Newly diagnosed 17 year old

[Deballa1968]

Hi. My 17 year old son was recently diagnosed with MS. I am confused, scared and cannot wrap my brain around this. He is young, strong and healthy. I know several people with MS, but they all are middle aged women. Is there anyone on here that is 17....or the parent of a 17 year old diagnosed with it. Any help with be greatly appreciated. We have 3 weeks before we go back to Children's Hospital of Philadelphia to follow up and discuss medication. Thank you in advance.

[PeninaD]

Our daughter was just barely 18 when diagnosed, but she was 14 or 15 when it probably began.  She's a senior in high school now.

[Lulu54]

hi, deballa.  you are living the nightmare of all parents, having a child with a chronic disease.  PeninaD and Alex can both share their personal experiences.  

The treacherous part of having MS is lulling ourselves into believeing it isn't really there - relapsing remitting MS means the symptoms can come and go, but unfortunately the underlying disease remains.

I am glad to read you are investigating some of the other possible answers while you wait for this next appointment.  i wish your son and you nothing but improved health, Laura

[Deballa1968]

Thank you for all the information. My son has no symptoms other than left side facial paralysis. I guess that is why it's making it very hard to accept this diagnosis. How old is your daughter?

[Deballa1968]

Thank you for the feedback. As you can imagine I'm learning as much as I can about MS. He doesn't seem to fit the profile...and aside from the bells palsy symptoms he is feeling back to himself. I think the steroids caused him to feel worse. He doesn't have any other symptoms. I took him to see a Lyme specialist who thinks it may be Lyme....and we go back to Childrens Hospital next week for a "diagnosis" and suggestions for what is ahead. How do I put him on meds when he feels great and his facial paralysis is subsiding?

[PeninaD]

OK, sorry about posting an email address...if anyone is interested in the information, message me, or look up pediatric or parent in MS Connections from NMSS, Kimberly Koch seems to be their point person for "Children and Teens with MS, a Network for Families.

[PeninaD]

Wow, just recieved a thick packet of information on Pediatric NS from NMSS

If you contact Kimberly.***@****, she can get you connected and informed.

[PeninaD]

Curious how things are going? Have you or anyone in your family come back to read this thread?

[PeninaD]

I just came across a bug resource page geared toward pediatric MS.
http://www.pediatricmscenter.org/parents/links

What I found very exciting was a FREE summer program for kids with MS. Application must be in by April 28, so not a lot of time.
http://www.pediatricmscenter.org/camp

[LoveMyBostons]

I know you're worried about your son but please know that he can have a "normal" life. It's actually good that he was diagnosed early so he can start taking a DMD now rather than later.

I was diagnosed at the age of 28. Looking back though, I had been experiencing some of the symptoms since late high school / college.  

You would never know that I have MS unless I told you. I have a master's degree and a full-time job, I do volunteer work and lead a full, happy life.

Sure, sometimes I struggle but who doesn't?

Your son is stronger than you probably realize.

[HVAC]

My MS started when I was 2. I was hospitalized and sent to the Mayo Cling in 1965. I always had double vision which made sports and just navigating in crowds and stairs very hard. I hated school. Learning to drive was a nightmare.

I had cognitive issues. I could not follow directions on tests or homework assignments. They just did not make sense. My teachers thought I was lazy. The way I got talked to in front of the other students. I could not read until college. Test like SATS were horrible. I memeorized everything I heard in school.

No one knew my problem was MS until 2007 when I was diagnosed. I went to 20 or more Neurologist. They were certain something was wrong with my brain. No one knew what it was.

In school I was either considered slow or lazy. My parent did not tell me about the Neurological problems. They just pushed me to be normal. I felt bad about myself because it was impossible for me to do better.

When no one could find a physical diagnosis I was locked in Mental Hospitals. I was mistreated badly and grew to hate doctors and nurses.

My parents died thinking of me as their loser child. The adult who does not add up to much. They did not see how hard I tried.

I did graduate College *** laude and got into Graduate school. I failed out of Graduate School. I always had menial jobs and could not keep them for long. I could not understand how I could be smart and do so poorly at simple things. Then they mysterious spasms I was always in pain.

I was not good at sports because of the eye sight, and balance issues. I could never get left and right orientation.

I wish I had understood why I was different. I wish I had understood why my brain was different. Now that I know I have MS I am very happy.

I knew I had weird reflexes and such I just stopped thinking about them. My Primary Care Doctor did a Neurological Exam on me and found the MS in 2007. She sent me to a Neurologist.

The MS Specialist all agree I have had MS since at least 2 years old. Something to do with my eye sight something that can't change after two. I was also sent to Duke in first grade for a Neurological evaluation.

I wish my parents had known I was trying the best I could and had an illness. I wish I could have understood why I had trouble in school and work situations. Mostly I wish I had not been institutionalized.


Alex

[PeninaD]

We are still crossing fingers and toes that she will finish HS this year and graduate with her twin sister.

Please feel free to write back.. we were both paramedics, so have ability to try and help decipher
if we can help you out.

[PeninaD]

A resource we used to coerce her high school to provide services, accommodations and a modified shortened day schedule (as well as a coveted elevator key!) was the NMSS book, Students with MS in the Academic Setting.

It looks that this page was recently improved, but this is about all I found:
http://www.nationalmssociety.org/Resources-Support/Resources-for-Specific-Populations/Pediatric-MS-Support-Network

Specific to PA, the only state that has it, you might be able to get your son's doctor's to file the BrainSteps application  based on Acquired Brain/Other Medical, to get services in school for him, such as OT/PT, accommodative tools.  Look up you local school Intermediate Unit, or check:  http://www.pamedicalhome.org/resources/education/item/1320-brainsteps

[PeninaD]

YES!
You are not alone, although I can tell you feel it.
We are a rare bunch.  

So, after so many things going on since the age of 15, including bowel issues, major depression, uro-gynecology surgery, our daughter began falling, dropping things, slept about 18-20 hours a day in the months before she turned 18. Less than two months after 18, she got her diagnosis.

We are in PA, but go to Mount Sinai's Corrine Goldsmith Dickinson MS Center in NYC because of insurance issues.  If CHOP is working for you, excellent, but if you feel you need a specialist MS for pediatric, Stonybrook in Long Island, NY is one of 6 specialtyPediatric MS centers in the United States.

I can tell you that the school Intermediate Unit for Northampton/Monroe/Pike Counties have never dealt with a school age child with MS until our daughter was first thought to have A.D.E.M before the doctors realized it was much more within 6 weeks.  I cannot find another child for her to talk to, no other parent until you popped up.

[maxthecat43]

Welcome.   Kyle said it very well.  The first year after diagnosis will be the toughest emotionally.   It's something that must be dealt with obviously,  but it's a slow moving disease.

I hope you stick around.   This is a supportive and caring community.

Tammy

[kwarendorf]

Hi Debella - Welcome to our group.

I can only imagine what is swimming through your head at the moment. I hope we can ease some of your fears.

MS is a serious disease. It does not mean that your son is destined to spend the rest of his life in a wheelchair. It is also not a guaranty of a life without any issues. The truth for most of us lies somewhere in the middle.

I'm a 54 year old man and was diagnosed with Secondary Progressive MS (SPMS) 2 1/2 years ago. When I was diagnosed we determined that I'd had MS for 20 years. If you were to see me on the street you would never imagine that I have MS. I went 20 years without treatment and I'm OK.

Your son will benefit from the availability of 10 treatment options. These treatments (Disease Modifying Drugs aka DMD's) are designed to keep MS from advancing. He is young, and presumably otherwise healthy. There is no reason to suspect the worst :-)

I'm sure you have many questions. Ask Away!

Kyle