My 5 yo son suddenly lost his vision in a matter of 2 days. He went completely blind, he could not see light or anything. This was the first of Nov 07. Looking back, he had been really tired & run down acting, sleeping more, just not quite acting like himself, however, we didn't really think anything was wrong. He ended up in the hospital with iv steroids, then sent home on iv steroids for 3 more days. He is on 60mg of prednisone per day now. His reflexes in his legs were weak. He had an MRI, which showed the optic neuritis, and a 1cm lesion on the frontal lobe. CSF was done, the myelin basic protein was slightly high, not as high as his neuro thought it should be for a demyelinating illness. He has regained some of his sight, however, he has started to tire again & sleep more. They discharge diagnosis was : Optic neuritis, ADEM, possible MS. Now, from what I have read, MS in pretty rare in a child of his age. Does anyone have experience with this? I am not even sure how they will tell the difference between adem & ms, other than recurrence. I am scared, it was so hard to watch him be fine one day & then have no vision the next. He has damage to the optic nerve in both eyes from this. I worry what his future will be like, or what the chances are for this to happen again. Is there anything we can do other than keep a close watch on him? He is schedules for another MRI on Jan 2. I am really not sure what my question is, just looking for help or someone who has something to add. Thanks so much!
How is your son doing? What is his name? What is the result of MRI?
Regarding MS, it is a chronic, remitting disorder characterized by multiple white lesions in the CNS by time and location.
The condition is rare in the pediatric population; onset before age 10 years occurs in 0.2-2% of all cases. There is greater incidence of MS in females in pediatric age group.
What neurological symptoms did he have before visual loss? Visual symptoms including diplopia, blurred vision, or sudden visual loss secondary to optic neuritis is important manifestations of MS.
No reliable laboratory test unequivocally confirms the diagnosis of MS.
MRI is the neuroimaging technique of choice; small plaques of 3-4mm can be identified, particularly those located in the brainstem and spinal cord.
MRI is one of the ways to differentiate between ADEM and MS.
As your child is on steroids, you would see improvement if he has ADEM, but in MS it will help marginally and the symptoms will relapse again.
Hope he gets better soon.
Keep me posted about his disease progression.
My son's name is Collin. His MRI showed "1cm focus in the posterior right front lobe over the convexity. This appears to involve mainly the white matter and does show inhomogeneous enhancement.""This may represent a region of demyelination. Note is also made of diffuse enlargement and enhancement within the optic nerve bilaterally, worse on teh left. This shows diffusion hyperintensity. The findings are consistent with optic neuritis. A combination of an enhancing subcortical white matter focus and bilateral optic neuritis argues for a demyelination such as seen with multiple sclerosis. ADEM could give this appearence but is felt less likely considering the optic neuritis."
We did not notice any symptoms before his vision started going other than he was tired & sleeping more. His vision has improved with massive amounts of iv & oral steroids. However, the last 2 weeks he has started to sleep more, tire easily again. Plus, now he has started to complain of pain in his legs, especially the right one around the knee area. I hate this, as I feel useless as him mom because I don't know what is happening to him & the drs don't seem to know for sure either. At the eye docs about 10 days ago, they said the swelling was gone around his optic nerves. However, I don't understand why he is having these other symptoms now if there is no swelling now. He has another MRI on Jan 2nd.
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