13 Year Old Diagnosed with MS / Acute optic Neuritis

[SBryant822]

My 13 yr old daughter was recently diagnosed with MS. She has lost vision in her right eye due to acute optic neuritis (vision impared since the end of June). No results after steroids and plasma exchange.
She is dealing with some serious anxiety issues and I am looking for ways to support her. I am looking for other youth for her to be able to speak to who also have MS. We are trying to help her but I understand the need to have an outlet with peers also dealing with what you.

Are there resources esp designed for pediatric patients. I have received a lot of information re youth with parents who have MS.

[cosake]

Check in with your local NMSS - they may be able to help you.

[jlenox98]

we are somewhat in the same boat - 12 year old daughter with optic neuritis in right eye, didn't do plasma exchange but were considering it. we believe she had an attic of ON at the end of june but it was treated at a migraine, then she woke up early august with blurry vision in her right eye, pain when looking around, etc. diagnosed w/ON at that time - still looking for a definitive diagnosis of MS but all of the doctors agree this looks at lot like MS. spinal tap and another mri in december to confirm. where are you located?

[cosake]

What is the plasma exchange ? I have not heard of it.

[jlenox98]

plasma exchange or plasmapheresisis is the removal, treatment and return of plasma - ideally to remove the anitbodies attacking them.

[jojo18]

the is a camp in Rhode Island(along with other places) for teens with MS. i've been there 4 times and my only regret about it is that i didnt go sooner

[sunshine008]

i just wanted to jump in and say i'm so sorry to hear that both your kids were diagnosed with this.

I'm on the verge of bringing both my girls into my neuro for various complaints that honestly i overlooked yet now know better.

i wish you both and your kids best of luck....

((hugs))

[Aimee540]

My 15 yr old just diagnosed too

My daughter was just diagnosed a week before last. She also developed optic neuritis. She is being very stoic about it all. Just had her first shot of Rebif, today will be her second shot. I am not sure if she would be willing to chat with your daughter, but I can ask her. I'm happy to talk with you as well. My biggest question is "What's going to happen next?!?!?!"

[jlenox98]

hi there - the person who originally posted this hasn't been back on though i wish she were. we are still in limbo w/our daughter who is 12 getting over a bought with ON from Aug. we follow up in Dec w/a ped. neuro who speciliazes in demyelinating diseases/MS for a spinal tap and MRI of her spine. so, we'll know more then.

[Aimee540]

To Jlenox

Our daughter was seen at Children's Hospital for ON and was immediately admitted for the steroids treatment, an MRI, lumbar puncture, blood tests, etc. 6 weeks later she was started on Rebif. All the info I have seen says to start the treatment "as soon as possible." No one could define "as soon as possible" for me. I wanted to know if waiting 6 weeks was too long and it should start sooner. Our daughter had other symptoms dating back to Nov. 2010. The MRI showed active and old lesions. Perhaps with our daughter's history and MRI results the need to start her within 2 months was clearer. I would only suggest consulting with the ped neuro via phone and push to find out if things should move faster than waiting until December. Just my gut reaction, though.

[jlenox98]

thank you aimee for your response. i have questioned waiting until december and he's really comfortable with it as well as the neuro opth here and neuro here we've seen. they want her over the ON hump and fairly symptom free for the LP - i guess they're looking for abnormal immune activity at that point. her health history goes way back to 2003 when she was 4 she had a virus (viral meningitis in all likelihood) that left her with debilitating headaches. given an mri that showed swelling in her meninges, they put her on steriods which took care of it.

the best dx we got at that point was possible ADEM (accute disseminated encephalomyelitis) but nothing concrete. IF that was ADEM coupled with the current ON then we're almost certian this is MS. however all of the docs aren't sold on the ADEM dx from 2003 but no one can find the MRI....of course, right?!?!?! agh. anyhow, the doc in dallas we're seeing is from hopkins where he was the director of their MS program - he's very much on the forefront of all ms research so i'm happy with him. if only he were here in KC!

[SBryant822]

we are somewhat in the same boat - 12 year old daughter with optic neuritis in right eye, didn't do plasma exchange but were considering it. we believe she had an attic of ON at the end of june but it was treated at a migraine, then she woke up early august with blurry vision in her right eye, pain when looking around, etc. diagnosed w/ON at that time - still looking for a definitive diagnosis of MS but all of the doctors agree this looks at lot like MS. spinal tap and another mri in december to confirm. where are you located?

Sorry I have been away for a bit. I am in CT. My daughter went through a number of health issues 8 years ago which led to a misdiagnosis of encephalitis followed by a diagnosis of ADEM (which we thought was over since things were quiet for so long). They diagnosed her with MS in July due to the past history, mri and spinal results with this attack of ON. She lost the vision in her right eye in July and we are still waiting to see what is going to happen. She has been on copaxone since September.

[SBryant822]

My daughter was just diagnosed a week before last. She also developed optic neuritis. She is being very stoic about it all. Just had her first shot of Rebif, today will be her second shot. I am not sure if she would be willing to chat with your daughter, but I can ask her. I'm happy to talk with you as well. My biggest question is "What's going to happen next?!?!?!"

I would also love to have someone to talk to. I try not to jump at everything, but I am just unsure as to what is caused by the disease and what is not. I don't know anyone else with a child who is going through the same thing - it can definitely be hard.

[SBryant822]

hi there - the person who originally posted this hasn't been back on though i wish she were. we are still in limbo w/our daughter who is 12 getting over a bought with ON from Aug. we follow up in Dec w/a ped. neuro who speciliazes in demyelinating diseases/MS for a spinal tap and MRI of her spine. so, we'll know more then.

Hello, I have been away for a bit. My daughter had her first issue with ON (retrobulbar neuritis) at age 6 and at that time they did not diagnose it as MS. I went to see a specialist at John Hopkins and they believed it was ADEM since that was a one time occurance. She regained full vision and we had 7 years of normalcy until this summer. It is great you have a specialist available who specializes in demylinating diseases - that was out greatest challenge locating the correct professionals who did not find using prednisone and seeing what would happen next as an answer. I will be praying for you and your family.

[SBryant822]

thank you aimee for your response. i have questioned waiting until december and he's really comfortable with it as well as the neuro opth here and neuro here we've seen. they want her over the ON hump and fairly symptom free for the LP - i guess they're looking for abnormal immune activity at that point. her health history goes way back to 2003 when she was 4 she had a virus (viral meningitis in all likelihood) that left her with debilitating headaches. given an mri that showed swelling in her meninges, they put her on steriods which took care of it.

the best dx we got at that point was possible ADEM (accute disseminated encephalomyelitis) but nothing concrete. IF that was ADEM coupled with the current ON then we're almost certian this is MS. however all of the docs aren't sold on the ADEM dx from 2003 but no one can find the MRI....of course, right?!?!?! agh. anyhow, the doc in dallas we're seeing is from hopkins where he was the director of their MS program - he's very much on the forefront of all ms research so i'm happy with him. if only he were here in KC!

We also had a diagnosis of ADEM with ON (retrobulbar neuritis) in 2004. We traveled to John Hopkins and saw a Dr. by the name of Douglas Kerr -they definitely have awesome professionals.