Are there any options left?

[Emerald]

Hi LittleMermaid,

Antibiotics etc. during 2009 and 2010 were for recurring UTIs and once bacterial vaginosis. Other than that, no other type of STI or such - Ciprofloxacin (500mg 2x/day), Pyridim (200mg 2 x/day), Flagyl (500mg 2x/day), Clindamycin (not sure of dosage), Penicillin (500mg 1x/day) Cephalexin (250mg 4x/day), Keflex (250mg 4x/day), Metronidazole (500mg 2x/day), Fluconazole (not sure of dosage), Phenazopyridine (for pain 200mg 1 or 2x/day), maybe an occasional Septra, and she was taking the infamous YAZ. I think that covers it..

She has not had any viral signs except for a lip blister inside lower lip that comes and goes. She has not had any skin problems, but yes, I think this all started around that time, after taking many antibiotics for UTIs that were very difficult to cure. She has not had conjunctivitis since a child, except after trying the collagen plugs -- those were a nightmare, itchy and painful.

I do think when the doctor touched her eye with something they were sensitive, I will ask her that. Main concern is the evaporation.

She never had any problem with contacts until this dry eye began, the only difficulty with lenses was dry eyes.

I'm not sure of the staring without blinking, but I think that isn't a problem, one doctor told her to be conscious of her blinks and work on blinking consciously.

Thanks for your interest, any feedback is GREATLY appreciated.

[littlemermaid]

She took Fluconazole for suspected vaginal yeast infection? that was because of antibiotics?
Or did she have fungal infection on skin surface anywhere on the body?

What pain did she take Phenazopridine for - was it eyes or UTI or other?

Might be good to look at specific side effects for the various antibiotics. Could the meds or it could be the infection she was taking them for? Do they swab for specific UTI in the States or just guess and hit it with antibiotics, then if that doesn't work try another, like they do in UK?

Has she had tests for chlamydia? it can be invisible and dormant and reappear, I think, even elsewhere in the body (Google 'chlamydia dry eye'). Maybe browse round PubMed and Medscape on that and similar infections. There have been surprise cures of MGD and chronic dry eye from diagnosis and treating for chlamydia.

It's interesting the punctal plugs were itchy and painful but they did not diagnose infection. I wonder if there is something dormant. It would take a smart eye doc to think round that and make some suggestions. It's even possible to get a 'canalicular cystitis' apparently.

You think the YAZ might have started dry eye?

Testing by staring is to find out if her eye surface is desensitised. Eg my daughter could easily stare over 2 minutes and I knew she had lost sensitivity on the eye surface. I could see the eye surface had changed, become less 'shiny'. And as it toughened it reduced the feeling of needing to blink or tear up. And I think the tear film is not fed so successfully through the eye surface too. These are the sorts of changes to the eye surface that happen in contact lens overwear. I wonder if it's difficult for the eye surface to restore itself if it is then chronically dry and maybe moisture chambers or sclerals could allow it to restore. Just guessing.

Blinking consciously is a good plan. Also checking the eyes close fully when she's asleep. Mine won't wear a sleep mask but I think she would if she woke in pain.

I'm interested in thinking about the adrenal axis too. (We used Clotrimazole with hydrocortisone for Tinea versicolor on the hairline after camp before this eye nightmare started, which is known to trigger periorificial 'rosacea' sensitivity, even without a skin rash or flushing - PubMed. Even a steroid asthma inhaler can do this.)

I feel for you both, I really do. Mine is nearly 17 now and it's been nearly 6y. We're in the same boat, pretty much, so let's all keep rowing together

[Guest]

Santaklauzz, A holistic doctor (also works with an MD), checked hormone levels and said they weren't normal, but she is/was on the birth control pill and her gynecologist said you cannot trust the results when you are taking birth control pills.

Has she tried going off the birth control pill for a few months? Could be making things worse or even be the cause of her eye issues - if she takes a months-long break from them, and keeps everything else the same, she'd know if the birth control pills were impacting her eyes.

[Emerald]

LittleMermaid,
Do you have some science of medical background? You are really well educated on all of this!
I know as moms, we do a lot of research because nothing is more important than seeing our children, regardless of their ages,happy and healthy!
I am sorry to hear your daughter began her dry eye problem at a such a young age, was that caused by the cream you used for her tinea versicolor?
Where does she find relief? Mine tried the sleeping mask, but it didn't help and then tried taping eyelids shut, they didn't help either.

The Fluconazole was for a vaginal yeast infection, she never had any other skin/fungus infections or issues.
The Phenazopyridine was for pain associated with UTIs. In the US, they do not swab to find out the specific type of UTI (not that I've ever seen, but I can't say they never do or never would..)
She has never taken pain meds for the eye discomfort.
Chylamydia -- you would think with all the talks and education, that that would not be possible! But, facing reality, it was her beginning years of college, and I will have to inquire!
That is definitely a good suggestion, if she suspects that, I will push she gets tested, and I'm sure she will if something can be done to help.

I have always leaned towards YAZ or many rounds of antibiotics being the cause -- but doctors don't seem to think so.

The plugs were so bad that after several days one must have dislodged and she was in excruciating pain and her eye was red and swollen and needed a trip to the ER. They said it was either allergy or conjunctivitis, and several days after the ophthalmologist had to irrigate the tear duct. What a mess.

Gotta keep on rowing for sure!!

SAAG - Thank you for the suggestion, she did go off of birth control for about six months or so, but it didn't change things at all, and the bc pill really helps regulate her cycle. She would have considered lasik or implantable contact lenses, but with all these problems, it's probably never in her future, and after reading about all the issues here, I don't think either would be a good idea!! (she has worn glasses since age 2)

[Jade]

While looking for dry eye info I've come across 2 things that are supposed to be induced by contact lens wear. Giant papillary conjunctivitis, which is a problem with conjunctiva of the inside of the upper lid, and superior limbic keratoconjunctivitis which is a disorder of the conjunctiva on the eyeball under the top lid.

[littlemermaid]

http://www.dryeyezone.com/talk/showt...e-for-dry-eyes Infection - more options on 'differential diagnosis' for chronic dry eye. Love this 'Iraqi eye crud' story so much. See how this eye doc recommends culturing to find the bug rather than just starting steroids if various antibacterials don't clear the problem. There is an Australian lady here in 'Triumphs' cured after identifying an unusual bug from a sinus swab.

Here's how Dryeyedave got Stevens-Johnson syndrome from a Z Pac (oral antibiotic azithromycin) http://www.dryeyezone.com/talk/showt...y-eye-sufferer. Click on his name and 'Forum posts' to see how he's doing. Side effects can be various - we set up intracranial hypertension with oral Lymecycline 6wk for the MGD, which we are still living with - bad headaches, vision wavering.

Thanks, Emerald, you are very kind.

I know as moms, we do a lot of research because nothing is more important than seeing our children, regardless of their ages,happy and healthy!

I'm finding it tough that we can't get one doc to coordinate the different parts of the anatomy. Do you have a good General Practitioner?

Derms practising in UK still won't have it that even very low dose topical steroids can cause blindness in children this way even though there is plenty in PubMed about this ('child rosacea steroid'). It has been put in UK protocol recently (NHS website). It is very rare and most people are fine. But then some people aren't. Some docs suggest looking at the mother to see if she has rosacea 'in the genes' before prescribing. There is increased risk at adrenarche. In international protocols, there are strong warnings not to use topical steroids for rosacea now. So yep, I think it was the cream.

She gets comfortable by using tons of eyedrops now, but in the past we've had to use a lot of steroids and antibacterials in quite high 'pulse therapy doses'. We even tapered to 1 maintenance drop per week when she was younger, which is extremely cool for a paediatric eye doc to do, I think. She has got more what looks like acne round the mouth and nose now at 16 but when this started there was nothing much to see. This is really an increased immune response concentrated round the 'orifices' and some people get it round ears and anus too. In research reports, some children, which includes very young, have no acne signs but quite severe MGD and 'rosacea' sensitivity and without treatment the cornea declines.

We also treat for demodex MGD once in a while using a tea tree shampoo solution as an eyelid scrub (search my forum posts for the protocol or I can post it again). Everyone has it but it definitely takes advantage of clogged MGs. UPMC CME Dr Leela Raju 'ocular surface dilemmas' at 22:35 http://www.upmcphysicianresources.co...-cornea/item/1 Another interesting point 'amazing how neurotrophic these corneas are'.

Bugs which might have moved in from contact lenses. UPMC CME Dr Robert Shanks 'communication between microbes and the eye'. He does mention finding candida species and viruses on the inside of contact lenses as well as bacteria. http://www.upmcphysicianresources.co...-cornea/item/2. Very interesting point for us that the eye has a 'metabolomic profile' of behaviour, and 'there are biomarkers for dry eye that you can look for in this way'.

As Jade says, allergic sensitivity is a big factor with these dry, sore eyes and we have terrible trouble finding bathroom products that help and don't flare her eyes and skin up.

'Comfortable' is good enough for us, Emerald, so we can get on with our lives and having fun. Hope your daughter can get there. As Rebecca says in Dryeyezone, even if we think we have tried everything, we haven't.

The rule for us has really been 'what makes it better/worse', then it's been clearer what to do, even without diagnosis.

[debbrancheau]

Do you know if PROSE lenses can be used for people like me that have 20/20 vision? That's not a brag. It's actually been a problem since none of my docs will give me scleral lenses saying that they are only for people that already use contacts.

[Guest]

Do you know if PROSE lenses can be used for people like me that have 20/20 vision? That's not a brag. It's actually been a problem since none of my docs will give me scleral lenses saying that they are only for people that already use contacts.

You absolutely CAN wear prose with 20/20 vision - they will make a lense with no prescription in it - easy! (I know this for a fact since I had them myself, and my vision is better than 20/20)

[Judi999]

If your daughter still hasn't found relief please contact our support group at www.OCDryEyeSupportGroup.org there are several things that can yet to try.

[Betsy]

Emerald and Mermaid, you two are incredible mothers! My mom would never do that for me. She takes it another step further and if I even so much as mention this, she see's me as a complainer and whiner, despite my not going on about it. I can't so much as even mention it. The crazy thing is, she suffers from it also, so you'd think she understands. Her's is no doubt severe, though not sure if it's as severe as my own. I love my mom and know she wishes me the best, but compassion and empathy (for me that is) have never been her strength, she is very tough and rough around the edges, especially with me, her only child (though I am adult of course). The support you give your daughters is absolutely precious and as unlucky as they are dealing with this awful condition, I hope they know how incredibly lucky they are to have mother's like you!

Emerald, I'd be curious what the various dry eye clinics told you when you went and were any at all helpful? I myself was considering traveling to California as it's closer than many other dry eye clinics.