Son Said He Goes Blind And Sees In Black And White - What Is This?

[louloutinks]

Hi all

my 9 yr old son has ehlers danlos like me, so I feel a bit concerned as he told me on Friday that he 'went blind and then saw everything in black and white'. I asked him how many times it's happened and he said it is 'not that many times' maybe once a month. I asked how long it lasted and he said 'sometimes it lasts up to 20 seconds and sometimes I get them at different times' meaning that he loses vision OR sees in B/W.

Not sure what is happening so has anyone got any ideas? I am going to take him to the doc.

I know with EDS there can be eye problems but not sure what this is. He has also been having absences again - he had these when he was younger and had a sleep EEG but all was ok.

Thanks in advance, Lou

[kclynn]

Last year my son had a number of episodes of his vision going black, and like you say, half a minute or so usually. He also had absenses that were so strange, he even had one standing up. Unlike what I have read about absence seizures, he heard what was going on around him, just couldn't respond, like he got stuck, then when he came out of it, he would maybe blurt out the answer to a question or something like that. They also would only last 20 sec +/- Don't know about the changes in vision color. He hasn't had any since he has been on the florinef or midodrine.

[juliegee]

Tinks,

This is probably something very benign. My vision dims when my ANS symptoms are bad- wonder if this is something similar and a child's way of verbalizing it? BUT, momentary loss of vision COULD also signify a serious problem with the heart or brain. To be safe this needs to checked out ASAP. Please let us know what you find out. you and your little one are in my prayers.

Julie

[Brye]

Optic migraines can cause visual disturbances without necessarily having a HA. Still should check it out. But it can cause temporary blindness.

Brye

[anna]

All my 3 have Migraines and get a lot of the aura's without the actual head ache, your son might be getting that!!! But I would get these episodes checked by a Dr. just to put his and your mind at rest.

[icesktr189]

My vision often goes completely black and I am fully conscious without passing out. It can happen when I bend down or walking too much. My vision will just go completely out. Usually lasts about 20 seconds but it feels like forever. Like julie, when my ANS symptoms are bad (like right now) it looks like i am always walking around with the lights out. Everything seems dark and clouded, even when I go out in the sun. Drives me crazy!

[louloutinks]

I was reading about optic neuritis and this can cause greying of colours and it can be seen with EDS. It also has something to do with an immune response - which made me think (veer off on a tangent) - he has a halo nevus which the doc said that this is because his immune system is attacking itself so do you think this could be of any relevance.

KCMOM, that is exactly what my son gets - just freezes in position like a statue even when standing. He gets very tearful and confused afterwards too.

I have booked a double appointment as I need to talk about physio and insoles/vision and something else so we will see what happens later.

He just seems a bit young to have this type of problem.

He has got prolapsed mitral valve because the EDS so I suppose it could affect his vision too.

[abnel]

I get this if I bed over and straighten up too often or too quickly. I get the greying out of my vision, I see black and white fuzzy stars and sometimes my vision goes completely. Other times all I see is white. Just like Dani this lasts for around 20 seconds.

The specialist I see who runs the blood pressure disorders cinic at a major hospital advised me this is very common in people with low blood pressure. I just wonder if your son suffers from low blood pressure at different times. I don't get this often anymore, but there was one time around 15 years ago when I got this every time I bent over and straightened up. It wasn't pleasant when it happened that often (daily) and it took my breath away.

[Darlene]

i see blind spots, and lightning. can't explain it. my neurologist calls this aura

[louloutinks]

Well we got to the doctors and they are sending him to an orthotist (yay at last - have been waiting years!) for insoles. I told the doctor what my son had told me so the doc said to my son 'I hear you have a problem with your eyes' and my son said 'no' (can't kids make you feel daft). He then said 'oh yes they go black'. The doc asked him to tell him what happened, so my son looked around the docs office, grabbed some books and shut his eyes and walked into the wall very dramatically.

I could feel myself going very red by this point! He then told the doc it happens about 5 seconds each time (he told me up to 20!). The doc told him to focus on a lamp whilst he looked in his eyes with a torch, so as the doc looked in his eyes his head got in the view of the lamp so my son was bending down and moving about to still 'focus on the lamp' lol (he is autistic so is very literal). The doc is now going to refer him to a paediatrician for the absences but didn't mention the eyes!

I questioned my son this morning about it and he seems adamant it happened (but I think not as often as he first said). So I am just going to sit on it and wait and see if it happens again.

[gertie]

I've had that happen with migraines & with partial seizures.