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Old 05-17-2012, 07:56 PM   #1
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Anyone with experience?

Long story short, after 2 years with a crappy pediatrician who felt delays shouldn't be looked into until 6yrs old we're finally with a pedi who wants to figure things out. So we've been having fun meeting just about every pediatric specialist at Johns Hopkins over the last 6 months and have several more scheduled.

So anyway, the geneticist has been sending him for all kinds of tests and evaluations. Genetically he's cleared, but everything else has come up off but not off enough to be considered an issue. He just had a head/brain MRI last week and is going to see an opthomologist soon. The geneticist sent me a letter this week she wants the opthomologist to "consider ptosis, optic nerve hypoplasia and retinitis pigmentosa during the evaluation." Obviously I've Googled all three of those and reading the descriptions of ONH felt like reading a case study of my son. He has an obviously droopy lid, so ptosis makes sense too, but I'm not so sure about the RP.

My question is, does anyone on here have experience with ONH (or the other 2)? I've read about every medical and technical thing I can find online but I'd love some first-hand stories/experience.

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Old 05-18-2012, 06:36 PM   #2
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Re: Anyone with experience?

no experience here, but have experience of "something's wrong but nobody believes me". Hang in there and sending hugs to you for strength and perserverence!
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Old 05-18-2012, 07:07 PM   #3
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Re: Anyone with experience?

Thanks. I haven't heard from radiology yet, but luckily I was able to make an appointment for next week with the opthomologist. I just want answers.
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Old 05-25-2012, 05:44 PM   #4
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Re: Anyone with experience?

Wow... so glad you switched doctors! How did the eye appt. go?
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Old 05-25-2012, 06:13 PM   #5
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Re: Anyone with experience?

It was pretty much a waste of an 1.5hr trip. He did a general test to see how DS follows things with his eyes then used something that looked like a polaroid camera to do some sort of reading then sent us home with a prescription for eyedrops to dialate his pupils. We have to make a new appointment and put the drops in before we get there so he can do the rest of the exam.

It double sucks because not only do we have to do that trip again, but I'm having surgery on my right knee Tuesday and won't be able to drive for a little while and DF has a tough time getting off work. *sigh*
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Old 05-25-2012, 08:33 PM   #6
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Re: Anyone with experience?

I have never had a pediatric opthamologist let the parent put the drops in the eye much less make us come back. We are on our 3rd pediatric opthamologist and they all do it the same. Nurse comes in talks to us about experiences and concerns then does the eye drops we go back to the waiting room and 20 minutes later they call us back for an appointment with the pediatric opthamologist. Maybe he had a good reason but honestly it sounds bizarre to me.
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Old 05-26-2012, 10:23 AM   #7
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Re: Anyone with experience?

He said it's because the little kids just get upset and uncooperative if he does that. So the drops have to go in once every 12 hours starting the morning before the appointment. I was really frustrated that I'll have t make yet another trip, but he's the closest pediatric opthamologist my insurance covers without going into DC.
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Old 05-26-2012, 02:19 PM   #8
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Re: Anyone with experience?

Hmmm, possible. All Alec's Ped. Opthamologists are older then God, okay slight exaggeration but not by much so maybe this is some new theory.
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Old 05-26-2012, 09:59 PM   #9
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Our daughter was born w b/l congenital cataracts, I always told pedi that I felt something was wrong and her eyes didn't appear normal to me. Long story short when she couldn't track objects he sent us to a pediatric opth who dx her, she had surgery at 10 weeks and multiple surgerys since plus years of contact wearing as a baby!! She's doing well actually great.
Anyway, we drive to Philadelphia for appts so roughly two hours away, our md gave us the atropine and I just dilate her eyes bf leaving for appts, however he has in the past given her drops in the office and had us wait til her pupils were dilated dt our long drive. They have/had no problem w us administering the drops in the office also, whatever makes DD more comfortable.
I'd say find a ped opth who u really trust and will work w you.
Good luck, I hope everything works out and I'll be thinking of your family
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Old 05-27-2012, 05:44 PM   #10
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Re: Anyone with experience?

My almost 5 year has ONH, or Septo Optic Dysplasia. She had an MRI done after seeing a pediatric ophthalmologist to confirm it when she was an infant. With ONH, the obvious sign is the nystagmus, uncontrollable eye movement due to very few optic nerves. My daughter has 20/60 vision in her right eye, and maybe a little bit of light perception in her left eye. Not only that, but she is also missing the midline part of her brain, septum pellucidum, and has a smaller than normal pituitary gland. As of yet, she has no hormone imbalances, but she does have developmental delays.
I hope you get answers soon.
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