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I have been banging my head on the floor, the wall, and just about everything else since Bennett and I went to Duke. The visit went smoothly, and the doctor was very efficient. She did not spend a whole lot of time with us, but she had reviewed Bennett's labs and pointed out various things about his coloring that indicated to her that Bennett had Addison's Disease. In fact, she told us she was 99% sure.
She redrew the labs, did a cortisol challenge test...and everything came back normal. We were astounded. When I finally got in touch with her again to actually speak to her, I asked her what explanation she might have for the gross discrepancy between the labs drawn by Dr. Krusz last summer in Dallas and those just drawn at Duke. She seems to think that Bennett received a dose of Decadron (which Dr. K did give him for his nausea) prior to the initial labs being drawn. If that is the case, the Decadron would suppress all the body's own cortisol as well as some other hormones.
I do have a call in to Dr. K to find out if Bennett received a dose of steroids before his baseline cortisol was drawn. In the meantime, though, the doctor at Duke suggested we find another dysautonomia specialist...not an easy thing to do. No one at Duke specializes in dysautonomia, so we're looking at 4 different doctors in 4 different locations. All this in addition to trying to treat this d----d migraine that Bennett has now had continuously for 5 years.
I also looked at a forum at the Mayo Clinic in Jacksonville (which is where one of the dysautonomia specialists is) where a patient with chronic persistent daily headache had posted. This patient had been diagnosed at Johns Hopkins and told that 80% of patients with this diagnosis never got relief of their headache. Dr. K said he thought that this might actually be Bennett's diagnosis because he doesn't respond at at all to any of the triptan medications. Talk about feeling devastated! I just logged off, turned off the computer, and sat staring at the blank screen.
So, friends, any words of encouragement or, better yet, enlightenment? It is clear Bennett is also going to miss next semester of college. If we don't find a way to either decrease (we've stopped thinking eliminate) his headache or make him feel better so he can cope with it, his life has come to a grinding halt...at the ripe old age of 18. I sure didn't want him to have an endocrine problem, but I was hoping for some kind of answer.
Thanks for holding my metaphorical hand while I vented!
P.S. Jamie, we stayed at the Durham Hilton, and it was very nice and very convenient. Thanks for the advice!
Metaphorical hand? Nuh uh! I've got a metaphorical arm draped over your shoulder wrapping you up in a gigantic metaphorical hug!
I so wish I had some kind of enlightenment to offer you. If I was allowed to gift just one person with any and all answers today I'd gift it to Bennett in a heartbeat. I've been through the hassle of flunking one cortisol test only to pass the followup. I know what it's like to hope to flunk it just to finally have some answer or confirmation. You should be relieved it's not that, but you're too frustrated for the relief to sink in. We could have a t-shirt bonfire.
I know that 80% sounds like a huge and disheartening number as far as the dysautonomia issue goes, but 20% is still solidly in the double digits. If Bennett does indeed have this, he could land there. One in five do. There's no reason he can't be the one. If that ends up being the diagnosis, you know we all here will be rooting our hearts and every other cells in our collective goop out for Bennett. Double-digit percentage positive outcomes are nothing to sneeze at. They're a reasonable shot.
I just wish this whole process would shake out a lot faster for you all. It needs to zip along instead of trudge, dagnabbit!
Hang in there.
Thank you, Droolie...I needed the "metaphorical" hug !
And, just to let you know, I am lighting a fire in the fire pit for the T-shirt burning.....!
I don't even know what to say here, other than you have my support and ear whenever you need it.
Something will turn around, it has too, for Bennett's sake as well as your own.
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Good deal. Keep in mind that metaphorical hugs are infinitely and automatically renewable. And they're FREE!
More huggs over here. I have my second follor up with my endo, if after this set of labs come back with low cortisol levles he will formaly diagnose my with an auto immune disease. Its not addisons the problem is with my pituitary.
The point of me telling you this in two fold. ! even with my cortisol levles being ballenced by medication it has not affected my migraines at all, we were all hopefull it would, and 2nd I compleatly understand feeling like you just with there was a reasion.
I agree with Droolie 1 in 5 odds are not great but there is a shot, I am thinking positive and realy praying you get good news. You are an amazing Mother and a blessing to your family. Stay strong there are lots of us here wishing good things for you and your family.
Ditto what Cris and Droolie say - We're all wishing good things for Bennett, you and your whole family. There has to be an answer out there somewhere! This is a rather off the wall thought, but has Bennett ever been tested for a B-12 deficiency?
I wish I knew what to say...
Actually... Thinking on it for a minute, I do have things to say. Hang with me as I go though this short story.
I'm going through other medical issues currently. Had labs drawn at two major hospitals, with shockingly different results, having massive implications for my life ongoing... I wound up at NYU dermatology, where I'm heading next week for a recheck. Labs are just as good as the person running the test.
I've had other friends with false positives/false negatives on other things.
What makes me wonder about the lab results was that the doctor was so sure about a dx that she'd dare to say it out loud... that's not too common, IMHO. (You find it in the records, lol) Also, the dose of decadron may have affected something.
Is it possible to get another set of labs done? If Dr K's were so definitive before (or after?) anything was given, and hers were also affected the results)- perhaps an independent re-do (possibly with your pediatrician's orders?) would settle the question. I just can't process the fact that such vast results would come back so differently--- that is-- and both be right...
We're all human. Labs are, by definition, staffed by humans. Humans, having good days, bad days, taking utmost care, etc.
I personally failed a pituitary test (growth hormone), and I need to have it redone for the insurance to do anything about it. Right now, I'm in the middle of other issues, but this whole experience that you've gone through has convinced me that there's no other way but to find out the truth one way or another.
Which leads me back to why I wound up at NYU Derm. The truth was something I found when the test was done correctly, and with multiple methods. The "truth" that was given to me here was nothing but trying to match a predetermined dx to a test result. I'm not saying that this is common. (It better not be in that clinic ) but it was not right. Only by reading my records did I catch this, by the way.
(Oh, I could write a book)
The good thing about finding a diagnosis- no matter what it is... is that you can deal with it. Pain management, etc, new treatments...
I'm always here should you need to vent, talk, whatever. How is Bennett handling all of this? Many hugs to him, and I hope he has other wonderful people in his life that he can share his feelings with...
(p.s.)I'm glad that the one thing I was able to help with went well. Glad your stay was nice and comfortable!
Thank you, all of you, for your kind words of encouragement. Just to quickly answer a few of your questions/comments:
Nancy, thank you so much for your friendship. You have been so supportive ever since I joined the forum. I do recall you have a friend whose son has dysautonomia, so you have probably heard a lot of this before. I am so grateful for your kindness.
Cris, I am sorry the cortisol replacement hasn't helped your headache at all. Bennett and I weren't actually expecting the headache to improve with treatment of any endocrine issues he might have, but that he would feel better otherwise, and perhaps be better equipped to deal with the headache. Besides which, I really do believe that, even though replacing or correcting hormone issues might not stop the headache, it will be difficult to stop the headache without accomplishing that. I hope your water fast goes well!
MJ, I think I do recall that Bennett was checked for B12 issues. I am missing a whole notebook of labs ( can't imagine where it has gotten to), and I have requested copies again from Case Western, where most of his original labs were done. Dr. K did not check a B12 defficiency. BUT, I did give Bennett a B12 shot once just as an experiment (the advantages of being a nurse!), and there was no change whatsoever.
I am not too worked up over the vitamin deficiency angle because I took him to a very good nutritionist about 18 months ago for over 6 months, and Bennett got every supplement known to man during that time (to a tune of about $300/month), with no change at all in his symptoms. Interestingly, the nutritionist did feel Bennett had adrenal exhaustion, which would produce the lab results we got with Dr. K last summer.
Jamie, now you have me worried about YOU! But to address your very valid points...
I was surprised that the doctor at Duke didn't suggest redrawing the labs to verify the results. She seemed very certain hers were correct. When I talked with her, she even said she had been discussing Bennett with a colleague that day, because she was so sure he had Addison's and then discovered he didn't. She seems absolutely sure that there was a Decadron infusion prior to the Dallas labs.
I guess what puzzles me is that I think Dr. K would know better than to give a corticosteroid and then draw cortisol, testosterone, and progesterone levels. But when I looked back at my own notes for Bennett's visit with him, I did find that I wrote that Bennett got Decadron 2mg the first day we were there. The cortisol level was checked the next day. So I guess, even though I haven't talked with Dr. K yet, that the doctor at Duke is correct. All of Bennett's symptoms seem to be due to dysautonomia.
So, it looks like our next step will be to try to get into a research study at Vanderbilt, or else just to get a referral to their outpatient autonomic clinic. The study is preferable because the work up is more in depth and it is FREE. So that's what I am working on now.
Bennett was happy he didn't have Addison's disease. He does not discuss his illness much, because he says he is sick of talking about it. His best friend from age 6, who has been the best friend anyone could ever pray to have, took Bennett camping this weekend. So at least Bennett is out of his room for a couple of days, with some friends his own age. I am SO thankful for that.
Sorry for the LONG post...I just wanted to be sure you all knew I had read everything and that I am thankful to all of you for your words of wisdom and encouragement. I am always eager to read what you say, and I always consider what you suggest, because lots of heads are sure better than one...even if those heads ache from time to time (or all the time)!
It is pretty rare that I don't have much to say, but this time, I'm out!!
I am sending all the cyber hugs, help and prayers your way - and of course to Bennett too!
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I'm so glad that Bennett got to spend time with a good friend... VERY psychologically healthy for him--- and probably for you, lol.
Please forgive me, I've been traveling (flying and getting rerouted for 10 hrs now, and am brain fried)- I wanted to respond though. And to thank you.
You put something out there the other night- to the point that I called my parents to see if the same thing might have happened with me... I was greatly intrigued by the fact that you did write down what was given to Bennett before the labs were taken in Dallas...and you have a record of it... I remember that I did the stim test on the third or 4th day there, and they had to get my pain and nausea under control before that could happen. My mom strongly pushed for the stim test after it was mentioned... I wasn't sure it was the right time for some reason. I do remember that.
But what I don't remember is if I was given steroids before- during that week. I guess I'll find out this week, as I'm heading up to NYC to see my dermatologist, and staying with my parents, and can look over the piles of my medical records they have from taking care of the financial end of the treatment for me.
No need to worry about me. The testing done at a certain hospital 9 miles from duke was a clinic in how not to go about a blood draw, testing, and a doctor with an ego that couldn't stand to be wrong. Everything came back beautifully at NYU, and the tests were run multiple ways to knock out any doubt.
I DO have allergic contact dermatitis. Not anything more serious... Of course, my head is getting in the act and making it hard for any of the "more gentle" treatments to be used in treating it--that are VERY rarely used, but with my history of sensitivity to meds, we went that way.
However it's been 3 months since dx, and the gentle stuff( IE- Salicylic acid compound. (MOH city.) and a couple more compounded things, but same result. I'm ready to bite the bullet and just go for what a less well versed person would do. I'm tired of my fingers tingling, or being painful and tripping all of my pain receptors.
I really hope you can get into the Vandy study,,, sounds like an ideal thing- How often do you get a BETTER workup for free, right?! But it's good to hear that you've looked into the next steps, and have something to think about.
Keep us posted, ok?
Thank you for letting me know that your condition isn't serious...I feel better. Although I am sure it is miserable, at least it isn't indicative of something systemic like lupus!
And I am very glad that what I said about the Decadron infusion sparked some thoughts in your own situation. With the nausea you were having, I would be very surprised if you hadn't gotten Decadron prior to the stim test, because Decadron is used for nausea control. It sure worked to help Bennett...headache never changed, but the nausea did improve, and has remained better since our visit.
Let me know what you find out after going through your records. It would be worth rechecking those labs, too, if you find that you did have the Decadron first. Then you would have a reasonable baseline from which to work.
I am going to finish Bennett's application to Vandy this week. He isn't too happy about it...one more doctor, one more trip, but I just think ALL of his disorders need to be addressed if the headache is ever going to improve at all.
By the way, I did look again at the criteria for chronic daily headache, and Bennett does not fit the criteria...he has too MANY symptoms. Dr. Sacco in Charlotte said by the AHS criteria, he does have chronic migraine, so I guess I am going to stick with that diagnosis. I don't know that the prognosis is any better, but at least I don't know that it's only 20% improvement!!
Keep in touch while in NY, okay! Good luck with your skin treatment!
you mentioned that I should keep in touch while in NY- I wish i had gotten to post before today.
Things went from crawling along with an allergy that wasn't responsive to treatment to now new dx's, a violent reaction to meds, and more diagnoses, some of which I'd been suspecting for years.
I'm still in the processing stage, and not sure I want to write much now. I'm not sure of what to think, or what I believe, or a whole bunch of things. (could this sound more vague?)
The good news is that i'm not allergic to chlorine, though- we tested for that amongst other things- patch test round two. Since it's in our water year round, we would have had to either find some pricey filtration system, or moved to another part of the triangle (Durham or Raleigh.)
I'm back on a med that failed for Migraine prevention for one of the two new dx's. Wouldn't it be funny if it decided to work now?
The internet access here is not the greatest,,, so, if i disappear for a few more days, know that i'm ok, and thinking about y'all, but can't connect!
Jamie, I hate that you are having such an awful time. It is bad enough to have to deal with migraines, but when that is compounded by other diagnoses it makes life really challenging.
When you're ready to share, feel free to unload. And you can always get my private email from Teri.
Thinking of you!
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