The ROP FAQ
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The following posts from the ROP list discuss the use of dilating drops and the onset of glaucoma in patients with ROP. The ROP list was moderated by Dr. Scott Richards until August, 2002. The list is now hosted at YahooGroups.
Date: November 18, 1998
Does anyone know of any child with rop having an allergic reaction to the dilating eye drops that they use for eye examinations? If so, what were the symptoms? I took my son to the pediatric opthalmologist for his yearly visit for new glasses and a new doctor that he has never had before examined him. The tech in the office put the eye drops in with alexander fighting every step of the way, due to him also being multihandicapped and not understanding what they were doing to him, it was a battle as usual. It did'n't help that this women preying his eyes open had extremely long nails. To make a long story short, Alex woke up the next morning and could'n't see right(he has some limited vision in his right eye. His left eye is blind ) he was banging into things that he usually sees and subsequently did terrible in school that day. Immediately alarmed when he got home from school I called the eye doctor and he said it was normal that the eye drops were probably still in his system and keeping him dilated. So another day went by, but when he woke up this am still not seeing right and very lethargic my husband and I paniked and called his eye surgeon who said it sounds like a corneal abrasion and most likely the tech poked him with her nail is what we immediately thought, but of course the office is denying it. He said there's absolutely nothing wrong with his eye and that it's probably irritated from him rubbing it. But he's rubbing it because it hurts. Needless to say we're taking him to the surgeon tomorrow. Has any one had his kind of experience? My husband and I are very upset with this whole situation.
Date: November 19, 1998
I have had problems with dilating drops causing acute glaucoma attacks. Before I had surgery for glaucoma I used eye drops that actually constricted the pupil which opens up the drainage in the eye. My eye doctor said that dilating the eye caused the drainage in the eye to be restricted and warned against dilation. After the surgery he didn't risk dilating my pupil. Now the eye doctor I go to dilates the pupil because he has another eye drop he uses that counteracts the dilating drops. I would not have my pupil dilated if this counter dilating drop was not available.
Perhaps Dr. Richards can comment on this.
Date: November 22, 1998
From: Pam Berryman
I just want to let you know that my thoughts and prayers are with you. I will be praying that Alexander's vision returns and that God will give you all the strength to work with whatever comes from this situation.
I can relate to your feelings and Dr. Richard's advice in a couple of ways. First, when I was about 8 years old, my opthalmologist had wanted me to take eyedrops to dilate my pupils for several days before this exam. I'm not sure what the actual purpose was, but I can recall the incident. My mom went ahead and filled out the prescription that was "supposedly" what I needed to place in my eyes. It turned out that the druggest made a huge error and had given mom Pilocarpine, drops used for treating glaucoma, rather than the, I think, atrapine needed to assist in the upcoming exam. My eyes became very irritated and red. Mom took me back to Dr. Olsen, my opthalmologist, a few days later. He was infuriated! He told mom that this could have seriously damaged my vision. Thank God, it didn't. My opthalmologist did get after the pharmasist for this mistake. I did end up with the correct prescription, and all went well. Ironically, it did turn out that I developed glaucoma in later years and did take pilocarpine for a time to lower my eye pressure (not related to this earlier situation).
This is a bit off topic but related to those feelings of guilt and concern when we feel we could have, possibly, done something differently in a given situation. I can fully relate to what you are saying about wishing you had the hindssight at the time when the foresight would have come in handy. A couple of weeks ago, my dad had a stroke and was hospitalized. Even though I attempted to explain my circumstances of schooling and also having a visual impairment as reasons for not releasing dad from the hospital so soon, I felt like my concerns about being blind and not being able to remain at home with dad 24 hours a day were ignored. It turned that dad was released, to my judgement, too soon. He has always been extremely independent in self-care, meal preparation, and still able to drive a car safely at 84 years of age. It turned out that dad wanted to stop a a restaurant near his home for a bite to eat. He was adamet about this, so my friend, Leela, and I went along with this plan. We thought that if we walked very slow, he would be OK. When dad got out of the car, he did not want Leela or me to help him. After a few steps, he fell in the parking lot and broke his hip. Fortunately, there were some people in the parking lot area that were very willing to help, and we called "911" for dad to be returned to the hospital. Dad had to have surgery due to a broken hip, and he is also continuing to recover from the stroke in a rehabilitation care facility.
My point of this story is that I, too, felt that if I didn't stop at the restaurant, dad may not have fell and broken his hip. The recovery from the stroke may have gone much smoother. Also, I felt I should have insisted that he was not released even more assertively. However, as I look at the situation, I'm not sure if what had happened would have necessarily been prevented. Like Alexander, dad was in a situation where his condition was not stable. I can definately feel blame and anger toward the hospital for releasing him too soon. However, he could have ended up falling at home down a flight of stairs or on the pavement on our driveway or going up the porch steps. I think what I'm trying to say is that I've had to talk to myself and sort out the facts in this situation. Dad was determined to leave the hospital no matter what. You would have to know my dad to understand his strong will and stubbornness. The hospital did release him too soon, but the state dad was in to not be ready to accept any therapy would have likely resulted in him falling at a different place at a different time. It could have been a situation where no help was available or where he could have either been hurt worse or not survived. I've had to remind myself of these possible facts when i get hard on myself for stopping at the restaurant.
Didn't mean to ramble, but I guess what I'm trying to say is that you had no clue of the glaucoma situation before beginning the eyedrops. Maybe, it would have occured at a later date with some other precipitant triggering the acute attack.
I think that what I have learned from dad's situation, what could have occured from a mistake in prescription with me during childhood, and what has happened with Alexander is that it is important to remain alert and strongly advocate for our loved ones when we feel a discrepzncy with the medical field. In other words, we can do our parts and our very best by advocating for our child/parent while trying hard not to blame ourselves for something we honestly could not foresee or have control over. That is a very fine line and hard to find a balance with.
Now while dad is in a care facility for rehabilitation, I'm keeping on track with letting staff know dad's needs and checking with each shift to be sure procedures are being properly followed. At the same time, thought very hard, I'm also trying to let go and let God take the final control and help me not only in all areas but with things I do not have any control over.
Date: November 23, 1998
Thank heavens everything has worked out all right. I had the same thing happen with dilating drops. Why hadn't his first eye doctor seen the damage? Sounds like you found a great doctor.
I had glaucoma for 12 years and no one knew it. I had 'normal' pressure when I went in for exams and the damage was never noticed. I had regular acute glaucoma attacks, but I called them eye strain headaches. My vision would get foggy and I would see halos around lights. I felt pressure in the area above my eye and my eye felt hot. My eye would also get blood shot.
I mention all this so parents can be on the lookout. I also found that reading and doing very visual work would always bring on an attack. (the reason I called them eye strain headaches) ANOTHER GOOD REASON FOR BRAILLE. My acute attacks began in puberty and were always worse once a month.
Date: December 2, 1998
From: Scott Richards
Glaucoma testing is quite possible with fingertip palpation, and can be pretty accurate if done by an experienced examiner. I have had cases where the pressure reads normal with the usual intruments, but the eye seems too hard, so I try a different instrument and find that my gross impression was right.
Glaucoma testing is important for adults, but much less critical for infants. There are many types of glaucoma, and it is important to know which kinds tend to occur in which age groups. Congenital or infantile glaucoma occurs (as you might guess!) in babies, and usually presents as an enlarged eye. Accurate pressure readings for babies usually require an exam under anesthesia, but we can get a pretty good estimate in the office in many cases. Angle closure glaucoma is the type we most worry about in post-ROP kids, and usually presents with redness and severe pain. Pressure measurements during routine exams are unlikely to pick up on this, since it is a sudden occurrence of severe increased pressure. Chronic open angle glaucoma is the insidious type that adults tend to get, and this is the type we do routine screenings for. In our office, we don't do routine glaucoma testing (other than finger palpation) in kids under age 6 unless there is some reason to think their pressure is high. This is mainly because the instruments to check the pressure are scary for kids, and it is tough to do the rest of the exam after you've scared a kid. We have found that exams on children are usually limited by the child's cooperation, so we tend to focus on the most important things first. we have also found that checking a pressure in an uncoooperative child usually leads to a falsely high reading, which then obligates us to an exam under anesthesia, which is even more scary and can be dangerous.
Eyedrops for glaucoma are designed to reduce the pressure, which prevents damage to the optic nerve and helps preserve vision. In an eye with no vision, we don't usually worry much about what the pressure is, unless there is pain caused by the elevated pressure. We don't normally see pain due to pressure unless the pressure is above 40 mm Hg. In cases with a gradual increase in pressure, people can tolerate pressures of 60 or 70 quite comfortably. In sudden increase in pressure, such as angle closure glaucoma, people can have lots of pain with a pressure of 40 or 50. If the pressure in your painful phthisical eye is 30, I would suspect that the pain is due to the inflamation or phthisis rather than the pressure per se. However, if lowering the pressure helps the pain, you may be one of those unusual people with pressure-related pain at a low pressure. In other words, I can't tell from here, However, I would probably start where your doctor did, with Atropine and steroids, since they are the most likely thing to control the pain. If that doesn't work, pressure lowering would be the next step. The good news about phthisis (if there is any) is that the pain due to increased pressure tends to get better within a few weeks or months for many people.
Date: December 18, 1998
From: Scott Richards
"And, could you illusidate on other ways of checking eye pressure?"
All of the methods typically used involve indenting the cornea slightly. The pneumotonometer does that with a puff of air, while other methods usually have a probe tip that touches the front of the eye. In our office, we have three different types of tonometers that we use depending on what we are trying to accomplish. One is a portable system that we can carry on rounds to the hospital, one is the Goldman tonometer (the type commonly attached to a slit lamp and used for most purposes), and one is the Schiotz tonometer, an instrument that has not changed much in the last 100 years that we use when all else fails. We don't use the puff tonometer - it is too irritating and give false high results.