Treating Nystagmus in the Down Syndrome Population

What is Nystagmus?

Nystagmus is an involuntary "flutter" or movement of the eyes (like the actor in "The Crying Game"). Ten percent of people with Down syndrome have nystagmus, while in the typical pediatric population, it occurs in about .015 percent.

Jett seemed to be born with it--at least it appeared occasionally very early on, just a tiny bit in both eyes. I don't know exactly when it first started, but I always knew when to change his diaper because the flutter seemed to coincide with peeing. It turns out that other moms with babies with DS and nystagmus have also seen it appear when their child is doing something physical as well, like trying to lift his/her head during tummy time.  Jett's flutter never stayed for longer than a couple of seconds. His was a very fast, right to left motion, eventually only in his left eye. When he crossed his eyes to focus on something close, it stopped. And then, soon after his heart surgery, at 6 months old, it was in one eye constantly--a fast horizontal flutter. I was concerned, not only because it was giving him poor sensory input, much needed for learning, but because I didn't want an additional barrier between him and the people who might want to befriend him. So, it was important to me to fix it as soon as possible!

If you've looked online and asked your doctors--like I did--they all probably said nystagmus is incurable with 272 possible reasons as to why your child may have it. And the treatment mentioned probably included contact lenses and glasses, medication and/or surgery, none of which completely cure the problem.

"Incurable" is pretty meaningless to me, so I tracked down two people online who were able to cure their nystagmus -- one was a mom named Ali, with a child with DS and nystagmus, who used essential oils; and one was a man in China who found success through a Traditional Chinese Medicine (TCM) practitioner. I found a reputable TCM locally from a recommendation by Jett's pediatrician. She's a licensed Acupuncture Physician (A.P.) and a certified Diplomat in TCM on the national level. She used acupressure instead of acupuncture (since he was a baby) and she gave him the "Free the General" herbal tea blend (brand name Si Jin Boa). But it's probably not a one size fits all... She seemed to know right away what to do. I took him to her once a week (maybe twice a week, at first) and then once every two weeks. It took a while, but it gradually went away within about three months. And it has NEVER come back; he's almost four years old now. 

TCM absolutely worked for Jett. If you choose to go that route, make sure you find a good TCM practitioner. I would be happy to give you Jett's TCM's info (in the Orlando area) in case you are near her or if the one you find would want to correspond with her.

Where can you find a qualified TCM Practitioner?

The National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM) website has a national directory of all acupuncturists and TCM practitioners that hold NCCAOM certification. Since NCCAOM certification is a prerequisite for licensure in most states, this is a reliable and reputable source of information about practitioners who have met established standards of competency.

Do eye supporting oils and supplements work?

Ali used supplements that support the eyes to get results: Vitamin C, DHA, flax seed oil, Evening Primrose Oil, a small amount of vitamin E, cod liver oil, beta carotene, milk thistle and lutein. (Now I've found out that the DS population should avoid lutein, so I'd skip that one and use astaxanthin instead.) Ali says:

"Within two days, our son was back. He was able to focus on us mentally and visually. He began to play and vocalize better than ever. The nystagmus backed off and showed only when he looked far to the side and some days it didn't show up at all. I am still going to supplement him with some oils even as we give him a nutritional formula designed for DS kids. I'm hoping we can keep the nystagmus at bay."

I use many of these supplements for Jett's eye health including Vitamin C, DHA, vitamin E, fermented cod liver oil and astaxanthin.

Thiamine is the next one I will consider. Thiamine deficiency can cause problems with overall brain health, nystagmus and apraxia.  Thiamine appears to be possibly deficient in people with Down syndrome.

https://books.google.com/books?id=ZniNNDDXDjMC&pg=PA56&dq=thiamine+deficiency+and+nystagmus&hl=en&sa=X&ved=0CB0Q6AEwAGoVChMI2pKo2vSIyAIVxj4-Ch2ULwak#v=onepage&q=thiamine%20deficiency%20and%20nystagmus&f=false

https://books.google.com/books?id=ZniNNDDXDjMC&pg=PA79&dq=thiamine+deficiency+and+apraxia&hl=en&sa=X&ved=0CB0Q6AEwAGoVChMI456Om_WIyAIVTDQ-Ch0bQAWd#v=onepage&q=thiamine%20deficiency%20and%20apraxia&f=false

http://www.ncbi.nlm.nih.gov/pubmed/14514503
"Down's syndrome subjects had smaller corpus callosum areas and hippocampal volumes relative to age-matched healthy comparison subjects"

From one survey I did of 24 moms with children with DS who have nystagmus, two more cures were uncovered: one child's issue disappeared once thyroid treatment began and another's child went away with manipulation from a DO (Doctor of Osteopathy). Since hypothyroidism can lead to low muscle tone, perhaps fixing her child's thyroid also fixed the muscle tone which in turn cured the nystagmus. 

 
Can it just disappear?

Two parents said that it just disappeared after about two years. This description sounds like they had spasmus nutans, which usually occurs between 6 months and 3 years of age and resolves spontaneously between 2 and 8 years of age. Children with this form of nystagmus often nod or tilt their head to compensate for the eye movement. Their eyes may move in any direction. Personally, I wouldn't want to wait and see...

Can some supplements make it worse?

Several parents saw nystagmus appear when using anti-seizure drugs or when giving ginkgo. Discontinuing the products stopped this type of eye flutter altogether.

Can patterning, crawling or walking help?

The direct cause of nystagmus is instability in the motor system that controls the eyes. When nystagmus develops in early childhood (as it seems to in people with DS), it can be caused by a problem with the visual pathway from the eye to the brain. From what I could piece together, the type of nystagmus Jett had may have been due to a problem in his brain stem, not surprising for a child with DS. Since Jett was fresh out of heart surgery and could not yet crawl, I did patterning (manually mimic the motions of cross patterned crawling) with him which, from what I read, helps stimulate that part of the brain. It makes sense that his nystagmus worsened right when he should be learning to crawl, but was delayed. Some moms surveyed saw improvements through creeping (4 point crawling) and walking, which also targets that area. Mom, Jaime, commented:

"My child started crawling last June and has recently begun creeping like crazy. I kind of blame the majority of his progress on creeping and crawling. For sure, once he started crawling, [the nystagmus] improved. I know because I've been paying attention. Now, it's nearly undetectable. At his last eye appointment, the ophthalmologist commented on how hugely it had improved. I found that interesting because at our first appointment, the previous year, she had suggested that they rarely improve!" 

Another way to help trigger the brain stem in an older child, other than crawling, would be to chew gum at the back of the jaw. (A neurodevelopmentalist would be able to give more tips.)

Craniosacral therapy and nystagmus

Other moms are seeing improvements through using craniosacral therapy, exercising with vision therapy and patching the stronger eye. One child had a combination of muscle tightening/alignment and ear tube surgery. This child may have had inner ear inflammation, yet another possible cause of nystagmus. The flutter was lessened with each of these approaches, but none of these have completely relieved their child of the nystagmus. (Yet, anyway!) Most said it's now barely noticeable or appears only when the child is tired or sick.

Other types of nystagmus can be up and down (vertical) or move in a circular fashion (rotatory), but, interestingly, all of the moms reported their child has/had horizontal nystagmus in both eyes except for the children who had cataract surgery. Those children had it in the weakest eye, only when patched and both had nystagmus appear only after cataract surgery. Mom, Julia, explained it this way:  

"[The nystagmus was] made 97% better, at this point, by increased patching. The [Pediatric Ophthalmologist] suspects a "searching motion" due to immature neurological connections...."

Most moms said that it seemed to get worse when their child was tired, also indicating a possible muscle issue. As far as whether or not the nystagmus temporarily corrected itself while focused on something was split 50/50. 

Studies have shown that downbeat nystagmus (type of vertical nystagmus) may occur from a partial deficiency of the metabolic cofactors, magnesium and thiamine (B1).  And that a B12 deficiency has also been known to cause nystagmus. Our kids are usually deficient in all three of these vitamins, but I haven't encountered anyone with DS who exhibits it vertically.

Please feel free to comment to add your input to the survey. The questions are:
1) When did the nystagmus first appear? When did it disappear?
2) Is it in both eyes or one eye?
3) Is it horizontal, vertical or rotary?
4) Is it about the same speed, or changes speed (jerky)?
5) Is it worse when your child is tired?
6) Is it better or worse when your child focuses on something?
7) Have you noticed anything making it better or worse?
8) What have you done to treat it?


Sources

http://www.healthline.com/galecontent/nystagmus#2

http://www.cancercare.lahey.org/Departments_and_Locations/Departments/Endocrinology,_Diabetes_and_Metabolism/Ebsco_Content/Hypothyroidism.aspx?chunkiid=100682 

http://archneur.jamanetwork.com/article.aspx?articleid=580158

http://teddybrain.wordpress.com/2013/01/16/what-nystagmus-can-tell-you-in-neurology-clinical-approach-to-nystagmus/

http://www.whale.to/w/b12.html



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Prozac Cures Lazy Eye!

Scroll to bolded text.

By Jonah Lehrer
July 6, 2008

PROZAC IS ONE of the most successful drugs of all time. Since its introduction as an antidepressant more than 20 years ago, Prozac has been prescribed to more than 54 million people around the world, and prevented untold amounts of suffering.
But the success of Prozac hasn't simply transformed the treatment of depression: it has also transformed the science of depression. For decades, researchers struggled to identify the underlying cause of depression, and patients were forced to endure a series of ineffective treatments. But then came Prozac. Like many other antidepressants, Prozac increases the brain's supply of serotonin, a neurotransmitter. The drug's effectiveness inspired an elegant theory, known as the chemical hypothesis: Sadness is simply a lack of chemical happiness. The little blue pills cheer us up because they give the brain what it has been missing.

There's only one problem with this theory of depression: it's almost certainly wrong, or at the very least woefully incomplete. Experiments have since shown that lowering people's serotonin levels does not make them depressed, nor does it worsen their symptoms if they are already depressed.

In recent years, scientists have developed a novel theory of what falters in the depressed brain. Instead of seeing the disease as the result of a chemical imbalance, these researchers argue that the brain's cells are shrinking and dying. This theory has gained momentum in the past few months, with the publication of several high profile scientific papers. The effectiveness of Prozac, these scientists say, has little to do with the amount of serotonin in the brain. Rather, the drug works because it helps heal our neurons, allowing them to grow and thrive again.

In this sense, Prozac is simply a bottled version of other activities that have a similar effect, such as physical exercise. They aren't happy pills, but healing pills.

These discoveries are causing scientists to fundamentally reimagine depression. While the mental illness is often defined in terms of its emotional symptoms - this led a generation of researchers to search for the chemicals, like serotonin, that might trigger such distorted moods - researchers are now focusing on more systematic changes in the depressed brain.

"The best way to think about depression is as a mild neurodegenerative disorder," says Ronald Duman, a professor of psychiatry and pharmacology at Yale. "Your brain cells atrophy, just like in other diseases [such as Alzheimer's and Parkinson's]. The only difference with depression is that it's reversible. The brain can recover."

Given the prevalence of depression - more than 16 percent of people will suffer from a major depressive episode at some point in their lives - a more accurate scientific understanding of the disease is of immense value. In fact, this research is already being used to develop more effective treatments for the mental illness, some of which are currently in clinical trials.

The progress exemplifies an important feature of modern medicine, which is the transition from a symptom-based understanding of a disease - depression is an illness of unrelenting sadness - to a more detailed biological understanding, in which the disease is categorized and treated based on its specific anatomical underpinnings.

In the 19th century, the "fever" was a common medical illness. Of course, doctors now realize that a fever is merely a common symptom of many different diseases, from the flu to leukemia.
Likewise, when Richard Nixon declared a "War on Cancer" in 1971, scientists largely defined cancer in terms of its most tangible characteristic: uncontrolled growth leading to a tumor. As a result, every cancer was treated with the same blunt tools. Over time, of course, scientists have discovered that cancer is not a single disease with a single biological cause. Breast cancer, for instance, can be triggered by a wide variety of genes and environmental risk factors. Because doctors can look beyond the superficial similarities of the symptoms - all tumors are not created equal - they are able to tailor their treatments to the specific disease.

Neuroscience is only beginning to catch up. Thanks to a variety of new experimental tools, such as brain scanners and DNA microarrays, researchers are now refining their understanding of mental illness. In many instances, this means recategorizing disorders, (like DS as a neurobiological disorder) so that patients are no longer diagnosed solely in terms of their most obvious symptoms.
"We used to think there was only one kind of anemia," says Arturas Petronis, a scientist at the University of Toronto who investigates the underlying causes of schizophrenia. "But now we know there are at least 15 different kinds. We'll likely learn the same thing about many mental illnesses."
. . .
One of the first cracks in the chemical hypothesis of depression came from a phenomenon known as the "Prozac lag." Antidepressants increase the amount of serotonin in the brain within hours, but the beneficial effects are not usually felt for weeks.

This led neuroscientists to wonder if something besides serotonin might be responsible. Duman, for instance, began to study a class of proteins known as trophic factors, which help neurons grow and survive. Trophe is Greek for nourishment; what sunlight and water do for trees, trophic factors do for brain cells. Numerous studies had shown that chronic stress damages the brain by suppressing the release of trophic factors. In a series of influential papers published earlier this decade, Duman demonstrated that the same destructive hallmark is seen in depression, so that our neurons are deprived of what they need.

"The mental illness occurs when these stress mechanisms in the brain spiral out of control," he says.

Once that happens, the brain begins to shut itself down, suppressing all but the most essential upkeep. Not only do neurons stop growing, but the brain seems to stop creating new cells. A 2003 study, led by Columbia University neuroscientist Rene Hen, found that when the birth of new brain cells was blocked with low doses of radiation in "depressed" rats, antidepressants stopped working.

A recent study by Italian researchers, published in the journal Science, helps to reveal another mechanism by which antidepressants reverse the damage of depression. The scientists were interested in seeing if fluoxetine, the active ingredient of Prozac, could increase the potential of brain cells in the adult rat. They studied animals with severe cases of "lazy eye," a condition characterized by poor vision in one eye due to underdevelopment of the visual cortex. The scientists showed that fluoxetine gave brain cells the ability to take on new roles and form new connections, which erased the symptoms of the disorder. (Jett had nystagmus, which is an eye flutter and occasional eye crossing. Although western medicine says that nystagmus is incurable, his nystagmus is gone [maybe from acupressure and Traditional Chinese Medicine?]. He also had occasional eye crossing which rarely occurs now on Prozac.)

"The drug appears to make brain cells quite young," says Jose Vettencourt, a lead author. The scientists are currently repeating the experiment with humans, raising the possibility that fluoxetine will soon be used to treat lazy eye and related conditions.

"Even five years ago, this would have seemed like a very strange idea," Vettencourt says.
Duman's lab has demonstrated, in a paper published earlier this year, that physical exercise seems to stimulate the same regenerative pathways. Mice given access to running wheels not only showed reduced anxiety and stress, but also increased levels of the same trophic factors activated by antidepressants. When the activity of these trophic factors was blocked, the benefits of exercise disappeared. The mice stayed stressed, even when they were allowed to run on their wheel.

It is jarring to think of depression in terms of atrophied brain cells, rather than an altered emotional state. It is called "depression," after all. Yet these scientists argue that the name conceals the fundamental nature of the illness, in which the building blocks of the brain - neurons - start to crumble. This leads, over time, to the shrinking of certain brain structures, like the hippocampus, which the brain needs to function normally.

In fact, many scientists are now paying increased attention to the frequently neglected symptoms of people suffering from depression, which include problems with learning and memory and sensory deficits for smell and taste. (Common problems in autism and DS. Young autistic children are often treated with SSRI's to reestablish these pathways). Other researchers are studying the ways in which depression interferes with basic bodily processes, such as sleeping, sex drive, and weight control. Like the paralyzing sadness, which remains the most obvious manifestation of the mental illness, these symptoms are also byproducts of a brain that's literally withering away.
"Depression is caused by problems with the most fundamental thing the brain does, which is process information," says Eero Castren, a neuroscientist at the University of Helsinki. "It's much more than just an inability to experience pleasure."

This new scientific understanding of depression also offers a new way to think about the role of drugs in recovery. While antidepressants help brain cells recover their vigor and form new connections, Castren says that patients must still work to cement these connections in place, perhaps with therapy. He compares antidepressants with anabolic steroids, which increase muscle mass only when subjects also go to the gym.
"If you just sit on your couch, then steroids aren't going to be very effective," he says. "Antidepressants are the same way: if you want the drug to work for you, then you have to work for the drug."
Jonah Lehrer is an editor at large at Seed magazine and the author of "Proust Was a Neuroscientist." He is a regular contributor to Ideas.
© Copyright 2008 Globe Newspaper Company.

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