Round table: Clinicians offer ways to handle parent worry, patching follow-up

In this second excerpt from a round table held during the AAPOS meeting, members of the OSN Pediatrics/Strabismus Section discuss how to address parent concerns as well as whether to follow up with or without patching after amblyopia is equalized.

Robert S. Gold

Robert S. Gold, MD: You see a 2-month-old whose parents are concerned that their baby is not seeing well. You do not find anything necessarily wrong on examination. What else do you do, and when do you start worrying? When do you start a work-up?

Kenneth P. Cheng, MD: At 2 months, most babies are looking at things and following quite well. But I have seen countless numbers of babies who at 2 months are not doing a whole lot. I am not too worried.

Dr. Gold: You see a child at 6 months of age, and there is nothing remarkable on the examination, but the parents are concerned. The optic nerves are normal. Retina seems normal. No strabismus. No nystagmus. What is your threshold, and when do you worry?

Dr. Cheng: At 6 months, I am worried.

Kenneth P. Cheng

When to worry

Dr. Gold: So between 2 and 6 months, when do you start getting worried?

Dr. Cheng: At 3 months, if the baby is not fixating and following well, that is abnormal. I tell the parents that there is a small subset of children with delayed visual maturation who will not figure things out until 6 months. But at 3 months, if there is any level of concern on the parents’ part, especially if there is any type of family history, then I think it is time to work up the child.

Roberto Warman

Roberto Warman, MD: One thing is worry; one thing is work-up. You can tell the parents, “Yes, this is not normal,” but what work-up do we do? Visual evoked potentials in the first year of life are not reliable. So why do the test? I would not do visual evoked potentials, and I would not do an electroretinogram before 1 year of age. In enough cases, results of those tests are normal after 1 year of age, so I defer the bulk of those tests. In some circumstances, I would do them sooner if there is pressure on or from the family.

Rudolph S. Wagner, MD: I agree. I do not think electrophysiology testing is useful in this case. In a situation like this, with a child at 2 months of age, I’m going to say to the parents, “Let’s make sure we talk to your pediatrician about it, about their developmental milestones and any other things that are going on,” because I really believe that if there is a problem, by the time they are 3 or 4 months of age, there will be other signs that will make the parents and pediatrician suspect an underlying cause. But some just have delayed maturation, which often gets better with time.

Rudolph S. Wagner

Dr. Gold: If you tell the parents, “This is delayed visual maturation,” the worried parents may ask, “What else could this be?” How would you answer those parents when the differential diagnosis is going to be even more concerning?

Scott E. Olitsky, MD: I tell them, “In my opinion, the chances of this being delayed visual maturation is extremely high with an otherwise normal exam if the child appears otherwise healthy.” But I will bring up the subject of cortical visual impairment. I also explain that I would not make that diagnosis at that time. We cannot make the diagnosis of delayed visual maturation until they are better, essentially a retrospective diagnosis. I tell them that the majority of children I see end up doing fine, and I hope that allays their concern.

Scott E. Olitsky

My question is, do you see these patients back or do you ask the parent to contact you? If the same 2-month-old is perfectly normal at 4 months, do we need to see that patient again?

Dr. Warman: The only extra thing I tell the parents, depending on how much they ask, is about those very rare conditions that cannot be picked up on those special tests.

Regarding how often, if I see the patient at 2 months, then I definitely have them come back at 4 months because I want to see if nystagmus developed. I do not make them come back at 3 months, because that is the cut-off and everybody is a little different; I try to push the next visit to 4 months. If results are abnormal at 4 months, then I have them come back at 6 or 8 months, unless they live terribly far or it is a big problem. They want to have contact with us. They want reassurance, to know where we are and when there are changes. I always tell them, “If you see big changes, just e-mail me,” to keep the communication open.

Dr. Cheng: When the patient is 3 months and the parents are nervous and want further evaluation, I offer it to them. I explain, “I suspect things are going to be fine, but at 3 months, most children are seeing better than your child is and if you’re not sleeping over this and will feel better knowing that the brain looks normal on an MRI, let’s get an MRI.” I explain that an MRI at this age will require the baby to be sedated and that the sedation has a small but finite risk to it. I also say it is entirely reasonable to wait and watch if they are more worried about the anesthesia, because the things that we are going to find on that MRI, if something is abnormal, are very unlikely to be anything that we are going to be able to treat or do anything about.

Anthony P. Johnson

Anthony P. Johnson, MD: I completely agree, and I am glad to hear what the group has to say, because it is consistent with what I have been doing. In the midst of knowing that the patient will most likely do well, you do not know for sure. One thing that has not been mentioned that I try to do is to not list a bunch of menu items of things that could be wrong, especially when the parents are pushing for a differential diagnosis and things that I am worried about. Especially when I feel that this 2-month-old is probably not going to do well and I want to see him back in 2 months, I ask the parents if they will just let me worry about it so they do not have to. If there is still a problem on the next visit, then we will begin a work-up and talk more about the specifics. I encourage the parents not to be worried about the particular names of certain things that we are concerned about, especially because of the instant availability of information on the Internet. If they really want to search the terms, I give them the AAPOS website as a reliable resource.

Dr. Gold: Many parents already come in worried and they have already searched the Internet. They actually bring up some of these names, so I like your approach.

Dr. Cheng: I would just add that the majority of issues that we say are not treatable at such a young age may soon be treatable, and we need to temper our confidence in the watching and waiting because we may be treating some of these disorders, such as Leber’s congenital amaurosis, in the near future.

Weaning from the patch or not

Dr. Gold: Let’s move on to the next topic. I will give you an age this time, but you can also be creative. You are treating a 4-year-old for amblyopia. Whether he or she has strabismus or not, and whether he or she has anisometropia or not, you decide. Initially, vision was 20/80 in the right eye and 20/30 in the left eye. You have been treating the child for a year, and now the vision is normal — 20/30 equalized in both eyes. You have been patching this child per the amblyopia treatment study regimen, 2 hours a day or 6 hours a day. Maybe you used atropine or maybe you did not. The vision now has equalized. What is your preferred method of treatment going forward?

Dr. Cheng: Well, this is a 4-year-old. Some of the preferred treatment depends on how you got to this point, how much patching was involved, how much of a difference there was in the anisometropia that you were correcting with the glasses. The more difficult it was to get to this point, the more likely you are to maintain some treatment afterward and at a certain level. That might involve reducing the patching to part-time patching.

One of the things that I find helpful is stereoacuity testing. If I have a 4-year-old who should be able to do most of the tests and who displays good stereopsis, I am more confident that whatever we do, that child is going to be OK. But in these cases when I am happy with the result and I think that the child is seeing truly equally, I will, for a 4-year-old, still have him or her patch, maybe even just once a week for a few hours to maintain that equality. I would keep that regimen until the child is 5 or 6 years old.

Dr. Olitsky: I tend to want to stop the patching completely. I do not taper and wean. In a child whose vision is equal or near equal and who has no or a very small amount of strabismus, I stop the patching. Essentially, I tell the parent that I want the child to prove that he needs any more patching. I tell them that there is a risk and there may be a recurrence. Then I see them back in 3 to 4 months. If there has been a slip, then I will re-patch the eye or give atropine and use a maintenance schedule after that. But patients with straight eyes and equal vision, I think, are going to do well; I like to stop completely even if they are patching 2 hours a day because of the uncertainty in those cases. I also explain, “We’ve come this far. We’ll see you back in a few months. If you slip a couple of lines, we’ll get that back. Don’t worry about that.”

Dr. Warman: The key words here are, “I’ll see you back in 3 to 4 months.” We can argue and argue about the way to patch, whether to cut the patching from 2 hours to 1, and then from 1 to every other day. There are no data. Some may want to go faster than others. But you should see the patient shortly after making a major change in the treatment. We can always go back. When you make a big change and the patient is not seen for a year, that is when you get into trouble.

Dr. Cheng: Two things: First, determining whether the visual acuity is equal at age 4 is difficult because of the tests that we use. When the child is 5, he knows his letters more on a traditional letter chart. Then, we oftentimes find that the 20/30 really is not 20/30. It is really 20/40. In that respect, I tend to be a little conservative.

Second, in some children who have been difficult to get to patch, stopping the patch and restarting it may be more difficult and traumatic than just continuing the patch for a few more months at a reduced level. Here, I would rather just continue the patching so that it does not have to be restarted. Again, I think it is reasonable to do some level of maintenance patching, perhaps just an hour a day 3 or 4 days a week until the child is 5 or until another visit when we have established that vision is equalized and not wavering a bit. Sometimes I recheck the vision myself to make sure that the child has not struggled to get to 20/30. So a second visit is always good.

Dr. Warman: When tapering down, I normally tell patients, “Now we’re going down to 1 hour a day or maybe 1 hour for a few days of the week only.” When they come back, almost invariably they stopped patching. And if you see that they did not regress, it is very reassuring.

Dr. Gold: That is what I do also. That is what I see also. But I always see them back in 3 months if I have stopped patching. Always. No matter what age. If the patient is stable, then I do not necessarily restart patching, but I do follow up again within 3 to 6 months and then extend the visits.

Dr. Johnson: My experience has been just a little different. I tend to patch in a maintenance fashion longer, often for an hour a day. But it seems that the patients who stop patching on their own, not the ones who I have instructed to stop patching, are the ones who lose ground. They are in that 4 to 6 age range.

Often with a 4-year-old, I am not confident that 20/30 is really 20/30 or 20/40 in one eye or that 20/30 is not really 20/20 in the other eye. It causes me angst. And when they are 6 years old, now I’m thinking they are really 20/20 and 20/40. Now do I start back? Therefore, I just continue with maintenance patching of probably an hour a day for most of them at least until they are 7 or 8, which sounds like, from some of the practices of the group, maybe I am overdoing it a little.

Dr. Wagner: If I have particularly compulsive parents, which is desirable in this situation, I may ask them before their next visit to stop the patching for a couple weeks. Then they come to the next visit and we can determine what is really happening if we do stop the patching.

Dr. Olitsky: I am still convinced that I can treat that patient if I need to re-patch him. If the patient is 20/40 and 20/20, and I find that a year later, because of the way we are checking vision at an older age, I am not too worried.

The other thing is that I tell the parents, “Here’s what is going to happen if they slip back. We are going to go back to whatever the original treatment was. Is that worse than patching a little bit for the next year?” I let them make the decision because, for some children, that will be. It is much easier to just keep them on their current regimen.

Dr. Gold: As the pediatric ophthalmologist, you have to be compulsive and oftentimes you have to check the vision as well as make sure that your technician has done it correctly. That is a very important point. You want to trust your technicians, but this is a decision that you are making, which is very important for the child.

• Kenneth P. Cheng, MD, can be reached at 1000 Stonewood Drive, Suite 310, Wexford, PA 15090; 724-934-3333; e-mail: kpc123@verizon.net.
• Robert S. Gold, MD, can be reached at 225 W. State Road 434, Suite 111, Longwood, FL 32750; 407-767-6411; fax: 407- 767-8160; e-mail: rsgeye@aol.com.
• Anthony P. Johnson, MD, FACS, can be reached at Jervey Eye Group, 601 Halton Road, Greenville, SC 29607; 864-458-7956; fax: 864-458-8390; e-mail: apj@jervey.com.
• Scott E. Olitsky, MD, can be reached at Children’s Mercy Hospital, 2401 Gillham Road, Kansas City, MO 64108; 816-234-3000; fax; 816-346-1375; e-mail: seolitsky@cmh.edu.
• Rudolph S. Wagner, MD, can be reached at Children’s Eye Care Center, 1 Clara Maass Drive, Belleville, NJ 07109; 973-751-1702; fax: 908-665-8482; e-mail: wagdoc@comcast.net.
• Roberto Warman, MD, can be reached at Miami Children’s Hospital, 3200 SW 60th Court, Suite 103, Miami, FL 33155-4072; 305-662-8390; fax: 305-661-7862; e-mail: rwarman@eyes4kids.com.