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Back from the Mayo

Oct 09, 2011 - 6 comments

We got back from the Mayo Friday night close to midnight.  It was a good week, Cody was having a good week. New results, new plan...

1.  Tilt Table Test came back showing some orthostatic intolerance, not POTS.  I'm somewhat ambivalent about those results though.  It was only a 10 minute tilt test and he only stopped taking midodrine and doxepin the day before.  I know the midodrine doesn't matter, but he was still on the fludrocortisone.  When we had all the testing done in Cleveland he had to be off the medications for 3 days and the test was 35 minutes.  I'm not sure if these meds would sku the test since they are for his POTS symptoms. Plus a 10 minute test I've read is too short.

2. He had an exercise test, and of course he is very deconditioned.  The 3 week  pain recovery program will help with this.  While he was able to do the test, his heart took way too long to get back to it's normal resting heart rate.

3.  Iron in his blood was fine, but his reserves were depleted.  That can cause nausea and exhaustion.  So he will be on iron pills.

4. If someone is sick for a very long time, their brain gets stuck in sick mode and only believes it is managing a sick body.  So, to break the cycle, he can't stay in bed.  He needs to get up and work through the sickness. The longer he stays in bed, the sicker he gets, vicious circle.  The motto is the Nike motto-Just do it.   So I printed out the Nike logo and posted it around the house.

They think he is actually in recovery for the autonomic nervous system.  All the tests showed the autonomic nerves were capable of working fine.  So, exercise, regular sleep, regular get out of bed schedule should put him back on the road to 'functionality'.  It's not that he is going to be cured, but he should be feeling better.

This does make some sense, in that, when his symptoms kept gradually increasing, adding one at a time, he really doesn't have any of those symptoms any more, except the nausea and tiredness.  And the tiredness is because he is so out of shape.

I am hopeful that the pain rehab will be the thing that jump starts the rest of the recovery.

We are also stopping some meds/supplements.   The doctor said he doesn't have POTS anymore, but is still POTSY symptom wise so the meds aren't necessary.

We finished with testing early one day and headed to the Mall of America.  Cody walked the whole thing from top to bottom and is still doing fine.  More evidence that when we travel, he has a good week, so breaking his home routine will be helpful.

Yesterday, he rode his bike around a bit and today he went for a couple of walks.  I think I will have to hold him back from over doing it so he doesn't crash. He is supposed to gradually get back into exercising.  He is ready to resume his normal life!


Christy



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Avatar universal
by enzymelover, Oct 09, 2011
Well!  This sounds a lot more hopeful! Good job, Cody!  Christy, didn't you recently post that you wanted a doc to tell you Cody does not have POTS?  So, right or wrong, that wish came true!
Perhaps something is causing healing of his nervous system finally. What meds/supplements is he stopping? I hope Cody is really getting stronger. More conditioning means more stamina.
I hope he can feel it, when he is pushing himself to do too much, and will take it easy when he must. The push/crash problem is such a difficult thing to regulate.

I am making Casey get up and walk several times a day, just a few steps at a time. He still needs to squat after only ten or twelve steps, same as nearly three years ago. But he does have more energy and strength while sitting now. I'm going to ask the endo to increase his Florinef to .10 at his next appointment. The 0.05 dose (once a day) is really not helping at all.
His growth hormone should get moved up to .8 daily next month. Still not 1 mg yet, but were getting closer. I will ask about the Midodrine again too. I hope he can get started on it soon.
No gastritis or dysphagia for a couple of weeks. I don't know why this is improving, but I'm not complaining!

I am so happy for you and Cody! How is Brittany doing?

Avatar universal
by CHRISTYDRAKE, Oct 10, 2011
Cody will stop taking fludrocortisone, midodrine, CoQ10 and L-Carnitine, but add iron.  He stopped the fludrocortisone Saturday and he said he hasn't been dizzy.  I'm just glad to be reducing the number of pills he takes a day.  The doctor said to keep him on the Cymbalta and Doxepin, he will need these to help him through the PT and recovery.

Brittany is up and down.  She is complaining of nausea, stomach aches and tiredness.  Her heart rate and bp are low.  When we are done with Cody at the Mayo, I think I will schedule her to see Dr Kinsella to see what might be going on with her.  She is able to go to school and work through it all though, thank goodness.

Christy

Avatar universal
by enzymelover, Oct 10, 2011
I wonder if Brittany is low in iron. Does she take an iron supplement?
What type of doctor did Cody see at Mayo, for the testing? Cardiologist? Did they say why they stopped the TTT after only ten minutes?
I am so thrilled to hear that Cody is recovering! I am now motivated to push Casey to do more for himself, and push his doctor to prescribe more helpful treatments.

Avatar universal
by CHRISTYDRAKE, Oct 10, 2011
Brittany doesn't take iron, good idea to have checked too.

Cody saw a diagnostician, he has a youtube video about POTS/Chronic Fatigue Syndrome.  I don't know why he was only scheduled for a 10 minute tilt test.  They also only recorded his hr/bp at the beginning, the 5 minute mark and the 10 minute mark.  In Cleveland, we had a minute by minute print out so you could see it fluctuating.  So I am concerned about the results from this test.

They also took 11 viles of blood, did a 24 hour urine test, chest xray, and ecg.  

Cody is already up for the day and drinking his fluids!  Yesterday he kept asking me to get him a water or gatorade.  Finally drinking what he is supposed to drink.

1267372 tn?1317831280
by tdavidson, Oct 10, 2011
That is so great to hear Chris!  I am glad he is feeling better and wanting to get up and do stuff.  It is hard to watch them overdo it because of the paybacks/setbacks that can occur.  Boy do we know that!  

The 10 minute TTT does sound odd...even some of Whitney's initial doctors did the "poor mans" TTT for way longer than that and her real one was 35 minutes.  It's hard to know what to do but heck if he's ready to get back up and do stuff, that is awesome! Quality of life is so important!

So is he going to do PT in StL?  
Theresa


Avatar universal
by CHRISTYDRAKE, Oct 10, 2011
PT will be at St Mary's in Rochester, part of the Mayo.  The doctor also doesn't want him water jogging/ recumbant bike.  He wants him fighting the gravity in his exercise.

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