Saturday, December 27, 2014

Seizures in the Down Syndrome Population: Information and Natural Treatment

How common are seizure disorders in the DS population?

Studies estimate that about 5 to 10% of people with DS have seizures, but in children with DS, approximately 1 to 13% do, with infantile spasm (IS) being the most common seen in the first two years of life. (1) Although the incidence of IS is similar between children with DS and neurotypical children, the diagnosis of seizures in children with DS doesn't happen as quickly as it does in the typical population. (2) That's why it's important to educate yourself so that you can recognize the signs and be prepared to advocate for your child, just in case.

What is a seizure and what does it look like?

The brain temporarily loses control of the body during a seizure. Instead of it sending a meaningful message to the body, it sends a "nonsense message" or a sudden surge of random "electrical activity," in a pattern of no particular usefulness, that takes over the brain for anywhere from one or two seconds to hours.  For children with seizures, most are the type associated with infants/toddlers and fever; these are short and rarely cause health problems or lasting side effects. However, if a person has more than one seizure not associated with fever, then the condition is called "epilepsy." (1)

Types of seizures
Petite Mal
Infantile spasms
An IS many not affect the infant's state of consciousness. It can look like a quick drop of the head and/or shoulders if the baby is sitting or standing up. (1) But they do show up differently so are categorized into three subtypes (flexor, extensor,and mixed flexor-extensor) based on what body positions they are in and the patterns of muscle involvement during the seizure.
Flexor spasms involve bending of the neck, trunk and extremities, resulting in jack-knifing at the waist and a self-hugging motion of the arms.
Extensor spasms consist of extension of the neck, trunk and extremities.
Mixed flexor-extensor spasms involve combinations of the above. While often confused with myoclonic or tonic seizures, spasms represent a distinct seizure type. (3)
Absence seizures
Absence seizures involve brief, sudden lapses of consciousness. They're more common in children than adults. The child may look like he is staring into space for a few seconds. This type of seizure usually doesn't lead to physical injury.

An indication of a simple absence seizure is a vacant stare, which may be mistaken for a lapse in attention that lasts 10 to 15 seconds, without any subsequent confusion, headache or drowsiness. Signs and symptoms of absence seizures include:
  • Sudden stop in motion without falling
  • Lip smacking
  • Eyelid flutters
  • Chewing motions
  • Finger rubbing
  • Small movements of both hands
Absence seizures generally last 10 to 15 seconds, followed immediately by full recovery. Afterward, there's no memory of the incident. Some people have dozens of episodes daily, which interfere with school or daily activities.
A child may have absence seizures for some time before an adult notices the seizures, because they're so brief. A decline in a child's learning ability may be the first sign of this disorder. (4) For possible natural treatment of absence seizures, see this article.
Drop seizures

In atonic (head-drop) seizures, the eyelids may droop, the head may nod and the child may drop things and often falls to the ground. These seizures are also called "drop attacks" or "drop seizures." The child usually remains conscious. These seizures typically last less than 15 seconds. (5)

Reflex seizures
Reflex (myoclonic, "startle") seizures are a type of reflex epilepsy in which seizures are provoked by loud noises or sudden surprises. Most patients with startle epilepsy are only sensitive to one sensory modality (i.e. temperature, taste, sound, pressure). However, it is the unexpected nature of the stimulus rather than the sensory modality that characterizes startle epilepsy.
Children with startle epilepsy usually have static cerebral lesions and developmental delay. Many of them are hemiparetic, meaning half of the body is partially paralyzed, and it is the weak side of the body that is primarily involved in the startle seizures. Startle epilepsy is often associated with disorders such as infantile hemiplegia, Down syndrome, anoxic encephalopathy and cortical dysplastic lesions.
These seizures usually last less than 30 seconds. The seizure begins with a startle response, followed by a brief tonic phase. Children sometimes fall to the ground and experience clonic jerks. Responsiveness to the stimulus decreases as a result of repeated exposure to the stimulus. Spontaneous seizures also occur in people with startle epilepsy, but are infrequent in most cases. (6)
Grand Mal
Another type of seizure is the generalized "tonic-clonic" seizure; this type of seizure involves the whole body, with stiffening of the trunk and jerking of the extremities, followed by a period of sleepiness. This is what people usually think of when they think of seizures.
Possible signs and symptoms of grand mal seizures:
  • Aura. Some people experience a warning feeling (aura) before a grand mal seizure. This warning varies from person to person, but may include feeling a sense of unexplained dread, a strange smell or a feeling of numbness.
  • A scream. Some people may cry out at the beginning of a seizure because the muscles around the vocal cords seize, forcing air out.
  • Loss of bowel and bladder control. This may happen during or following a seizure.
  • Unresponsiveness after convulsions. Unconsciousness may persist for several minutes after the convulsion has ended.
  • Confusion. A period of disorientation often follows a grand mal seizure. This is referred to as postictal confusion.
  • Fatigue. Sleepiness is common after a grand mal seizure.
  • Severe headache. Headaches are common but not universal after grand mal seizures. (7)
Why be concerned about seizures?

Seizures can cause brain damage. Regressions (loss of previously acquired skill) can occur. A decline in a child's learning ability may be the first sign of the more subtle type of seizures -- let that be the last sign!

What are options for seizure treatment?

A Review of Traditional and Novel Treatments for Seizures in Autism Spectrum Disorder: Findings from a Systematic Review and Expert Panel Richard E. Frye,1,* et al, is an excellent study that has a lot of good information on different treatment methods including some ways to help recover damage done. It explores the use of  l-carnitine, multivitamins, and N-acetyl-l-cysteine in mitochondrial disease and dysfunction; folinic acid in cerebral folate abnormalities and early treatment with vigabatrin in tuberous sclerosis complex; magnesium with pyridoxine, omega-3 fatty acids, the gluten-free casein-free diet and low-frequency repetitive transcranial magnetic simulation; Zinc and l-carnosine as well as Homeopathy and Neurofeedback. (8)

As mentioned in A Review, seizures can also be related to cerebral folate deficiency, which I have written about in a previous post. Jett does not have a seizure disorder, but his little brother, Oliver, suffered seizures while undergoing a medically-induced coma in NICU, so I've researched how to protect the brain from and recover from seizures and am implementing these strategies for Oliver. 

Not discussed in the above article is the use of curcumin to help with major seizures. See:
Protective effect of curcumin against seizures and cognitive impairment in a pentylenetetrazole-kindled epileptic rat model." In this study, the results indicate that pretreatment with curcumin improves seizures, oxidative stress and cognitive impairment in PTZ induced in rats. These results thus suggest the potential of curcumin as an aid in epilepsy treatment both to prevent seizures as well as to protect against seizure induced memory impairment. (9)

Also see the Effect of Curcumin on Sub-Therapeutic Doses of AED’S And Long Term Memory
In Mice Induced GTC Type of Seizures in Rats.

Check out these pubmed articles for information on bacopa for seizures.

At 16 months old, Oliver is on curcumin, l-carnosine, bacopa, folate, B12, magnesium, zinc and fish oil.
But super-sleuth mom, Anne Holtz, actually found another way to stop her son's seizures! 
Here is her candid story:

Treating Infantile Spasms (Benign Myoclonic Seizures) Naturally: Our Journey
by Anne Hoelz

We have a five and a half year old son who has Down syndrome. He is the coolest, cutest little boy in the world! Okay, I might be a little biased, haha. He definitely is very naughty at this age! Anyway, let’s get on with our story . . .

Our son, Kaiden, developed Infantile Spasms (IS) right around seven months old, after some health issues relating to his prematurity and I believe, the vaccinations he received at his six-month well visit. I have a theory – well, I have lots of theories – but I feel that he should not have been vaccinated since he was unwell at that visit.

Kaiden enjoying a boat ride.
One of the vaccinations he received was the DTAP vax – there is a correlation between infants of that age receiving that vaccination and developing this particular type of seizure (10)One of my theories is that the DTAP caused brain inflammation, which possibly lead to Kaiden’s IS. I say "possibly lead to" because his seizures are also somehow related to food. I don’t know for sure if the DTAP played a role or not – maybe the DTAP caused brain inflammation that led to his food sensitivities; I really don’t know.  In the years since I’ve done my initial research, an interesting thing has come to light: studies done regarding the SCN1A mutation and infantile epileptic encephalopathies, which suggests the genetic mutation could be responsible (11). We have not had Kaiden genetically tested for anything other than Down syndrome.

Kaiden received breastmilk as his main source of nutrition until that 6 month well visit, when I was instructed to start him on solids whether he was ready for them or not. At that time, I was already holistically minded, but still bringing him to a western medicine pediatrician. When the seizures started, I noted that both carrots and sweet potatoes aggravated the problem. I set up tests: I tried both foods separately on three different occasions, with the same result = increased seizure activity. 

The neurologist we saw was supposed to be “the best” and the doctors told us how lucky we were that he decided to see Kaiden, since he was nearing retirement and not taking new patients anymore. Oh great, how wonderful, I think to myself. Full of optimism, we visited the neurologist. Now here’s the thing: neurologists aren’t nutritionists. When I brought up my findings regarding the connection between sweet potatoes, carrots and Kaiden’s seizures, the neurologist flat out said “food doesn’t have anything to do with it.” He didn’t care about my observations and wouldn’t listen to anything I said. In fact, in his official report to Kaiden’s pediatrician, he wrote “I doubt an underlying metabolic abnormality.” He wasn’t just misinformed about nutrition – he was also misinformed about IS. (So much for being “the best”!) 

He told us how lucky we were that Kaiden had DS, so the seizures wouldn’t affect him cognitively since he would already be cognitively delayed. Basically, that we had nothing to worry about and even if he wasn’t treated, he might just outgrow the IS in a few years. Oh so wrong. SO WRONG. I knew the seizures were affecting him cognitively. He’d completely changed from a happy active baby to, as another DS with IS mom put it, a "zombie baby." The neurologist wanted to use topamirate, and told us it could cause permanent vision damage. (12) Armed with what “knowledge” we were given by the neurologist, we felt comfortable treating holistically rather than giving Kaiden anti-seizure meds that had possible permanent side effects.

As a more holistic approach, the neurologist recommended we start Kaiden’s treatment with Vitamin B6 (13). And, unfortunately, got nowhere. By that time, Kaiden was having approximately six clusters of seizures each day, with the clusters lasting anywhere from 10-45 minutes and then he’d scream and cry after each spasm. I wanted to try an even more holistic route so we chose Native Remedies Epi-Still (14) and Triple Complex Nerve Tonic (name has since changed to Triple complex Calm Tonic: (15). Together, they reduced Kaiden’s seizures to 4-10 single spasms per day. In doing more research (I was eating, breathing and sleeping research!) I also decided to give Kaiden some OTC calcium to help support his nervous system. It didn’t reduce his seizures, but we saw such a dramatic result overnight. He was so much more active, alert and loud – this is when we started looking into TNI (Targeted Nutrition Intervention).

When we ran out of the Native Remedies supplements, we moved to Dr. Christopher’s Ear & Nerve Tonic (16 - this is an info only link, they do not sell to the public, but their products can be purchased on just about any herbal site and on Amazon).  His seizures didn’t lessen in frequency, but rather in severity, in that some were barely noticeable. He would have some though, that would lock his body up for a few seconds and it would take a bit for him to snap out of it when it was over. The other benefit we saw with the Ear & Nerve Tonic was a HUGE increase in Kaiden’s balance!

Now, ever since the carrots and sweet potatoes early on, I suspected food was playing a role in his IS. I kept both seizure and food logs, looking for a connection. Kaiden was falling further and further behind developmentally and everyone from doctors to family and friends said it was “just DS” and that I needed to expect it. But Kaiden would have lucid moments where he’d do normal baby things – sometimes it would last minutes, sometimes maybe an hour. I knew there had to be more going on and my intuition strongly said food HAD to have something to do with it. 

Problem was, I wasn’t taking into account what I was eating. Kaiden was still getting my breastmilk, and it wasn’t until I ate an eggplant dish for the first time and saw how his now-reduced seizure rate skyrocketed, that I found another connection. Then a few months after that, I ate a good helping of green peppers (I had ditched green peppers in Kaiden’s early months - pre-seizures - as they gave him a rash via my breastmilk) and his seizure rate skyrocketed again. It took me a few days to figure that one out – I literally walked around the house saying “What the F@#)$*^% do green peppers and eggplant have in common that he reacts so badly to them?” And Google gave me the answer: they are both nightshades. 

Nightshades are potatoes, tomatoes, all peppers – sweet and hot, tomatillos, ground cherries, eggplant, paprika, goji (wolf) berries, etc. Hardly a meal went by in our house that didn’t have nightshades in it! I cut out all nightshades from both my and Kaiden’s diets and within a couple days saw his seizure rate drop to 2 – 3 seizures per day. A few days later I ate some nightshades (tomato, mayo with paprika) and his seizure rate increased. Eliminated nightshades again, saw the IS drop again. Then ate them again (mustard with paprika) and watched his seizure rate go up again. Ding, ding, DING we have a WINNER!! I eliminated nightshades completely and within a week, his seizures were completely gone. GONE!

But eliminating the seizures was, in my opinion, only a side effect of eliminating nightshades: Kaiden’s development began to FLY! In three short weeks, he’d gained three to six months of development. By six weeks, he’d gained 9 – 12 months in development and continued learning. My theory is that the nightshades overloaded his nervous system so much that his brain shut it down.

Now, four and half years later, I think I know why carrots triggered his IS – carrotatoxin (falcarinol), but I still have absolutely no idea why sweet potatoes did too.

I wish I could say that stopping the seizures was the end of the experience, but they robbed Kaiden of his speech. It had been developing normally, but then with the seizures, he lost everything except vowel sounds. We waited a while to see if it would come back on its own given how well his other development was going, but no such luck there. With omega oil supplementation, I can tell that his communication has exploded and he has gained some consonants back, but it is still not words, or is even close to words. I had to push the school system to recognize that he has both speech and motor apraxia – having both of those, expressive communication is extremely difficult for him. We’re now working with a speech device and program he’ll be able to use for the rest of his life, if he is never verbal.

Will this method of IS treatment work for your child? I honestly don’t know. It might, it might not. I do believe brain inflammation and the buildup of nightshades’ glycoalkaloids both played a significant role, as well as what carrots and sweet potatoes put into him early on. After eliminating nightshades from my diet for Kaiden, I found I was sensitive to them, too. But not everyone is sensitive to nightshades. I’m certainly not sensitive to carrots.

My point with all of this is – doctors don’t know everything. Even specialists who think they have all the answers can clearly be wrong. Doctors are not nutritionists. Nutritionists can be wrong, too. Follow your gut; intuition is rarely wrong. If the “specialists” aren’t willing to work with you, find a doctor who will. They don’t have to be a specialist; they may be willing to learn right along with you. Don’t let anyone tell you it’s “just DS”. Metabolic disorders can be treated; it’s just a matter of finding what works for your child’s individual needs.

Our journey has been a long one, and it’s still going on. Inspired by Kaiden’s needs, I wrote a paleo cookbook called Cavemom’s Cooking and Volume 2 is currently in the works! If you’d like to read more about us, please visit my blog at The greenchild Chronicles, and our introductory post at The greenchild Chronicles Introduction.

Other foods to avoid

There was a 2.6-fold higher rate of febrile seizures [4.2% versus 1.6%, OR = 2.6, 95% CI = 1.3-5.3], a 2.1-fold higher rate of epilepsy comorbidity [3.6% versus 1.7%, OR = 2.2, 95% CI = 1.1-4.7] and a 4-fold higher rate of simple partial seizures [1.2% versus 0.3%, OR = 4.8, 95% CI = 1.0-23] in the autistic children fed soy-based formula. See Soy infant formula and seizures in children with autism: a retrospective study. Westmark CJ. (19)

Further Reading

Complementary and Alternative Therapies for Epilepsy
The book is edited and co-authored by Dr Orrin Devinsky, a neurologist at NYU, one of the top epileptologists in the country.

Cavemom’s Cooking a paleo cookbook inspired by Kaiden's story, written by Anne Hoelz.

  8. A Review of Traditional and Novel Treatments for Seizures in Autism Spectrum Disorder: Findings from a Systematic Review and Expert Panel Richard E. Frye,1,* et al
  9. Protective effect of curcumin against seizures and cognitive impairment in a pentylenetetrazole-kindled epileptic rat model."
  19. Soy infant formula and seizures in children with autism: a retrospective study. Westmark CJ.