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.
"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?
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