Hi Donna,
I'm sorry to hear about Ethan's eyes. Julia's pupils started to dilate at around
14 months and within a year they were very sensitive to light. Julia now uses
cyclosporine ("Restasis") eyes drops twice a day and over several months we
noticed a considerable improvement. They can sting a little, so it is helpful to
give artificial tears about 5 minutes before. Julia has also been on MMF, an
immunosupressant, for 2 months now and we have noticed an improvement in her
photosensitivity. Are Ethan's eyes also dry? Julia's were terribly dry, but
these 2 treatments have helped that too.
We have a lot of little sunglasses around, and Julia almost always wears them
outside. I don't think the neurological aspects of APS are well understood, but
there definitely seems to be some impact.
There is someone in this group (sorry I forget who!) whose child sees an
ophthalmologist at the NIH and seemed very happy with the doctor. You could
check previous posts to find the name. Julia's ophthalmologist is Dr. Asim Ali
at the Hospital for Sick Children in Toronto (asim.ali@...). We like him
and I'm sure you could contact him. It is important to keep on top of the eye
issues as retinitis has been seen in APS and that can cause vision loss.
Julia has also had fluctuating potassium and magnesium levels. They seemed to
occur when her calcium levels were off. In Julia's case, after months of fever,
rash and then the dilating pupils, she developed hypocalcemia and then Addison's
a few months later. You may want to do regular tests to watch for these, as I
found that in each case Julia suffered from various symptoms for too long before
the diagnosis was made. If he starts vomiting, definitely look for Addison's.
Has Ethan had pneumonias?
Sorry if this email is long and overwhelming. The good news is that since the
diagnosis she has been doing much better and next week Julia has her first day
of school!
Best wishes,
Jennifer
Jennifer Orange
Torys LLP

----- Original Message -----
From: apeced@yahoogroups.com <apeced@yahoogroups.com>
To: apeced@yahoogroups.com <apeced@yahoogroups.com>
Sent: Thu Aug 28 15:56:39 2008
Subject: [apeced] eye problems

Ethan is having eye problems he has dilated pupils alot and say the
hurt when light its them. I was also wondering if any of you have
problem with keeping your potassium levels right we have been in the
hospital two different times Ethan's potassium is either to high or to
low.
Donna





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