Juvenile Glaucoma, Panic Panic

December 26, 2013 8:23 PM

My second grader might have juvenile glaucoma. Our insurance is changing at the beginning of the year. How fast do we need to proceed?

Our kid has been reporting vision problems for some months. We figured it was the family myopia coming on and put off dealing with it until her her seven-year check-up, since it wasn't causing her any noticeable difficulties. That check-up was about three weeks ago. They recorded her at 20/40 vision, but the testing process was really difficult for her, like she had a hard time understanding the instructions, and that's just not like her.

So today we took her to an optometrist for an extra check partly because I had a niggling feeling, but also because the kid really wanted glasses and we thought we'd humor her. The optometrist found problems with her peripheral vision and color vision (more pronounced in the right eye), a thickening of the optic nerve in both eyes, and while the kid can read the line at 20/40, sometimes a minute later she says she can't read the same line at the same correction. We have been referred to the pediatric ophthalmologist, with the understanding that this may be a congenital thing, or it may be juvenile glaucoma, or some other option I don't know. (I speculate this might be related to use of steroid cream for her eczema, neither here nor there.)

This strikes me as a KILL IT WITH FIRE YESTERDAY kind of event. But it's the holidays, and our insurance is changing. On Jan. 1, we get a new (and better) insurance plan. We've been strongly discouraged from doing anything medical the first two weeks of the year because of this. Meanwhile, our pediatric ophthalmologist is on vacation until Monday.

You may or may not be a doctor. You're definitely not my doctor. That said, is it reasonable or safe to wait what may wind up being some weeks to deal with this, or should we be kicking doors in to get this diagnosed and treated by the end of the year?

posted by Andrhia to Health & Fitness (11 answers total)

We've been strongly discouraged from doing anything medical the first two weeks of the year because of this.

This doesn't make any sense to me. If your policy goes into effect on January 1, you can use it on January 1. You might not have received your insurance card yet, so you may have to agree to be billed by the doctor's office and then follow up later with your insurance information, or at worst submit the claim to the insurance company yourself (rather than having it handled by the doctor's office).
posted by telegraph at 8:34 PM on December 26, 2013

I'm also confused by the idea that you shouldn't use your coverage for the first two weeks. I think you need to clarify that. There is no break in your coverage and that should mean that it doesn't matter if you have your primary care appointment (or break your leg) on Dec 31st or Jan 1st.

As for the specifics of this issue with your child, I am no pediatric ophthalmologist, but I think it's quite unlikely this issue has anything to do with the topical cream for eczema.

Juvenile glaucoma is rare, and also genetic - do other people in your family have it? The findings you mention on your child's exam could all be somewhat subjective - you don't mention any measure of eye pressures which is the defining feature of glaucoma. In any case, I can't reassure you that your child doesn't have glaucoma, only the ophthalmologist can determine this, but this seems far from a definitive sounding diagnosis at this point.

Also, consider the fact that your child, for some reason, wants to have glasses. Could this be related to the fact that she suddenly decides she can't read a line that she could read just a moment before (as she realizes that reading that line might mean she doesn't get the glasses she wants)? The pediatric ophthalmologist will be able to figure this out. But considering that possibility might help you stay a bit more calm? Good luck getting this sorted, hope you get your worries addressed quickly.
posted by treehorn+bunny at 8:50 PM on December 26, 2013 [2 favorites]

I was also going to raise the question about whether your daughter possibly could be exaggerating for glasses and attention? I say this because I told a few whoppers just like this as a 7 year old that make me cringe still to this day. (I grew out of it, promise!) You're a good parent for investigating further to ensure everything is okay, but you need not worry from an insurance perspective.
posted by cecic at 9:49 PM on December 26, 2013

Seconding treehorn's comment about your daughter's varying ability to read lines coinciding with her desire to have glasses. Have there been any concerns from her teachers about issues with her not seeing the board at school, or complaints of headaches, etc.? That was one of the signs we had with our younger one. She went from 'let's keep an eye on things' (no pun intended) to a pretty significant myopia with astigmatism in less than six months.

Definitely don't wait to call and get in as soon as possible. Unfortunately, any time I've called to get appointments with pediatric ophthalmologists, there's usually a wait (one of my kids goes to Children's Hospital of Philadelphia and the other goes to an ophthalmologist in Morristown, NJ).

Going off your website in your profile, it seems you're in NY, so I'll mention that we've also seen one in NYC on the East Side. It was many years ago, but I liked him quite a bit. He's still in practice. Memail me if you'd like his (or any other) name.

Good luck.
posted by dancinglamb at 1:10 AM on December 27, 2013

Response by poster: We have taken the fact that the kid isn't being totally straight with us into account, trust me. She could not fake a substantially thickened optic nerve, and it's highly unlikely she'd consistently fake loss of color and peripheral vision in one eye but not another. Note that the doctor said we chould be concerned about pediatric glaucoma and gave us the referral; I didn't make that up.

Can anyone address my actual question regarding what kind of timeline we're dealing with if this is, in fact, juvenile glaucoma?
posted by Andrhia at 5:42 AM on December 27, 2013

Response by poster: (Oh, and for treehorn+bunny: steroid-induced glaucoma is a thing, and we've been uneasy about it for years because of the warnings on the packaging of her topical cream.)
posted by Andrhia at 5:59 AM on December 27, 2013

Does she apply the topical steroid on or near her eye? Because it IS a thing, but it's uncommon, and the majority of cases arise from putting the steroids on the eye.

There are a few resources available to you outside of Metafilter that can provide professional answers to your question about how long is OK to wait:
- the optometrist your daughter already saw
- the office of the pediatric ophthalmologist (typically doctors' offices triage patients for appointments and they can give you an indication of how urgent a suspicion of juvenile glaucoma is)
- the nurses' hotline that is probably listed on the back of your insurance card. It seems to me the question is do we need to go to urgent care vs. can we wait ~6 days, and the nurses' hotline exists to help you make those decisions.
posted by telegraph at 6:17 AM on December 27, 2013

If your insurance company is anything like mine, the danger in having medical procedures in the first two weeks of the year isn't that the procedures won't be covered; you should have the full scope of your coverage beginning the moment your new plan goes into effect. The danger is that they won't have their act together, paperwork-wise, so they may reject a claim and have to have it resubmitted, and you may end up having to pay out of pocket and get reimbursed weeks or months later, and you may spend hours on the phone coordinating with them. Basically, it may be a big hassle for you and for the company. And that's especially true when you're switching insurance, because even though pre-existing conditions aren't really a concern anymore, there may still be a fight between the two companies about who is responsible for which bills, another hassle. Or, it may be that they're on top of things, and you have zero issue. But the risk you take isn't about your coverage, it's about how much of your time you'll have to spend getting that coverage to actually pay the bills it's supposed to pay.

If you are worried and upset enough to be willing to take the risk that payment will be a hassle, get it checked out right away. You sound worried, and you sound as though you'd prefer to get this looked at as soon as possible. And even though I think people have given you good reasons to believe that there may be less serious explanations for your daughter's symptoms, I also think it's totally reasonable for you to be impatient and upset when you hear that there may be a problem with your child's vision. So I think, assuming that you can confirm that you do, in fact, have full coverage from the new company beginning right away on January 1, that it would be totally reasonable for you to make the soonest appointment you can once the new year starts.
posted by decathecting at 6:26 PM on December 27, 2013

Sorry for the delayed response, but telegraph touched on what I would have said - the issue is mainly with topical steroids for the eye, i.e. steroid drops that you put directly in your eye. Even then, it's rare and more common in the elderly. So I still say that it's very unlikely to be related to topical steroids you're using on the skin for eczema.

Your response sounded upset - I didn't mean in any way to imply you were making anything up. What I mean is that the findings of a thickened optic nerve and abnormalities in peripheral/color vision can be somewhat subjective and depend on the examiner/examinee (you might find this link helpful in discussing that a bit). It doesn't mean they're not real, they could be real. But even if you said that intraocular pressures had been tested and were elevated, those results can depend on the calibration of the tonometer and the skill of the examiner in using it. What I meant was to try to ease your mind by pointing out that nothing definitive has been diagnosed yet and that this *could* all turn out to be nothing. And I still hope that it is.

The question of whether it is reasonable and safe to wait a few weeks to deal with this is actually a different question than the question of what sort of timeline you're dealing with if this is, indeed pediatric glaucoma. The answer to the first question depends on the odds of this actually being pediatric glaucoma - which are quite low considering how rare it is, but unclear given we don't know all the specifics of what's going on with your daughter. Either way, the level of concern about something like this is always going to be much higher when the person in question is your daughter, understandably so. The answer to the second question assumes that pediatric glaucoma is the diagnosis, at which point the odds don't matter. My answer was directed towards the first question, but if I knew that pediatric glaucoma was either definitely what was going on or likely to be the case - I'd get my child to the ophthalmologist immediately. If you're able to get in on Monday when the doctor returns, I imagine the difference in co-pay between insurances (or even the price of the appointment, if you are on a high deductible plan now) will not be much compared to having your peace of mind. Best wishes to you and your daughter.
posted by treehorn+bunny at 8:26 PM on December 27, 2013 [1 favorite]

Response by poster: As a follow-up: various medical authorities including the pediatrician and the ophthalmologist's office staff have agreed this isn't the sort of situation where a delay of some several days should matter much. We have an appointment on Jan. 9. Hopefully we will have our new insurance numbers by then and will be able to print out cards and get the referral. Not sure how we'll proceed otherwise. >_<>
Very sorry if I was combative or ungrateful at all. As you noticed, treehorn+bunny, I'm pretty worried about this whole thing, though the immense panic has worn off.

I was really, really hoping somebody with some personal experience of glaucoma would come by and describe the kinds of timelines they dealt with in their treatment, but alas I guess it was not to be.
posted by Andrhia at 2:13 PM on January 1, 2014

Response by poster: And another follow-up: When we actually saw the ophthalmologist, he said her cup-to-disc ratio was 0.9 and very deeply concerning. He pressed me hard to bring her back for further testing within three weeks, no matter the insurance situation, so "get her in within weeks" appears to have been the answer I was looking for. On further testing, it's proven to be almost certainly a congenital issue and not progressing, so whew.

It turns out we did not have insurance at that time. We were hypothetically retroactively enrolled, but we have not yet been reimbursed and I doubt we ever will be.
posted by Andrhia at 9:39 AM on May 14, 2014