I was diagnosed as having macular degeneration during pregnancy.
(Apparently, I have the eyes of an 80 year old.  If you see an 80 year
old with really good eyes, tell them I want them back!)

The dye used in the fluorescein angiography is contra-indicated for
pregnancy and lactation, with there being significant confusion and lack
of clear info in both areas.  I have chosen not to use it during
breastfeeding, even as my son got older, as it will circulate in my
milk, and in my son's body.  I've also chosen not to wean in order to
get the procedure done.  As it's used as a diagnostic, not a treatment,
we all decided to take really good photos of my eyes, without the dye,
instead.  (That's all the dye is used for, revealing the precise damage.)

In the three years since my diagnosis, the local optician now has the
facility to take the photos in my eyes, better than the specialist in
the hospital.  (This is partially an NHS funding issue).

The issue with the photographs, and early onset macular degeneration, is
more about tracking the pathway of the degeneration, than taking
immediate action/treatment.  Obviously, this Mum may have a different
condition, but for me and my macular degeneration, and the photos, it's
about spotting when it stops being drusen and (if) it starts being blood
vessels growing over the back of the eye and destroying the retina.
Simply looking at a grid every day, and taking photos every six months,
is enough for me to feel confident we're tracking it appropriately.   So
it may help this Mum to ask more questions, if she knows this route is
open to her.  Is treatment really necessary, or are they going straight
for treatment as a precaution?  Would monitoring alone be an appropriate
choice for her?

As I said, my circumstances may not over lap enough to be useful, but
the extra info may be useful to someone, somewhere.  And at least she
knows she's not the only one to have faced this!  I had a hard time too,
sitting with the rather more aged patients, awaiting my eye exam, whilst
pregnant.  And when I asked if the drugs they put into my eyes to make
them open for the exam, were safe for pregnancy... what a flurry of
panic there was!  No one had ever asked before.

Of course, not quite the same flurry of utter shock and disbelief when,
with an 18 month old in tow, I explained that no, I would still be
breastfeeding in a year or two, probably.  Quite upset the female
specialist that day, she was clearly disgusted!  Luckily, her boss, was
perfectly happy and sent me off to the opticians for their better camera!

http://www.health.gov.il/units/pharmacy/trufot/alonim/2280.pdf

http://www.medsafe.govt.nz/profs/datasheet/f/fluoresciteinj.htm

Morgan Gallagher


Liz Brooks wrote:
> A very BF-friendly ped called me .... on of her patients (well, patient's mom) was recently diagnosed, inher early 30's, with macular degeneration.  Mom has a nine-month-old who BFs about 5 times daily.
>
> The Eye MD is giving mom the choice of: Avastin IV eyedrops (or) photodyanamic therapy, where mom has some sort of dye injected, making her very sun-sensitive for five days, and then lasers are used (in the eye?) to deal with the macular degeneration.  He was stumped when she asked about lactation -- he said his customary patient with this condition is way past lactation age!

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