Help! ocular specialist for my 16 year old doctor

[janhatmaker]

I think my daughter has ocular roscasea. It is contained to her eyes only. This has been going on since she was in kindergarten. It started as what we thought was a case of "pink eye" except she has had it off and on for almost 11 years now. Her eyes turn red, itch, burn, are sensitive to light.Alot of times you can see red vessels running through her eyes and her vision is 20/200. I am sooo worried. We have been to at least a dozen doctors, had tons of allergy tests and countless other things, no results. She goes through "he--" (sorry, I don't mean to be nasty, just frustrated) at school, kids teased her when she was young and stare and ask questions now. The last straw was when a cop at school harrassed her because he thought she was high!
I stumbled across this board from a tip on a cosmetic board. I called every ophtamologist in Memphis. No one had a CLUE. I've written Dr. Nase but no response. Is there anyone in the U.S. that treats O. R. when it is contained to the eye only.
I am DESPARATE. Can anyone help us?
Thank-you for reading.
Jan Hatmaker

[no more red cheeks!]

Hi, I have had rosacea of the skin for many years and it progressed to ocular rosacea recently. It was very frustrating, so I know how your daughter feels, and it can lead to vision problems if untreated, as you know.

I have found that I can control my rosacea symptoms very well by adjusting my diet in a way that reduces the acidity of my body. I have been doing this for more than 6 months now, and my eyes and skin have been looking and feeling great.

I have explained my reasons for trying this alkalizing diet and described my food choices in another thread which you can find here:
http://forum.rosaceagroup.org/viewtopic.php?t=1830

I strongly reccommend that you encourage your daughter to try this, at least for a few weeks to see if it has any effect. I think she will have much less chance of reccurrence of the blepharitis and irritation of ocular rosacea.

How does she take care of her eyes on a daily basis? It is very important to keep the lids & lashes clean to minimize blepharitis (the inflammation around the base of the eyelashes). You can wash carefully with diluted baby shampoo, or better yet with diluted tea tree oil shampoo. There is also a product called LidCare (or something to that effect) available in North America for the same purpose, although more expensive.

Good luck!
Joanne

[adyus]

Hello. I'm very sorry to hear about your daughter.
This may be of some help. Below are some emails from dr.Nase regarding ocular rosacea treatment:

Cutting Edge Eye Drops for Treatment of Ocular Rosacea & Meibomianitis


Dr. Geoffrey Nase, PhD Jan 24, 2:27 am show options

From: "Dr. Geoffrey Nase, PhD" <drnase1...@hotmail.com> - Find messages by this author
Date: Mon, 24 Jan 2005 07:27:35 -0000
Local: Mon,Jan 24 2005 2:27 am
Subject: [rosacea] Cutting Edge Eye Drops for Treatment of Ocular Rosacea & Meibomianitis
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There are four new eye drops now available to rosacea sufferers for
ocular rosacea. They do much more than just lubricate the eyes.
They actually treat some of the underlying pathology.


1. Cyclosporine Eye Drops – these drops have been out for about a
year. For moderate to severe inflammatory ocular rosacea, there is
no better treatment.


2. Castor Oil Eye Drops – For unknown reasons high concentration
castor oil eye drops are very effective for generalized
meibomianitis (inflammation of the oil glands in the eyelids)


3. Medroxyprogesterone Acetate Eye Drops -- Very Effective for
ocular rosacea caused or made worse by menopause.


4. Dehydroepiandrosterone (DHEA) Eye Drops – The newest treatment.
Decreased androgens in the tear film layer has many negative
actions. Addition of certain androgens reverses many symptoms.
Very new so be cautious.


Regards,


Geoffrey


drnase2000 Oct 7 2004, 7:28 am show options

From: "drnase2000" <drnase1...@hotmail.com> - Find messages by this author
Date: Thu, 07 Oct 2004 11:28:02 -0000
Local: Thurs,Oct 7 2004 7:28 am
Subject: [rosacea] Two New Eye Drops Continue to Show Promise for Ocular Rosacea
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Two new eye drops/suspensions continue to show promise for moderate
to severe ocular rosacea.


1. 10% N-acetylcysteine drops (Mucomyst) -- This mucolytic agent
can be used successfully in rosacea patients with abnormal tear film
layer (mucus layer). In ocular rosacea, the superficial
inflammation can alter goblet cells which affects the production of
the tear film layer. This is the first agent to address this
specific problem.


2. Cyclosporine ophthalmic (RESTASIS) -- Used to relieve dry eyes
caused by suppressed tear production secondary to ocular
inflammation. First eye drop to actually increase natural tear
production, stabilize tear film layer and resolve ocular
inflammation.


Regards,


Geoffrey

Hi,
I have Occular rosacea, and it's not easy to find an Opthomologist to help, but that's what she needs. So step 1 is to get referrals and do your research and try to find an Optho in your area who is more than just a Lasiks surgeon. Look for someone who specializes in "Occular Surface Disease," "Dry Eye," or a Corneal specialist.

In the meantime, some helpful home remedies that have helped me:
Artificial Tears are a necessity, but with our extra sensitivity, many will irritate. I use "Blinx Contacts" as needed or at least 4x/day.

Avoid the things that cause flare ups. For me the sun is a big one. I wear good quality, well-fitting sunglasses.

Sunscreen: most irritate me. there's a baby sunscreen that's tear-free that I put all over my eyes, up to right about 1/4" from the eyelid margin. It's Banana Boat Kid's Tear-Free Waterproof Sunblock. It's cheap and available at any drug store.

Heat on the face is not good for me. I must keep my face out of the hot shower water or my eyes go bright red.

Also, Omega 3 supplements are known to be helpful.

Go mild and easy on the skin care. Use new products cautiously.


My new favorite: cool rice baggies on the eyes. I take a cheap nylon knee-high, fill it with about a cup of uncooked rice, knot it and put it in the freezer. Put that over her eyes as needed, especially after using the eye drops. Even just 5 minutes helps alot. When her eyes get dry, or burn or sting, it helps.She can do one eye at a time while she watches TV. If the doc says she needs warm compresses, the same rice baggie 20 seconds in the microwave works great. For me, the warm makes things worse, but many need it to get the oils flowing, so that's a judgement call but don't go any hotter than you need to.

I've learned most of this hard way, spending money experimenting on things that only make it worse. I've researched and read til my poor red eyes were fried. I've learned so much from people on this and the "Dry Eye Talk" board, that I hope I can help shorten the learning curve for someone else. Keep in touch,

Charmee

[Skywolf]

Those "rice baggies" are a good idea, but my thought is, would it be better to use a natural product, say a cotton sock (unused, of course, lol) Nylon is also so thin. My Dad suffers from sever ocular rosacea, and if he [edited by skywolf because I can't type] puts stuff that is TOO cold on his eyes after the drops it hurts him worse. ( Im not sure what drops he is on now, his docs keep changing it to keep up with it)

Laura

[Jordan]

It sounds like she may have some food allergies. I had ocular rosacea throughout my schooling, was harassed for being high, etc etc. I now monitor my diet and avoid my food allergies. No more ocular rosacea. Your health insurance should cover most of the cost if not all of a food allergy test. Also, I would recommend doing some reading on a rosacea friendly diet. Basically, don't eat junk. See an optho. - Jordan

[redhotoz]

Hi Jan

I noticed that you got some very good advice from the Yahoo Rosacea Support Group last year. The RSG and the Rosacea Forum are what we call 'sister sites'. We quote between eachother, which is great for bringing info to every active on-line Rosacean.

Anyway, I read the advice you were given on the RSG last year and you seemed quite happy with that, by recommending a doctor for all to visit.

I posted in reply about OR some time ago here, which I later learnt was quoted from someone else but maybe it will help:

http://forum.rosaceagroup.org/viewtopic.php?t=3400

For clarity, I thought I should re-state this, from the link above...'Oh, and just to clarify about the long quote I made from Laura, well she did follow up later with this to say on 15 Nov last year: "I didn't write it! Thanks, but I don't deserve credit. It's just lots of notes from other people, mostly Dr. Nase, pasted together and offered to help others. That's what we're here for, to share the knowledge. I try give credit to those who originally wrote the stuff, but sometimes I forget to note their names."

Thought that I should make that clear as all I knew was that I saved that e-mail/post into my OR Folder for future reference.'

Best of luck with your daughter.

Jen

[Neveen]

I go to Bascom Palmer with Dr. Carpenter, Dr. Yoo and Dr. Culbertson.
I see about 4 different doctors there, but they have alot of Corneal Specialists here in Miami in Bascom!(corneal and external diseases department is where I go).
Check out Bascom Palmer, it's where I had both my corneal transplants at due to Rosacea Keratitis from ocular Rosacea, my issues developed at 18 (I'm 24 now).
(I also got that "are you high" accusation, but it was from my dad who at the time, we had no idea why my eyes were so red lol.

Best of luck to you, and sorry to hear about your daughter!

http://www.bpei.med.miami.edu/site/default.asp

here's the link