Any optometrists here - please give me more info

[bocboc8]

Hi, my 10 dd has been diagnosed with blepharitis at the beginning of April. She had a limbal phlycten, a delayed reaction due to her blepharitis and was prescribed fusidic acid and steroid eye drops. After completing the course her eyes were fine for a week until her eye inflammation came back again. On the first visit to the hospital, I was not advised by the eye doctors to apply warm compress and lid cleaning so I assum her blepharitis flared up again. Today I had to take her back to the eye hospital because she has another phlycten. The doctor gave me a prescription to treat it and told us to come back in 2 weeks time.

After the second visit to the eye hospital, I had started with warm compress and lid cleaning and her eyes seem to be a lot better. Today was her fourth visit to the eye hospital.

All the eye doctors that my dd has seen had not offered much advice or info. Can any optometrists here offer me some useful advice in preventing her getting any more phlyctens as I would like her to avoid using steroid eye drops.

Many thanks.

That's really very unlucky, it's pretty unusual to get recurrent phlyctenular disease.

Causes of recurrent phlyctenular keratoconjunctivitis fall mainly in three categories: tuberculosis, early acne rosacea and persistent bacterial infection of the lids, tear glands and eyelashes.

It sounds like the first two have been ruled out so we'll concentrate on the last one.

You're right in that you do need to control the blepharitis to reduce flare-ups, mostly this is done with lid hygiene.
Hot compresses, cleaning with baby shampoo or mildly salted/bicarbonate solution are all options but this will probably have to be done long term.

As regards antibiotic and other treatment, can I ask how long these periods of treatment last?
And has a swab and bacterial culture been done?

Thanks for your help, DBennett. My dd has to use the eye drops (fml and antibiotic eye drops) for 4 times daily for 1 week and then 2 times for 1 week. Last time, which was approx 3 weeks ago, she was put on predsol eye drop which increased her eye pressure so she had to stop. This time she was once again put on FML steroid for another 2 weeks. I ddin't want her to use steroid again but dr said this one is a weak steroid and is unlikely to increase pressure. Even so, I'm still very, very worried.

Swab was done last month and came back normal. However, 2 hours before the swab was taken, antibiotic eye drop had been used on my dd's eyes so not sure whether this could affect the result. GP had been informed of this and said the hospital had taken this into a/c.

Will warm boiled water be effective enough to use for lid cleaning? Baby shampoo stings my dd's eye.

I really do appreciate your help.

If baby shampoo is unpleasant then you might find you have to use a cotton bud moistened with the solution to help with the scaling and build up.
But it should clear it just fine.

And maybe try adding a little salt or bicarbonate to the mix, if your DD doesn't suffer from it of course.

The time periods of treatment you mention are fairly short for the management of chronic blepharitis which is causing such problems.

It's not unusual to be using an antibiotic eyedrop plus ointment over night for at least a month to make sure any infection is dealt with.

And that's assuming that things haven't escalated to need an oral antiobiotic.

I'm also curious as to why quite a narrow spectrum antibiotic is being used after failing to identify a causative agent on the swab.
Chloramphenicol tends to be more popular it is quite broad spectrum (effects a wide variety of bacteria) and cheap (which helps!).

But I would try and reassure you regarding repeating the fml steroid, it doesn't tend to cause an Intra-Ocular Pressure rise and if she has phlycten they do tend to need steroids to control them.

Is that any help?

Thanks.

My dd is allergic to chloramphenicol. She is now on Exocin. Ths swab was done at the GP surgery as GPs at first were treating my dd's eyes as bacterial conjunctivitis. It was the eye hospital that prescribed fusidic acid.

In your opinion, what is the best form of lid cleaning? Baby shampoo, salt or bicarbonate? Sorry to ask you again, but do you think water is effective enough? I want to do what is best for my dd.

Thanks for your reassurance regarding fml. It's reassuring to have a second opinion.

Will children eventually outgrow blepharitis? In my dd's case, if she gets another flare up of blepharitis, do you think she should use antibiotic eye drops straight away to prevent her getting another phlycten?

Sorry for so many questions.

Baby shampoo is probably best, it has all sort of properties that help with cleaning.

But it's very important to be able to use whatever you're using regularly, once or twice a day for the foreseeable future.

So I'd try using a mild salt/bicarbonate solution.
If your DD prefers it it will be more likely used often enough to make a difference.

Most people outgrow blepharitis but this can take a while in severe cases like this.
You might need to keep up the preventative lid hygiene for a number of years to ensure there is not recurrence.

I don't see an issue with rapidly responding to a flare up of blepharitis with an antibiotic.
Except I would hope such events would be rare if a good daily lid hygiene routine was in place.

Thanks for satisfying my curiosity regarding chloramphenicol.
Although I'm still a touch unsatisfied with the length of treatment time being suggested.

Thanks you taking your time to reply. I would be very grateful to have you as my dd's consultant! Whereabouts are you???

My dd is a steroid responder that's why I'm very concerned about her being on steroid.

I'm not satisfied with the doctors. This is a walk in emergency eye clinic so we see a different doctor each time so it's difficult to get the appropriate treatments. I've asked for follow up appointments but they still discharged her each time.

What I don't understand is why did the doctor prescribed her eye drops to put in her eyes instead of an oinment to apply to her eyelids, as this would not get rid of the bacteria on her eyelids?

Regarding the salt water, I use it with a cotton bud to scrub her eyelids but do I need to rinse out the salt water afterwards with plain boiled water?

Many thanks for your help.

You should rinse the eyes after cleaning but more to get rid of what you have just removed from the lid as opposed to the saltiness of the water.

The path you've got trapped in (walk in, get treated, discharge, flare-up, repeat) is going to make continuity of care very difficult.

I'd strongly consider going through the GP, therefore getting a named consultant for some consistency and preventative care.

As to eye drops vs ointment, it's generally considered you need both in tandem to get the best effect.
Drops during the day, ointment at night. For at least a month.

Although it's worth remembering that it is the lid hygiene that will get rid of most of the lid bacteria.

I'm somewhat torn about being any more explicit, I don't want to put you in the position of defending what a random mumsnetter said online.

So, we'll try this:

A few years ago Moorfields (the largest Eye Hospital in the UK) published the guidelines for managing this sort of issue (albeit slightly at the more severe end of the spectrum) in this paper.

The salient bits of treatment are repeated below.

"The children were treated with a regimen similar to that used in adult BKC. Daily lid hygiene was directed at removing debris and crusts along the lid margin, using cotton wool tipped swab sticks with diluted bicarbonate solution, diluted baby shampoo, or warm water.
The child?s attendant was advised that the lid hygiene routine had to be maintained for an indefinite period.

Patients with mild or moderate disease were prescribed a short course of topical broad spectrum antibiotics, usually chloramphenicol.
Drops were instilled four times daily and ointment applied to the lid margins at night for 1 month, after which they were instructed to use only the ointment at night for a further 2?3 months while maintaining a daily routine of lid hygiene. These patients were examined at 1, 2, 3, and 6 months following presentation, and then at 3 monthly intervals until they were stable using daily lid cleaning alone."

At least this way if you want to become the patient with the grande print-out (as opposed to the traditional patient with the petite note) you have something a bit more concrete than a webchat.

Sorry for length and hope that is of interest.

Thanks a lot, I will print it out and show the doctor.

I had to take my dd back to the hospital today because I've noticed she has a small white spot on her left eye too. Doctor yesterday didn't mentioned anything about it so I thought I take her back for another look. Got a bit upset becasue since my dd was seen by a doctor yesterday they refused to see her again. So a nurse came to see her instead.

I'm even more worried now because I had a proper look at the doctor's note from yesterday and noticed that my dd has phlycten plus marginal keratitis. I've googled it and now even more worried than ever.

When will my dd get better? I actually cried at the hosptial today with frustration.

I'm so sorry you, and your DD, are having such a hard time.

Marginal keratitis is just another word for the corneal (the cornea is the clear window of skin at the front of the eye) inflammation response.

Phlycten is another name for this response and although there are differences, they can be subtle.

This doesn't change what you need to be doing, even if it changes the medical management slightly.
You need to get the lid hygiene measures in place (that sounds like it's happening), stick with the medical treatment to deal with this current flare up and then stick with the lid hygiene to get long term resolution.

Oh, and keep your chin up.
You need to try and do that as well...

I don't know how many times I have to say this, but thank you so much for your help and kind words.

So steroid and antibiotic eye drops are the right treatment?

The reason I've been taking her to the walk in eye clinic is that my GP said the referral time will be at least 2 months. The nurse said they will not discharged her from now on so hopefully she will be under a consultant's care.

Is magianl karatitis also a complication of blepharitis? Will it reocucr?

I've just washed my dd's eyes with baby shampoo and she said it's OK. She's being so brave - all these eye hospital visits/eye drops/lid cleaning and never a word of complain.

Steroids deal with the inflammatory episodes, the marginal keratitis and phyctens.

Antiobiotics kill the bacteria which can cause them buying time for the lid hygiene to work which is the long term preventative measure.

Good lid hygiene equals no blepharitis equals no bacteria equals no corneal inflammation.

I'm just sorry you have had to learn about this stuff.

I had this when i was little, i had all the treatments including baby shampoo and after a year or so my mum started using milk to bathe my eyes in morning and night and it cleared up after a couple (maybe 3?) weeks. I haven't had it since!

No idea if this is helpful or not! I don't know anything about blepharitis but do remember all the yellow crust along my eye lids :( Hope you manage to get rid if it for your DD!

I was going to suggest something like cooled camomile tea for cleaning and soothing. It worked with my DSs for conjunctivitis. Tbh, although some doctors will recommend it, I would avoid using a baby shampoo because even they contain foaming agents that some people can be quite sensitive too. I wouldn't like to experiment with the risk of a reaction around the eye when there are other alternatives. Just my opinion fwiw :)

My ds2 has suffered with blepharitis/blepharokeratitis and repeated chalazia since he was 3 years old - he's now 7.

We tried everything in terms of lid hygiene, but he was very resistant to most of the usual home treatments such as baby shampoo and bicarb and for some reason had a huge problem with using cotton buds anywhere near his eyes.

One of his consultants recommended Lid-care and it was a revelation. It doesn't sting or hurt at all (I tried it on myself before using on ds) and ds took to it really well. You just squirt a couple of drops of the solution onto one of the gauze pads provided and use it to scrub the lid margins. Ds was able to do this himself after a couple of weeks and I think doing it himself made him feel more in control. What we tend to do is let him do it himself, then 'finish off' for him, to check its all been done properly.

We saw his consultant a fortnight ago and she was really pleased with him and said his lid margins were super clean and healthy and whatever we are doing is obviously working. She said we could probably drop back to doing his eyes two to three times a week, rather than twice a day, as they look so healthy at the moemnt, but we know we need to keep it up, as we did slack off a little a couple of months back and he got a chalazion for the first time in two years. Fortunately only a relatively small one that was self limiting, unlike all the others that have resulted in massively swollen lids and cellulitis.

Thanks you all for your help.

I'm resentful that the doctors at the hosptial did not give me any info on how to treat her belpharitis. If my dd had the appropriate treaments right at the beginning then she wouldn't now be suffering from all these complications.

DBennet, sorry for so many questions, but will corneal inflammation heal with no problems? Will it leave scarring or damage eye sight? I'm just so, so, worried. Could not sleep or eat at all through all these worrying.

Moosemama, thanks for your reply. Where can I buy lid-care? Is your ds on any eye drops? Please tell me there is light at the end of the tunnel. It's really difficult to deal with this. I can cope with blepharitis but not the complications due to blepharitis. I feel like a bad, helpless mum.

Moosemama, is blepharokeratitis the same as marginal blepharokeratitis? Will it leaving last damage to the eye? What other treatments did your ds had? I'm glad to hear he's so much better now.

Sorry for so many questions.

Bocboc8, I buy mine online from the place I linked to, as they do discounts for multiple purchases. I think some high street chemists stock them though. Our consultant initially recommended these which are individually sealed, but they work out extremely expensive for long-term treatment. I think you can buy those ones at larger Boots though.

As far as I am aware blepharokeratitis and marginal blepharokeratitis are the same thing, but DBennet, seems to be more likely to know than me to be honest. We had dire treatment initially as well and no-one explained the importance of lid-hygiene for at least 12 months or so. Its only more recently that we've had the whole condition explained to us properly by his new consultant.

Ds had to have lots of strong antibiotics to treat the infections he developed, but I understand this is particularly rare, but other than that, stringent lid-hygiene has been pretty much the only course of treatment.

He did have damage to the surface of his eye. Although it was pitting, rather than striation, which confused the docs. They weren't entirely sure what was causing it and it persisted for a couple of years, but has completely cleared up now. He did sustain damage to his eyesight, caused by the pressure from his largest and most prolonged chalazion and has an astigmatism as a result, but they are happy that his sight has settled down now and are just tweaking his prescription. They said they think they will be able to discharge him when they see him again in 6 months if his eyes stay this healthy.

One other thing we tried - and I'm convinced helped, was a tincture commonly called 'eye bright' which comes from the herb Euphrasia www.expresschemist.co.uk/product_7613_euphrasia-50ml.html. You can buy it from most good health shops and just add a few drops to some water for them to drink. Ds's chalaza stopped in their tracks almost as soon as he started taking it, whereas before they were cropping from eye to eye without a break in between for a couple of years. I am usually pretty sceptical of these things, but was willing to try anything to help ds and it definitely seems to have paid off for us.

Don't worry about the questions. I wish I had someone to ask when ds was struggling like your dd.

I hope you manage to get it under control and she can get some relief really soon.

I'll try that second link again.

Eye Bright

Thanks so much for your help. I think sometimes ago you were talking about this on another thread regarding your ds.

I did asked about eyebright but the nurse didn't seem to be too sure whether it will help or not so I will ask again when I see the doctor next.

I've never heard of blepharitis, let alone all these complications.

The eyebright is an alternative remedy, so NHS docs are unlikely to recommend it. I can't remember who told me about it, but I'm glad we tried it.

I was just having a think over lunch and remembered that when ds's eyes were at their worst with the damage to the surface etc, he had to have synthetic eye drops. He really hated them and had to have them put in really often. Can't remember how often exactly now, but I know I had to go to the school twice a day. I vaguely remember him being on 10 drops of various things - including the tears - in each eye morning and evening at one point, it was really hard on him, especially as he was so little.

I also forgot to mention that we were told it was likely to be connected to him being depleted and having low immunity. However, the new consultant said that current thinking is that its the opposite of low immunity, its actually an over-reaction by the immune system to the normal bacteria that live on the skin - hence the inflammation.

We have a history of auto-immune disorders in our family (I have CFS/ME - that explains but doesn't excuse my bad memory my Mum has Fibromyalgia and rhuematoid arthritis and ds1 has an inflammatory gut problem) so this makes more sense to me. Actually though, the treatment for both is the same in that good underlying health is the key, so diet/nutrition is really important. Ds has definitely gone from strength to strength in line with us improving his diet and adding extra iron and essential fatty acids to his diet - again, could be coincidence, but we're sticking with it just in case.

Marginal just implies a location in the eye affected.
But there is great variety in the spectrum of blepharitis.

As for the lasting effects of the corneal inflammation there are likely to be none.
That is assuming correct management.

Even with steroids small, inconsequential scars may be left.
Without steroids, the scars may be larger and effect vision.

The more inflammatory episodes you have, the more chance of being unlucky and suffering a secondary complication.

I would strongly advise avoiding switching from antibiotics and the lid hygiene aids discussed (mild salt/bicarbonate solution or baby shampoo with the aid of cotton buds) to camomile solution or Eyebright.

You would be swapping the current gold standard for unproven and implausible remedies, the latter of which has recognised side effects including Intra-Ocular Pressure being raised, which your DD appears to be especially vulnerable.

"Lid Care" is a reasonable product but shares most of it's ingredients with baby shampoo, which I think is cheaper.
But if you like the pre-soaked wipes, go ahead.

There was a mention of dietary modification.
There are some reasons to think that certain types of fatty acids are beneficial in some disorders of the lids and tear film.

Nothing you have said seems to make this likely but it is possible.
But it's worth bearing in mind that such changes, even in the best of circumstances are small compared to those which can be achieved with regular lid hygiene measures.

Sorry for length, lots that I have thoughts on.

I wouldn't advocate using eyebright on the lids either. My ds had the oral tincture - and it was given in addition to all the medical and lid-hygiene treatments. Ds was on a very low dose and it was never instead of the antibiotics and lid-hygiene. We kept the treatment period short as well.

That's interesting about the raised intra-ocular pressure. I hadn't heard that before, but have just done a quick bit of reading and it seems it can be a side effect in some people. In which case its worrying that I've seen it regularly recommended for use in patients with Glaucoma.

As I said, it definitely seemed to help ds, but there's no guarantees it would help the OP's dd.

I also recommended the improved nutrition etc in addition to stringent lid-hygiene. With my ds, I felt it was something that was worth trying - not so much because I thought it would have a direct effect on his eyes - but more because I felt that improving his general state of health could only be beneficial. Obviously we'll never know how much effect it had on the improvement of his eye condition, but then again, improved nutrition and general health can never be a bad thing.

I still doing warm compress/lid cleaning with baby shampoo twice a day.

My dd was seen at Moorfields (local eye clinic was shut) last evening because she had been having headaches since starting the drops. I thought it might be side effect of the drops so I had her checked out again.

Doctor there explained a bit more of her condition to me and said her blepharitis is most likely cause by allergies, so the most important treatment is an anti-allergy eye drop to prevent all these inflammation in the first place.

If it is indeed cause by allergies, does the long term treatment of antibiotic drop/ointment still implies?

Hi bocboc8, it's been nearly a year since this thread was last added to but I've just come across your messages about your daughter?s problem with recurrent phlyctens as I have been having almost exactly the same problem with my 5 year old little boy for over a year now. I was wondering if you are still out there !
He?s been on several courses of FML and antibiotics and the phlyctens, limbal follicles, extreme eye redness just keeps coming back. He doesn?t have any sign of blepharitis though. I?m really fed up with having to wait for hours on end at the eye hospital and like you seeing a different ophthalmologist each time, and getting little explanation on what?s going on. To make matters worse, my 3 year old daughter has just been diagnosed with blepharitis and I?m terrified she?ll end up with the dreaded phlyctens too. They both have coeliac disease so I?m wondering if it?s related. Just fed up with it all now!....