MS or not MS in 11 yr old child

[ku111]

Is it possible?  This has been one of the more crazier times in our lives to say the least.  My son is 11 yrs. old and in November everything changed.  This will be a quick rundown.  He was fine, well, I should start from about a year ago (now that I look back).  He started having these random headaches (migraine symptoms) and when he would lay down, sleep, takes medications, all better by the next day.  Telling us things like "my arm just won't work" or "my leg feels like it's going to give out" on occassion.  We would say, it's ok, maybe you just played that ballgame too hard so lets go.  All was good and then he vomited in November and had a bad headache.  Didn't feel good that day but the next day was fine.  NO FEVER.  Same thing happened the next week.  But, this time he just didn't get better but more tired until we couldn't wake him.  He's got an outgoing personality!  Took him to dr's several times and they said he looks and acts fine.  This was so not true.  I finally got to the point where I said NO NO NO and you will get us help and I don't care what the lab work shows.  This was over several attempts and I finally just lost it because he was deteriorating quickly.  There was nothing ok about him.  But, it was the two weeks over the holidays and either no one was available to help us or whatever.  He finally got to where he couldn't walk well, urinate and was slurring words.  Terrible back pain.  Took him to ER crying and him begging for help.  Admitted us because he had 0 lower reflexes.  Did MRI and spine scan-showed nothing (this would be true but you need to know how to read MRI's correctly).  Hospital said maybe this was a lot in his head and might need Prozac for depression.  I was furious!  They DC'd us when he wasn't walking well, taking forever to urinate.  Next day, thought he was having a stroke.  Scariest drive into the hospital of my life!  I looked at the dr. and said tell me I am not crazy.  He was very quiet and said no there is something wrong.  Finally called in Neurologist (I had requested and was promised for weeks).  Found multiple lesions all over brain and spine-found ones from the first MRI but didn't see them the .  Spinal tap revealed High level of oligo bands.  Admitted for twelve days and had high dose Prednisone IV treatments.  I saw one day of the five that was great.  I haven't seen great since.  He still has urinary problems, blurred vision in one eye (gets worse some days), still can't run or jog.  Sometimes he thinks better than others.  Gets tired easily.  Has shooting pain at random in feet, arms and legs.  Walks better some days than others.  Dx us with ADEM and told us this was a one time event.  When does the one time event end?  It is almost March and we see the neurologist often but he insists this is ADEM (he thinks, he's hopeful).  Repeat MRI had no new lesions but "white matter brain changes".  Really don't know what this means.  Don't have an appointment with dr. that specializes in MS until June.  Dr. said she needs to see him and for us to hang in there and not to burn any bridges with Neuro here until she sees us.  We really like him but I don't think they see this kinda thing very often.  It looks by all the reading I do, we are by far not the only ones left in limbo.  I so want this to be ADEM but I can't have a plan if this won't go away.  

[HVAC]

I am not saying your child has MS but if it were my child and I was worried about MS I would go to one of the Pediatric MS Centers in the country. Until recently MS was thought only to be an adult disease and most Neurologists even MS Specialist have no experience with it and when Doctors have little or no experience with something they often dismiss it. There is one in New York and one in California.

Also compile every record from every Doctor, ER visit, mri cds etc. and keep them with you. I started having Neurological problems at two and because the records were not compiled no one put the pieces together and I was not diagnosed until 46. I even was branded Psychiatric which made it worse to get a diagnosis. All the records are lost and it makes it impossible to get disability. My symptoms were different then your child's but everyone is different. There are many Neurological disorders.

In this medical system you have to have a strong advocate it sounds like you are for your boy.

Alex

[Sumanadevii]

We have a little friend (8 years old) that has ADEM and is still in recovery after a year.  It is possible that is what you are working with.  He does well some days and others are awful.  I would, like you, still would want a second opinion.  I wish you well.

[Lillibby]

I am so sorry for what you are going through.  It is so hard to navigate through the medical maze.  I have no advice, but wanted you to know that people care what is happening to your son and you.

[Lulu54]

My heart aches for you - as moms we have to champion for our kids and your son is so lucky to have you on his side.  It is unusual for a young child to be dx with MS, but it has been found in children as toddlers, so it does happen, so don't let anyone tell you differently.

Be sure to call the MS doctor office and have them put you on their cancellation list, if you haven't done so already.  And ask them if it is ok if you call them once a week to check if anything earlier has opened up.  Be nice about it, but stress that this is a child who's condition continues to deteriorate.

We aren't always developing new lesions when we have MS - it is only during the active phase - hence the relapsing/remitting part of this MiSerable disease.

We have a ton of information in our health pages, written by members of our community.  You can access them through the yellow icon on the upper right side of this page.  While you are waiting and understandably worrying, take this time to learn as much as you can .......... the index is accessible thorugh this link-

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Information-and-Resources-Index/show/22?cid=36


This is a great place to learn more and ask questions - I hope you will stick around and let us help you through this journey.

my best to you and your son,
Lulu