Paige had stage 2+ ROP which was diagnosed while she was still in the NICU. She was tested frequently and it never progressed to stage 3 and she never needed surgery. Upon discharge she was tested again, which showed she was still stage 2+.
A few weeks after discharge she was tested again and it was gone. Completely resolved.
Jump ahead to age 6. We moved to a state that requires all children to have a current eye exam before starting kindy. We saw an optometrist who was freaked out by what she saw. She scared the heck out of us, gave Paige glasses, and sent us on our way.
We ended up seeing an ophthalmologist who specialized in children with ROP. He said that she had scar tissue from her ROP, which may be what scared the optometrist. He felt that there was no reason she needed to wear the glasses at such a young age because her eyes were not that bad.
The following year (age 7) he saw a change in her vision but still felt that she did not need glasses. Paige wasn't happy about that because she could not see distance. She started wearing her old glasses (from the optometrist) on and off.
Age 8... she was determined to get glasses. And she did. The opthamologist felt that the change in her vision was a bit concerning but was confident that it was not due to her ROP. He felt that it was genetic. (only my MIL had glasses at a young age)
Today was her annual check up. Her vision changed once again. (we knew this because Paige has been saying, for months, that her vision has changed) I talked to the doc in detail and asked a bunch of questions (thank you Sarah). He agreed that her vision change is more than usual but still felt that it was due to genetics and not her prematurity. I no longer agree. I asked him about her scar tissue. He agreed that she had scar tissue due to the ROP and that it would prevent her from ever seeing 20/20. But he felt that her scar tissue has nothing to do with her nearsightedness. He said that ROP damage usually only affects close vision. That is absolutely false.
He gave me that smile. Something that I cannot stand. If the smile could talk it would say something like, "oh, you shouldn't worry your self with all of these big medical terms. just trust me". I hate the smile!! He then turned and said something like, "She was such a wee baby and her eyes look great for being such a wee baby. Someone upstairs was looking out for her." Ok, those of you who know me and have been paying attention on this blog know that I also hate that statement!!
I asked him about her risk for retinal detachment to which he replied, "Well, there is a pretty good risk there based on her ROP and her vision change. She should never play any contact sports. Soccer, basketball, baseball, softball, volleyball... all out of the question for her."
Ummm, when were you planning on telling me this? If I hadn't asked, you wouldn't have told me this! You were half out of the office when I stalled you with my questions!! ARGH!!
I obviously didn't say that to him but I sure did flash him my *smile*. I don't think I have to tell you all what my smile would have said if it could talk.
Paige was not happy about getting her eyes dilated but she is happy that she'll be able to see better again.
When we left the office she chuckled about the docs' statement and said something like, "I thought he meant that someone on the floor above his office was looking out for me."
I love her attitude. I love her spirit!
29 comments:
I love her comment about someone looking out for her. Such a great attitude. She really sounds like such an amazing girl who takes everything in stride. I hope Dakota can be like that when she gets older. Paige gives me so much hope.
I too have always been told that kids with ROP are usually far sighted and lose up close vision. This is the case with Dakota but then I've had many friends be told other things by their doctors so I have no clue what to think. All I know is my kid can't see up close well and that's really all I care about.
Whoa!
How did you know to ask about the risk of retinal detachment? Is that the case with all kids who have had ROP?
Oh my.
Retinal detachment is a common complication of ROP. Docs should really be telling parents about the contact sports thing. Many people get into their 40s and 50s without experiencing it; but it's not worth the risk.
Having said that, it's also important that a kid still has opportunities to be a kid. There are plenty of other ways for kids to be active, and general activity is not a problem.
Wow, Are you now looking for a new doctor? Josh is nearsighted b/c of ROP. I am also going to ask the dr about detachment. We see her next month.
Christy
Wow. I'm sorry they brushed you off like that. Perhaps he thought you already knew about the contact sports thing though. I would think they should have gone over that before now, considering Paige's age...???
As for eyes changing rapidly though - I got new glasses/lenses every 6 months from the age of 7 to 11 or so. I didn't have any underlying issues. So, who knows, maybe it will settle down soon.
I also started wearing glasses when I was 8 and I bet every year, I had to get new glasses due to changes in my eye sight. (Both of my parents are nearsighted - my mom is pretty bad) The rapid change slowed down once I was in middle school.
I did not know about the connection between ROP and retinal detachment. My nephew had surgery for ROP. I wonder if his parents know about the connection.
Sorry to tag your comments with a question - but I figure this is as good a place as any for hard info. I was on a now defunct ROP list years ago, and it was a lifesaver at the time. We have lived with the "mostly stable" aftermath of ROP for the last 10 years or so, and now it is coming into the forefront again.
Basic background - my son was a 26 weeker w/ ROP that was stable at stage 2 for several weeks, and then went rapidly into Stage 3 with Rush, first the right, then two weeks later the left. Both eyes were treated with laser surgery, rt eye progressed to partial detachment, which was sucessfully treated with scleral buckle (removed 9 months later). He has severe macualar dragging in the rt eye (to the point of buckle)and very little functional vision in that eye. His left is MUCH better, but still scarred, with moderate macular dragging. He is majorly nearsighted, with only partial correction possible. He also has moderate nystagmus, which makes focusing a real challenge. At his eye appointment yesterday, he wowed his Dr. by reading the pocket vision screener card. He read the 4 point line w/out glasses at 2 inches, and the 5 point line at 10 inches with glasses. The issue was he had to have a sharp head turn at an awkward angle in order to null the nystagmus to the point that he could focus to do so - not practical for reading at all. SO - the Dr. is wanting to refer him back to the pediatric surgeon for possible surgery to dampen the nystagmus. I am very, very leary of messing with his eyes at all. To lose the vision he now has would be beyond devasting. But gaining the ability to focus without major struggle is possibly life altering as well. Anybody out there with any experience or info on this?
Thanks!
Emily wrote: "Such a great attitude. She really sounds like such an amazing girl who takes everything in stride. I hope Dakota can be like that when she gets older. Paige gives me so much hope."
Thanks Emily. I'm always in awe of her.
Last night I told her to come up with 2 topics that she wanted to know more about so we could focus on them during school. This morning, during homeschool, her and I were discussing her topics on what she wanted to focus her studies on next (we had been working on "going green"). I knew it would be something in the area of medicine and the human body because she has such a strong interest there.
She sat down with her hands folded (she looked so business-like) and said, "I want to learn all about the medical things that preemies deal with so I can eventually do speeches to families." Oh my gosh, I nearly fell off my chair. When I asked her why she wanted to do speeches she said, "I want to keep it real. Give hope, but keep it real."
That is typical Paige. I love her attitude!
(by the way... we are not going to be studying her exact topic in school-I got her to agree to start small-so now she is studying the eye-no big surprise there-lol)
kate k. wrote: "How did you know to ask about the risk of retinal detachment?"
Not only have I had the benefit of having Sarah Blake in my life, I've also known teenaged preemies who have had retinal detachment. The parents are always taken by surprise because the risk is never discussed.
Sarah wrote: "Having said that, it's also important that a kid still has opportunities to be a kid. There are plenty of other ways for kids to be active, and general activity is not a problem."
I completely agree. Actually that is one thing that the doc did stress. He said that some parents go overboard and the child lives on the sidelines.
Admittedly, as soon as I remembered her upcoming camping trip with scouts I started to go into "neurotic mom" mode and re-think the decision to let her go. But, as with anything, you have to let go a bit. We've talked about what the doc said about sports (I was never a fan of soccer-she's never been allowed to play-long story) and she is completely fine with it.
thethomas wrote: "Wow, Are you now looking for a new doctor?"
Oh how I wish but he is it. I think that there are a few others that treat adults, which may be our way to go.
kristie wrote: "As for eyes changing rapidly though - I got new glasses/lenses every 6 months from the age of 7 to 11 or so."
I wasn't as worked up about her vision change, once I calmed down from the whole experience. I remembered hearing, over the years, about rapid vision change in children. I guess I was just so agitated over the entire day. (add to that... we were there for 2 hours!)
future of hope... I wish I could help you but I'm really not up to date on anything relating to the issues preemies face with their eyes. I truly put this out of my mind for many years, thinking we were completely not affected.
But, if you don't get an answer in here in the comments section, I'd be glad to put it as a post.
Also, I would suggest emailing your question to Sarah sarah@growingstrong.org
I'm not familiar with any kids with ROP having nystagmus surgery. It is worth a consult though. Having had six surgeries on my eyes, I consider a surgery with reasonable likelihood of helping me worth looking into.
OK, so our Katie had an early stage 3 ROP and still has funky retinas. We have always had annual eye check ups with ophthalmologist (never optometrist). These visits are paid by medical insurance (not vision insurance) since it's a medical issue.
We've been to see several ophthalmologists and even a neuro-ophthalmologist but nobody has ever said a thing about contact sports.
She's near sighted but that's common in kids and it's not bad enough to treat now.
Katie's had huge changes in her vision (both from better to worse and from worse to better) but I have a feeling it's more related to underlying medical issues than it is to her prematurity.
Laura
Hi Stacy,
It s*cks that your appointment left you feeling less than partnered with - that is one of my most sincere pet peeves. I *hate* when I feel that I'm being talked down to or dismissed out of hand...
On the other side of the coin - I have to consider some practical experience I've had recently with specialists who breezed through a short conversation about something serious (well, Ali's echo showed dilated cardiomyopathy - see the receptionist for a follow-up appointment in 3 months) ... and I was left standing there thinking ... well OK, I guess that's a groovy explanation for what's going on and we don't need to worry. When I did even a *little* 'net looking I was ... ahem alarmed. When I called back to say "did I hear you wrong or is it DCM" - you could HEAR the audible sigh - oh damn another one of those googling Mom's LOL LOL !!
But ... his easy breezy beautiful colorgirl outlook was ..probably appropriate. So when I think about the hostility I felt about being treated as a "dumb parent" I have to admit that it was wasted emotion on my part. Since then, I've had similar conversations with my very, very beloved pediatrician because Ali just isn't the same kid she was a year ago - she has symptoms and issues that are, distressing to HER even though, they do not seem to evoke a concern in her medical "team" - she's not feeling like a 'team member', but her Ped points out that 13 year old girls have a lot of over the top situational anxiety and that providing Ali with a damper for that is probably the best thing to do. Part of me feels exactly the way you described your feelings walking out of the eye appointment and part of me wants to look at the actual experiences we've had and go with the hale and hearty "it's chill Ali ... don't get your knickers in a twist". After almost 20 years as a parent, I STILL have the hardest time with my "reaction gauge"..
Hang in there ... what else can we do ??
Sheila
Hi Sarah -
Thanks for answering. We are going for the consult - I just had never heard of any treatment for nystagmus, and was caught off guard. We guard his vision so carefully,but we really thought that the door to *improving* it was closed. Luckily the consult is with a Dr. that we have a long history with and I trust completely, which is VERY rare when it comes to me and medical professionals, lol. So I guess we will just wait and see what he says.
Yup, I'm one of "those moms," too-- who once had a neonatologist sarcastically say to me, "Do you have a chemistry degree?" (No, I'm a teacher and a mom, and I research things that mean a lot to me!!)
I'd never heard of the ROP/later-in-life vision problems relationship either. Joshua has had surgery for Strabismus, and was diagnosed with Stage II ROP, resolved...
Sometimes I curse where we live, because of the cost (and the pollution, and the noise, and the schools...), but I read your post and found myself oh-so-grateful again for living near so many pediatric specialists.
Thank you for this blog entry. Quite a public service you are doing here.
My son had ROP beginning of Stage 3. Given the quick progression from Stage 1 to 2 to 3, they recommended, and we agree to, the laser procedure. It was a little earlier than they normally do it, but the quick progression suggested that it was going to be needed. We were told afterward, at the two follow up appointments, that he was all clear, except that he might need classes sooner than later (given their experience with previous preemies with ROP). He has a check up in a couple weeks for his 1 year follow up since the last appointment.
Can someone explain to me what happens when retinal detachment occurs years later (as teenagers, for example)? What is it that causes the detachment? And what degree of contact should be avoided?
My impression was that the problem with ROP was that there was a build up of blood vessels that could then cause scar tissue that could prompt the detachment, but at a certain point, the vessels either shrank down or one would get the laser procedure or surgery. I'd appreciate any clarification you can offer.
Does anyone have any article recommendations on this topic?
Thanks again for posting about this risk. And thank you Sarah and others for posting about your experiences and knowledge.
Regarding Kyrsten's comment:
Yup, I'm one of "those moms," too-- who once had a neonatologist sarcastically say to me, "Do you have a chemistry degree?" (No, I'm a teacher and a mom, and I research things that mean a lot to me!!)
I find the "you should just trust us" or "let the experts handle it" comments truly annoying.
A good deal of the useful information that I have received hasn't come from medical professionals but from moms. Interesting that moms' observations are often not respected.
I teach in the field of communication, where I specialize in statistics/research methods. One of the findings in the political communication literature is that knowledge acquisition is often facilitated by motivation and anxiety. Yes, that's right anxiety. People who are anxious (not to the point of paralysis but to the point of stress or tension) are often able to process information well. For example, people who are anxious about one or both of the presidential candidates will acquire and retain information about the candidates more efficiently than those who are complacent about the candidates.
My point is that if the doctors knew something about knowledge acquisition, then they wouldn't write off people who are "just moms" so quickly, because moms often have the characteristics of excellent communication processors when it comes to issues pertaining to their kids.
How obnoxious! Time for a new doc.
Laura wrote: "We've been to see several ophthalmologists and even a neuro-ophthalmologist but nobody has ever said a thing about contact sports."
HI Laura,
I first heard of it from preemie-child when, in 1 year, I think there were 2 older kiddos who had it happen.
I talked about it with Sarah before my appointment, which is why it was fresh in my head.
Since then, I've done more searching and detachment is mentioned in association with ROP in almost everything I've read.
Sheila wrote: "But ... his easy breezy beautiful colorgirl outlook was ..probably appropriate. So when I think about the hostility I felt about being treated as a "dumb parent" I have to admit that it was wasted emotion on my part."
You are so right!! After a few days passed I was able to have a new look on the situation. Yes, she is at risk for detachment, but the risk is very small at this age, which *could* be why he didn't mention it until I asked.
Note to self... don't blog about an appointment right after the appointment! lol
Sheila also wrote: "they do not seem to evoke a concern in her medical "team" - she's not feeling like a 'team member', but her Ped points out that 13 year old girls have a lot of over the top situational anxiety and that providing Ali with a damper for that is probably the best thing to do."
I can understand EXACTLY how Ali feels. When I was 13 I was diagnosed with mitral valve prolapse (mvp). My cardiologist was very relaxed about the whole situation, even through the conversation about me having to have penicillin shots before dental procedures (after one year it was changed to pills). I was devastated, feeling like I had no control and every doc was talking to my mother, and not me (which was true).
I feel for her Sheila!! She'll find a way to edge her way in and make them include her as a team member.
kate k wrote: "My point is that if the doctors knew something about knowledge acquisition, then they wouldn't write off people who are "just moms" so quickly, because moms often have the characteristics of excellent communication processors when it comes to issues pertaining to their kids."
So very true!!
Stacy,
I knew about the risk of retinal detachment. I guess it had never occurred to me that we should watch out about contact sports. Last summer Katie complained of her book suddenly looking like she was reading in the dark. Well, let's say, the ophthalmologist wanted us there yesterday! Her retina looked like her normal but she had some strange vision changes around that time.
Laura
Time to get another ophthalmologist, in my opinion. I had to go through a half dozen after I moved and still am not pleased with this one. Try to find one who has extensive experience with ROP and preemies.
I, like Paidge, like to see well, and the doctors, for some reason, want me seeing at 20/40 or so rather than 20/20. To preserve my close vision, they say. But some of us are picky about how we see.
Future of Hope--
My son has had laser surgery to repair some of his nystagmus. It helped a little bit, but his eyes are so bad that it will never completely go away. I definately think that it is worth it if you have a good doctor that you can trust.
Carla
Could someone point me to some studies on ROP and long-term outcomes?
Thanks!
== Kate
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