tissue where the seizure is originating from, known as the ‘hot spot’. This may be one spot, several spots or even a complete lobe. Your neurologist will first need to determine if your child can even be considered as a candidate for surgery. It all depends where that hot spot is located. Surgery will be ruled out if cutting away a part of brain will interfere with speech, movement or any other important body function. Some epileptic surgery does not remove any brain tissue, it only separates the right from left hemisphere to stop those seizures that ignite on one side and sparks off at the other side. Surgery is not a guaranteed cure. At best it will put epilepsy behind you, but there is the possibility that it may only lessen the severity or frequency of epileptic episodes This is a tough a serious decision, therefore make sure to get a reliable referral to a top surgeon and medical center. I highly recommend Rabbi Shuki Berman for Refuah Resources 718 437-7474. His knowledge of medical conditions is phenomenal. After reviewing your report and he will guide you to specific doctors who are top-notch in their medical expertise.
14. “My child's seizures are under control. I can finally relax” Not really! Keep up with periodic EEG’s recommended by your doctor. Your child may be experiencing extremely brief seizures, subclinical seizures occurring only in his sleep, or seizure episodes that you do not think are seizure related( stimming, head nods, spacing out or daydreaming). It is important to keep following up and making sure things are fine.
15. Autistic Spectrum Disorder and seizures can go hand in hand. There is a possibility for the autistic-like behavior to be reduced or eliminated when your child's seizures are under control. Many children with autistic-like behaviors are often encouraged to have an EEG just to be sure that there is no underlying seizure-like activity in his brain. They can exhibit many behavioral, sensory, language and social disabilities which can be, but is not always due to a seizure disorder.
Disclaimer: The above should not be taken as medical advice. For all medical information seek the expertise of a doctor . The information contained herein has been gathered from the many books I have read, the many parents I have spoken to, and from my best teacher-my adorable child!
Wishing you all the very best.
Faigy Morgenstern
P.S. Please feel free to contact me at (845)352-3475 or via email at