JulEYE ~ don't take your vision for granted

Last week Sam , six , had a followup appointment and vision check at the Children's hospital eye clinic. Sam has worn prescription glasses, fulltime, since he was 20 months old.



Sam is currently having his eye patched 2hrs each day to improve the strength in his weaker eye. Much to his dislike.This visit his prescription was changed by the Specialist Paediatric Ophthalmologist  , only five months after new glasses *$igh* but I know it is for his benefit.

We didn't detect his vision problem apart from the white eye reflection which I picked up in photos when he was 11 months old. I was terrified *.

Sam has a genetic disease "Neurofibromatosis 1" - which can result in an optic glioma, his eyes were being already being checked (initially every 3-4 months) to detect any issues - early- if they occurred.

Fortunately while he hasn't had an Optic glioma , he does have myelinated retinal nerve fibres plus myopia (causing nearsightedness). He still has photos with a white eye reflection - potentially a serious symptom of some eye diseases.


I know what Sam's white eye reflection is - myelinated retinal nerve fibres plus myopia - white fibres cover his lens. It has affected his vision though wearing glasses helps corrects this.

I just hope he doesn't end up with a turned eye ('cross eyes' -like me) because when a child has vision issues that go undetected it can cause the brain to switch off that eye (like lazy eye).It was only on subsequent visits they found he was longsighted in his other eye. I am glad we were having his eyes checked.

When I received another email asking me to mention about JulEYE I agreed to mention the campaign.

Why ?

Every 65 minutes, an Australian loses part or all of their vision – this may explain why one third of Australians list blindness as their most feared health condition alongside cancer. Yet the majority of Australians do not get their eyes tested regularly, despite the fact that 75% of vision loss is preventable or treatable. The Eye Foundation, a not-for-profit organisation, is once again encouraging all Australians to get their eyes tested in July as part of its annual ‘JulEYE’ campaign, kicked off on July 1st.

Week 2 of the campaign focuses on diabetes and eye health - and urges people with diabetes - no matter their age - to make regular eye checks part of their diabetes management plan

Don' forget your children’s eye health . They are also encouraging parents to have their children’s eyes tested and be aware that vision problems are not exclusive to the elderly only and can affect babies and young children.

As a mother, who has faced such issues I wanted to share this.I am aware that is quite widespread in Australia.Undetected vision problems are estimated to affect one in four Australian children. Parents need to be aware of the importance of children’s eye health and that regular eye checks are just as important to a young child’s overall health and well being as other regular health checks, therefore, good eye health begins with testing from birth.

The Eye Foundation is asking all Australians - no matter their age - to get their eyes tested this julEYE, and place eye tests every two years on their family’s calendar of regular medical checks.

AS parents we need to protect our children’s vision and our own.The eye foundation would love others to mention this and help spread the word about this great cause!

For more information or to link to the Eye Foundation website please go to www.eyefoundation.org.au


• Follow on Twitter- @EyeFoundation;

• Like on Facebook- The-Eye-Foundation

• Chat to them on their blog- EyeSiteBlog.com

The amazing - Rachael Leahcar , 17, from Team Delta on Channel Nine's hit TV show.The Voice Australia suffers from a rare eye condition called Retinitis Pigmentosa.

I can't stress enough how important sight is. I am partially blind in one eye for a completely different reason (head injury as a child at school with undiagnosed partially detached retina).I have some peripheral vision but a huge blind spot in my central vision.

*Everyone please note - white eye reflection is not normal and you should get a referral to an Opthamologist asap if you see it in your photos. It could be life threatening if left unchecked.I still get hits on this topic every week.

This is a non sponsored community announcement - because it is so important to me.

♥

10 ways to stress less while your husband is having an MRI

My husband is off having an Brain MRI right now , hopefully as we speak.

He had a follow up appointment with the Radiation Oncologist at Cancer care centre , all seems good. A huge relief .

Then he saw a Neurologist because of the the ongoing headaches. They decided they would do another MRI just to rule out anything, it's been 11 months and 1 weeks since his last one.

It was supposed to be 3 weeks ago but 15 mins after they booked the scan (7pm the same day after the appointments) by the time he had walked up to give/receive informative the machine had broken down.
They think it is more likely stress, and they told him to adjust his medications too.

I am not stressing. 


Last week , when Sam had his annual Neurofibromatosis  [NF1] review at the Children's hospital clinic . We saw the Specialist not just a registrar . She decided Sam needs a brain MRI too. Again just to rule out anything causing his vision changes.

The eye appointment 3 weeks ago shows his eyesight is slightly worse in left eye. The eye they can't see the optic nerve in because of the myelinated nerve fibres covering the disc.

In children his age they give them a trial mock MRI first to see if they will cooperate and lie still enough without a general anaesthetic. When I mentioned we were going away for 2 months in 3 weeks, she said let's try to get it done before you go...have n't heard yet.

If he can have it done without a GA the wait will not be as long. I am not stressing ... !

How do I stress less ?




(Just what I am doing)

I said to myself "I can manage at least a few of these every day" ...

He just called and is on his way home.
How do you cope with stress ?

Edited to Link up with Sif @ At the bottom of the garden's 10 things on Tuesday.
♥ Never miss a post

JulEYE and your child's sight

As you know my five year old,Sam, has worn prescription glasses since he was 20 months old.

We didn't detect a problem ourselves apart from the white eye reflection which I picked up in my photos when he was 11 months old. I was terrified *.

Sam has a genetic disease "Neurofibromatosis 1" - which can result in an optic glioma, his eyes were being already being checked (initially every 3-4 months) to detect them early if they occurred.

Fortunately while he hasn't had an Optic glioma , he does have myelinated retinal nerve fibres plus myopia (causing nearsightedness).

I still get photos with a white eye reflection - potentially a serious symptom of some eye diseases.

I know what Sam's is - myelinated retinal nerve fibres plus myopia - white fibres cover his lens. It has affected his vision though wearing glasses helps corrects this. I just hope he doesn't end up with a turned eye ('cross eyes' -like me) because when a child has vision issues that go undetected it can cause the brain to switch off that eye (like lazy eye).

It was only on subsequent visits they found he was longsighted in his other eye. I am glad we were having his eyes checked. Sam may still need a patch for one eye to strengthen his weaker eye.

When I received an email asking me to mention about JulEYE I immediately had to share it.

Why ?

Every 65 minutes, an Australian loses part or all of their vision – this may explain why one third of Australians list blindness as their most feared health condition alongside cancer. Yet the majority of Australians do not get their eyes tested regularly, despite the fact that 75% of vision loss is preventable or treatable. The Eye Foundation, a not-for-profit organisation, is once again encouraging all Australians to get their eyes tested in July as part of its annual ‘JulEYE’ campaign kicking off on July 1.

Each week of ‘JulEYE’ will focus on a different aspect of eye health. The third week will be focused on children’s eye health and encouraging parents to have their children’s eyes tested and be aware that vision problems are not exclusive to the elderly only and can affect babies and young children. 

As a mother,  who has faced such issues I wanted to share this.I am aware that is quite widespread in Australia.

Undetected vision problems are estimated to affect one in four Australian children. Parents need to be aware of the importance of children’s eye health and that regular eye checks are just as important to a young child’s overall health and wellbeing as other regular health checks, therefore, good eye health beginswith testing from birth. 

The Eye Foundation is asking all Australians - no matter their age - to get their eyes tested this julEYE, and place eye tests every two years on their family’s calendar of regular medical checks. 

AS parents we need to protect our children’s vision

Kirk Pengilly is the ambassador for ‘JulEYE’, as well Australian country artist, Lorin Nicholson and many other young, inspirational Australians currently battling eye disease.

The eye foundation would love others to mention this and help spread the word about this great cause!

For more information or to link to the Eye Foundation website please go to www.eyefoundation.org.au

They are also getting social this year so you can:

•   Follow on Twitter- @EyeFoundation;

•   Like on Facebook-  The-Eye-Foundation FaceBook Page; and

•   Chat to them on their blog- EyeSiteBlog.com

*Everyone please note - white eye reflection is not normal and you should get a referral to an Opthamologist asap if you see it in your photos. It could be life threathening if left unchecked. 

 

PPS I can't stress enough how important sight is. I am almost blind in one eye for a completely different reason (head injury as a child at school with undiagnosed partially detached retina).I have peripheral vision but a huge blind spot in my central vision.

This is a non sponsored community announcement - because it is so important to me.

 ♥ Never miss a post

This and that ...

So my dear readers did you miss me ?

Okay don't answer that.I really missed you and my Google reader had over 350 posts, over 100 emails too ...forgive me if I have missed visiting you.I had very limited dial up access but it or the computer I was using wouldn't let me into my comments or others - (maybe it was blocking pop ups?)

Well, I am back. Just as we got home last night there was a power failure in the area. So we went shopping for milk and bread etc.I got home - still in darkness and thought darn I can't use my computer ...like magic the sensor light came on and we heard the neighbours shouting hooray.

Suddenly, I had joy,joy ,joy in my heart but for the sake of sanity I had to restrain myself to unpacking the car and feeding the Brothers dinner and then nursing them.

So did I miss anything exciting ?

What's your news ?

I know my traffic is down and my subscribed readers goes up and down.

I have a good excuse we have a quick sojourn to Central West NSW near Dubbo.I bummed around the old house and fought my blog addiction with eating,cooking and eating, cleaning up, and eating and chasing the Brothers ... plus dealing with the scourge of the outback burs - prickly little b@stards.

The boys enjoyed runnign away from me exploring the farm and long grass. Then wanted to picked up, a lot, their pants bottoms/legs/socks were covered in burrs and so was I ...aarghhhh or the floor in my bare feet.O U C H try not to swear !!!

My DH had some things to do to help his father fix around the farm ... FIL is almost 81 but thinks he is 60 - though less so nowadays but still extremely active. He has a pacemaker so can't operate things with spark plugs near his chest (like the whipper snipper) so Dh did that. He also mowed the grass around the house, ploughed a huge paddock, made a few firebreaks for scrub bush piles ( 'bonfire' material but first FIL needs to wait till right time and get approval to burn them) and fixed a leaking roof .Not much of a holiday for Dh but he likes playing farm boy and driving the tractor. Our teen was content motorbike riding and driving the paddock basher cars around. S & J loved bashing too.

Where am I at now ...I am struggling to get our 2007 tax returns finished and a heap of other business essentials due all about now. We also started using Office 2007 and I am lost using the new features and finding my way around Excel. Curse it !

I lack motivation but it has to be done. At least now it is school holidays I have a helper to keep the Brothers from driving me crazy occupied .They are have been fractious lately and wanting a lot of loving.Plus having to watch them so carefully with S's glasses @ over $300 I can't afford to have them broken (again) ... well when we get them back.

S 's new glasses also broke while we were away.I lost half a day taking them back to order a replacement - at their cost because the first ones were not the right size.I noticed I get a lot of hits from Google on white eye reflection

I still get quite a few photos with white eye reflection and I know what his is - myelinated retinal nerve fibres plus myopia.I just hope his vision isn't too badly affected .I also hope he doesn't end up with a turned eye ('cross eyes' -like me)

I am almost blind in one eye for a completely different reason (head injury as a child at school with undiagnosed partially detached retina).I have peripheral vision but a huge blind spot in central vision. I have had two eye surgery twice to correct the turn - it is still noticeable and I feel very self conscious about it. I wore glasses at school for a few years too. I was teased mercilessly at school for this and other reasons .I don't want him to suffer this either.

In three weeks we will have to start patching his good eye ... imagine the fun then.I am planning to make 'pirate' play a feature of every day to get his used to it. Well if he understands.

♥

White eye Reflection ...

Looking back I am right here with wanting to get this week over too and it has only just started.

The past few weeks I have been so worried about S. I noticed when I was downloading photos to upload to my blog June 29th that Sam's left pupil had an unusual white reflection. I couldn't get it out of my mind. Dr Google had me envisioning some scary things ... leukocoria .

Though I knew from a previous eye examination one eye had an abnormality found normally in some people where the myelin sheath that surrounds the optic nerve is partially obscuring his disc but not in away that affects his vision at the moment.

myelin is the covering of the individual nerves that make up the optic nerve.
Normally myelin stops where the optic nerve enters the eye

but his didn't in left eye. Just means that makes it very hard to see his optic disc and a big problem should he develop an optic glioma -which was why he had an eye appointment 3 months to monitor for this. [That is another story related to a genetic disease he has (12% possibility of getting this and my cousin (22) did have one 20 years ago)].

I wasn't sure which eye it was. So I rang Westmead Children's Hospital about 2 weeks ago to ask someone from the eye clinic. Someone checked his medical records and conferred with me it was the left eye and that is was possible it was causing the white pupil reflex instead of red but that should see him to make sure. I was able to get an appointment for 30th July - today.

I hardly sleep much last night ... felt compelled to Google last evening and I should have known better . So it was running over and over in my head.I was so worried my precious baby had something more awful.I can't even say it out loud. I also found it in other photos since 19th June and one my niece took.

Thank God ! it is still just the myelinated sheath that is causing the white eye reflex. He may also be shortsighted in that eye and develop a turn (manageable/repairable but again something I would rather not happen). Today, his vision was fine ~ sadly I saw a blind little girl there today about 2-3 years. I can imagine a world without my sight.

Though I am almost blind in my right eye from a head injury I received at school when I was about 8 ~ causing concussion and bruising to my right forehead/eye and a undetected, partially detached retina. It was too late by the time they picked it up. I'd say I would be technically blind in that eye as I only have peripheral vision but I can't remember it any other way .

So just days before their birthday I went from being a super high to the lowest low - and I couldn't share it either.I'm over it at this point and feel a bit guilty for giving him this ... the last few days I have just felt speechless and on edge.

Everyone please note - white eye reflection is not normal and you should get a referral to Opthamologist asap if you see it in your photos. It could be life threathening if left unchecked.

It is a simple examination.The only part where he was a bit uncomfortable was when they put drops in to dilate his eyes. It is very quick when they did it and S didn't cry too long. It wasn't a painful cry, it was probably more of annoyance to him to have something squirted in his eye. It takes about 30 mins for the eyes to fully dilate. Though he also didn't like the tape patch on his eye and being held down for them to see. I forgot to take his sunnies for afterwards - too as the eyes are sensitive to light for a while.

Today, I also had to make an appointment for J to have a head u/s too because his head circumference has gone from 50 %tile to 95%tile and Paed just wants to make sure ? As if I don't need something else to worry about ... it isn't till 14th August.