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Home > Archive > Vision > April 2006 > 6 year old with low vision & no diagnosis- I thinink we need an advocate
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6 year old with low vision & no diagnosis- I thinink we need an advocate
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| mom2kt 2006-04-07, 1:30 pm |
| 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!
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| acemanvx@yahoo.com 2006-04-07, 6:34 pm |
| 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.
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| mom2kt 2006-04-07, 6:34 pm |
| 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.
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| Dr. Leukoma 2006-04-08, 11:30 am |
|
mom2kt wrote:
> 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.
Bilateral amblyopia is certainly possible, but without knowing the
prescription, no intelligent conversation can take place.
DrG
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| doctor_my_eye@msn.com 2006-04-08, 11:30 am |
| 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.
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| mom2kt 2006-04-09, 1:32 am |
| 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!
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| mom2kt 2006-04-15, 11:26 am |
| Her current contacts (received today) are as follows:
Left eye: sph +6.00 cyl-.75 ax20
Right eye: sph +6.00 cyl -.75 ax 160
Using these, she corrects to 20/70.
Using these contacts, she can correct out to 20/70.
If this were your child, what would you be doing to gain a diagnosis
for her?
Spinal tap?
Rectal biopsy for Batten's disease testing?
Demanding to see a neuro-ophthalmologist?
Is it rare to have a child with low vision without identifying the
cause? Obviously something happened (between 3.5 years old and 4.5
years old) that caused her vision to deteriorate considerably.
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| Dr. Leukoma 2006-04-15, 11:26 am |
| What is self-contradictory about bilateral amblyopia, which simply
means reduction in vision without apparent pathology. Have you not
heard of meridional amblyopia? Have you not had a single case where a
child with a high hyperopic prescription manifested subnormal acuity in
both eyes? Granted, it is more rare than amblyopia ex anopsia.
I agree that something seems fishy here. For example, I am wondering
what would have prompted an eye examination at the age of 3 years with
a finding of only a small amount of farsightedness? A small amount of
farsightedness is quite a "normal" finding in a 3 year/old. Also, what
does "steadily progressing toward 20/20 vision" mean when the child
starts off at 20/30? Does this mean 20/25? Also, the mom states that
the child has short periods of 20/20 vision while straining through the
eyeglasses, and one eye crosses. The presence of 20/20 vision in both
eyes, even for a short time pretty much eliminated amblyopia as a
diagnosis as well as any optic nerve problem. Sure sounds like
accommodative esotropia to me, but no information about the refraction
was submitted. If the child has a right eye esotropia now, why not
before?
DrG
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| mom2kt 2006-04-15, 11:26 am |
| We highly doubt that she is "playing games" with us. We could tell her
vision was a bit of a problem prior to taking her to the doctor at 4.5
years. She had started bumping into the furniture a lot and was
having problems with depth perception. We just figured that she would
need glasses before she started kindergarten. We were very surprised
to find out her vision had changed to that degree. It was also at
this appointment that she could not do the "3-D fly" test. She kept
trying to put her hand through the book to get to the wings of the fly.
In hindsight, we can identify the fact that she was having problems
with vision by her lack of coordination with bicycle riding,
scootering, walking up and down stairs, walking on uneven pavement,
etc.
Additionally, at 3.5 years old, her vision was 20/30 left eye and 20/40
right eye Without corrective lenses.
We started seeing a new eye doctor in December and that is when talk of
contacts came up. Yes, our daughter was excited about the idea, but
what six year old with heavy bifocals wouldn't be? She has suffered
teasing from other kids telling her that her glasses were broken long
enough. The contacts are incredible for straightening the right eye!
She doesn't complain about her eye looking at her nose anymore!
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| mom2kt 2006-04-15, 11:26 am |
| When our daugher was about 18 months she had her tear duct popped open
by an ophthalmologist. After that procedure, the doctor recommended
that we continue seeing an eye doctor every year. We followed his
advise and that is why she was getting tested yearly.
Here is the information I'm trying to decipher from her chart...
(forgive me if I am incorrect in how I write this, the handwriting is a
bit tough to read and quite frankly, it's like learning a foreign
language to me)
age: 2.5 years:
static
OD +2.00+100x90
OS +2.75+75x90
Good eye movements, no restrictions. reflexes bright and normal o.y.
normal pupillary reflexes. Could not get patient to respond to
richmond paddle, or broken wheel test.
age: 3.5 years:
left eye: 20/30
right eye: 20/40
static
OD +150
OS +150
broken wheel at 50 (assume cm?)
age: 4.5 years:
Unaided acuity OD 200, OS 200 CU 200
Near acuity OD 20/70, OS 20/70, OU 20/70
static
OD +6.50
OS +6.50
Book ret.
OD +800
OS +800
New RX
+400 (R20/140, L20/200)
+600 (R20/140, L20/200)
+200 (R20/140, L20/200)
NPC 4" / 8"
Pursuits: gl. jerky (I guessed at these words- very difficult to read)
Normal eye movements, no restrictions, reflexes bright and normal.
stereofly - only fly
It was after this appointment that our doctor told us to see our
pediatrician and request an MRI and neurologist visit. We did and that
was when they found the cyst in the pineal region (an incidental
finding?).
Since then, we have been working on trying to find out what caused her
vision loss and why it doesn't correct out.
Normal eye movements - no restrictions,
1.5 months later, we went to another eye doctor. He did that test with
the machine and the balloon while her eyes were not dilated and then
dilated. Here are the results of that:
Not dilated 1st test: right eye +3.75-.5 135 reflex 27
left eye -2.00-.5 156 reflex 44
Not dilated 2nd test: right eye +1.50-1.25 168 reflex 77
left eye -.25-1.75 20 reflex 57
dilated 1st test: right eye +6.25-0.75 174 reflex 55
left eye +6.00-1.25 21 relex 56
dilated 2nd test: right eye +6.50-1.25 167 relfex 26
left eye +5.50-1.25 21 reflex 63
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| Mike Tyner 2006-04-15, 1:18 pm |
|
"William Stacy" <wstacy@obase.net> wrote
> Dr L: Have you not
>
> I have not, admitting to my less than universal knowledge and my weakness
> in the game of trivial pursuit.
How about a high astigmat who didn't correct to 20/20 in their first pair of
glasses?
-MT
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| Dr. Leukoma 2006-04-15, 1:18 pm |
| I had a similar situation involving a young girl with high hyperopia.
Her nickname was "puppydog" and she was always at her mother's "apron
strings," i.e. followed her very closely, clumsy, bumped into things.
She had no esotropia, and refracted at +6.50 in both eyes. Initially
she could not be corrected to 20/20 in either eye, but eventually it
came to pass that she developed 20/20 in one eye and remained very
slightly amblyopic in the other eye.
DrG
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| mom2kt 2006-04-15, 1:18 pm |
|
William Stacy wrote:
> mom2kt wrote:
>
>
>
> Did she get glasses at that time? No
>
> I take it no glasses from this exam? You are correct, no glasses yet.
>
>
> Seems like a different child, but more likely a better exam/examiner. Same child, same examiner.
>
> I suppose that was her bifocal Rx? At least her first "full power Rx"
> which it is not at all surprising that she would have low acuity at far
> until her accommodation settles down. I'll bet she was better than 20/70
> with that Rx within a day or so of full time wear. She did wear them
> full time, right? Right????
>
> She still didn't get glasses at this point. She wouldn't cooperate for dilation that day so we decided to go to another doctor and get an optomap and (dilation - if necessary) from another dr. We have a very shy child and we didn't want her regular dr
. to upset her and then not be able to work with her after that.
>
> No sign of a cover test or even a Hirschberg/angles Kappa yet. May be
> an incompetent doc.
I'm not sure what these tests are. There are a couple more notes in
her file, but since I can't make heads nor tails out of them, I didn't
include it.
>
>
> How long did she actually wear the strong bifocals? We still didn't have bifocals. We only received regular glasses 6 weeks after the initial yearly exam. I can't tell you what the prescription was because I can't understand the chart. Here's what it
states.
retinoscopy: od +6.00-1.00x170, os +6.00-1.25x020
subjective: od+5.00-1.00x170, os+5.00-1.25x020 * compromised rx to
improve adapt.
>
>
>
>
> The child needs to wear an Rx full time and recheck the acuities and
> manifest refraction AFTER she has kept them on all day, every day for at
> least a week. If you don't do that, of course you will get garbage. The
> poor thing can't decide whether she wants uncomfortable clear double
> vision or comfy blurred single vision. And her accommodative response
> will be wound up tighter than a 7 day clock making a real binocularity
> evaluation impossible. The full time Rx will settle that all down and
> give her clear single vision.
>
Upon receiving her glasses, she has been wearing corrective lenses of
some sort everyday since then. (Since August 2004) We've done
patching, we've added the bifocals, and now we've added the contacts.
We've had four different pairs of glasses and numerous different pairs
of contacts since then. She just went back to single vision glasses
yesterday.
> I suspect she is a normal little hyperope who's been misdiagnosed and
> mistreated several times. S**t happens...
Do you really think that 4 different ophthalmologists and optometrists
(plus various specialists at Cal) all misdiagnosed her for the past 1.5
years? They all seemed to be stumped and we have become a ping pong
ball that is paddled between the fields of ophthalmology/optometry vs.
neurology.
>
> w.stacy, o.d.
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| mom2kt 2006-04-15, 1:18 pm |
| This is very encouraging! How long did it take for her vision to
improve once she started wearing corrective lenses? Am I correct in
assuming that once a child learns to relax using their corrective
lenses, then they could possibly accept more and more correction until
they correct out fairly normal vision?
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| Mike Tyner 2006-04-15, 1:18 pm |
|
"William Stacy" <wstacy@obase.net> wrote
> Of course. I guess I see why that could be called "meridional amblyopia"
> but I would prefer something like "astigmatic macular deprivation" or
> something.
Mm.. As I understood it, the pathophysiology is the same as amb ex anopsia.
In "meridional" the effect is limited to the retinal receptive fields with
less favorable orientations in each eye.
A +600 -400 x 090 might grow up without ever seeing horizontal lines.
-MT
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| mom2kt 2006-04-15, 6:21 pm |
|
William Stacy wrote:
> mom2kt wrote:
>
>
> Was one eye turning inward (seriously crossing) during the above test?
> If not, then I'm having trouble believing your story, as high hyperopia
> doesn't develop after age "3.5", unless something is pushing on the eyes
> from behind, and I take it bilateral retrobulbar masses have been ruled out?
Well, I guess you'll have a hard time believing my story, but NO her
right eye was not turning inward at that point. In fact, it wasn't
until about March 2005 (5.5 years old) that her eye doctor became
concerned with the fact that it was slightly turning inward. The
patching helped and we were told to stop patching. Eventually, the
inward turn slowly came back, only this time, it was much worse.
>
>
> Came up? Who brought it up?
I inquired about it. The reason I did was because I noticed her
looking above her glasses a lot. Additionally, her inward turn was
very pronounced at that point. Yes, when she used her glasses
correctly and didn't look over or under them, then her eye was
straight. But kids will be kids and it just wasn't working for her.
The doctor agreed to give contacts a try.
>
> Yes, our daughter was excited about the idea, but
>
> Heavy bifocals? At that age they are tiny and very light weight.
> Again, whose idea were the contacts?
Yes they are tiny, but no they are not VERY light weight. She is a bit
sensitive to light so we opted for clip on sunglasses which just made
the weight unbearable, especially in the summertime heat. The place we
purchased her glasses from was not able to do her bifocal prescription
in light weight lenses with the Transitions. Hence, the heavy glasses.
>
> She has suffered
>
> Long enough? For how many years did the child wear bifocal glasses?
Obviously you are not a parent... Who can tolerate teasing of child
for any length of time? To answer your question, we got the bifocals
around the same time we started patching (March 2005)
>
> The contacts are incredible for straightening the right eye!
I took the school district vision specialists with me to the
appointment when my daughter got her contacts. We were both absolutely
amazed at how her eye went straight the second that lens was put in.
The vision specialist at the school still comments on how profound the
change.
[vbcol=seagreen]
>
> Wrong answer. The contacts will not do as good a job as a spectacle
> bifocal if one is warranted. Your credibility has gone negative.
>
> w.stacy, o.d.
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| Neil Brooks 2006-04-15, 6:21 pm |
| Ok, Docs ... I'm way out of my depth here, but this kid sounds like me
at that age.
How about:
- full Atropinised (x 4days) toric Rx in soft CLs
- over Rx prisms for non-accommodative component of 'tropia??
- perhaps bifocal to assist in near work (with prism included)
Monitor oh-so-closely for variations in refractive error, alignment, or
changes in accommodative function.
If this tends to work, I'm thinking evaluate for ICL (provided anterior
chamber depth is adequate) and--if the non-accommodative portion
warrants--strabismus surgery.
Thoughts?
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| CatmanX 2006-04-17, 1:22 am |
| Sorry Neil, but this is not a good option, not for some time at least.
Before you start stuffing around with surgery, you need to know exactly
what is going on.
Given the kid is +6.00 and a bilateral amblyope with straight eyes, it
is a pretty easy diagnosis as to why she is the way she is. There are 3
presenting types for high hyperopes.
1) Want things clear, so accommodate and get turn and dense amblyopia
due to turn and misalignment.
2) Want things clear, so accommodate somewhat, get accommodative spasm
and end up with anisometropic amblyopia. Script roughly plano in one
eye and +6.00 in the other. As eyes are straight, amblyopia is less
dense as it is only due to blur, not suppression.
3) This kid: lets things stay blurry, is clumsy and lives in a blur.
Eyes stay straight due to defocus, amblyopia develops in both eyes due
to defocus, easy enough to get vision restore with correct
prescription, maybe some patching/occlusion required.
dr grant
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| mom2kt 2006-04-18, 6:22 pm |
| Our HMO has decided that our daughter now needs an OCT scan and a new
plan doctor before they will provide a referral to a
neuro-ophthalmologist. Can anybody tell me what this test looks for?
How is it done? I've been told that she will not be sedated -
therefore, I assume it's a fairly quick non-invasive procedure??
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