So my son Wesley (turned 3 today!) had a viral rash that started out kind of sparce and I thought it was just dry skin, but then on March 12 I stayed home with him for the day because he was covered from head to toe in a bright pink rash that was raised and he was scratching himself like crazy. Benadryl helped, took him to have him seen- they said it was viral and I was told to wait it out. He started to have his eye rolls and slight staring spells on the 15th, and has been having them a little more often as each day passes. His rash's color went away but the raised skin stayed- he looks like he has goosebumps all over his body- including his forehead and the skin under his eyes- it's very odd. He was treated with Azithromycin for 5 days starting the 16th. His eye rolls tonight were the worse we've ever seen him. Granted, it was a busy day for him, party at school, little party at home and gifts for him, and he stayed up late to play with a new toy my husband assembled. But as we were putting him to bed, every single time he blinked, his eyes rolled, huge rolls. He was rubbing them and I've noticed that when he's having what I can only assume is an attack, the more tired he is, the more these tic-like behaviors present themselves.
Long story short- here's my point. Who else has eye rolls that happen when they're having an "attack"? Do you call it an "attack"?
I have a message out to his neurologist and an appointment scheduled for Friday because the rash, or what's left of it, is concerning me. His color hasn't been great, he's been very pale and often his skin has been cool to the touch. Could just be a virus taking a while, but as we all know, that's all it takes to set all of this off and keep us terrified of whatever could possibly be next.
I'm very grateful for this group. I just want to say what a gift it is to be able to connect with other people who are dealing with navigating this. Thank you for being here and being supportive.
Mama, I don't have any answers for you, but I am glad you are headed to the doctor soon, and I hope your little one will heal swiftly. Please keep in touch and let us know how the appointment goes.
I'm wondering if it's a severe shingles attack? I had that after the hospital for more than a month because of all the meds and steroids. I don't know that I had eye rolls, but my husband has told me my eyes were focused at odd angles (optic neuritis).
Hi mama, I'm not a native English speaker so please excuse me if I don't express too well. Last year I presented unvoluntary movements of my eyes. Mine are typefied by upward movement of the eyes with an uncontrollable upward neck flexion. As your son I started to have these eye rolls more often (probably four or five times per day). My neurologist recommended me to see a neurotologist and he told me that I was having oculogyric crisis.
I'm not sure if this is similar on your son. With me, my doctors readjusted the doses of my meds (they lowered me the doses of some and added me Benadryl). Crises are practically disappeared.
Thanks for the responses! So- Wesley was put on Steroids- Prednisolone for 5 days to help with what they believe is an attack. They would like to do another MRI to see if he's had further damage since last year. We have applied for Medicaid and are waiting for all of that to be in place before we do anything else. His rash is just a viral rash and they're assuming because ADEM is a kind of auto-immune disorder it just takes his body longer to get rid of things like viruses, but that we're not to be concerned about it at this time. :)
Hi, my daughter is 22 months post ADEM and has just been diagnosed with Absence seizures. At her follow up visit for ADEM we mentioned that her eyes roll and she seems to zone out for a couple of seconds. She had an EEG and epilepsy was the diagnosis and seen as unrelated to ADEM. We have noticed the eye roll/stare for over one year. Anyway it seems strange to have an unrelated to ADEM diagnosis to this especially after reading your post. Unfortunately she was prescribed anti seizure meds that we stopped on the second day due to awful side effects. I find it interesting that steroids have worked well for your son. I also hope he is doing well now. Thank you for posting.
Hi, one thing the doctors recommended to me for my 4 yr. old son was to make sure that he got a lot of rest. They stated b/c his brain is healing, we never want to overload him w/ too many activities or stimulate his mind too much. Therefore, we make sure he takes a nap each day. Sometimes he rests for 45 min. and sometimes 2.5 hours. The longer naps means he really worked hard that day at school or his brain is really healing.
Also, since it's Halloween week w/ lots of different activities occurring, we pick which ones he will go to. Not two in one day.
Plus he has a little cold he's fighting so we definitely don't want to stimulate him too much.