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Optic Neuritis in 5yo son...
HI
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!
Lisa
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!
Lisa
Hi Lisa,
I just wanted to welcome you to the forum and offer my thoughts and well wishes for your sweet son.
Hugs
Jazzy
I just wanted to welcome you to the forum and offer my thoughts and well wishes for your sweet son.
Hugs
Jazzy
Thank you for the replies. I just don't know what to do. The drs cannot tell me for sure what it is. He is hard to wake in the mornings sometimes & complains he cannot see good for about 2 hours after he wakes up. Now, for the last 3 days, he has been complaining with his knee hurting. It appears to be swollen a little maybe. He limps around off & on, especially in the mornings. I am waiting on the dr to call me back. It is frustrating, as it seemed to start with the optic neuritis, & now he has other symptoms. I had him at the eye docs a week & a half ago & the swelling in the optic nerves is down, so not sure what is going on with him. It is so hard to watch him and I feel so helpless as him mom.
We do not have an MS specialist, but a ped neuro. She doesn't seem to think it is ms (as in not sure, but leaning towards no) b/c he had no bands in the csf. Just wish I could find answers.
Thanks
Lisa
We do not have an MS specialist, but a ped neuro. She doesn't seem to think it is ms (as in not sure, but leaning towards no) b/c he had no bands in the csf. Just wish I could find answers.
Thanks
Lisa
Lisa, I am so sorry for what happening to your son! How horrible for you to watch and how bewildering for your son. I was a pediatrician for 23 years, specializing in multi-hanidcapped kids and little premies. I have no personal expeience with MS in children. It is quite rare, but definitely has been seen at that age and the diagnosis has been confirmed as young as 18 months.
Yes, the major confusion as his age and with his findings is MS and ADEM. But, my latest reading indicates that recurrent episodes of ADEM have been reported. It sounds like his doctors are thinking of all the right things.
There are two official Pediatric MS Centers in the United States. One is at the University of California San Fransicso and one is at the University at Stonybrook New York. There is also an International Panel of pediatric MS experts that have been meeting and publishing their findings for a couple years now. For instance, the MRI findings are often distinct from adult MRI's. Also, form my reading childhood onset does not typically have a very aggressive course.
I know very little about ADEM.
Usually the person's sight returns after attacks, though with repeated attacks the sight can become limited. Along those lines, I was married for 16 years, to a man who lost all of his sight in a accident at age 12. He had an Economics degree from the University of Chicago, a degree in Mechanical Engineering frrom Stanford, a Masters in Computer Science from UCLA and received his JD from the University of Chicago. He is now a practicing attorney. The things available for blind people and those with limited sight are amazing! Everyting in our house talked - even the scale!
If you need contact information for any of the resources I mentioned I will find them for you. For your whole family, I pray that this will still be a joyous and love-filled holiday and that the coming year will demonstrate that this was ADEM and won't recur.
I, too, invite you to share your trials with us, and let us support you, your son and your family.
Peace,
Quix, MD
Yes, the major confusion as his age and with his findings is MS and ADEM. But, my latest reading indicates that recurrent episodes of ADEM have been reported. It sounds like his doctors are thinking of all the right things.
There are two official Pediatric MS Centers in the United States. One is at the University of California San Fransicso and one is at the University at Stonybrook New York. There is also an International Panel of pediatric MS experts that have been meeting and publishing their findings for a couple years now. For instance, the MRI findings are often distinct from adult MRI's. Also, form my reading childhood onset does not typically have a very aggressive course.
I know very little about ADEM.
Usually the person's sight returns after attacks, though with repeated attacks the sight can become limited. Along those lines, I was married for 16 years, to a man who lost all of his sight in a accident at age 12. He had an Economics degree from the University of Chicago, a degree in Mechanical Engineering frrom Stanford, a Masters in Computer Science from UCLA and received his JD from the University of Chicago. He is now a practicing attorney. The things available for blind people and those with limited sight are amazing! Everyting in our house talked - even the scale!
If you need contact information for any of the resources I mentioned I will find them for you. For your whole family, I pray that this will still be a joyous and love-filled holiday and that the coming year will demonstrate that this was ADEM and won't recur.
I, too, invite you to share your trials with us, and let us support you, your son and your family.
Peace,
Quix, MD
I agree with "T." This is a heartbreaking story.
I get a magazine every few months, put out by the Multiple Sclerosis Society of America. It's main feature this issue was MS and children. I never knew that MS can happen to a child so young.
Since you have come to the forum and welcome by the way; I will do my research on childhood MS. I want to be well-versed, so I am able to help you through this process with your son, if you so desire.
Please give that special boy of yours, hugs and much love from many ladies and gentlemen on the MS Forum. We all send well wishes to you and your family. We also hope that you will come here often to let us know what is going on or if you have any question.
One of our members is a retired pediatrician. She is not a Neurologist, but she may be able to offer you more advice that I can. She is the most tender and caring woman I have ever met. How lucky those many children were that she cared for, during her many years of practice!.... I really think she will be able to give you advice and much understanding.
God Bless You, Lisa and most of all God Bless your son and family.
Welcome....
Heather
I get a magazine every few months, put out by the Multiple Sclerosis Society of America. It's main feature this issue was MS and children. I never knew that MS can happen to a child so young.
Since you have come to the forum and welcome by the way; I will do my research on childhood MS. I want to be well-versed, so I am able to help you through this process with your son, if you so desire.
Please give that special boy of yours, hugs and much love from many ladies and gentlemen on the MS Forum. We all send well wishes to you and your family. We also hope that you will come here often to let us know what is going on or if you have any question.
One of our members is a retired pediatrician. She is not a Neurologist, but she may be able to offer you more advice that I can. She is the most tender and caring woman I have ever met. How lucky those many children were that she cared for, during her many years of practice!.... I really think she will be able to give you advice and much understanding.
God Bless You, Lisa and most of all God Bless your son and family.
Welcome....
Heather
Welcome to our cyber family,
My heart brakes for you and your son.He seems to be in good hands as they are repeating the second MRI.
Are you seeing a MS specialist ?
You are doing a fantastic job,your making sure he is getting quality care.
If this leads to MS,I pray its not,its liveable,your son may have an isolated attack and not have one for years.
Today theres meds to help,slow the progression and Drs are becoming more knowledgeable.
I have also read that MS is rare in children,but there are some isolated case.
Your son can lead a very good life if this turns out to be MS,many here still work,exercise the whole nine yards,theres a major league baseball player with MS.He's a pitcher.
Keep asking your questions this is a great support group.I feel for your son as I am dealing with bilaterial ON also.He sounds like a real strong kid and a trooper.
Merry Christmas
T
My heart brakes for you and your son.He seems to be in good hands as they are repeating the second MRI.
Are you seeing a MS specialist ?
You are doing a fantastic job,your making sure he is getting quality care.
If this leads to MS,I pray its not,its liveable,your son may have an isolated attack and not have one for years.
Today theres meds to help,slow the progression and Drs are becoming more knowledgeable.
I have also read that MS is rare in children,but there are some isolated case.
Your son can lead a very good life if this turns out to be MS,many here still work,exercise the whole nine yards,theres a major league baseball player with MS.He's a pitcher.
Keep asking your questions this is a great support group.I feel for your son as I am dealing with bilaterial ON also.He sounds like a real strong kid and a trooper.
Merry Christmas
T
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