Just an Update-Jordan

[ku111]

Went to Neurologist at KU yesterday.  Told her that Mayo had ruled out MS but thought he may have POTS.  She laughed and said this is definately not POTS.  She says she wished they had called the neuro's working with him before coming to such a conclusion and clearly didn't read over his records closely enough.  She also thought telling us 15-18 more months before we could get an actual appointment was disturbing.  She says that she suspects Jordan had Transverse Demylination or ADEM (which is what the other neuro suspected).  She explained she is watching him because sometimes these conditions go on to be MS.  She says that she is watching for new and different symptoms or worsening symptoms of the damage he already has.  She said she will be watching him for atleast 4 years to see if he loses any more strength in the right side and/or the foot drop becomes worse on the left along with whatever other symptoms that arise.  She did explain she had a child age 9 that at 24 yrs old then went on to develop MS but it usually presents itself before that time.  She was very honest and forthcoming in her comments.  Increased his Neurotin again and said this is a wait and see game.  Told Jordan to do whatever he feels like doing because it would not change the outcome.  She also said a dx in a child is difficult and does not want to jump to a conclusion at age 12.  She also does not want to put him on medications too soon if he can get by pretty well on the Neurotin.  I have heard they like to wait to age 16.

Hum...  Well, that's all I know.  Not much more than before but a little.  I guess it is a wait and see thing.  I am learning to be very patient (which was not one of my better traits before all of this LOL!).  We are encouraging Jordan to do what he feels like doing and enjoying what he does.

That's it.  I am wishing everyone a wonderful day!  I think I will continue to stick around and keep learning from everyone.  Thanks!  

[heartfelt77]

Hi,  It sounds like you found a good doctor.  You and jordon will get through this together and I'm sure he feels blessed to have parents that care so much and love him so much they will stop at nothing to find answers..  keep up the positive attitude thats what will get u through along with the fact that your staying strong for him.   He see that so he will do the same because he feels secure.    Isn't it amazing how life can change in the matter of seconds. But, its truly the way we deal with it that makes all the difference in the world.

Take care.....  Hugs
   Misty

[ku111]

You are so right Lulu!  He joined the school bowling team!  Had his first tournment yesterday and threw a couple of gutter balls but so did everyone else!  He had fun!  Bought him a bowling ball (The "Ball of Fire"LOL) and should be ready on friday for his tournment next week.  He said he did what we talked about and just concentrated on throwing the ball instead of those darn shooting pains and tingling.  I am just glad his body allowed him to play.  The dr. laughed when we called this "his new normal".  Life is good!  He wants to try golf in the Spring!

[Lulu54]

Rhonda,
I hope you will stick around and learn more.  Aswell as keep us up to date on Jordan.

There is nothing in what Jordan is encountering right now that can't be worked through to allow him to go out and recapture bits of his childhood.  This means you are going to have to encourage and facilitate some friendships that get him mingling with his peers.  It will take a lot of energy from you, and stepping back and letting him struggle at times, but it will be worth it when you see him happy. I know that is hard to do when you have a "sick" child, so you might have to work on not thinking of him as ill.  I've been there with a frighteningly ill child, so I understand the mindset and wanting to always protect.  

I am so happy to hear this doctor acknowledge what he is experiencing and I hope she stays in practice a very long time and can continues to follow Jordan's care.

hugs to you both,
Lulu

[ku111]

Thanks to all!  I just don't know what will happen.  He is Epstein Barr+ and few other things that increase his chance but I can't change it.  There is a lot I have learned here!  I know I can't fix it nor change it.  If it's coming, it will come in time.  Might as well let him have fun when he can on his better days and we will deal with everything else as it comes.  I feel in my heart I already know the answer but I appreciate the Neuro taking her time in Dx.  For now, we are working on being more independent and letting him fix and take care of things on his own.  Standing up for himself and his illness.  I want him to be as strong as possible for the future-whatever that may hold.  

I know this may sound strange but I think I will stick around here and just keep learning as much as I can.  Never hurts to learn about something, right?

So thankful for all of you!  Hope all had a good day.  Rhonda

[JaneK1975]

Yep. That doctor sounds pretty awesome. I'm sorry to hear that you didn't get some solid answers, but so very happy to hear that you found a doc that wants to watch him and was willing to take the time to fully explain the reasons behind her recommendations!

Jordan is a lucky kid to have such a caring and intelligent mother. Please do stick around.

Best wishes,
Jane

[jenphilly]

I agree with everyone else...  a doctor that cares and is open makes such a huge difference especially when dealing with something that is not an easy answer.

Did your doctor suggest any diet changes?  I have mentioned this before, but it seems to common for certain foods to trigger symptoms in people with a comprimised CNS or immune system.   For me, its gluten.  But others have noted dairy and processed sugars.  

Just a thought to keep a log of what Jordan eats and see if a pattern develops.  That's how I realized gluten was an issue.  And for 40years it was not a problem, just seems out of the blue.

And huge kudos to you for being a strong mom and letting Jordan be a kid...  so many parents get so over protective, it's stressful for the kid.  

Good luck to everyone in your family and best wishes the next few years show Jordan just being healthy and happy!

Hugs,

Jen

[LisaJF]

When it is your child (not yourself) that is suffering there is nothing in this world a parent would want is to take it all away.

You are a conscientious mother who is dutiful in ensuring your child has the best of care.  He is so lucky.

And now to hear that you landed a doctor who is "almost" as caring as the mother makes me smile.

I wish you the best to you and your son and keep us posted.

Lisa

[SarahL2491]

I agree with Kyle, a doctor who cares is indeed priceless.......
Hope things turn for the best for both you and Jordan

Sarah

[kwarendorf]

If nothing else, it sounds like you found a doctor who cares. That's priceless!

Kyle

[sllowe]

Hi Ku,

This sounds like such a worthy visit :)
I hope it does not go on into anything else, and that his body begins to heal from the damage, and you both are able to move forward with some normalcy :)

I'm a true believer that things can definitely get better and I wish this for the both of you too (((hugs to you)))) -shell