Update-Neuropsychologist/Jordan

[ku111]

Well, went to Neuropsych and had all the testing.  Jordan was concerned that he can't remember things-short term mainly and retain for any length of time.  In a nut shell, he has no brain damage, his spelling is in the 51% range (which we knew that had greatly changed), we need to be positive, Jordan needs to tell himself he is going to get better, we need to encourage him to get better, MS is rare in a child so therefore he doesn't have MS, he needs to stay positive so the electrical shocks he gets all day long will be less and therefore cause less memory problems and we need to not concentrate on dr. appointments and concentrate that this is all good.  Hmmm...Wonder if he has ever been shocked all day long, feet just give out for no reason, can't open a bottle of water and if he would say "everything is ok, just keep being positive and the pain will be less".  I realize being positive is important and we will continue to do so with Jordan but it is what it is.  If Jordan says the things are happening then I think they are.  He has been awsome through all of this.  Anyway, the testing is what they give to 70-80 year old patients with strokes and dementia-per the dr.  Will be talking to MS Specialist in a couple of weeks to ask some questions.  Very disappointed in outcome.  Wanted help for him and explaination.  Didn't get either.  Good to know he doesn't have brain damage.  That's a plus.  Could be worse.  Just glad he is here and we keep him anyway we can have him!

[HVAC]

Rhonda I am glad what I learned growing up could help one parent understand what it is like. It makes what I went through worth it.

Alex

[ku111]

Deb61-We do have a 504 Plan in place.  I was directed by a teacher friend and it was the best thing I have ever done.  It does protect him on bad days but allows him to shine on the good days.  

Alex-I am so sorry you are not feeling well.  I wish so much for you but ultimately your body is going to make decisions.  BUT, your strong mind and passion for life does a lot!  This is a nasty fight but I believe you will give it all you got.  It has met its match with you.  Just know we are all thinking of you and wishing you the best.  I wish I could jump in there and help you fight!  Thanks for always taking the time to give me advice and words of wisdom with Jordan.  You have helped me understand him and I can't thank you enough.  Rhonda

[Deb61]

Word prediction software dagnabit

[Deb61]

Sorry for the typos...I'm not used to the wired prediction software and forget to check it before I post.  

BTW, I'm seeing a neuropsychologist in a few days.  My memory isn't good and have attention deficit disorder.  

Another thing to possibly consider is to look into getting a sleep doctor.  I have a tremendous amount of pain at night and get women up from arm being numb or bladder spasms.  Needless to say I don't get much sleep.  Sleep deprivation really interferes with cognition and adds to the fatigue.  

Deb

[Deb61]

Your child may be eligible for special education services with accommodations that teachers must follow to help him.  Special education is nothing what it used to be.  Some kids that have Other Health Impairment (OHI) need very few accommodations in the regular education classroom other than some tips that the neuropsychologist suggests.  Some kids fall under even less services (504) with almost no stigma(many kids have this service but have some educational accommodations needed for their success.  If you think your child may need these services, there are several routes you can take.  You can contact your school counselor or even the educational diagnostician.  

Special education is nothing like it used to be.  There I'd no where the sigma there used to be.  The students are in the regular classrooms and the  teacher may be in the classroom with the student ,or not depending on what the committee determines is the least amount needed....Sometimes the special education teacher only works as a consultant for the general education teacher.  

More than likely the neuropsychologist will have some very good educational recommendations that should be shared with his teachers.  Mnemonic devices, digital recorders, writing down assignments, graphic organizers, oral testing accommodations, extra time on tests, oral testing, physical accommodations like assistance with now taking,  testing accommodations, are just a few things that could be helpful.  

504 or special education accommodations all can carried through until he reaches 22 in college.  

I know I'm totally jumping the gun...This is just some information in case things get rough for Jordan in school.  He's got some options.  There's many kids that need help that have health issues,, kids with diabetes, attention deficit disorder, dyslexia, cancer, seizure disorders, visual problems, etc that must have accommodations to be successful.  I would say this I'd more the majority than the minority.

Deb

[HVAC]

I totally get that people can't see the struggle. I think when you are used to being sick as child one of the adaptations is you naturally do not show illness like other people. This is something I have carried into adulthood and Doctors have a real hard time reading me. Right now I am so sick with Cancer. My immune system has shut down and I am very sick. My GP looked at me Tuesday, she has not seen me since my cancer diagnosis months ago, and said "You look so good. You look so young and strong. Better than you have looked in years". I looked at her and said That is funny people keep saying that and I am so sick". I told her I feel awful like I am not going to make it" That blood work she did showed I have no immune system.

He is going to have to calmly tell people when he is not fine. This is hard.

Alex

[ku111]

HVAC and Sidesteps

Found an opportunity to have a heart to heart on a pretty good day for him all around.  I think our talk helped a lot.  I explained a lot about his brain having problems processing things on some days but he is young and his brain is trying really hard to find other pathways and it is a work in progress.  He has to give his brain time and patience to get back up to speed or let it find alternative ways.  I talked to him about some days his brain not working as well as others and identifying those days and letting us know so that we can talk it out instead of keeping things bottled up and being confused and I would do my best to help him through those days.  There were some things that brought on this appointment that were troubling and sad to his dad and I.  He says now that he doesn't understand why he was thinking this way and he thinks it was the new medication or his brain not working right.  We talked at length about how very far he has come and all the things he is doing now.  We talked about not looking back and looking forward to the future of whatever it hands us.  He said, "I feel so different than the way I was and I know everything changed for me".  I pointed out how far he has come from not being able to walk, talk and think and look at how fast his body has readjusted.  We also talked about the bad days he has now and the medication is helping with the electrical shocks and weakness.  All in all, it was a good talk.  I know he won't remember all of it (possibly) but maybe we made some headway.  I'll take even a little.  The biggest question for me was when he asked why everyone sees him look ok on the outside when he doesn't feel right on the inside and how he struggles.  All I could think of to say was eventually people will get passed all of that and just see the new Jordan as he is.  I told him the new Jordan was pretty cool and smart too.  We are going to laugh more often.  I am learning to let HIM set his own limitations and not worry so much ( well hide it well anyway-LOL!).  We love him and we will get through all of this.  Learning process for all of us.  Thanks for all of your help!  This was such good advice!  Thank you so very much!  Don't know what I would do without you!

[Sidesteps]

Ku -

You know, I get what they are talking about with keeping positive and reducing stress. It's so very important. I have no idea if you have ever had an episode where your cognitive issue declines purely from stress but I have. It's absolutely devastating. I had this occur in extreme when my 1st husband died...but I have had other episodes. I think they are trying to say that while there is something going on, adding stress will only cause more challenges and will add to the layer's of issues he's already facing.

I am not sure if you are seeing a counselor yourself but in my experience (with my late husband's death) my kids responded to my level of stress. If I wasn't doing well...they weren't. If you aren't seeing a counselor for yourself and not taking care of yourself in this crises... start now. It will help your son in the long run. I am not saying that you aren't taking care of yourself but I KNOW from my past that I am the one person I do neglect when my kids aren't well. I am encouraging you to take breaks, talk to someone that can help you sort through YOUR emotions and learn to manage the stress of this...and sometimes the best action is finding a path through it all.

In my case, I needed to have the bridge to the other side. Hang in there. I know it seems like this is an endless fight but don't lose hope. I was really really bad off a year ago ... right now, I am 20% better in my worst areas and in some cases 90% to 100% better. It just takes time for your body to heal and find a way to connect the dots. Please don't lose faith.

[HVAC]

Let him know his left and right brains just do not talk to each other like some people's do. He is probably smarter than most people because he has to use new neuro pathways and more of his brain. The most important thing I learned was to relax. The more tense I got the harder things were. People always thought I was not trying hard enough and that is the hardest part. Let him know I know how smart he is and I think he is an awesome kid. No one could see what was going on with me and how hard life was. I wish I had had a Mom like you. Mine just did not get it. My parents thought if they hit or yelled at me enough I would some how be normal. It did not work. I was lucky because I did have teachers and adults who did understand how hard things were and that I was smart and sensitive. Also let him know it is okay to be sensitive especially at his age.

Alex

[ku111]

Alex, thank you!  I think you just said what I was unable to explain.  You are so right.  He is finding other ways to think and learn (thank goodness!).  It is difficult for him and frusterating but he does the best he can and continues to find his own ways.  They said there was damage to the brain stem.  I think the hardest thing for others to understand is he looks normal but Jordan knows inside he does not feel the same.  Must be so confusing and being a teenager now isn't helping the situation.  We are trying to concentrate on accepting who he is now and working with that.  I think in time this will become normal for him.  Sad to say but children really do adapt to what is handed to them.  In that aspect, we should be blessed because it is much harder for an adult to adapt to such changes.  Alex, thank you again.  You put things in perspective for me and have given me a new angle of looking at this.  I think I can help him even more.  Thinking of you always and wishing you a good day!

[HVAC]

As a child with MS I had cognitive issues. I had trouble reading and following directions. I had trouble with left and right. I still do. I learned to adjust. No one understood how my double vision made things hard. It si hard when you can't see a child's disability. I also had a Mensa I.Q and no one knew it. I was unfortunately put in the slow class because they did not understand. I hated being talked to really slowly and given unchallenging school work. I learned that I had a different way of thinking than others. I think because of the brain stem lesion. I had to learn tricks to cope. My brain also had to find other pathways. I got through college with honors in spite of it.

The main thing is people's brains work differently from each other. If he ever gets discouraged remind him he is a unique individual. Tests just measure against others not who you are.

Alex

[LisaJF]

What a rocky road you have been on with your son Jordan.

You're doing what a good mother should, listen and react by taking him to the appropriate medical professionals.  Although, you're not getting the answers you need ie: diagnosis and treatment available for whatever is badgering your son, you keep on trucking until you do.  

Yes, it could be worse, but what you're dealing with and what Jordan is dealing with is ENOUGH already.  Don't minimize the trauma, the everyday sludge you have to tread through to get by.

You're doing a great job and Jordan is fortunate to have a mother who is attentive and responsible.

Please let us know how the MS Specialist visit turns out.

Lisa