High blood pressure?

[LA1989]

Hi everyone! A quick introduction-I am the mom of a 15yo who was recently diagnosed with autonomic dysfunction. At the time of the diagnosis, it seemed to me that it was just an excuse that no one could figure out what was wrong with him. Most of his symptoms came on quickly and his condition rapidly deteriorated. I know some of the docs thought I was making some of the stuff up, but we are blessed with a pc, who although she's just a pa, is willing to give me referrals to pretty much whatever I ask for.
The problem is, I don't know everything to ask! We have seen two cardiologists--the first called me one day and said my son's ejection fracture was only 45% and he didn't want him playing ball till we figured it out, maybe we'd need a beta blocker, etc. and he put a Holter on him. After the Holter, which recorded two instances of a rapid heart rate (165+) at rest he backtracked on the previous statements and said we should just let him do whatever "he feels like doing" and to follow up with our neurology appt (which was 3 months away). Rapidly, my son's symptoms increased and it's not even a question of "how he feels" anymore. There's no way he could play ball--he can't walk to the car without being completely out of breath and exhausted. The second cardiologist (pediatric) did another echo but no tilt-test and diagnosed him with AD, saying he's seen this a lot in kids his age. He gave us fludrocortisone and told us to keep him on a high salt diet with lots of fluids and come back in 8 weeks and he should be doing better.
That was a lot of background information-sorry. My question today is about blood pressure. Usually his bp is in the normal to low range, but today it has been high (141/91, etc.). He is VERY shaky today and has had more visual disturbances the last couple of days (glaring, blurry, etc.that go along with his terrible headaches). I've read so much about low blood pressure with this condition but is it also normal to have high blood pressure?
Thanks in advance--I've already learned so much from reading what you all have written about your experiences.

[Heiferly]

I think I may have heard at some point that there no longer is an autonomic specialist at Hopkins, but DO NOT quote me on that.  It's a bit of a vague recollection at the moment.  If you do find that to be the case, there is a specialist at Union Memorial Hospital (I know--compared to Johns Hopkins--seems like a definite step down, but this specialist does have several publications in peer reviewed journals).  Oh, I should say, if you're not familiar with Union Memorial Hospital, it's about a block away from Johns Hopkins' undergraduate (Homewood) campus.  I only lived in Baltimore as a student at Hopkins, so I'm not really clear on what locals would be familiar with ... MY world was pretty centered on the Homewood campus.  

Let me know if you want me to dig up the name of the specialist at Union Memorial at any point.  It's probably best to PM me in case I miss a post on this thread; you can do that by hovering your cursor over my username (in blue) and clicking on "send message" in the drop-down menu box that subsequently appears.  

I hope you get some answers and relief for your son soon!
-Heiferly.

[LivingInHope]

You're welcome.  See PM about left atrial enlargement.

[LA1989]

Hi Christy-I was hoping you would weigh in here. I have read many of your posts going all the way back to last year when this first started up for your son. We even looked at the sweat-test pics you posted--eery!!
I am so worried about the long-term prognosis. When we left the second cardiologist's office he said he would expect to see him back to his old self in 8 weeks and the more I read about this the less likely that seems?
My son is very like yours, I think. He is very athletic--played varsity baseball, is a Life Scout, very involved at church. And he currently has no life. He can't stand up for more than 15 or 20 minutes without shaking so badly he almost drops whatever he's holding. His face is white as a sheet. He can't even sit up for long without getting out of breath and completely exhausted. He hasn't fainted in a couple of weeks--I think it's because he's learned what he feels like before he's going to and he just stays down. The one good thing about this is that he was already homeschooled before all this started so we can just slow things down a bit. Right now he can only manage one subject, if that, a day.
I believe there is a specialist in AD at Johns Hopkins--I was thinking about emailing him. i don't know if the one we are getting an appt for has any experience with it. We have military insurance so we have to travel the referral route to get where we want.
Thanks again!

[LA1989]

Thank you for all that information! I have just gotten off the phone with our pc and she is going to call Johns Hopkins (we are in the DC-Baltimore area) to see if they can push his pediatric neurology appt up a bit.
He did have an MRI with contrast back when this all started (it started with vertigo and falling down about 8 weeks ago...) and has had his thyroid levels checked. He has had many blood tests (ANA, lyme, CR-P, many others) that have all come back "normal." Well, the lyme inititally came back as positive for the antibodies but the full panel came back negative. He did 3 weeks of doxycycline just in case for that.
He has had two echos. The second, pediatric, cardiologist disagreed with the first about the EF. Neither of them saw any problems with valves, fluid, anything. He had an EKG in the ER that showed his left atrium enlarged, but the second cardiologist said "it is what it is," meaning, I guess, that's just what his heart is like? None of the other 3 EKGs came back abnormal in any way.
Thanks for all the recommendations on tests. I will definitely follow up on them.

[CHRISTYDRAKE]

Sorry for your son-I also have a 15 year old son dealing with this.  He was diagnosed informally last June, and had the Tilt Table in October.  He was very athletic and had low resting heart rate-60- from being in shape, with an average bp.  Now his resting heart rate is low 80's and his blood pressure is not bad lying down, but everything is high when he is up and about.

He was also originally diagnosed by a cardiologist who gave us fludrocortisone, said that should fix it and sent us on our way.  Needless to say, the fludrocortisone helped with the dizziness but not the other symptoms-which were many.  Since, after switching to a specialist in this, many of his symptoms have gotten better-still trying to figure out the nausea.  He has been to school in a year and a half.

So, high blood pressure is also a possiblity.  If the fludrocortisone doesn't cut it, I would look at finding an autonomic dysfunction specialist.  There are many medications to try to help with the numerous symptoms that can arise.

Christy

[LivingInHope]

With postural orthostatic tachycardia syndrome one can have both low and high blood pressure.  Mine can spike at times with standing.  I do think that was remiss on the part of the cardiologist not to order the tilt table test to try to better determine what kind of autonomic dysfunction your son may have, since that is what they decided to diagnose him with.  With the echocardiogram, with that kind of ejection fraction, did they see any defects in any of his valves or anything?

Also, with the visual disturbance and terrible headache, if these are new to him, they should do a brain scan (preferrably an MRI with and without contrast).  Also, you may want to get him a field of vision test at an opthamologist.  If it is his peripheral vision that is blurred, they may want to do a special pituitary dynamic MRI scan.  And has he had his thyroid function tested?  Because with hyperthyroidism, that can cause rapid heart rate as well.  And have they checked his iron and ferritin (iron stores) levels?  Iron deficiency can also cause rapid heart rate and thus shortness of breath, fatigue, light headedness and headache.

In addition, with the high blood pressure episode and headache, they should consider ruling out pheochromoctyoma, a rare tumor that emits catecholamines in high levels (when active) and can cause rapid heart rate, headache, etc..  The best test out there for this type of tumor usually found on one of the adrenal glands, is a fasting blood test called plasma free metanephrines.   If they order this, you'll want to get it done after he's been having an episode of high blood pressure & high pulse rate and hopefully, he won't have taken any tylenol in the last I think it's 72 hours, because that can interfere with assaying the levels.