Getting closer to diagnosis

[ku111]

Neuorologist called and stated MS Specialist is thinking Jordan can almost be diagnosed officially.  She has told him he has MS.  Until we hear this from her, we will continue to wait.  If it is, where can I read a medication choices or are there choices?  Are there different meds for children than adults?  Should we wait for meds as long as possible?  A part of his forearm and part of his leg is now numb and tingly.  New symptoms.  I realize we have been searching for answers but does it sound bad that now I am afraid of the answer?  I am afraid of what this will mean for the future.  I want help for him but I am afraid of what he will go through.  I think the answers are coming soon.  I know we have been waiting but I don't think I can help but cry when we are told.  I feel weak and can't be for him.  Just want knowledge to make right decision.

[anon07072023]

I can understand your fear.  Of course no one would want their child to be  diagnosed with MS or any other disease.  You have to remember that the closer he gets to diagnosis, the closer he gets to treatment options.    

I'm not really for sure what the protocol is for MS disease modifying drugs for children with MS.  I'm sure there's a lot of info out there on the internet.  

I hope you and Jordan find answers soon.
-Kelly

[sllowe]

Hi

I'm glad to see Jordan is that much closer to a dx. The DMDs should be started right away to maximize the potential of them working.

I'll pull you some additional links to disease modifiers so you can begin familiarizing yourself with them. The traditionals are, Copaxone (a peptide), Rebif (interferon), Avonex, and Betaseron. Betaseron having the longest record. Each of these are injectable and have been around to treat MS the longest. There is a new oral, and that is Gilenya.

Your specialist may have a suggestion based on experiences with children. Also if you do some internet searches. Use key works juvenile MS and treatment. That will help narrow your searches.

Hang in there - we're here for you. Never forget MSers have options now, and someday there will be individualized treatment eliminating trial and error where treatment is concerned based on biomarkers to identity who will be more responsive to individual treatment.

Hang in there and stay positive!
(((Hugs)))
shell

[ku111]

Thx SarahL2491!  I appreciate the information.  I also appreciate your kind words.  They mean so much!

[SarahL2491]

go to the MS website, there is a section on DMD drugs that explain them.
glad you are getting closer to a Dx even thou we don't want Jordan to have MS.

[ku111]

Thank you Lulu.  You are right, I am sure he probably does know I cry.  I try not to but when he has an episode that just seems to go on and on I do cry.  Sometimes the pain is so bad.  Ug!  It absolutely breaks my heart and I feel helpless every time.  I do have to remain positive.  I guess one day at a time.  I will start researching and reading about medications.  Thank you.  Have a great day!

[Lulu54]

Most everyone who has searched for a name for their problems feels despair and fear over hearing MS.  Hearing this about your child can only be that much worse.

There are many ongoing studies looking at treatment for pediatric MS and the area has growing interest.  Jordan and others like him should benefit from these closer looks at early onset MS.

Jordan probably already knows you have shed tears over this, and you don't have to pretend for his sake that everything is alright, but you are correect that you have to be positive.

Good luck with this next step - you know where we are and we'll be waiting for an update.

hugs,
L