POTS of NCS

[lucy189]

My 16 year old son just recently saw a new cardiologist. We have been struggling with getting a diagnosis and proper treatment for him for 4 months.  He is 16 and was training very hard to get ready for his upcoming basketball season,  He started having some bizarre symptoms so I sought help.  He was exhausted all the time -falling asleep on the couch before dinner, hard to rouse, blurred vision, lightheadedness, hard to do homework (said he felt "less smart", had trouble with words - finding the right one).  He started to feel lightheaded all the time, so we went to see both his pediatrician and ped neurologist (he has one as he has severe migraines, associated with exercise).  Blood work was done and basic neurologiic evaluations.  Nothing turned up so they called it an intractable migraine variant. I asked to see a cardiologist as this seemed to be from increased exercise and issues with that.  That doctor told him to double or triple his fluid intake and he was cleared for all activities.  So two weeks later, after being lightheaded during exercise and during the day, especially on first rising in the morning, he tried out for varsity basketball and came close to fainting (near syncope).  He had tunnel vision, graying or whiting out and was wobbly.  So, off the the ER, lots of cardio test - carotid ultrasound, xray, echocardiogram, treadmill stress test (where his heart rate and bp went way up and up and up).  All normal.  So the docs sent him to a migraine specialist.  She sent him back to cardiology and said he was orthostatic and that needed to be address and that this was not migraine.  New cardiologist appt seemed to go well.  During his check in they checked his vitals, and did the bp from rising to sitting to standing, except the nurse did it out of order - sitting, laying, standing.  She asked him if he felt like his heart was racing when he stood - he replied that it felt that way all the time.  The doc explained that the racing heart was the cause of the fatigue.  She called this an autonomic nervous system dysfunction and advised him to drink lots of gatorade and increase his salt - we had already been doing this for almost 2 months after the first cardio appt.  So I thought she was talking about POTS as the symptoms seemed to make sense.  Then last night on the phone she told me vasovagal.  His heart rate does not drop, and there are no triggers like blood, stress, etc.  Especially not first thing in the morning.  I think I want to try to get him into a dysautonomia specialist -  I just thought I would put this out there and ask for anyone's ideas/input.  I am so frustrated and just want my son to get back to school more consistently - he has missed about 6 weeks all together and had to drop many classes - will probably have to repeat this year.  And he is so limited.

Thanks in advance for any help you can give

[lucy189]

Diane,

His pediatrician ran a blood test for exposure to lyme early on - negative. Can lyme be present with a negative blood test? Trying to get in to see a ANS specialist - waiting on him to agree to see my son, since he normally only sees patients that are over 21. Waiting to have some cortisol testing done to rule out adrenal gland issues.

[diane18944]

have your son checked out by a "good" lyme disease specialist. have the dr. check for all co-infections as well. good luck.

[lucy189]

Thanks for the post in response to my post.  When you  mentioned the anxiety or depression - that is what all docs except my son's psychologist are saying.  The ped neurologist mentioned the "emotional" aspect of all of this... He also pulled my son aside and asked him about drug use - AGAIN!  This happened repeatedly in November and December, but then they gave up on that idea. It sends me the message that they do not think this is real and that since he is a 16 yo boy, he must be doing drugs, therefore is not worth their time to seriously think about what this is. And phew, now that he is having some good days (usually followed by horrible ones!) then maybe he is on the mend, so they do not have to put any more thoughts or effort into.  My own rheumatologist is actually being more helpful than all the others combined together.  I might see if she would be willing to see him, just to make sure we have not missed something.  But I am going to push for referral to the local ANS doc and then go from there. I am trying to get him into a research study with Dr. Stewart in NYC, but am not ruling out traveling elsewhere.  I agree that we have to be vocal and more demanding for the sake of our kids or else these docs are content to let them languish. It is almost as if since they cannot really figure it out, then it must be anxiety or depression or drugs - then label it that and ignore it. I know this is outside the box, but why did they become doctors in the first place.  For as common as this stuff is, why can most docs not figure it out?  We had a specialist neurologist from a famous teaching hospital tell him to "just sleep less - get up and get going!"  I should have invited her to come to my house and try to rouse him.  Granted this was not an ANS specialist, but she is still a neurologist!

[lucy189]

Thanks for the reply/post.  Another parent told me about Dr. Stewart and I am trying to get my son into one of his studies. We live in northern Vermont so NYC is closer than Cleveland.  I have had his records sent there and am working on getting the readings for bp and hr to qualify him.  I guess he needs a 30 bpm increase from laying to standing for 3 minutes and then at 10 minutes. Most other readings that were done earlier did not follow this time system. So far I have only been able to get a 26 beat increase - hard to get to a nurse or doc to do this often - am going to have the school nurse help (she is his 504 meidcal case manager). I am also meeting with his special ed case manager about cognitive testing this week.  I am also trying to get copies of his records - everyone says that I have this right, but it is like pulling teeth. I have only received a copy of his last ophthalmology exam.  He had this done as when he first started having horrible symptoms he had blurred vision, eyes crossing, spots, sparklies, tunnel vision and graying out.  This is one area where his symptoms have greatly improved, but then again he is not doing much to bring this on.

Thanks for the suggestions and kind words!

[CHRISTYDRAKE]

My son's bp goes up and down, day by day, hour by hour.  If they are going to send you to Cleveland Clinic, they have an autonomic lab there.  Also, Case Western University Hospital in Cleveland has an autonomic lab, that is where we took my son.  

At Case Western University Hospital, they have a husband/wife doctor team that specializes in autonomic dysfucntion- Dr Thomas and Dr Gisela Chelimsky.  He is a neurologist and she is a gastroenterologist.    We always got to see both of them since my son has GI issues related to his POTS.  

I would pressure your doctor for the referral.  In the beginning, when this all started with my son, I let the doctor dictate to me and wasn't very vocal.  I've found that I needed to take a more vocal role in my sons care or nothing would have gotten done if I left it to the doctors.  They kept wanting to label it anxiety or depression.

Christy

[Sharingme2]

Hi Lucy,

I don't have an answer for you but I have 2 things I wanted to say.  One is that your son is so lucky to have a mother like you!  It is amazing that you found this forum and have been looking for only 4 months.  I know 4 months seems like a long time, but most people go years without the right diagnosis.  I started with symptoms when I was 11 and now I am 42 and am only now getting the proper diagnosis!  So kudos to you for being so vigilant to get your son the proper diagnosis and treatment asap!!

Secondly, I don't know where you live but there is a pediatric/adolescent autonomic specialist close to where I live.  His name is Julian Stewart, MD and he works in Westchester NY.  He is a researcher and clinician.  I called his office to try to see him myself when they told me he doesn't see anyone over the age of 20.  You can google him and learn about him and read some of his articles.  I need to find an autonomic specialist near me in Rockland County NY who treats adults and have not found one yet.

Best of luck to you and your son. Btw, I heard that some adolescents do grow out of this, so let's hope he is one of them!

xoxo
Shari

[lucy189]

We had an appt this past week with the ped neurologist.  My son's bp was elevated again - 144/80. It seems to fluctuate a lot, but the docs don't seem to notice or care.  About 2 weeks ago it was 127/88, and the next day was 132/68.  At this week's appt, I had the nurse take Orthostatic hypotension readings (laying for 10 min, then standing for 3 and then at 10) hr went from 76 to 88 to 100, bp went from 140/70 to 132/86 to 146/86.  At another neuro appt about a month ago it was (bp and hr) laying 134/63 and 84, sitting 124/62 and 72, standing 118/64 and 84.

Is this consistent with dysautonomia?  The last pediatric cardiologist said vasovagal, but his heart rate does not seem to match up to this as it does not drop.  The ped neurologist we saw this week was very vague and wants us to "ride this out" for another 3 months to see if there is improvement.  I asked about referral to the ANS specialist and he said he wanted to "sleep on that and think about it"  In the meantime he wanted to refer us to a pricey educational consulting testing firm for the cognitive issues (reading problems, word find issues, increased stuttering...).  He mentioned the Cleveland Clinic and that we could go there, "if we felt it was necessary".  I have not been able to talk to our nurse case manager as she is out of town so I do not really know our insurance options. I know they will not cover the cognitive testing so I think I am going to try to do that through our school and have an appt with his 504 case manager for that.

Any thoughts on all of this?

Thanks- Lucy

[lucy189]

Christy,

Thanks for the information. He is already on a medical 504 due to the frequency and severity of his migraines.  He had missed about 6 days of school in the beginning of this year and our school nurse set him up with a plan - to allow time to make up work.  We will adjust/modify this plan with input from the doctor.

I am waiting to hear back from his pediatric neurologist - I want him to get in and see a ANS specialist and perhaps our current doc can get an appt for him - we only have two in our area.

Lucy

[CHRISTYDRAKE]

Welcome to the forum. My son will be 16 in a couple of weeks and has POTS.  Seeing an autonomic specialist is a very good idea.

Next, you need to get your son a 504 plan and possibly Homebound teaching.  You can contact your son's school counselor to help you with all of the help they can offer your son, which will also entail paperwork filled out by the doctor.  My son also takes 2 on line classes that our school district has opted to pay for besides his homebound teaching.

Christy