Showing posts with label strabismus amblyopia patching. Show all posts
Showing posts with label strabismus amblyopia patching. Show all posts

Wednesday, 6 March 2013

18

The Current State of the Girl

eye patches both

Those of you on Instagram witness full-on angst mode from me yesterday.  Maia had yet another eye appointment at the Opthoptist (which is normally angst-inducing enough by itself) but after our last visit they had asked my to make some of my patches to leave there so they could recommend them to other patchers.  Oh, and leaflets too:

leaflets

Can you spot the spelling mistake? I couldn't, until they'd all been printed.  By the detestable printer that prints off grain so you need to true up every stupid side of every stupid paper. And then of course when we got there it was a different (slightly more intimidating) orthoptist than the one who asked me to bring my wares the last time so I sat there fervently clenching and unclenching my jaw while wondering whether to say anything at all.  But I did!  And she was super enthusiastic and I cried hot sweet tears of relief internally.  But enough about me.  The good news is that we're taking another break from patching (possibly permanently).  The a-little-bit-less-than-good news is that her bad eye appears to have reached it's full potential through patching; at the last three appointments her eye has had the same results so the patching has done all it can.  Which sounds a little bit dejecting, but the opthoptist showed me how far we've come in the last almost two (!) years:

eyechart

Before we started, Maia's bad eye couldn't even read the top line.  That's pretty terrifying.  And now, she's able to see between six and seven lines below that. Not quite as good as her good eye but not too shabby either.

eye collage

And here she is before and after her appointment: the only thing better than not wearing the patch is not wearing the patch but also eating a Mint Aero.

Wednesday, 22 February 2012

6

The Recidivist

Guess who's back...

the girl

Unfortunately the two month hiatus from patching has led to her lazy eye weakening again, so it's back on the patches for us. If I understood the doctor correctly (which is never guaranteed), this will go either of two ways. Best case scenario: it will improve and stabilise in a better state. Worst case: it will improve but then decline again after patching is done. Either way, (I believe) these will be the last few months of the regime. If the eye can't remain at the better state without a patch, there's no medical reason to keep patching*. Wish us luck!

*Unless she wears it for the rest of her life. I do not want to be in close proximity to a pubescent , hormonal Maia with a Hello Kitty eyepatch.

Saturday, 17 December 2011

10

Not a patch on her


We had our two month follow-up at the Orthoptist yesterday and the girl is now patchless! At least til our next appointment in February, anyway, and if the vision in her bad eye remains stable we can remain so :)

Tuesday, 1 November 2011

24

Tutorial: Sewing an eye patch for lazy eye / strabismus / amblyopia

Now that we are (hopefully!) reaching the end of our patching regime in five short weeks, I thought I'd share the tutorial for making our eye patches. With the rate that we lose them, I'll probably still make half a dozen more though...

patch side

Some details about the patches: They consist of three layers (snazzy outer fabric, mid to heavyweight inner fabric, and soft flannel lining). The snazzy layer is self-explanatory, the inner layer is to give the patch some rigidity and also block out light, and the flannel (I've always used black) is so there's something nice and soft on her face. These patches are designed to fit my daughter's plastic moulded frames, which don't have nose guards. The patch is hooked onto the glasses with elastic, and then is essentially held on to her face by the glasses. Make sure the glasses are well fitting, as if they slip down the nose, the patch goes with it. No peeking is the general rule when it comes to patching. There are darts so a dome is created around the eye, meaning the vision is removed but the eye can still blink normally. The patch also extends well on to the leg of the glasses. No peeking, and no giving me the side- eye. We all win.

One feature of this patch that is optional is the bias binding. If you're just going to test the suitability of this type of patch, I'd do it initially with just a serged / rolled / overcast zigzag edge. Although the binding does give it a bit of stability and shape, it also adds a PITA factor of at least ten. Twenty if you use satin like me. The reason why I started binding the edges was because Maia complained that the stitching was scratchy. However... every time she complained about having to patch because of something specific, I changed it to accommodate her. Not because I am the best mum ever, but because she was going to wear that patch and there is not a complaint in the world that I will not thwart so be quiet and put your patch on.

A caveat: I am not an optometrist, nor do I play one on TV. I have, however, shown these patches to our specialist who thought they were better than the cloth patches that the NHS endorse. They're bigger and firmer so there is less chance of peeking. And they've definitely worked for us, with a far better improvement in her lazy eye than they were expecting.

Now that you can't sue me for this specific reason, let's go.

Materials: small piece snazzy fabric, small piece mid/heavy weight fabric (I use canvas), small piece soft lining (I use flannel, and always use black), 1/4" elastic, double fold binding (I use satin because I'm a masochist, and because my daughter is a special snowflake)

1 pattern

Here is the pattern. One of these days I'm going to figure out how to have a download-able pdf (anyone? anyone?) here. Please note that this is a patch for her left eye, if you need the right flip it for a mirror image. It is symmetrical along the horizontal fold line.

2 layers

Start making a fabric sandwich. Black flannel at bottom, canvas next...

3 cut

Fashion fabric on the top. I like cutting all of the layers together because I want them all the exact same size and shape. You will note that I also cut out the darts from the paper pattern. This is a special step for pedants who want to make sure the darts don't mess up the detail of the fabric.

4 post cut

Lovely fabric sandwich, non-obtrusive dart placement.

5 baste

Baste all three layers together close to the edge.

7 chalk

Flip it over and draw your dart lines with chalk on the lining.

6 elastic

Pin your elastic vertically 3/4" away from each end. Baste the ends in place at your previous basting line. **If you have glasses with nose prongs, omit the elastic at the inner side and make a centred 1" buttonhole there instead. You will slip the nose prong through the buttonhole to secure the patch to the glasses. The 1" size means that the patch can still be positioned easily up or down the face to ensure full coverage.

8 darts

Fold your dart in half so the legs match up and stitch. Repeat for other dart.

9 stitch down

Fold the dart to the outside (i.e. towards the leg end), and stitch it down along the basting line. Repeat for other dart.

10 dome

Now you have a dome. Readers without special snowflakes, you can actually serge / roll hem / overcast zigzag the whole thing now and omit the hateful binding.

11 iron

Fold and press your binding so the bottom portion is slighty wider than your upper portion.

12 pin

Starting at the elastic, pin your binding all the way around. Make sure that you are catching the fold underneath too. Pulling a bit on the binding will help you round the curves.

13 edge

When you get back to where you started, fold the raw edge to the inside and then pin over the raw edge underneath.

14 stitch

Start sewing just before the elastic (i.e. before the end bit that is folded over), going very slowly right at the edge of the binding on top. Remove the pins as you get close, smoosh down the darts so it's flat, leave the needle in the down position so you can pivot around the corners.

15 slipstitch

Because I hate satin bias binding, and cannot for the life of me stitch it neatly at the fold, I stop just before the folded end and slip stitch the layers together. And then you're done.

16 underneath

This is the (slightly wonky) inside. In my defense: satin bias binding. And shoulder bumps from my ingrate beloved daughter as I was trying to sew.

17 top

And the outside.

patch front

This is the proper way to wear the patch. The inner edge should sit on the bridge of her nose, rather than in the eye socket. The upper dart should be above the eyebrow and the lower dart on the cheek. Once those three are in position, pull the leg towards the ear to mould it to the face.

not effective

This is the improper way to wear the patch.

Wednesday, 12 October 2011

22

The State of the Girl

eye patch 1

It's been eight (long) weeks since we started the eye patch regime. At the initial appointment to access her eye problems, we found out that the vision in her lazy eye was poor enough that her brain had turned off the signals from that eye completely. Even with her glasses on, she couldn't see past the first line of the eye test! With instructions to patch six hours a day, they were hoping to see a fifty percent improvement in the bad eye. And now we've had our first follow-up appointment and.............. There's been an eighty percent improvement! The bad eye has almost equalised with the good eye, so we only have one month at four hours a day and one month at one hour a day.

eye patch 2

We are all beyond pleased, and so proud of how brave she's been. It's not been easy, her confidence has taken a serious knock and there has been some major angsting, but she has never refused to wear it and for that I'm eternal grateful.

eye patch 007

I've been continuing to make her new patches based on her complaints feedback on the earlier ones. The rolled hem edges were proclaimed scratchy, so I started binding them in satin bias binding, which also has the added benefit of stabilising the dome shape so her eye can remain open. The stiffer dome shape (and also the large size) has also ensured that peeking around the edges wasn't possible. The optometrist said that my version is better than the one that the NHS has been recommending so that was a bonus :)

Addendum: As far as I'm aware, there's no one who reads my blog who currently has a patching child and would therefore be interested in a tutorial, but if that ever changes or if someone finds themself here who wants to know how to make one just leave a comment.

UPDATE: The tutorial is here!

Friday, 5 August 2011

16

Ensembles and Explanations

Hello Kitty patch

Thank you for all of your comments about Maia's patch and your thoughtful advice, it's day five now and she's blown my socks off with how stoic she can be. We've had a play-date with friends be-patched, and today we ventured into town for a movie, lunch and a spot of shopping and she's not put up a fuss at all. She has even answered questions from other kids today about why she was wearing it: 'It's for my eye to get stronger'. Subject closed and everyone moved on. She's a star.

Coordinates Hello Kitty from head to toe- seriously!

I probably should have said the other day that deciding to make her cloth eye patches over using the adhesive ones wasn't a whim on my part; I think some people were worried that making her patches was tantamount to refusing a cast for a broken leg and crafting a Popsicle stick splint instead. When we were at the optometrist, all of the options for patching were discussed and we were given a cloth patch to try on in the office (which I of course studied and then researched later), but the NHS doesn't give those out for free. I told the doctor that I'm a seamstress and we discussed what the requisite properties of an eye patch were: in short, to block the good eye from seeing at all. One of the advantages of a cloth patch over an adhesive patch (other than the irritation of an adhesive), is that a cloth patch allows the eye to be open where the adhesive ones tape the lid shut. If you can see from the closer-up pictures, the patch is darted at top and bottom so it forms a dome around the eye socket. This allows the eye to be open and blinking along with the other other eye, but unable to see anything at all due to the wrap-around onto the leg of the glasses and the coverage up onto the forehead and down to the cheek.

Red and pink hearts for red and pink ensemble

The greatest treat for Maia (beyond the comfort), is that every night she has picked a new fabric from my stash for another patch to match the next day's outfit. Perhaps not viable in the long term, but a small inconvenience for me to reward her for her bravery. I couldn't be more proud of her.

Tuesday, 2 August 2011

15

Going through a Painful Patch


Sometimes we say, 'Oh, that was painful to make' because the fabric was evil, the machine misbehaving, or the pattern was tricky. But sometimes we make things that are just painful: things we didn't want to have to make, things that invite others to notice you're different.


At the optometrist yesterday for the first post-glasses check-up, her bad eye flunked. The glasses have corrected her vision in her good eye to passable but the disparity between her eyes means that information picked up by the lazy one is being disregarded by her brain and therefore her eye isn't getting stronger.


So now we need to patch six hours a day to force the bad eye to improve. The end result will hopefully be a success, but at the moment she's struggling to see at all. And asking valid (yet plaintive and heartbreaking) questions about why we're making it so that she can't see anything, and why everyone else doesn't have to wear one. Today she said she didn't want to go anywhere because she didn't want people to see her patch. For a very sensitive and easily embarrassed child, this is going to be a hard time for her. Without a doubt it's less hard for me, but I feel so sad for her and at a loss as to how to help.


The adhesive patch she wore yesterday removed skin and eyebrow hair when it was taken off so after a couple of hours of research last night I rustled up this prototype for a cloth patch. There's a couple of changes I want to make now she's had it on all day but it must be more comfortable than the adhesive one. And obviously-- pink. Parents of patchers/ those patched as a child / creative types / psychoanalysts... any advice on how I can help her?

Saturday, 19 February 2011

21

On Beauty, on Truth. And my own shallowness.

When you post pictures of yourself you can pick and choose what to share. You filter out ones where you don't look good, you crop out bits that unflatter, you adjust the brightness / contrast to restore yourself to humanity, you make glib comments about your appearance to preempt anyone actually thinking those things for themselves, and to give people permission to laugh about you because, hey- you're doing it yourself!


Does that change when you're posting pictures of other people? My treatment of posting pictures of the kids over the last couple of years has been much the same: filter out the ones that don't flatter them, adjust brightness / contrast, crop out some debris I didn't want shown. Not to hide anything, but to show the pictures and the kids (and myself by extension) in their best light. I didn't feel guilty. It's what we all do.


And then something changed. When I first noticed Maia's eye turning in, I thought it was an aberration and the pictures that highlighted it were filtered out as 'not-flattering'. I used pictures where she was looking down, or away from the camera. But as the months have passed, it's become clear that she has a lazy eye and it's obvious in more and more pictures. And still: I use pictures where she is looking down, or away from the camera.


I've been struggling with feelings of shame each time I post pictures of her because it's come to the point that rather than just enhancing my pictures, I've been hiding something. I've lost my integrity.


She is the same beautiful girl, she has nothing to be ashamed of. But how can she know that if (even unconsciously) I've been denying this is part of who she is right now? I know I have a lot of thinking to do about this and hopefully treatment will be a success, but it's going to be a long road and I need to do better.