Under “Stuff Dave Doesn’t Like” is the rare form of strabismus (eye misalignment) called Brown’s Syndrome. After my daughter was diagnosed with Brown’s when she was a 1 yr old, it took three pediatric ophthalmologists (including one who was world-renowned and a total dud) and a LOT of reading before I felt like I understood the condition, treatment options and potential implications.
First and foremost, I’m not a medical doctor. All the information on this page is taken from other resources and translated into non-medical English.
Nothing you read anywhere online or in a book can substitute for medical care by a pediatric ophthalmologist.
Now that I got that out of the way, here are a few high-level suggestions:
- Don’t freak out (like I did). A Brown’s diagnosis doesn’t by itself necessarily mean that your child is going to have vision problems. It’s possible that the condition will be mostly cosmetic. I say “mostly” because it seems like even mild cases of Brown’s still leads people to raise their heads slightly more than most people when looking up at something. It’s their way (either purposely, subconsciously or uncontrollably) of compensating for the condition.
- You must find a pediatric ophthalmologist to evaluate your child. Not an “adult” ophthalmologist or one who kinda-sorta knows about kids, but one who has trained in evaluating and treating children. And for God’d sake, don’t think an optometrist is going to be of any help. If this requires a 3 hour drive or an airplane flight, so be it.
- Shop around to find the right doctor. By “right”, I mean one who works well with your child, whom you feel comfortable with and who provides you with a clear plan of action (even if the plan is “wait and see”). I went to three very well-qualified doctors before settling in to the one that I felt was best. Ironically, the one I chose actually didn’t identify my daughter’s Brown’s right off the bat, because I was looking for an impartial 2nd opinion and I didn’t want to taint the diagnosis – so I didn’t raise any concern as I had with the first doctor. However, by “hiding” the symptoms, I kept the doctor from spotting a rare condition that was not impacting my daughter’s vision. Once I came clean, the doctor readily identified the condition and did a much better job explaining the situation, potential outcomes, treatment options and discrepancies between other doctor’s treatment opinions. The first two doctors that we saw gave opposite treatment opinions, so I got a 3rd opinion – not only to break the tie, but more importantly to hear a consistent explanation of why to pursue a given treatment and/or why to avoid another. Doctors 2 and 3 were in good agreement, so I ditched famous surgeon #1 and went back to doctor #2, who just had much more experience than #3 and who seemed more thorough.
- A “good” pediatric eye exam should be a somewhat lengthy and complicated affair. Lengthy may only be 15 minutes due to children’s patience, but the doctor will be working very fast and doing all sorts of things – vision tests with screens or videos, flashing lights, moving a paddle back and forth over each eye, moving a pen around while holding the child’s head still, looking at their eyes with prisms, using weird 3D books and glasses where the child automatically tries to grab a picture that appears in 3D to them, and dialating the eyes if it has not been done within the past year. Since kids can’t communicate well, a good doctor should try every trick in their bag to learn as much about the child’s vision as possible.
- Do every thing you can to get your child to try to use his/her eyes in the uncomfortable position (looking up). Brown’s may be one of the reasons my daughter hated tummy time and crawling. In fact, she only crawled for a couple months, preferring to roll around until she started walking at a very late 20 months. Use both sides of your lap when reading books, sit in different positions with respect to TV screens, even put the child to bed on alternating ends. Most importantly, not only should you not avoid situations whee the child must look upward – you should create them. For us, feeding was one easy opportunity – fly that spoon way up above their head. You’re trying to work and stretch the “tight” tendon that is responsible for Brown’s.
- Head tilt might be primarily due to your child’s Brown’s, but it might not be. Many children suffer from torticullis, which is a muscular issue with the upper torso and neck muscles. Ironically, my daughter’s head tilt seemed to be due to both conditions. So, your pediatric ophthalmologist should communicate with a pediatric physical therapist (PPT here, not a common acronym). Yes, another specialist – and the PPT is one of the most difficult professions to schedule. Many have months-long waiting lists. Dont’t waste any time – get on multiple waiting lists, but more importantly – argue your case by writing the therapist a letter telling your child’s story. PPT’s review cases and pick the ones who really need help and who will likely need several months or years of treatment. They *hate* worried parents who’s children are one month behind in a milestone and who will disappear once said milestone is reached next month. Tell them that you’re working in conjunction with an ophthalmologist and even try for a referral from the eye doctor instead of your pediatrician.
- Watch out for pediatric ophthalmologists who are primarily just interested in doing surgery. Surgery is how they make the big bucks. In my unprofessional experience and untrained research, it seems like most doctors will avoid surgery in children (especially under about 4-5 yrs of age) unless they’re having vision problems. In other words, doing surgery to correct Brown’s in order to allegedly avoid future vision problems doesn’t make sense. If the child’s vision is developing well, then doing “preemptive” surgery runs too much risk of messing up the child’s visual development. Here the doctors are concerned about (1) focused vision, being able to see things at the right distance, (2) alignment in straight-ahead gaze, and (3) development of stereo (binocular) vision, which requires the eyes to work and move together. The first issue is where they try to figure out if a child can actually see well; not easy if the child can’t yet speak. The doctor may try to show the child something funny on a distant screen to see if the child reacts. If a child can say a few words, then they will show icon-like pictures of common objects to see if the child can identify them. Item (2) is really where they separate Brown’s from other eye alignment conditions, and it also relates to the severity of the Brown’s. If the eyes are aligned in the “neutral” position (looking straight ahead) and don’t stray from alignment until the eyes try to move “fairly” far from this neutral position, then the doctor may be happy. “Fairly” is defined by the doctor! Item (3) is very important – this is where the doctors moves things around and watches to see how the child’s eyes are working together. The reason that this is so important is that the connections between a child’s eyes and their brain develops irreversibly during their first few years of life, after which time these connections “fuse” and generally cannot be changed. A cautious surgeon will be worried about interfering with this process.
- Become well-informed about all the various surgical options and the true likelihood and repercussions of under- or over-correction. The only thing worse than putting your child through surgery is doing it a second time. Ask for not only the specific surgeon’s or facility’s success rates, but also the success rates of the same procedure nationally. Hint: lower national success rates are due to less-experienced surgeons. If the national rates are higher, then go elsewhere!
- Don’t get your hopes up if the decision is to wait and see. In cases where Brown’s is congenital (present from birth, even if not apparent until later) and not “acquired” (due to an injury – a head impact or eye injury), it usually doesn’t not go away entirely. It’s not well-known how much the severity of Brown’s may improve over time, but there are many cases where it becomes slightly better over many years – often to the point where it’s only a mild cosmetic concern. The problem is that after a certain point, Brown’s becomes a non-issue, so the parents stop bringing their kids back to the doctor, so most improvements are never documented. Hence, for the benefit of mankind, go back to your ophthalmologist once in a while even if things are hunky dory.
- While I would not advise going against the advice of your ophthalmologist, educate yourself and take the initiative to ask them what they think of another course of action. You may be surprised that a doctor may not be strongly tied to their own recommendation! Doctors are often on the fence themselves, but they are paid to make decisions. You may both be pleasantly relieved to seek out another opinion or just wait-and-see.
So now I’ve given you my 10 best pieces of advice!
Now for some general info:
- Brown’s Syndrome is a rare form of eye misalignment (strabismus) where one eye has difficulty looking upward and/or inward (towards the nose); in more severe cases, the affected eye also moves slightly downward (second image below first set)
- Brown’s accounts for 1 in every 400-450 cases of strabismus. Since all forms of strabismus together occur in about 4% of the U.S. population, this means Brown’s occurs in less than 0.01% of people!
- Brown’s affects females about 50% more than males (3:2 female:male occurrence).
- Brown’s is seen more often in the right eye (55%) than in the left eye (35%) or in both eyes (10%).
- About 35% of Brown’s cases occur in families where another family member has amblyopia (poor vision due to the brain-eye nerve connection) or strabismus, so there’s a genetic connection.
- Often the “higher” moving eye is mistakenly thought to be the affected eye, but it is actually the lower eye that is affected; this eye is less mobile than the other, its movement being restricted by a “tight” muscle/tendon.
- Brown’s is caused by a muscle/tendon (superior oblique) that isn’t moving as much as it should. Don’t worry about why.
- Surgical procedures generally are perform not on the muscle itself, but on the tendon at the end of the muscle near where it connects to the eye.
- The superior oblique is totally crazy because it stretches through a sort of “hook” structure above the eye and does almost a 180 degree turn. This amazing structure is probably why surgery for Brown’s is much more tricky and less successful than other strabismus surgeries.