NOAH AOC

All,

 Well, I guess it was expected, but I was hoping for better.  We took our daughter (OCA) for her first visit with the PO and it was just an absolute nightmare.  She's 20 months old and OBVIOUSLY has a vision impairment... you can just watch her for five minutes and see how she examines things, how she doesn't see you if you are more than about 5 feet away.  However, this doc thinks she sees "fine" and that its normal for all kids to hold everything about 4 inches from their face, and oh yea... all persons with albinism fall within the range of 20/60 - 20/100 so there's no justification for estimating her acuity (which he refused to even attempt to estimate) as 20/200 so she can qualify for services.  "They don't even do anything at this age anyways", he says.  When I mentioned that I understood otherwise, he asked me specifically what they work on and then didn't seem to want to listen. And while he did notice astigmatism, he refused to prescribe glasses since "it won't matter and she won't wear them anyways".

 It was like my worst nightmare come to fruition... and my only goal had really been just to get her acuity documented so we can start with services. He finally agreed to write a letter that implies that vision services might be helpful as she "someday" might have a vision impairment.  And when I told him this would create problems for us if she didn't have an estimated acuity, he says "Well, I'm not going to lie".   What a disaster... 

 Please commiserate with me!    I was in tears leaving the office, and feel like a total failure for walking out of there without a documented acuity.   Now we wait to get in with Dr. H... I'm not messing any more with local docs with no experience with the albino eye.

 - Megan

Megan,

I'm so sorry to hear of your awful experience.  What kind of doctor would say such unprofessional things?!  For Ryker to qualify for early intervention we just had to have documentation of his diagnosis.  Do you really need to have an acuity number for your daughter to qualify?  I would think that, especially at her age, a diagnosis of albinism or low vision would be enough to qualify cuz acuities are just estimates at this age anyway.  I'd look into other ways to get services for her and definitely not return to that doctor!  Just remember you are doing the best you can and already seem very aware of what is best for your daughter and your are her best advocate!

Good luck and don't give up,

Kelli

Megan,

I am so sorry you had this experience.  I just don't get it.  How can someone call themselves a pediatric ophthalmologist when they clearly have no idea what albinism is or how it affects the eye, development, etc.?  The bottom line is that albinism causes some degree of low vision, and if a PO doesn't know that then they don't need to be practicing!  Ugh!  I am sick today and feisty!  Anyway, I can't remember where you are located, but in SC, we only needed a diagnosis of albinism from the PO in order to get started with Early Intervention.  Can you just get him to document the albinism diagnosis?  And, how does he know she won't wear glasses?  Zach started wearing his full time at age 2.  Do not feel like a failure.  It is the doctor who is failing you and your family.  Is there anyone else in your area you could call first to see if they have experience with albinism while you await a visit to Dr. Hertle?  And clearly his statistics are wrong.  Not all persons with albinism fall between 20/60 and 20/100.  I don't have a medical degree, but even I know that.  I wish I could wring his neck for you.  Seriously!

I am sorry to hear about your experience. If you are like me you already think you are making a bigger deal than it really is then this just gets you thinking like that again. DON"T  You know your child more than anyone (even dad)  You know what they need and all you need to do is just figure out the way to get it.  We didnt need our PO to start EI services.  Call the county you live in and they should be able to point you in the direction. We live in Ohio.  Hang in there!! and remember you ARE doing the best you can and everything happends for a reason, you will look back on this and be glad you made it thru - because you will you know!!!

What a moran!!!!! Seriously, we need to report these stupid ignorant doctors...

I am sorry you went throught that. That was terrible!

Thank you everyone for your replies.. I thank you so much for sharing in my frustration!!!   I knew the minute he mentioned the acuity range he thought all persons with albinism have that we were in for it... I should have ran then. :)   Between this, and a ped who keeps saying she's got "partial albinism" bcs her eyes aren't white , I really wasn't getting much help from the medical community.

Thought I would provide an update, too... I feel a million times better tonight.   When I got home, I put in another call to our county's children's coordinator for our state's Commission for the Blind (New York).   I told her our situation and just hoped for the best.  Thankfully,  she is very knowledgeable about albinism and realizes that this doctor's assessment is inacurrate.   She laughed when I told her he wrote about her "possible future vision impairment", saying "but she's visually impaired NOW!".   She is going to get our daughter in with her favorite low vision specialist, and it sounds like she will help us work with EI to make sure they get her set up for vision services just based on the albinism alone, despite this docs "report". So yay!  I finally have found someone who "gets it" and am confident that I now have a powerful ally in making sure our daughter receives everything she needs.  I finally feel like things will be OK...

 - Megan

Hi Megan,

I'm glad things are looking better as far as getting the EI services set up.  I was going to tell you that you don't need a diagnosed visual acuity or even  a range for your child to be eligible for EI services.  Your daughter doesn't even need to have a developmental delay to receive the services.  ALL children with albinism automatically qualify for EI services based on having a medical diagnosis which is known to result in a developmental delay.
Even if your child is developing AT AGE LEVEL, she is still eligible for services. 

Regardless...it doesn't sound like your child's PO is very qualified.  At the least...he is acting very unprofessionally.   Talk to the person from the Commission for the Blind again.  Maybe she could talk to some other parents of kids with albinism in your area and possibly refer you to some good doctors.  Let me know if you have any other questions about the EI services.  I'll do my best to help. 

Mashawna 

Where in NY are you? I am in the Abany area and have a great PO and low vision specialist.  Are you in touch with Lauren at CBVH?

Charlie:

Where in NY are you? I am in the Abany area and have a great PO and low vision specialist.  Are you in touch with Lauren at CBVH?

We are in the Syracuse area.  Carol is our county's contact at the CBVH, we actually meet with her for the first time tomorrow... she seemed amazing, and I'm so excited to finally talk to someone who really knows about albinism.   She supposedly knows a very good low vision specialist, who she'll hook us up with... we'll see. 

 - Megan