Pediatric Glaucoma
Chat Highlights
April 1, 2009

On Wednesday, April 1, 2009, Dr. Alex Levin, a glaucoma specialist at Wills, and the glaucoma chat group discussed "Pediatric Glaucoma".

Moderator: Tonight we are fortunate to be joined by Dr. Alex Levin, a specialist in pediatric glaucoma. Welcome, Dr. Levin.

Dr. Alex Levin: Thank you. I'm glad to be here.

P: Dr., Levin, are there many children with glaucoma around the world?

Dr. Alex Levin: Worldwide, the incidence of glaucoma in children varies. In some populations, such as gypsies and Saudi Arabia, the incidence is very high. Amongst North American non-immigrants, the incidence is inthe range of one per 4,000-10,000 children.

P: Do pediatric and congenital glaucoma differ in the age of onset?

Dr. Alex Levin: The term "pediatric glaucoma" refers to a wide range of different glaucoma disorders including trauma, eye inflammation, malformations of the eye, etc., as well as congenital and infantile glaucoma.

Moderator: That's quite a range, Dr. Levin. Is there a type you see most?

Dr. Alex Levin: That's what makes the field of pediatric glaucoma so unique. We previously published under the authors, including myself, - Taylor RH, Ainsworth JR, Evans AR, Levin AV an article entitled: The epidemiology of pediatric glaucoma: the Toronto experience. J AAPOS 1999;3:308-315, which goes through the frequencies and types of pediatric glaucoma. In general, pediatric glaucoma, following pediatric cataract surgery and unassociated congenital infantile glaucoma, are the most common.

P: Are children easier to treat for glaucoma, and are the results good?

Dr. Alex Levin: It's hard to define "easier". Perhaps I can best say that treating children with glaucoma is different than adult glaucoma in some ways and similar in others. Outcomes are complicated by the fact that in addition to treating the glaucoma we also have to ensure that the developing vision of a young child is unimpaired.

P: How is glaucoma detected in children?

Dr. Alex Levin: It depends on the type. In congenital.infantile glaucoma, the child often presents with a larger (stretched) eyeball, cloudy cornea, tearing, and aversion to bright lights. Sometimes glaucoma is picked up without any symptoms usually because we are screening the child because we know they are at risk. For example, we recommend checking a child's eye pressure at least once yearly after cataract surgery even if it means putting the child under sedation or anesthesia. What we don't want is the unfortunate and less common situation where the child is diagnosed because of poor vision, because then it is often too late to get the vision back.

P: How is pediatric glaucoma treated?

Dr. Alex Levin: Again it depends on the type of glaucoma and what treatment has already occurred. In congenital/infant glaucoma, surgery is the mainstay to start. In other forms of glaucoma we use similar medicines that are used in adults, and then surgery if the medicines fail.

P: One study I read had visual outcomes for kids with aphakic glaucoma that were all over the map: everything from no visible light detection to 20/20 vision. What do we really know about long-term prospects for our kids’ vision?

Dr. Alex Levin: It depends on many factors (sorry to keep repeating "it depends" but that is the complexity of pediatric glaucoma). Outcomes depend on how well the glaucoma is controlled, complications of surgery, age at which cataract occurs, whether one or both eyes are affected, and how successful visual development is encouraged by such techniques as patching a good eye to strengthen a bad eye.

P: Dr. Levin, you are mentioning cataracts quite often. Do cataracts and pediatric glaucoma often go together?

Dr. Alex Levin: The most common cause of pediatric glaucoma is cataract surgery (called aphakic glaucoma). Many syndromes of the eye have both cataract and glaucoma to start (e.g. congenital rubella). Cataracts can also be a complication of glaucoma surgery; that's why the Pediatric Glaucoma and Cataract Family Association (www.pgcfa.org) puts the two together.

P: My son takes one drop of Xalatan in his effected eye each night. Every now and then after a hectic evening, we forget to give him his drop. Can much damage happen to the optic nerve by occasionally forgetting one night of drops?

Dr. Alex Levin: Virtually none. The regular daily use of drugs causes a "steady state" drug level that takes more than one miss to knock down. In addition, optic nerve damage from glaucoma often takes weeks, months or years depending on how sick it is and how high the pressure is. Even if the pressure did go up after one missed drop, 24 hours is usually harmless (although still not advised, of course).

P: Are any forms of pediatric glaucoma genetic diseases?

Dr. Alex Levin: Most forms are genetic.

P: Could the mother have prevented this disease in pregnancy?

Dr. Alex Levin: There are two parts to the answer.

1. There is nothing a mother does during her pregnancy that causes glaucoma.

2. Genetic testing, if available, would allow a mother to know if she is carrying a child at risk. But that testing is not routinely available and would not predict accurately if and when the child would get glaucoma. Even if you had some way of knowing the child actually had the glaucoma in the womb (and we do not), we do not have a way yet to do something about it.

P: Are there any effects of glaucoma medication on the physical and mental growth of the child?

Dr. Alex Levin: In general not that we know of. Oral acetazolamide (Diamox) or its cousin, methazolamide (Neptazane), can rarely cause growth issues, but we have just completed some research that suggests that is not as big a problem as some think.

P: Is it unusual for the retina of an eye with glaucoma to appear different than the other eye which doesn't have glaucoma (in aphakic glaucoma)?

Dr. Alex Levin: Glaucoma only affects the retina by decreasing the number of nerve fibers running on the retina surface to the optic nerve. This gives the retina a less shiny appearance. There are some forms of glaucoma (not aphakic glaucoma) which are associated with an abnormal retina as part of the problem. (e.g. aniridia).

P: We have taken my son to see a pediatric ophthalmologist since he was born eight years ago. After developing the very early signs of glaucoma a year ago, we had a very difficult time finding either another pediatric doctor who treats glaucoma or a glaucoma specialist who sees children. We live in Chicago which makes this even more surprising. Would you have any advice on which of the two doctors to choose or how to find a glaucoma specialist who both treats the symptoms of glaucoma and does surgery (should surgery be needed in the future)?

Dr. Alex Levin: There are very few true pediatric glaucoma specialists in the US and worldwide. There are some doctors who may not make it a major part of their practice, and yet do enough to feel comfortable. If you post the names of the two doctors, I can certainly tell you if they do pediatric glaucoma, if I know them.

P: Thank you. I wasn't actually looking for a specific recommendation but rather advice on how to know if the doctor is right for treating children. We recently found one but she doesn't do surgery. My son doesn't need surgery right now, but I would hate to have to find another in the future if it turns out he does need it.

Dr. Alex Levin: If your child does have glaucoma, then the things I would look for are a doctor who has multiple children in their practice with glaucoma (it's OK to ask how many) and does glaucoma surgery. It's true that you don't always need surgery, but if your doctor does do pediatric glaucoma surgery regularly then you know they are interested and have experience in the area.

I should add that the most important factor in choosing a doctor is your comfort level. Does the doctor take time to answer your questions? Is he/she available? Does the doctor care about your well-being as well as your child's? All the surgery in the world is not helpful if the doctor is a poor communicator.

P: Is this an important question: Does the physician do surgery on children or does the physician do surgery on most of the patients hr/she sees? Is surgery different on a child's eye compared to an adult’s eye? How often does a doctor have to do surgeries on children's eyes for you to consider the surgeon performs them regularly?

Dr. Alex Levin: Certainly you do not want a doctor who does surgery on every child with glaucoma! Many forms of pediatric glaucoma can be controlled with medication but surgery is still often needed, but not always. Surgery on a child's eyes is VERY different than adults.I don't know what the definition of “regularly” is.. I have operated on children hundreds and hundreds of times and take care of more pediatric glaucoma than I can count as it is one of my main specialty areas. How much surgery isnough to be considered “regularly,”I just don't know.

P: Is it possible to predict what visual difficulties these children will experience in life? What will their eyes look like to others later in life?

Dr. Alex Levin: It is impossible to predict vision - you would need a crystal ball for that! The outcome in terms of appearance depends on the type and severity of the disease. In severe congenital glaucoma presenting with a very white cornea and a big eye, the child will be unlikely to look normal as the eye will remain big, may need a corneal transplant and may always have a whitish looking cornea. In a teenager with juvenile open angle glaucoma (JOAG) controlled by medicines alone, the eye will look normal.

P: How many children diagnosed with pediatric glaucoma are legally blind as adults? Is it more difficult to preserve sight when glaucoma starts at a young age? Or do you just have to preserve it for longer?

Dr. Alex Levin: These days we are much better at preserving vision than we were 20 years ago. No question about that. The article I mentioned above looks at outcomes by diagnosis. But in general, assuming there is nothing else wrong with the eye that could decrease vision (e.g. an underdeveloped retina as in aniridia) outcomes can be quite good and legal blindness very uncommon

Yes outcomes are better if you don't get glaucoma until later in childhood but the real key is early detection. It doesn't matter what age you are if you are detected early: early detection equals better outcome.

P: What are the odds (in percentage) of a child experiencing a detached retina due to glaucoma?

Dr. Alex Levin: Glaucoma itself does not cause detachment. Surgery for glaucoma does. The risk depends on the procedure and the underlying disorder. Patients with Sturge Weber glaucoma have the highest risk of detachment after glaucoma surgery.

P: How are teens with glaucoma usually diagnosed? What brings them into the office?

Dr. Alex Levin: Good question. Unfortunately, they often come because of vision problems and then it is too late. Another way they come in though is when a thorough routine eye exam turns up a suspicious looking optic nerve (cupping) or a high pressure.

P: My son was born with a cataract in one eye which I know is associated with the glaucoma he now has. Are there other diseases of the eye that in turn are associated with having glaucoma, or other eye problems besides optic nerve damage that we should be aware of?

Dr. Alex Levin: Many eye diseases in childhood are associated with glaucoma. It is incumbent upon the doctors to know when a child is at risk so screening can ensue.
Children who have had cataract surgery are at risk for other problems. Rarely, retinal detachment can occur. More commonly, there is a problem with visual development in the affected eye (amblyopia), turning of the eye (strabismus), or buildup of scar tissue inside the eye.

P: My son has had all of those problems since his original cataract surgery. I guess I should expect a long haul from this glaucoma too??

Dr. Alex Levin: Sorry to hearabout your tough times. But I don't think problems like amblyopia and strabismus can tell you about how the glaucoma will turn out. These problems are fairly independent of the glaucoma.

P: If I had considerable glaucoma damage in one eye by age 39 that has been a battle to control the pressure, what type and frequency of exams should my two teens have?

Dr. Alex Levin: Excellent question. First, you need to know what type of glaucoma you have. Some forms are no risk to your children and other forms may have a risk as high as 50 percent for each child. If your children are at risk, start with a good eye exam that induces eye pressure checks and optic nerve evaluation. If everything is O.K., then an eye exam every six months would be the minimum, I think.

P: Just one more question, does the excessive scar tissue contribute to the glaucoma, make it worse?

Dr. Alex Levin: It depends on how much and where it is in the eye, and what it takes to get rid of it; for example,if it requires surgery to remove it. Most of the time though, it does not make the glaucoma worse.

Moderator: Dr. Levin, it has been a real pleasure having you here to answer questions on this topic. The chat was very informative and will be an excellent addition to the chat archives for those who couldn't be here. Thank you.

Dr. Alex Levin: You're welcome - my pleasure. Any time. I enjoyed it very much.

On April 15, Dr. Pro discussed "Visual Field Interpretation" in the Chat room. Click here for highlights of that meeting.

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