Mother and son dry eye combo

[EileenL]

Hi all,
I'm an SJ survivor and dry eye sufferer for 36 years. I lost the battle to dry eye less than a year after SJ. Tissue grafts over both eyes left me with color vision only and functionally totally blind. Thankfully once the tissue grafts went in I've had very little need to deal with the doctors!

Now, my eight year old son has been diagnosed with severe dry eye and puntates on the cornea and sclera. So far no underlying cause has been found and no connection to my SJ was uncovered. He had punctal plugs inserted today and I took him to the Optique Unique here in NJ to get close fitting glasses to reduce air flow around his eyes. Winter is such a difficult time for dry eye!

It's going to take me a while to absorb all the great info on this site. There's stuff it took me 36 years to figure out and new cool options. This site is a wonderful resource!!! I look forward to getting to know what it's like to deal with dry eye in these modern times. The doctor seems optimistic about my son's chances of keeping his sight for many years to come. But I'm finding myself struggling with the terror, both for him and the feelings that I thought I had forgotten long ago in my childhood. I was 7 and a half when SJ struck and my boy just turned 8. It really weirds me out that there could be some connection.
Eileen

[Rebecca Petris]

Eileen, welcome from a mom of another 8yo!

Wow, you have been through a lot. I can understand it must be unnerving to see something apparently similar starting to happen to your son.

You might want to contact Ann who has an 8yo boy with dry eye in Aus - helpful to exchange tips on what kinds of eyewear can work at this age, etc. If you need something cheap (i.e. easily replaceable so he can be rough on them while playing!) for daytime moisture protection you might want to look at the Dustbuster in the shop. I had my daughter try them on and they did OK for her running around. There's a strap included with the Medium size that I could add to a small.

I am going to suggest you look into Boston Foundation's PROSE treatment. For sight-threatening dry eye including SJS this has been a lifesaver for a lot of people including children. Hopefully it won't ever be needed but just want you to be aware in case! I wear these lenses (for vision reasons, though they also help my dry eye a lot) so am very familiar with them.

[wagnermid]

Hi Eilleen,

I am so sorry to hear your son is going through such a tough time. I hope his treatment is working and that he can get some relief from the symptoms. My son is 8 too (as Rebecca mentioned). His problems have probably been going since birth he was extremely photophobic when he came into our family at 6 1/2 months old, he started getting erosions and ulcers when he was about 4 and has recently been in such extreme pain I was feeling quite lost and found the site when looking for solutions. He does not have a known cause for his problems they think he has a limbal stem cell deficiency but don't know why.

Here in Australia his problem is the sun, but it sounds like a cold climate brings just as many challenges.

This is great site with so much information.Hope we can exchange ideas if we find things that work for our sons,

Cheers from "down under"'

Ann

[EileenL]

Hi Anne,
Wow your boy is a tough little guy.

Thankfully so far, Asher doesn't have any discomfort. The eye doctor notified us of the problem during a routine checkup. Score a point for preventive health care. He's had silicone punctal plugs in since Monday. My husband and the nurse thought his eyes were looking less red today. I changed his sleeping arangements so that he has the room with the least amount of heat at night. I also closed off the vent and close the door to his room. We recently bought a heat pump which has been great for the house but hell for my dry eye since it runs and circulates air two to 3 times what the old furnace and window air conditioner did. Asher is oblivious so I have to make these decisions based purely on my own experience.


I'm so sorry your boy is having so much trouble. It is that time of pain and struggling and too many doctor visits that is giving me the most emotional trouble as I make decisions about Asher's treatment. In hind sight I really resented not being asked if I wanted any of the "optional/ experimental" treatments or hospital stays. Perhaps it was because I spent so much of that time under a blind fold anyway, but it was almost a relief to have the sight stealing grafts just to be free of the doctors, the painful treatments, and the day to day
uncertainty of my medical status. I'm very excited about the Boston Sclaral Lense as an option for my son if his condition doesn't clear up. The lense really does sound like an excellent option, especially since it's fully reversable if it doesn't work out. I actually went to Boston to try it when my son was small. My sight is gone so it's use would only be to help with the dry eye discomfort in my case.


Two additional thoughts that I didn't see touted on this site are:
1. a simple sunvisor to block out overhead ambient light. I find the sun actually gives my eye a sunburn if I am not very careful.
2. Applying drops while lying down, no pillow, and drenching the eye until the eye socket is thoroughly moistened. If you can turn your son to sleep on his back as much as possible during the night it will help keep whatever tears are already there from draining away as he sleeps. It always startles me how simple mucus can turn to geological stratum as it dries.

Sending hugs to you and your son,
Eileen

[EileenL]

Great news to report. Asher had punctal plugs inserted a month ago and the damage to his eyes is gone. The doctor says his eyes are still drier than they should be so we will continue the drops and ointment. I'm so relieved his eyes were able to heal!
Eileen