ROP in 9 month old experiences?

[ozy20]

Infant peripheral vision problems

Does/Did anyone’s babies (Under 1) have issues with their peripheral vision? My girlie (9m actual) is having some odd symptoms I guess you would say, and myself and her physical therapist are questioning if she may have something wrong with her peripheral vision. I can go into more detail if necessary.

Anyone have any experience?

I can go in detail of what she’s doing if needed.

 

[biblenewsfeed]

@ozy20 Mine had ROP. He got constantly screened. I have been told by doctors that if it doesn't get fixed naturally after 3/4 months from the expected birth, then laser or other interventions might be used. I would contact the doctors on my area for a check up.

 

[sirsteve]

@ozy20 Did your baby get screened for ROP while in the NICU and what was the outcome?

 

[ozy20]

@sirsteve She did. Her last eval showed immaturity still and insurance prevented rechecks

 

[audrey32]

@ozy20 We were told to simply go to the er if you’re still trying to rule rop out. Our insurance won’t allow ophthalmology to check our 10 month old without being either cleared for rop or referred to an rop specialist, but the awesome person I spoke with said that getting it checked by the er is a way around the system.

 

[be_a_light]

@audrey32 That is not a way around the system. We are not going to make all of the patients in our office who scheduled a year in advance to wait because you didn’t get the proper referral.

 

[audrey32]

@be_a_light I’ve gotten plenty of “proper” referrals for months I’ve been trying to find any appointments even a year and a half out. But you wouldn’t know that. You also wouldn’t know that every single one that I’ve been referred to has told me the exact same thing “we can’t see the little one without being cleared of rop please check with your neonatologist (the one that literally freaking recommended us to them and wrote a prescription for us to see them)” but you can’t bother to ask about the situation and instead just assume we are acting entitled because we are trying everything to get an appointment to get answers for our babies.

 

[be_a_light]

@audrey32 I was answering as an ROP nurse for 25 years.

 

[audrey32]

@be_a_light And I was answering as a Nicu parent who is still working on getting a diagnosis.

I’m not trying to “skip the line” or “make all of the patients who scheduled appointments a year ago wait” even though my daughter wasn’t born a year ago so how am I supposed to have scheduled by then? I’m trying to get an appointment. Period. Rop specialists tell me she needs to be officially diagnosed with rop whereas pediatric ophthalmologists tell me she needs to be cleared of it. All before they’ll even set an appointment! So how the heck am I supposed to do that when the only ones that are “able” to either diagnose or clear rop is the neonatal ophthalmologist who is only covered by insurance until discharge from the Nicu?

 

[be_a_light]

@audrey32 I understand where you are coming from as a patient. But most hospitals do not have pediatric ophthalmology on staff. My office is the only office within a 5 state area. We fly 2-3 times per week to cover another NICU.

That’s why it’s not a good reason to take time and money to go to an ER for this sort of clearance because the chance of being seen for the exam needed is slim to none.

What would happen if you called my office is we would immediately get on the phone with your insurance to see what we need to get you in. At my office, NICU follow ups come first and cannot fall through the cracks. That doesn’t happen everywhere, but unfortunately the ER is not the solution to a lack of providers. I wish it was.

 

[audrey32]

@be_a_light Unfortunately I live on the east coast and to even get in to see her various other specialists (pulmonologist, cardiologist, gastroenterologist, spinal surgeon, ent, nephrologist, and even physical or feeding therapists) I have to make appointments nearly a year (8-11 months for each) ahead of time. Or I talk with my insurance, get approved for the possibility of admission to the hospital and bring her to the ER.

Honestly coming here from the Midwest (where I could get an appointment with any of her specialists in a few days tops) has been a huge shock especially when dealing with doctors with a medically complex baby.

 

[be_a_light]

@audrey32 All of our appointments are a year out also. NICU follow ups are one exception as well as things like born to a mother with active herpes, child with high prescription that breaks or loses their glasses, something in the eye. We do see all the babies in both the NICU and PICU that have an emergent situation but cannot come to the office. We do not admit for an eye exam. We would have you seen within 7 days though at our main hospital, or on our next shift at whichever hospital we fill in at closer to you. We also use the Ronald McDonald house to have people drive to our main hospital to see us because we can only get to most hospitals once a month.

I really don’t mean any harm by my comment. The mama bear in me as a NICU mom myself says do whatever you can. But in most places an ER visit will not help with ophthalmology because we are so understaffed nationally.

 

[audrey32]

@be_a_light And just a side note to add… her hospital back in the Midwest was associated with the Mayo Clinic so we had access to any specialist that we needed

 

[straykat]

@ozy20 My son has been patched on and off, he’s had 2 eye surgeries and got glasses at age 2. If you’re not being seen by a pediatric ophthalmologist that’s definitely something to pursue asap!

 

[gloryriver]

@ozy20 Yes, we have diminished peripheral vision due to ROP treatment. He has adjusted quite well and you could barely tell nowadays.

Untreated ROP can absolutely cause similar problems. I'd definitely recommend trying to get another check; hopefully insurance will cover it if she has clinical symptoms. You may need the pediatrician to provide a referral.

 

[be_a_light]

@ozy20 ROP treatment can cause peripheral vision issues where the laser spots or injections spots are. It doesn’t sound like your infant was treated though if you were needed more follow ups.

Was treatment administered?

What is the insurance wanting in order to do the follow up?

Rarely in the US did we need any additional paperwork to set up a NICU followup, but they are important.

 

[ozy20]

@be_a_light No treatments. Her last visit showed immaturity still.
Haven’t had a follow up since then.

The original office just stopped taking her insurance and I haven’t been able to find another that will take it and see her since she’s under 1. I managed to get her an appointment tomorrow though it’s just over an hour away

 

[be_a_light]

@ozy20 Ok, great! Unfortunately the drive is not unusual for pediatric ophthalmology as we have some patients drive from 3 states over. Good luck!!

 

[ozy20]

@be_a_light I saw that you are an ROP nurse in another comment. Would untreated ROP cause peripheral vision loss at 9 months old?
I can explain more about why we think she may be dealing with that if needed.

 

[be_a_light]

@ozy20 Are you noticing a loss of peripheral vision as in the vision was there before and now it isn’t, or are you noticing a deficit in peripheral vision as in baby maybe never had great peripheral vision? ROP would be there since birth so it would be more like a deficit that was always there.