6 year old with low vision & no diagnosis- I thinink we need an advocate

Discussion in 'Eye-Care' started by mom2kt, Apr 7, 2006.

  1. mom2kt

    mom2kt Guest

    My 6 year old daughter has low vision without a diagnosed cause. We've
    been great about getting her eyes checked yearly since she was a little
    over 1 year old. In a nut shell, here's what's transpired:

    Tested slightly farsighted as a baby.
    Her appointment at 3 yrs 8mos was 20/30 left eye, 20/40 right eye.
    Vision was progressing towards 20/20 yearly.
    Her appointment at 4 yrs 8mos indicated 20/120 left eye, 20/180 right
    eye (she also lost depth perception and was bumping into everything).
    This started a huge number of doctor appointments & testing because of
    the big step backwards.
    1. Optomap retinal scan - results normal
    2. Neurologist referral
    - tested for Lebers Hereditary Optic Neuropathy - results negative
    - tested for Battens disease (Juvenile onset) - results negative
    3. MRI - discovered a cystic lesion measuring 1.8cm x 1.4cm transverse
    x 1.3cm cephalocaudad. It does appear to impress upon the
    quadrigeminal plate. We are monitoring this with additional MRI's. (3
    to date)
    4. Neurosurgeon referral - Seems to think the cystic lesion is an
    incidental finding and not causing vision problems.
    5. ERG - results normal
    6. VEP - results normal
    7. Numerous blood tests
    8. Patching the bad eye
    9. Tested for Batten's disease - infantile onset - results normal
    10. Re-tested for Lebers.
    11. Audiology testing - results normal
    12. Visual aids appointment - my daughter picked a lighted stand
    magnifier.
    Through out the above testing process, we received numerous pairs of
    glasses which were not able to fully correct her vision. She now sees
    about 20/70 distance vision and can strain her eye muscles enough to
    read up to 20/20 for a very short period of time (a few minutes tops)
    with her contacts or bifocal glasses. She also has astigmatism and her
    right eye test to cross inward at her nose. Without corrective lenses,
    she tested 20/200 in her left eye and worse than 20/400 in her right
    eye (she was off the chart we were using so we stopped testing)

    Here are my concerns:
    1. She is having a very difficult time with reading because of the eye
    problems. I've had to hire a tutor to work with her on this since I
    wasn't able to get what we needed through the school district.
    2. If I don't get her low vision problem diagnosed, then I feel that I
    can't stop her vision from deteriorating further.
    3. She is being bounced between ophthalmologists &
    neurologists/neurosurgeons because neither can find anything that may
    contribute to this problem.

    Additional testing that's been mention, but not done...
    1. Rectal biopsy to rule out Batten's disease
    2. Lumbar Puncture to check the CSF pressure
    3. EEG

    I am currently gearing up to battle the insurance company in order to
    have my daughter see a neuro-ophthalmologist. In the meantime, we've
    gone outside of our HMO and have been seeing a wonderful optometrist
    who is getting my daughter to accept a little more correction.

    I am asking for your professional opinions (for those of you who are
    eye care professionals) and any leads for a patient advocate who
    understands vision problems in children and/or how to navigate the HMO
    healthcare nightmare. Any advise is appreciated!
     
    mom2kt, Apr 7, 2006
    #1
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  2. mom2kt

    acemanvx Guest

    has anyone ruled out amblyopia? If one or both of her eyes are lazy or
    wandering and not correcting to 20/20, it sounds like it.
     
    acemanvx, Apr 7, 2006
    #2
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  3. mom2kt

    mom2kt Guest

    We patched the left eye for awhile because of the right eye was turning
    inward. I don't believe that any of her doctors have used the word
    amblyopia, but I've heard it a lot.
    Is amblyopia possible in both eyes? I thought it was when one eye shut
    down it's "connectiion" with the brain.

    If her vision was just changing for the worse, but she was still able
    to correct out to 20/20, I'd feel a lot better about not needing to
    know the CAUSE of the vision loss. However, since she is changing for
    the worse and CANNOT correct out to above 20/70, am I right to be
    concerned? Currently, in order for her to keep correcting out at
    20/70, we see the eye doctor about 1-5 times a month (for the last 4
    months) to keep adding correction to her prescription. This just
    doesn't seem normal to me.
     
    mom2kt, Apr 7, 2006
    #3
  4. mom2kt

    Dom Guest

    Do you know your daughter's retinoscopy result? I'd imagine the
    optometrist would have done this test, if not the ophthalmologist. This
    would be just about the first piece of information I would like to know.
    Especially since you said the eyes turned inwards at one point. If this
    is not available could you post her spectacle and/or contact lens
    prescription?

    Do you know whether she has had a cycloplegic refraction or cycloplegic
    retinoscopy? (Eye drops to relax the focussing muscles).

    BTW you asked for information from eye care professionals, be aware that
    acemanvx is enthusiastic and probably well-meaning but definitely not an
    eyecare professional and has provided some quite misleading information
    in the past.

    Dom
     
    Dom, Apr 8, 2006
    #4
  5. mom2kt

    Dom Guest

    You're right it's usually in one eye but less commonly it can be in both
    eyes.
    Your thinking is spot on, the fact that she can't correct to 20/20 (or,
    given her age, at least 20/30 or so) is the concern. Yes you're right to
    be concerned.

    Currently, in order for her to keep correcting out at
    Based on what I've read so far, I'm thinking high hyperopia
    (long-sightedness) ... at least this is the first thing I would want to
    investigate. In general, always consider the more common/obvious
    possibilities first before worrying about the less likely scenarios. But
    I'm definitely keeping an open mind. Your answers to the questions on my
    other (earlier) post will help.

    Dom
     
    Dom, Apr 8, 2006
    #5
  6. mom2kt

    Dr. Leukoma Guest

    Bilateral amblyopia is certainly possible, but without knowing the
    prescription, no intelligent conversation can take place.

    DrG
     
    Dr. Leukoma, Apr 8, 2006
    #6
  7. Your "outside" optometrist should be able to help you by working with
    your daughter's primary care practitioner.
    The CSF tap is to look for a condition known as pseudotumor, which
    causes a bilateral amblyopia in children when the CSF pressure is high
    enough to press on both optic nerves to cause a bilateral optic
    neuritis. That's an interesting theory, as most pseudotumor kids have
    massive headaches, which you haven't mentioned. Lead poisoning can
    also cause bilateral amblyopia, so make sure your child hasn't injested
    a piece of lead jewelry or paint chips.
    Primary care physicians have a tremendous amount of power in the HMO
    scheme of things, so he/she needs to be your best friend/advocate.
     
    doctor_my_eye, Apr 8, 2006
    #7
  8. mom2kt

    mom2kt Guest

    She definitely doesn't have headaches. The only real symptom thus far
    is the low vision / vision deterioration. As for the lead, we've
    tested twice now. The latest result was <2.0mcg/dL. I've been told
    that anything under 9.9 is fine.

    I'm in the process of waiting to see if her HMO will approve the
    request from her primary care doctor to see to neuro-ophthalmologist.
    Last time we tried, they wanted me to drive 150 miles to see another
    pediatric ophthalmologist within their system. ...Fingers are crossed
    that they will approve the latest request!
     
    mom2kt, Apr 9, 2006
    #8
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