Back from follow up in Cleveland

[CHRISTYDRAKE]

We are back from Cleveland for my son's follow up appt.  Of course he was having a good day, so he looked good and his heart rate and bp were pretty normal(even though at home in the evenings they are high).   So we are decreasing his fludrocortisone from .1 mg to .05mg to see if his numbers lower.  We'll see how that goes, since he was on .05 mg before and he was still dizzy, but at .1mg his dizzy is much less frequent.

We are upping the doses on  2 of his medications, since he isn't close to being maxed out and since the doxepin has helped with some of the symptoms, maybe a higher dosage will be more helpful.  We are adding a 3rd dose of the erythrocin(sp) to see if that helps with the gastroparesis.

They have also added CoQ10 and L-carnitine to the list of supplements for him to take.  

The weather in Cleveland was great, in the upper 80's and everyone was complaining how hot it was.  When we left St Louis the temperature was 103(without the heat index).  My son wisely commented it was all in perspective.  If someone from the desert came to St Louis, they probably would think it was comfortable weather.

Hopefully all this has some impact on him and maybe he can get back to school.

[LaLa4]

Thank you guys for all the info!! I'm actually excited to go up there... that sounds so sad that I'm excited to go to the dr.! But I know most of us relate to just wanting to find answers already.  The Cleveland Clinic seems like my last hope.
I did have a valsalva and QSART at Mayo in Jacksonville and they were normal.
At Cleveland I am scheduled for a blood volume test, stystemic hemodynamic test in supine and head-up positions and a heart rate variability test.  Also a norepinephrine level test since the one time I had it tested was with routine blood testing and I showed a slightly elevated level in a sitting position.  The norep test I think might help prove that I have the hyperadrenergic variation of POTS.  Any experience any of the above?

[Heiferly]

Do you know if Valsalva is on your schedule too?  If I remember correctly, that's done in the same room as the heart rate variability testing ... it was a pretty quick and easy test.  Not sure if it's something that's warranted for any of us or only depending on whether we have certain symptoms or positives on certain other tests?  It might be something to double-check if you don't see it on your schedule of tests (you can call the lab directly to see if you're schedule for it, or you can call Dr. Fouad's secretary).

I'm guessing they'll probably decide whether or not to do a QSART and/or other tests based on the results of the ones you mentioned above.  I know that on the day I went, they tentatively scheduled me for a bit of everything, but only planned on actually following through with two of the tests if those two went a certain way.  If they went another way, they would go ahead and follow through on the remainder of the tests rather than canceling them (which is what ended up happening).  So, yeah, you may find that you end up doing more (or less) once they get results from the stuff you're scheduled for first.  I think they're pretty flexible that way.

Like Christy said, I think the biggest thing is probably to bring notes with you on things you want to remember to ask/say and anything you think might help the doc (her suggestion of former med list is an excellent one).  I also went on a mission before hand to get the most complete version of my medical records possible (not of my whole life, hehe, just of the stuff relevant to my dysauto) to take with me.  More on that here:

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Medical-Records--Test-Results--and-Charts/show/1044052

Also, there are two search boxes on our MedHelp pages; the one at the very top of the page says in light gray inside "Search conditions, symptoms, and treatments" and there's a smaller one in the right sidebar within our community forum that says in light gray inside "Search this Community."  If you type a search query into the smaller sidebar search, you can search solely within the Dysautonomia Forum, rather than MedHelp 'at large,' so-to-speak.  If you search for "Cleveland Clinic" you can read through older threads where we've discussed it before.  


A Quick Reminder On Browsing Old Threads Found Through Search:

Just please be aware of the dates on these threads and that outdated threads are essentially "dead;" they're fine for browsing and reading to learn more, but it isn't very helpful to try to post and discuss within these threads because some of the involved users may no longer be on the forum, some users may have resolved the issues being discussed by now, etc.  "Dead threads" are no longer relevant and if you'd like to discuss something you find in one, it's preferable to copy and paste the URL (e.g., http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfuction/Blah-Blah/show/1234567) of the thread for reference if need be, but to go ahead and start a new thread to continue the discussion yourself.

[CHRISTYDRAKE]

Actually, my son's doctors are at Case Western University Hospital in Cleveland.  I took a notebook with me filled with every question I wanted to ask, notes about what his symptoms have been, what his bp/hr were that I had logged.  I also take a list of every medication he has ever taken for this, doses, and why he no longer takes that medication.  It is easier for them to look at the list, in case they want to change medications, they can see what has already been tried at what dosage.

We didn't go about town and see the sights this time, but on one of our last visits we went to the house that they filmed "A Christmas Story".  It was pretty cool, had our pictures taken by the leg lamp in the window.

I hope your trip goes well and you get answers you need.
Christy

[LaLa4]

I'm headed to the Cleveland Clinic in October for hemodynamic/blood volume testing and heart rate variability testing and a quick before and after visit with Dr. Fouad... I'm glad to hear you had a good experience there.  Do you have any suggestions or advice on how to make the most of my time there, anything specific to do/see/ask?  I just know I'm only there for 1 1/2 days so I don't want to regret not doing something or missing out on something useful that I didn't know about! If that makes any sense....

[CHRISTYDRAKE]

The upped dosages seem to be helping, along with the new supplements.  My son returned to school last week, for the first time in 1.5 years.  He is only attending 4 hours, but that is a huge step.

He is still very nauseas first thing in the morning, but it seems to be subsiding earlier than it used to.  I hope it isn't short lived, in the past the medications would seem to help for awhile then stop.

We are keeping our fingers crossed.
Christy

[Heiferly]

How are the dosage changes and new supplements going?  

As an Ohioan, I feel I should speak up in defense of my people:  of COURSE the upper 80s is hot!!  A temperature of 103 is positively INSANE, but that doesn't make 88 seem any less hot to us!  It just makes YOU seem crazy for living in a blazing inferno!  :-p  In all seriousness, I once took a roadtrip vacation across the South in August, and I admire the tenacity of you Southerners.  I could not do it.

Your son is likely right in that it's all in your perspective.  Whenever someone from the Southwest moves to Ohio, it's funny to us having to acquaint them with what we think are common sense items like a car scraper and lock de-icer.  (Oh, what I wouldn't give for a bit of snow right now.  I'm so done with the heat!)

[tonyad]

   Hey there :)   Yes..Isn't that usually how it happens...When you finally get in to the doctors, either you or the child is feeling a bit better?  Weird Huh?

   I am glad that your appt went well and hope that the med adjustments will work
for him.

take Care,
~Tonya

[Bromley]

I drove there myself a few years ago from Indianapolis.  I must say, I had a beautiful fall day for it.  I am glad that it was a positive experience for you.