Intro: Logan, 16 Yr Old Son, With Dx Of Orthostatic Intolerance...long

[rmmikesell]

Good Morning,

I would like to introduce myself and also would like to your request help for our son who might be experiencing symptoms of POTS, but has received the dx of OI. Sorry so long....

My 16 yr old son, Logan, seems to be having a lot of symptoms that might be considered POTS. He has received the dx of OI two weeks ago. He's been through a difficult time getting a diagnosis. Today he has another appointment with his pediatrician to enlist her help to get him either a Poor Man's or Lyndonville Tilt Table Test or a hospital version TTT.

Unfortunately he was sent for a specialist opinion last week in which the nurse seemed to have no clue, whatsoever, about the protocol or proper procedures to do to get a somewhat accurate BP and HR on our son. Thus, the doctor didn't say our son had POTS, but said it's unlikely, basing his dx on the nurse's testing results.

This nurse was ok with the bed's head being tilted upward (so when she left the room, I put it all the way down!), she then asked him to get up after only 5-6 minutes...I timed it. She then asked him questions and talked to him some while she took his BP & HR. She took his vitals 4 times in a row and only waited about 45 seconds, at most, between each reading. She apologized over & over for making Logan do these BPs.

Our son, Logan, was doing his best to cooperate but it showed HR - 56, then after 4-5 minutes HR - 74. At home, with a automatic cuff, we tested him twice. The first time - for 10 minutes. He laid down for 10-11 minutes, with HR of 54. Upon standing, his HR immediately went to 86. After ten minutes of standing completely still, his HR went to 89. He was overheated, nauseous and dizzy.

The second, at home test, was 15 minutes in length. He laid down for 10-11 minutes completely still. He slowly got up to a standing position with his arm at chest level with BP cuff already in place. He held still, not talking, not watching TV, looking straight ahead. He didn't move much at all. His starting HR was 55 and after getting up, his HR was 104. After ten minutes of standing still as possible, his HR was at 109. He was red, sweating, lots nausea, overheated, had very difficult time breathing & kept trying to yawn every 20-30 seconds. Thankfully, he didn't pass out but felt like it.

On his first PMTTT at home, his after ten minutes laying down BP was 105/58, after immediately standing 112/77. After ten minutes of standing, his BP was 109/80. His pulse pressure difference started out at 47 and was down to 29 after just ten minutes. Wonder how low it would have gone after 10 more minutes?

On our 16 yr old's second PMTTT at home the next day, his 10-min lay down BP was 111/57, after immediately standing up BP 105/74. After ten minutes of standing - BP 111/81. After 15 minutes standing, his BP 126/78. His starting pulse pressure was 56 this time, and at the end was 48. Not much changed.

We are having a terrible time getting our doctor to interested or understand since the specialist she recommended was a complete waste of time. My husband, Logan and I are scheduled to meet with our pediatrician in 4 hours to discuss this situation. They are trying to push mental heath meds, or anti-depressants on him. He's not one bit DEPRESSED!!

SYMPTOMS: Our son is active, although very tired. He's fun, friendly, busy, eats like a horse, makes up jokes a lot, is overall a happy, normal guy. He makes very good grades, his working towards his Eagle Scout rank in BS. He worked a part-time job, but with bad tension headaches that get worse as day continues, chest pain, breathing episodes (which he says are happening almost hourly now), severe acid reflux, large pupils, cold hands & feet, not good refreshed sleep, tired all the time, very sore muscles & joints, subluxations frequently, memory fog, likes salt, and lots more really.

This has been getting worse, but started approx Sept 14, 2005. He had lots of chest pains one evening and was very pale, arms hanging down, and slumped over into a corner. He had mono testing three times over a period of 1-1/2 years starting one year prior to Sept 2005. He was having chest pains from then on with breathing episodes on occassion. Was given EKGs, EEGs, X-Rays, bloodwork, and over a period of one year until now, has been told he's fine, just has some acid reflux (which prilosec doesn't work well for), and must have depression. We've avoided putting him on anything at all, because I know for sure, that he's not depressed at all....

Please give any feedback, any suggestions or share input. We would appreciate help in order to help our son. He is miserable and just wants to be helped. He very, very much hopes to be able to play basketball this Fall still. He played through it, barely, last year. He loves the game!

OUR NEEDS:

Suggestions for electrophysiologist/cardiologist in St. Louis, Indianapolis, Chicago area who comes highly recommended because they've performed many, many ADOLESCENT Tilt Table Tests professionally.

Need specialist ideas for 2nd Opinion. Prefer Indy or St. Louis.Thank you for your listening ear, care & conern....

Love & Peace,

Sadie Lady (Logan's Mom)

[Jacquie802]

Hi,

Welcome to the forum! On the main DINET page there is a physician list and it goes by state, so you should definately check that out.

It has taken many of us years to get a diagnoses....It only took me a few months, but I know there are lots on here that have had POTS their whole life and were just diagnosed a few years ago...I am lucky because I live only 30 min. away from Boston where there are lots of teaching schools, etc. However, none of the doctors around my home town even knew what was wrong with me.

About the antidepressants, they actually can HELP with the POTS symptoms. I know many, many people on this board take them for the treatment of POTS!

Maybe you could print out the info from the main DINET page and also have some brochures sent to your doc so they can see that POTS exists!!!!

Goodluck and keep us updated!

Jacquie

[Guest dionna]

i was in the marine corps when i got sick and it took about a year and a half to get diagnosed. i kept on getting referrals to mental health and my officers stepped in an told them i was not depressed and told them what type of marine i was. then i let them give me the mental health tests and i talked with them, twice actually and they finally became content that it wasn't a mental thing for me. i saw a neurologist and a cardiologist. i was hospitalized 3 times. on the final time i was at bethesda's national naval medical center and doctors from there, hopkins, walter reed, and another hospital in the area teamed up to look at my case. finally i had the diagnose of POTS. then i also got referred to NIH and they reconfirmed it. i don't know of any one he can be referred to, but i did want you to know that i hope that he does get a diagnoses soon and perhaps meds can help. i was 18 on active duty with orders to Iraq when i first passed out so i know it is rough. take care and i wish you luck!

dionna

[desiree942]

Sorry to hear about your son. I had a diagnosis of OI and OH for 2 years until I went to see Dr. Grubb, the ANS/POTS/NCS specialist in Toledo, he confirmed, as I suspected, that I had POTS. There is a compensatory increase in HR when your blood pressure drops on standing but the exagerated incease of over 30pts + symptoms is pretty consistent with POTS.

It is not as easy as you would think to get a POTS diagnosis. I was very very frustrated working with local drs. in a MAJOR US city who were clueless and made me feel like I was a nut case...even when I got a diagnosis from Dr. Grubb my local docs were very defensive that what I had was rare and required an expert to diagnose -- NOT.

They give TTT tests in every major hospital but don't seem to be knowlegeable about POTS, especially b/c the text book definition of POTS is HR increase +30 w/out BP drop...but this is not always true, with POTS you CAN have OH.

In reality it didn't matter what they called it b/c the first line meds are all the same, but the meds you may get from a specialist are the SSRIs/SSNRIs -- not for depression but b/c norepinephrine transmission is is key problem for those of us with POTS. I made significant improvement after starting one.

Good luck!

[cmtaylor5]

Hi,

I have POTS and have a 12 year old son who is symptomatic. Many of his symptoms are the same as you are describing with your son. I would advise you to ask your pediatrician to refer you to a pediatric cardiologist. I would check and make sure that the pediatric cardiologist is familiar with POTS.

We were sent to one and he did a very thorough evaluation that included an echocardiogram. I think if there is a hx of subluxations, then you are probably wondering about a dx of EDS and you would also want Marfan's ruled out. My son turned out to have Mitral Valve Prolapse.

Another suggestion I have is checking out the Dyna kids website. (www.dynakids.org).

Although a dx is not easy for many of us to come by, I found that my son's pediatric cardiologist was much more familiar with POTS than any doctors I had seen for myself. There is a developmental form of POTS that occurs in adolescents that I was told is more common than the adult form. Dyna kids should be able to provide you with a list of health professionals for pediatric dysautonomics.

Best of Luck! Don't give up!

Carolyn

[bttrflyamby1981]

Hi there! Welcome!

I have yet to be "dx" with POTS, but that's what they are treating me for. They have put me on antidepressants because of migraines, but they did not work. Just wanted to let you know that they use them for all sorts of things, not just depression. I do know how it would make you feel though. I was a little upset about it at first.

Good luck!

Amber

[jenwclark]

I was diagnosed with depression at age 14 and accepted the diagnosis without question for several years. Of all the many antidepressants they gave me, the ones that helped the most were the SSRIs. Now I know that they were probably helping the POTS symptoms.

Reading your post, I kept thinking about my mother. I was 19 when my symptoms became disabling, and I was too out of it to do much for myself medically. Depression was still the presumed diagnosis, and I was inclined to believe the doctors who said I just needed to try harder. It was my mother who figured out that I was sick, and she took me to doctor after doctor until I got back on my feet enough to take care of myself. Supportive parents make a world of difference to a sick teenager.

It looks like you've got some good suggestions to go on. Good luck, and trust your judgement.

Spike

[Lulu]

welcome to the forum! i'm seconding what others have posted, but wanted to extend my support and sympathy to you....especially to say that your son is lucky to have you on his side, rooting for him! & i also had dozens of incorrect dxs over a period of years! you're not alone in your frustrations, if it is any comfort at all. it must be devastating to watch him go through this and not be able to get him the help he really needs.

i wish you all speed in getting proper care for your son and i wish him good health and bright days! best of luck and good wishes to you and your family!

lulu

[bren62]

My daughter is 18 and has many of the same syptoms that your son has. She has NCS. It has been hard getting a proper diagnosis, in fact her cardiologist interchanges all the terms. I am in the process of finding some one else more knowledgable. She did have a TTT done at a teaching hospital, so it was done properly, and it was a positive test.

The one doctor suggested antidepressants for my daughter as well, but I'm not ready to go there. There are other meds to try first. Plus, the use of antidepressants should be done with caution in teenagers. Too many times doctors want to put patients on psych meds when they don't know what else to do.

Along with a TTT you might want to have a king of hearts monitor, to monitor his heart for a month. Any time he has an episode of chest pain, palpitations, near synope or syncope you press the button and it records 45 sec before and 30 sec after pressing it. If he's having periods of tachycardia, it would show up on it.

Good Luck

[rmmikesell]

Thank you for sharing & caring! Your suggestions & helpful ideas were truly a blessing to me. I appreciate your candor and your sharing your own experiences about getting or not getting a dx for POTS.

I am very relieved to have had a tremendously excellent pediatrician appointment on Friday last week. My husband, Logan, and I went together to talk with her about our concerns. She was very responsive and has agreed that Logan must get a very professional, tailored-to-adolescent, hospital TTT as soon as possible. She has him scheduled for two MRI this afternoon, one for his brain & one for his very, very painful neck.

Logan's pediatrician is also sending him to the gastro specialist, and orthopedic and is considering a 2nd opinion after seeing the MRI & TTT test results. Logan has been in terrible pain all weekend due to a nodule/lump in his upper neck (near T-1 or T-2). His neck might be severely subluxed and his chiro doesn't think it holds anymore. The MRI is also to dx or rule out chiari, but based on the symptoms list, I really don't think it fits. Hope not anyway!

We do not know where all this will lead, but it finally feels like we got on the right train heading in the right direction. Who knows if it'll get derailed, but we've settled into the sleeping car for a long journey! This is quite the trip, but not by any means, an adventure.

Please keep Logan in your prayers....a also pray I stay strong for him!

Love & Peace,

Sadie Lady

[morgan617]

Wish you the best with Logan. Please remember all the autonomic names fall under the pots diagnoses.

Most of the specialists call just about everything pots, as it's the closest they can agree on. So OI would fall under that umbrella. it's just that the symptoms can vary quite a lot.

I hope they can get some answers from the TTT and MRI. it sounds almost like he may have some EDS issues, but i am certainly no expert on that. There are many here with it, so you may get some info from them...best of luck...nothing worse than having a sick child is there? I have one too, just different stuff, and you just have to become a witch to get stuff done for them....

[the_dancer_grl]

Hey, your son sounds like me. I'm going through much the same thing trying to get diagnosed and have been for quite awhile. Just let him know he's not alone in the teenage dysaut. world and if y'all want to chat feel free.