Help to describe the eye pain of a corneal erosion to my son's teachers

[wagnermid]

Hi,

I was hoping some of you could help me by describing the pain of a corneal erosion.

My son wakes with erosions most days, but sometimes he has periods where I describe him as demented by the pain. He has a good eye specialist and a great pain team and medication including Gabapentin and Endept, neurophen, paracetemol and endone if needed. He is very photophobic and has never been outside without dark glasses .He is 9 years old, has a disability and cannot speak well, he communicates by signing.

When his pain is bad which might be for a week every 2-3 months his behaviour is quite different from normal he gets hyperactive, agitated, until he falls is a heap and sobs. At home it is quite easy to tell the difference in his behaviour related to severe pain. I suspect he always has pain, it is only during the bad times he reacts the rest of the time he is his sweet self, the behaviour settles when the pain medication kicks in but when bad there are times when it is not enough. He has been in a bad eposode for a week and I am finding some of the newer school staff (not all) can't seem to understand the level of pain given that they can't see much difference in his eyes, although he is reluctant to take off his dark glasses inside.

I just thought that perhaps an adult description of the pain might help them understand what he can't express. I thought I would print some of your descriptions and take them to school.

Thanks in anticipation.

[poppy]

Well I've never been diagnosed specifically with recurrent corneal erosion though I know I have chronic keratitis, and suffer from a lot of corneal issues as well as having experienced corneal ulcer. So I think I have a good understanding of how your son might feel.

I would describe some of the sensations as; you are sitting there quietly going about your business and someone sneaks up behind you and stabs you in the eye with a pin; you suddenly feel an intense foriegn body sensation, NOT just like having an eyelash stuck but more like I imagine if you put a contact lense in back to front - you rush to the bathroom to check even though you know there is really nothing there, or if you are driving, you have to pull over and close your eyes until it passes; sometimes I have to prise my own eyelids open to try to see because the photophobia is so bad that I am blinded and my eyes close by reflex, even when inside with sunglasses on - watching TV, using a computer, driving or working are almost impossible or unsafe. When my symptoms are severe, I feel I am only just slightly better off than being legally blind, as I cannot function, work, or do any of my normal leisure activities. I would rather be dead than live like that every day the rest of my life. I only survive by drowning my eyes in steroid drops which will have severe consequences for my vision down the track.

[Tankie]

For treatment options, I'd recommend trying muro-128 eye drops for corneal edema. It stings a tiny bit (really it's not that bad at all) when you put it in, but otherwise it's a great eye drop. Also, it's not a chemical string/burn, but rather it's just the high sodium concentration that causes your eyes to react.

If he doesn't see any improvement after a week, then muro-128 probably won't help him much. It will either work quickly, or it won't work at all. One of the two. Ask at the pharmacy desk to pick it up. It should be behind the counter.

[wagnermid]

Thank for these, He has good treatment drops every 2 hours, gel at night, fml, oral antibiotics ( too young for doxy as it damages developing teeth) goggles at night, wiley x glasses for day, warm washers for 10 minutes, though he can't tolerate it when bad as he is at present, waiting for a general anaesthetic for plugs as he has a medical phobia, from too many bad experiences as a little child. He just can't tell people how it feels, so I will use Poppy's description and anyone else who gives me a description to help others understand this isn't just a little bit of discomfort,

Thanks again

[wagnermid]

Oops and I forgot 3000mg flaxseed oil capsules a day

[magoo]

Poppy's description of the feeling of a needle or pin in the eye is apt. Raw, burning pain.

[Colin P]

Jees! Wagnermid is a concerned parent and naturaly feels awful seeing her son struggle with amongst other things Eye trouble, when she asked for some info which i imagine is heart wrenching having to ask in the first place.. And she gets a horror story! could 'the description' been a little more reserved.
Wagner (A) some peoples eyes are more sensitive than others (B) in many cases the patients eyes will become more tolerant, and as your son is only 9 yrs of age he has a lot of changes and growing to do, I'm not saying he will grow out of this? but there will be changes galore come teenage years or 11+..

Look out for any different reactions to each medication, as some pain killers cause even more dryness? ive only experienced this once myself, so be vigilant of your son squinting or something troubling him- a pattern maybe- like 45 mins onwards after a medication. And if he wants to close his eyes and rest, for goodness sake let him, that his eyes and brain working in tandem eyes telling brain there is something very uncomfortable- Brain telling eyes to take a rest.

Tell the staff when outside not to let him face into the wind for long periods, or when inside not to be seated near radiators ar air-con.

[magoo]

I'm sorry, I don't understand the problem with the way I described the pain. I thought Wagnermid wished to impress upon the staff the extent of pain her son was experiencing. Severe enough to cause his behavior to change considerably. So sorry it sounds like a horror story to you Colin, my apologies, but that is my experience, my reality. It is very difficult to make others understand the severity of the pain and to me, the description is right on.

As far as making the teachers uncomfortable...it is the child I am concerned about.

[spmcc]

Some of Rebecca's resources that help explain dry eye and its symptoms:

1. Dry Eye Syndrome

2. Symptoms

A few past threads:

3. How do you explain it to people

4. Explaining dry eye to people

[wagnermid]

Thanks for the replies. SPMCC the "symptoms" is a good place to start. I just needed help to describe his pain so all the posts are a help. Thanks to everyone, his eyes are a horror story and always have been so when he gets like this I know it is bad. He has an amazing pain tolerence, he broke his arm and hardly re-acted, he doesn't react like other children to pain as it is all he knows. So again thanks, I will compile a description from these and Rebecca's resourses.

[littlemermaid]

Hi Ann, LM says:

'Burning, burning, burning. Absolutely everything causes burning - light, air, certain rooms. Also, not able to look up, or even open eyes at all, sometimes just need to keep eyes closed.'

She says the worst part is feeling forced to behave like everybody else because of class discipline and hide the problem. You need it to be normalised that you deal with the problem however's necessary; not being forced to endure it or use drops or close eyes in public or stay in a painful environment.

The most useful way forward has been grouped in the teachers' minds with children who have epipens or type 1 diabetes insulin injections, and, obviously, have a Care Plan written by us (we have kept photocopying this and giving it to all staff, esp new support staff, because they are very lax even in special needs environment, esp on school trips).

At school, because teachers/govt don't recognise the condition, we have pushed to be allowed to:

- leave room any time holding up green card
- do drops or move seat or close eyes any time in class and drop out of activity
- recognise bad conditions eg a/c, dust or bright light and move away
- get allowances in tests for not being able to see (they won't do this unless she's registered partially sighted, which she can't be according to regs because the vision fluctuates)
- move to see the whiteboard if she can't see that day (vision changes by 2 lines with inflammation)
- wear sunglasses and sunhat to shield face

(Still no progress getting any allowance in formal tests so we may have to kiss goodbye to her 'something medical' aspirations.) One danger area is school trips. Things can be sorted in school, but eg they will sit her in a coach with full a/c on the face.

If he's not aware what's possible to help, and just does what he's told, or doesn't/can't communicate on bad conditions, LM says this may be the worst part at school. At home you would just instinctively move or do drops.

We call it 'chronic eye inflammation' 'no tear film' 'cornea damage' 'chronic eye pain', never 'dry eyes', to get the message across.

Before I lost my job to look after LM and trail round the docs, I was working with partially-sighted special needs children, so I know it's important to keep him in class and busy and happy. But also, as you say here, and Rebecca wisely said in your previous thread, and our paed ophth says, children don't speak up about pain unless encouraged and asked, or realise what's needed. So a practical, easy to follow regime in his Care Plan for the support assistants that doesn't rely on one member of staff or too much initiative. And very clear Auslan signs for anything distressing like light, hot air, dusty environment, his pain. Hope you can all work this out. All strength to you, ma'am.

I was just thinking, DCRdryeye has got scleral lenses in Aus but don't know how that's working out. Might be worth asking. Seems like you get the best fit in Boston. We'd like autologous serum to reduce chemicals and enable surface healing but she doesn't qualify (yet), but he might, although I can see why you wouldn't want to draw blood regularly. UK is doing OK on injecting stem cells in the limbus to rectify deficiency, and stem cells on eg amniotic membrane to regrow cornea - so I guess Sydney's a great place to be for you both. Love from London

[wagnermid]

Hi thanks to the littlest mermaid! I think this is exactly what we needed-a child's perspective. I really feel this describes my son's problems and I think the school staff will recognise that too. I will take lm's description to his learning planning meeting. He does have a care plan which I made step by step like his asthma management plan it is just the staff need to recognise his pain. I think as you said it is when there are new staff, sometimes they don't relate his behaviours to his pain, I understand it is difficult but I think lm's description makes me realise that what I think/ know about his pain is absolutely correct. He actually can sign well enough to describe his pain, he has a voice output app on an iPod and can use that well too, he just doesn't seem able to do that until he is at the end of his tether, maybe he is just intellectually too young, or maybe it is as you said he doesn't realise what is needed. I will think of ways to deal with that. Please thank lm for helping us.

[littlemermaid]

She is very happy to be useful on this and she says she's probably coming on the forum soon too now she's older. Any questions for her, PM me!

What happened today: the school is really on the ball about her needs now since they circulated my email describing what happens and what's needed (there's me thinking they'd already circulated the Care Plan for 2y, but no). Great. But today they phoned for me to take her home because she was in flareup, needed to close her eyes and self-manage it with drops etc. Whereas once she did this at home, she was OK and really could've done this at school. So it's a balance.

Working in school, I had to make decisions about eg infected eczema and vernal conjunctivitis - whether to treat or phone parent or worry about their doc's abilities to manage it, with it being a child. The worry was that the child had a good doc-guided treatment plan, and once we knew what it was and had reassurance from the mum, we would manage the conditions fine.

[Rowanberry]

I can understand why your son seems demented by the pain. Erosions are more painful than anything else I have ever experienced in a lifetime of chronic illness.

I hope that he gets better as he gets older, it is awful to think of a child suffering this way. The problem for now could be that his teachers think he has behavioural problems rather than an understandable reaction to severe pain and distress.

It is extremely common for adults with chronic illness to find that even (or especially!) those closest to them like to minimise their pain as it is so upsetting to think of a loved one suffering. Teachers understand bad behaviour better than eye problems.

Medical research refers to extreme dry eye as ocular surface disease and it is best to always use that term to distinguish it from the dry eyes most people experience at times.

Honesty is best when describing medical problems. Exaggerating doesn't help but neither does playing down symptoms. If it is bad, it is bad. It won't go away by not talking about it.

hugs

R.