Should we go for the eye test-Need your input

Hi,

Our recent visit to the hospital included an eye test which came fine. As the resident doctor was not experienced he asked why she is not taking any desferal. We explained the ear toxicity and the stopping of the desferal. He checked with the senior doctor who suggested sedated electroretinogram (ERG) test. The only reason he suggested to make sure if by any chance eye is not effected.

However, the test includes sedation of the child which we are reluctant to go for it. We are still debating if this test is necessary in the presence of normal eye test in the first place. The test itself includes sedation, eye drop to make child's pupil larger, an anesthetic in the eye, a contact lens is placed on the eye and recording the electrical responses when light of different intensities are shown, the child needed to wear glasses for few hours after the test.

Can you provide your input and that will help us make a decision.

Thanks for your responses.

Hi Canadian Family,

If your daughter is nt facing any problems with her vision,i don't feel it's necessary to go through the above mentioned test,normally i would have suggested in favour of the test,but sedation is the part whoich scares me .

Wishing you luck with any decision you make.

ZAINI.

Hi,

Well, I've had the "complete eye examination" done a couple of time in which they use the drops that dilate the pupils. There was nothing else given to me. I'm not sure if this test that you mention will use anything else than those drops.

The standard precaution given to me was that I would suffer blurred vision and my glasses won't help. Apart from that they said that light will seem to be more intense and I might get headaches and dizziness.

Well, nothing happened to me except for the blurred distant-vision part and my glasses didn't seem to work, but somehow I seemed to have kept my close vision as I already am near-sighted. The effect wore off after several hours.

Hi,
This test was performed on my daughter when she was 6years old. Actually after the drops were administered to dilate the pupils, she was asked to sit with her eyes closed for 40 minutes. The first 20min were ok, then she couldn`t bear it anymore and started throwing a tantrum. After 40min her pupils were still not dilated( it takes a little more time to dilate in children)and they asked her to close her eyes yet again. She couldn`t take it anymore and we just had to abort the test. The most probable reason for sedating the child is to keep her quiet during the process.
regards
MAHA

Hi Canadian Family,
Like you I was a bit scared when they recommended the test in the first place as i was accustomed to just having the run of the mill eye test each year. That test was a little long as they did the eye drops and I had to sit for a long time in order to have my pupils dilated properly. In the end i was assured that the eyes were fine and I felt better afterwards although I did have blurred vision for a while.

It did give me a sense of comfort though as it assured me that my eyes werent affected by the desferal. I am short sighted normally which was a bit frightening before as i was not sure that it was because of the medication at first.

So my advice to you would be to let her take it as it cannot hurt. She is young though so she may not have the patience to sit for a long time, but then again she is a THAl and WE'RE STRONG people....

Best Wishes

Many thanks for your input.

The eye procedure explained in the replies is already been tested on my daughter, she didn't require the sedation and her pupils were dilated and went through complete eye examination. However, ERG test requires complete isolation (no parent allowed in the room) and sedation for one to two hour in the operating room.

I gather from the responses that she has already passed the standard test, as of now we are calling in to postpone the test for another month and go from there.

Regards.

[flash=200,200]The electroretinigram (ERG) is an eye test that evaluates the function of the retina or the film that lines the inside of the eye. The ERG test helps diagnose diseases limited to the retina, and also diseases that affect parts of the body other than the eye.

During the ERG test, the cells of the retina (the rods and cones) produce tiny amounts of electricity in response to brief flashes of light. If we know exactly how much light enters the eye, and how much electricity comes out, we can figure out how the rods and cones are working. To pick up the electricity that the retina makes, a special contact lense is placed on the surface of the eye.

To prepare for the ERG test, drops will be placed in your child's eyes to dilate the pupils. These drops are the same drops that eye doctors routinely use for eye examinations. Then we ask that you sit with your child in a dark room for 30 minutes. This is so that the eye can adjust to the darkness. It is after this period of dark adaption that the retina gives its strongest responses.

After dark adaptation, the doctor will place anesthetic drops in the child's eye and place a contact lens on the surface of the eye. Once the contact lens is in place, a series of blue, red and white lights will be shown to the child. This part of the test may take 30 to 45 minutes



Hi Canadian Family,
No its the same test really, maybe in Canada they do it differently but I had mine done in London at Moorfields and my mother was allowed to be with me throughout. It took approximately two hours for the entire thing.

I do understand your reluctance though cause if they didnt allow my mom I would not have done it at all!

Thanks for your prompt reply B Thal Girl.

Yes thats the test, I guess the sedation part is scaring us and we are not ready mentally to deal with it. Our reasons are:

She was sedated when she had her first liver biopsy done, sedated when she had her dental work done two years ago, she is due to be sedated in June for another dental work.

We are concerned that in her age that is too much and we should avoid unnecessary sedation. We are not sure if there are medical disadvantage to it.

Regards

Hi Canadian family,
I guess that i have been extremely lucky in a sense as i have never had to undergo the liver biopsy or sedation for anything else but this and my mom was with me. I do take your point though about the sedation as some people tend to develop allergies once they go under Anastethic.But each case is different I guess and you would know best. I didnt do the testing on my eyes until i was about 14 so if your daughter is much younger I guess that there can be no harm in waiting.

I also suspect that i will be facing the same thing soon as I am now located in Canada as well.

Best wishes
Roanna

First, welcome to the Canada!!

I don't think it is necessary in your case to be sedated for small things as dental work, ERG test etc. We have ferriscan available in Canada so no more liver biopsy either. If a procedure requires to stay still than at my daughter's age sedation may be required due to tantrum factor.

I see your point in waiting until it is absolutely necessary to do the test.

Thanks

Hi,
thanks for your welcome. i am still trying to fit in. will be at the annual dinner and dance hosted by the Canadian foundation on the 16th February so i hope to meet many of the patients and families.

Maybe I will be lucky to see you and yours.
regards
Roanna

In light of the normal eye test, this does seem excessive, especially since desferal isn't currently being used. She is having so many tests lately, that it might be better not to add another when it doesn't seem justified.