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.
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