Eye problems

Hi
Our 6 year old son has ED and has had various problems with his skin, ears, nose, no sweating, all the usual suspects. He also cries no tears and has always had dry eyes. We use Viscotears gel 3 times a day but it seems both of his eyes have surface damage.
Next month he is going to have a small operation to insert plugs into the tear duct openings which will apparently force tears to stay in his eyes rather than drain away. I wondered if anyone else had this done? I thought that as he cried no tears this meant he actually had no tears in his eyes at all, but this suggests he does, just that they don't come out the right way.
Any thoughts?
Julie

Hello Julie,
My son is also 6years old and has HED,he does not have any eye problems.
he does have problems with his nose, ears,hair,sweating,skin teeth etc.
Maybe we could help each other with any queries, coping at school etc.

Hi Michelle,
Yes, that would be great. Daniel is in primary 2 and I have to say his school have been very good with him. They approached us for information and advice prior to him starting school and they are happy for him to keep moisturiser, cooling sprays and paracetamol at school for use there when needed.
His eyes don't give problems like everything else, as it's not really something we notice. He does have sight problems which aren't helped by the damage to the surface. But as he has no tears they are dry and he sometimes rubs at them. But it's not like itchy skin that we see can get red, etc or the obvious symptoms like his nose (hard to miss that much stuff!). We really got him referred to the eye department "just in case" and when he was seen the first time just over a year ago we also discovered he is short sighted. He has always done very well at school and is great at reading but until he got his glasses he must have hardly seen anything on the smartboards at school!
Do you have any other children?

Hi Julie,
we only have wesley we had to have I.V.F. to get our little miracle and could'nt afford to try again,we would have loved another.Anyway he keeps us busy.
Wesley also does well at school.He did have a stutter but that resolved itself.He also had problems with his hearing at one time he was quite deaf,which did affect his schooling.He had ear infections and impacted wax.He has been fine since having gromets inserted,his next checkup and hearing test is on the 26th ,i am sure it will be ok.
Are Daniels teeth affected?

Yes Michelle, he has no teeth at all actually. In fact he just recently received a certificate from the Guinness Book of Records for being the youngest person to receive a full set of dentures! The record on the web is 4 years 301 days and he was 3 years 301 days when he got his first set. I'm sure there are lots of kids out there who got a set when they were younger though!
He had impacted wax removed from both ears last February and also had a hole in one of ears repaired at the same time. After that his hearing was fine but not before. He also has had his nose cautorized twice; once last February and once 2 years before that. I think the second time it was a lot more successful.
We do not have any more children either- one is plenty!

Hi Julie,
How does he manage with his teeth?wesley has two top teeth with a top set of dentures.He does not have a bottom set as his consultant is not keen to do this yet for him.Do they fit well as wesley has to use fixadent ,this is his second set neither have fitted very well.

In the summer I suffer badly with hayfever, which affects my eyes more than anything but other than this, I can't really note any eye problems.

Michelle, how is Wesley? We'll have to meet again soon!

Hi Michelle, Daniel gets on fine with his teeth. When he first got them he took them out to eat and it took a while for him to use them to eat. But they fit very well and are not loose at all. He was very keen to get teeth so the dentist at the dental hospital was happy to try. She was excellent as was the technician. Nothing is too much trouble for them and they are always happy to help. Daniel doesn't need any fixing agent for his teeth. Do Wesley's dentures go over his own teeth or aroung them - which ones does he have? Does he have any more showing up on xrays? When I found out Dan had no teeth at all I was pretty horrified but I think it has worked out easier for his dentures. As his dentist said, if he did have teeth they'd probably be very spaced out and pointy so would need work done on them anyway. I myself have a lot of my baby teeth, and some of mine at the front are capped to make them normal shaped.
Hi Mike - do your eyes water with hayfever? I used to get very bad hayfever when I was a child and my eyes would be so itchy and swell up and I couldn't stop sneezing. I hated it. Of course my mum always said not to play in fields and where did we play but in fields. I would be stumbling about sneezing and unable to see but didn't want to be left out of games!! I do have tears but according to my optician they are low quality!

Hi Julie,Wesley has two teeth at the front which are pointed but have been capped.His denture goes around them.The x- ray showed another two teeth above these but were not pointing straight down ,so they may be removed when they come through.There was no other teeth.

They water and itch to the point I can't open them properly and it really gets me down. I don't sneeze as much though.

We've had several more eye appointments since this time last year and Daniel has had both sets of punctal plugs put in to try to produce tears, but with no result.

His eye sight has been gradually getting worse since last summer.

He has eye drops every 2 hours plus additional ones when he gets up, goes to bed and an extra random lot t some point in the day - 3 different types.

We've just learned that he is classed as partially sighted. At this level he wouldn't be allowed to drive (though he's not 8 yet!).

We've also had corneal transplants mentioned to us.

Does anyone have similar problems or know more about transplants?

Any comments or advice welcome

Julie

Hi Julie, Lovely to hear from you.

Unfortunately, issues with eyesight isn't really something I know about, so I'm useless there!

I hope Daniel is coping as best as he can with this, it must be awful for him.

I take it you received my email today?

Hi Mike

Yes, we got your email today and noticed you'd been busy updating a few topics.

Keep up the good work!

We just need to get more people on the forum more regularly!

We do! That e-mail was sent to all users so hopefully it has the same effect with the others, too!

How are you?

All good.

We got our ED Lines today in the post and it has a few pictures from the Christmas party.