Update on my son's new peds visit

[melly4]

Okay, I promised myself I wouldn't doctor bash if we had a bad experience at the new pediatrician today. I took my 13-yr-old son in so that he could continue to be "worked up" for his symptoms where we left off when we moved. And it wasn't all bad, so I can doc bash a little. He first saw a 4-year med student, who was amazingly bright and honed in on orthostatic intolerance issues as soon as she talked to us, saw the result of his event monitor, and that he was negative for pheo. What also helped was that it was one of those rare moments when my son was actually terribly symptomatic at the time of the office visit. His BP was high, he was tachy, and having heart palps that the med student could hear on auscultation. Without my suggesting anything, she was telling me that this was definitely some kind of orthostatic intolerance and we should get him to a cardiologist right away. It was then that I shared with her that I was experiencing the same, only without the occasional high BP spikes. It all sounded great.

Well, then the resident comes in to put her two-cents' worth in. She said that all of these symptoms could be "normal" for some people. Yeah, sure. Then she said that, with my history, it probably was OI and to send him to a cardio doc. Fine. Then, the resident argued with me about why I didn't give him Motrin for pain. My answer was because I wanted it cleared with a cardiologist because of his BP spikes. She was afraid of the whole Reye's Syndrome thing and the baby aspirin. Like I would give my son aspirin if he had symptoms of a viral illness!! Of course not!! But I'm not going to give him Motrin when he's having one of his 170/110 BP episodes and watch him have a stroke!! Then the resident said that my son's cardiologist and my cardiologist would probably treat us with pseudophedrine. Sure, with tachycardia?! And my son's occasional high BP?! This dame's got her autonomic dysfunctions confused. We don't typically have bradycardia. My BP is awfully low, but I'm so med-sensitive that sudafed would most probably kill me. It's like OTC epinephrine. What was interesting was watching the reaction of the very bright med student to what the resident was saying. Even my son noticed that she was wringing her hands as if she wanted to choke the resident!!

Anyhow, the "real docs" were consulted and set Dillon up for his cardio visit. So, we're both off to see our respective cardio docs at the end of the month. I hope we get good ones who don't confuse the different dysautonomias and their treatments. But, at least, we're not being looked at like we're crazy and/or blown off anymore. That is a major improvement!!

Thanks for letting me vent and share,

Melly

[JaneEyre9]

Wow Melly, Sudafed. That's awful! That's exactly what i was on 24/7 before i crashed big time in April.

Your experience reminds me of when i was offered coffee by a nurse after one of my fainting spells. Great stuff. Well, i'm glad that you had that med student there to affirm you, but sorry you were told that your symptoms (and your son's) are "normal" and that you need to take a tachy-inducer. It really makes you question if they know anything about OI. Hope your experience with the cardiologist is better...

Kristen

[faithinspires]

Melly,

ooooy! These doctors. I took my 18 yr old with NCS/POTS this morning. First her doc looks at me and says gee u were sick last time you were here...duh.

Then my daughter explains her symptoms worsening lately and needing a new cardio that her insurance covers. She told her she fainted in the shower this morning. She did say she will look for a cardio dr to refer her to, but then added "I am also referring you to a pyschiatrist, your symptoms and anxiety go hand and hand blah blah....

Wish there were doctors who understood more. My daughter said thats ok mom, its not her fault she just doesn't know.

Good Luck to you both with the cardios!

[Poohbear]

Well, I'm glad that overall you had a good experience and that you will both be going to a cardiologist.

Yikes! There is no way I could take pseudephedrine.

Last year when I was at Mayo in MN I ended up in the hospital and one of the residents was new on my case one day, didn't read my history thoroughly enough. By this point I was so out of it and wasn't really able to "fend for myself" so he gave me Claritin D. I kid you not....within 10 minutes of popping that pill my BP bottomed out and my heart rate went to nearly 185. They all came running in shocked that I reacted that quick (happens with me frequently) and they had to push a bunch of IV fluids really fast to try to flush the drug and dilute it. I ended up in the hospital an extra day because of it. Later the resident said, "Well what type of decongestant do you take at home?" I said, "I DON'T". I can't take ANY decongestants.

[melly4]

Mind boggling, isn't it? Some docs just insist on giving "activators" to folks who are med-sensitive and can't tolerate stimulants. I've never been able to take a decongestant, either. You would think most doctors could figure out tachy + stimulant= cardiac arrest!!

Thanks for the encouragement. It makes me feel not alone that others have been through this, but at the same time, I feel bad for you all having to deal with dumb docs.

Faithinspires, did you tell your daughter's stupid doc that her anxiety would probably go away if she quit fainting or feeling faint all of the time?! We've had all of the anxiety crud thrown at us from time to time, too. But I was fortunate enough to have a psych tell my doc that I most definitely did not have an anxiety disorder and that the anxiety was coming from the tachy, syncope, and heart palps. I hope your daughter has better luck with the new cardio doc.

I'm so happy that we're seeing cardiologists soon. But if they start throwing sudafed at us, I'm going to run screaming to the nearest dysautonomia clinic!!

Melly

[Sunfish]

melly -

while i'm sorry about the frustrating aspects of your appt, all in all i'm glad that you got the referrals you needed; most important is that the clueless doc isn't the one that will be actually prescribing/treating/evaluating your son. but still, obviously frustrating none the less it's great to hear that the student was as on top of things as she was....gives some hope for the future!

re: sudafed, i'm not trying to defend the doc, but personally i am able to take small doses of non-drowsy sudafed and i know some others on the forum do too....so just like many other things, there aren't many (if any) absolutes in the world of dysautonomia. it might have something to do with the mechanism (i.e. hyperadernergic vs. neuropathic, etc. ) or it may just be an individualized thing. who knows...

faithinspires-

again, not trying to play the "defend the doc" game here, and it doesn't sound like this was the purpose behind your daughter's doc referring to the psych, but some of us have found such a referral helpful in the long run, so you never know. often the psych is able to truly evaluate & document that there aren't psych issues going on that cause symptoms. or that if there are any they are a result of medical problems, etc, etc. and not so much for a psychiatrist, but a psychologist or other counselor can be a great aid in simply venting about the difficulties of dealing with living with a chronic illness. i have been told by pychs during evaluations that i am psychologically the picture of health which can be a good tool in light of other docs who question. so...while it sounds like the doc wasn't intending the psych route to be used in this way, maybe it can work out as such...

good luck to you both (and to your son & daughter)...

:-)melissa

[melly4]

Melissa,

Thanks for your input. I definitely cannot take sudafed, from past experiences: tachy much worse!! But I understand what you're saying, as far as it can be helpful for some forms of dysautonomia. It's just that I'm so darned med-sensitive. I've had a lot of problems with all kinds of meds. But that's just me.

And you are correct in encouraging Faithinspires' daughter to follow through with her referral to the psych doc. That was the best thing I ever did, because he was able to dismiss the whole anxiety disorder dx my GP at the time was giving me. In addition, he was able to diagnose and document the med sensitivity and prescribe klonopin to help me deal with the freakish dysautonomia symptoms while I was going through the 4-month wait to see an internist. Also, psychs have come a long way since the whole Freudian couch thing!! They are really very wise when it comes to medications.

I know I probably sounded like I was anti-psychiatrist, but that's not what I meant. I'm just very defensive when primary care docs want to try to diagnose everything that can't be cured with an antibiotic or surgery as "mental illness"!!

Melly

[Sunfish]

melly-

i DEFINITELY understand the frustration of being blown off my a doc who doesn't understand, and thus tries to dismiss things as being psych-related. so...no need to apologize! i don't think you sounded anti-psych, just anti-psych when referred for the wrong reasons....and i'm TOTALLY with you on that!

and yep, i'm weird when it comes to the sudafed b/c i tend to be pretty sensitive to meds too, have had some wacky reactions, etc....it just happens for me that i can handle that one. just goes to show how different we all are & how confusing this all is!

melissa

[goldicedance]

Many, if not all of us, have been in your shoes. While in cardiac care, I had one doctor tell me that I should take midodrine 24/7. That's a good way to get rid of a problematic patient. That same doc, who was in my internist's practice, also told me that he did not know about POTS, he didn't care to know, and I should find a doc who did. I told my internist and she was flabbergasted. I will never ever see such a "compassionate" doctor again.

How did the doc's rule out a pheo based on a holter monitor? I was under the impression that there are very sophistocated blood tests and urine collection tests necessary to rule that out.

Also, I have found that high blood pressure can very much be part of the POTS syndrome.

Have they ruled out Wolfes (something or other) sydrome that causes tachycardia in children?

Finally, I know this sounds strange but my trusted cardiologist--a pots expert--said starting the day with a good cup of strong caffeinated coffee can sometimes be helpful for lst thing in the morning OI.

Hope you get some good news and advice for proceeding! Don't let the "know-it-alls" pull the wool over your eyes! You are your best advocate!