Who Manages Your Care?

[rmlyonsfamily]

Now that Kayleigh is "stable" and doing well on her meds and nutrition schedule, it leaves me wondering who to call when. Her POTS/NCS/PAF doctor is 2 hours away at Duke Medical Center. For little things that come up (i.e. this weekend she had a funny spell) when I feel like she needs just a check, do I take her to the family doctor or do I call her doctor at Duke? Her doctor at Duke is almost impossible to get in if it's an immediate thing - they typically don't have an opening for at least a week or two.

If you're Dysautonomia doc is a few hours away, who do you go to for the little things?

[kayjay]

I have a great Gen. InternistI see every 2-3 months and check with him before I do anything. I am his only POTS patient. If you are near a great hospital find the best doctor there you can that will work with you. My doc helped me get diagnosed and sorta oversees everything... like when I should go see a cardio. and what to do when I fell and broke my nose. he is an hour away but always gets back to me by email. I think you should look for a "regular" doc who is willing to learn about POTS and can handle things like the flu, ear infections, allergies, or anything else that might come up. Good luck with your search... but there are a few great doctors out there.

[Sallysblooms]

Integrative MD's help with all my care, supplements, blood testing etc.

[arizona girl]

Hi, I've been following your post about your daughter and praying for you all. I'm so glad to see she is stable for now. I'm also so glad you did not listen to that one doctor about her having an eating disorder, and took her to someone you trusted. Always trust your instincts. I'm fairly sure your doctor new the other one was full of it, but he had to diagnosticly rule it out, because it was in her record now. He did right by you, but had to put her through things he probably wouldn't have. When you get your breath you might want to go back to that doc's hospitals administrators and make a formal complaint and challenge that guy, he will do it again to another patient, if he hasn't already.

What type of doctor is she seeing right now (duke)? I was also wondering if you all had done any testing looking for cause of these symptoms? Many times there are underlying illnesses causing the presenting symptoms like pots/ncs, PAF can be a cause of the other symptoms. I don't know if you have done any reading on dinet's main page, but there are so many conditions that can lead to pots and syncope. The reason I'm asking is because depending on the suspected cause, you would need to see different types of doctors.

For my diagnosis which are a small fiber neuropathy, immune deficiency and pcos/metabolicy syndrome, and yes they all are related to each other triggering my different symptoms. I see a neurologist who specializes in autoimmune neuromuscular neuropathies, an immunologist who hopefully will be helping me with my infection rate, an endocrinologist that deals with metabolic dysruption caused by the small fiber damage to my gi tract and a cardiologist that did my TTT and manages my BP/HR swings and makes sure I'm not developing further cardiac problems. I also have a primary who I hope will be able to manage some of this once I'm finished with the diagnostic stuff. She will be taking direction from the specialists.

Your Duke doctor might be able to do that for you with your local doctor. When you mentioned she was having gi issues to along with the pots and syncope and made we wonder if she is suffering from an autoimmune neuropathy. There are different treatments for these type of causes directed at cause and not simply treating symptoms. If she was also hyper mobile you might look at EDS, or if she gets a lot of infections/colds you could look at a primary immune deficiency, those are just a few causes, the list is long.

Though I've been sick for a long time, my diagnosis has been evolving and I believe finally is correct, I'm now 54. It took way to long, I have hope for your daughter she is still young and with the right diagnosis and treatment can and will fair a lot better then I did, better to know sooner rather then later. She will also benefit from the active research now going on, much of the research is still very young compared to other illnesses. I hope this answers your questions, let me know if there is any other way I can help.

[rmlyonsfamily]

Wow! Thank you, Arizona Girl. Here's a few answers to your questions:

What type of doctor is she seeing right now (duke)? At Duke she sees a Pediatric EP Cardiologist who specializes in autonomic disorders. He is FANTASTIC! He did the CPX, all the labs, and her TTT where she went asystolic. He is the one who diagnosed her with POTS/NCS/PAF.

I was also wondering if you all had done any testing looking for cause of these symptoms? She has been through Endocrinology, Rheumatology, and Neurology... none of which have found anything other than a slightly elevated ANA from Rheumatology that is listed as "not clinically significant". We suspect this all started about 3 years ago when she had a true influenza virus for about 4 weeks with very high fevers. Since then things have progressively gotten worse.

[kclynn]

My son has a pediatrition. We have been with her forever. Once she referred us to Mayo, in December and then we self refered to Dr. Abdallah in March, I didn't talk to her at all. She had been out of ideas at that point. I finally scheduled an appt with just her and me (once I had a clear understanding, comfort level and medical plan) and talked to her for an hour. She was great, has always been a little forward thinking, will never have a total understanding of pots, but that is not what she does. I just needed to make sure she has a working knowledge so that she could see my son for pots stuff or other stuff as it may relate. I did not take my son. We were all totally wiped out by the year we had had and I did not want to subject him to anything awkward, though there ended up to be none of that. My son knew I was going alone and why. When he needed to see her a month later for a virus thing, it was very comfortable and I didn't feel like I needed to start explaining all that had happened with the kids sitting there not feeling good.

Just last week we saw a local electrophysiologist at the children's hospital here. It had taken me 3 months to get in to him. I sent him a letter ahead describing why we were coming, my son has been doing well, etc, but it would be in his best interest to have a local cardiologist who understands, and we wanted to keep Dr. Abdallah as our primary and add him to Jerod's team. He obviously read it and was great with us, reassuring that if he felt any changes needed made he would run it by Dr. A. So for now that is our Dr. situation but a few months ago we felt like you - What Now??

[corina]

i've been talking this through with my fam doc and ans doc in the past. we've concluded that my fam doc is the first one to call as he

1. needs to know what's going on (might be something "easy" or something related to the other meds i use)

2. has build up lots of knowledge over the past years (thankfully he was very willing to learn) about dysautonomia and pots

3. he's much more "accessible" (doc ans is more of a scientist and travels a LOT)

if necessary my fam doc calls doc ans (they've even shared their cellphone numbers!) to discuss what needs to be done, so i'm feeling quite safe this way.

after opening hours is a different story, and esp when my "team" are on holidays i struggle. so i try stay as healthy as possible

corina

[arizona girl]

What type of doctor is she seeing right now (duke)? At Duke she sees a Pediatric EP Cardiologist who specializes in autonomic disorders. He is FANTASTIC! He did the CPX, all the labs, and her TTT where she went asystolic. He is the one who diagnosed her with POTS/NCS/PAF.

I was also wondering if you all had done any testing looking for cause of these symptoms? She has been through Endocrinology, Rheumatology, and Neurology... none of which have found anything other than a slightly elevated ANA from Rheumatology that is listed as "not clinically significant". We suspect this all started about 3 years ago when she had a true influenza virus for about 4 weeks with very high fevers. Since then things have progressively gotten worse.

Before I add anything, if you aren't already doing so, please read up on dinet and or google your daughters known findings. Review all her doc notes an lab findings and understand what they mean, as you do that you will probably start to see a pattern. For example, my platelets tend to be elevated then normal, but looking back over the years there have been enough of them to now conclude something is off. The doctors you see will not have always have seen as much of her medical history as you have. You see a pattern you can point it out to them.

Okay, so they didn't find anything abnormal with her actual heart? She passed the stress test? Did they check her supine and standing catechcolamines? She has been primarily hypotensive on standing right? I would have gone into asystoli too if they hadn't put the table down. I produce excess catecholamines so I go up up, before a rapid drop to syncope. They are a back up system that gets blood to the brain when the small fiber nerves fail to constrict the vessels on standing in response to gravity. If I understand right if she is not producing them that is a sign for PAF, but the question is what's causing the paf.

What I can tell you from my own experience is that ep cardio's will treat symptoms, but if the defect is not of the cardio system they don't usually look to other cause. I also so those specialists, and interesting I also had a positive ANA for years. While rheumy's don't know much what to do with a positive ANA finding, it is a sign that something is off with the immune system. It is commonly found in people who have defective immune systems, so immunologists look at it differently.

You said she was really sick from the flu, do you know if they checked her "quantitative immunoglobulins" at that time. Has she mostly been healthy with few viral or bacterial infections? Also what tests did the neurologist do? Did they test her large fiber nerves (emg) and her small fiber nerves? Not all immunologists and neurologist are the same. The ones to see are the ones that specialize in subspecialties of primary immune deficiencies and autoimmune neuromuscular disease, skin biopsy for small fiber damage is the best test to determine that type of damage, find a neuro in your area that does them. For right now though it is good that your doc is helping to manage those symptoms in an effective way. Hope this info opens some new doors for you.

[DIXZELAND]

Hi, I've been following your post about your daughter and praying for you all. I'm so glad to see she is stable for now. I'm also so glad you did not listen to that one doctor about her having an eating disorder, and took her to someone you trusted. Always trust your instincts. I'm fairly sure your doctor new the other one was full of it, but he had to diagnosticly rule it out, because it was in her record now. He did right by you, but had to put her through things he probably wouldn't have. When you get your breath you might want to go back to that doc's hospitals administrators and make a formal complaint and challenge that guy, he will do it again to another patient, if he hasn't already.

What type of doctor is she seeing right now (duke)? I was also wondering if you all had done any testing looking for cause of these symptoms? Many times there are underlying illnesses causing the presenting symptoms like pots/ncs, PAF can be a cause of the other symptoms. I don't know if you have done any reading on dinet's main page, but there are so many conditions that can lead to pots and syncope. The reason I'm asking is because depending on the suspected cause, you would need to see different types of doctors.

For my diagnosis which are a small fiber neuropathy, immune deficiency and pcos/metabolicy syndrome, and yes they all are related to each other triggering my different symptoms. I see a neurologist who specializes in autoimmune neuromuscular neuropathies, an immunologist who hopefully will be helping me with my infection rate, an endocrinologist that deals with metabolic dysruption caused by the small fiber damage to my gi tract and a cardiologist that did my TTT and manages my BP/HR swings and makes sure I'm not developing further cardiac problems. I also have a primary who I hope will be able to manage some of this once I'm finished with the diagnostic stuff. She will be taking direction from the specialists.

Your Duke doctor might be able to do that for you with your local doctor. When you mentioned she was having gi issues to along with the pots and syncope and made we wonder if she is suffering from an autoimmune neuropathy. There are different treatments for these type of causes directed at cause and not simply treating symptoms. If she was also hyper mobile you might look at EDS, or if she gets a lot of infections/colds you could look at a primary immune deficiency, those are just a few causes, the list is long.

Though I've been sick for a long time, my diagnosis has been evolving and I believe finally is correct, I'm now 54. It took way to long, I have hope for your daughter she is still young and with the right diagnosis and treatment can and will fair a lot better then I did, better to know sooner rather then later. She will also benefit from the active research now going on, much of the research is still very young compared to other illnesses. I hope this answers your questions, let me know if there is any other way I can help.

My own theory agreeing with AZ Girl, is that something underlying is causing the POTS. For me after two long years of battling POTS, my endocrinologist discovered I have Hyperparathryoid disease which can present all the symtpoms that have brought on my POTS. I am scheduled for sugery on my neck to remove the tumor(s) in Sept.

[rmlyonsfamily]

So they didn't find anything abnormal with her actual heart?

Nope... echo looks good, EKGs and holter monitors were bad in the hospital, but have improved.

She passed the stress test?

Sort of... Her heartrate went up as they expected, but her BP didn't change at all. Stayed low.

Did they check her supine and standing catechcolamines?

Yep... Didn't do what they expected!

Prior to test:

Norepinephrine was 99 - Epinephrine was 45 - Dopamine was <10

At the time of asystole:

Norepinephrine was 337 - Epinephrine was 83 - Dopamine was <10

She has been primarily hypotensive on standing right?

She is hypotensive sitting and then even more so standing

You said she was really sick from the flu, do you know if they checked her "quantitative immunoglobulins"

Yep - they are all within range

Has she mostly been healthy with few viral or bacterial infections?

Until she had that flu, yes. Since the flu it's been one weird thing after another. She even had to have tubes in her ears at 15 years old after several ear infections that eventually caused labrynthitis! Who gets labrynthitis!?!

Also what tests did the neurologist do?

Neurologist really didn't do much of anything other than an EEG. They kind of wrote her off...

Did they test her large fiber nerves (emg) and her small fiber nerves?

Nope

[yogini]

Can the cardio recommend a CP or local cardio to work with him? Otherwise look for an internist or cardio that is willing to work with you. I took me several tries, but I eventually found a doctor that knew a little about POTS and was willing to listen to my ideas. That has worked well.

[Brye]

I have an internal med doctor nearby who is very helpful. My cardiologist is 3.5 hours away. I see my internal med doctor for almost everything before seeing my cardiologist. Even if it seems like more of a heart concern he's good about helping me sort out what's urgent and what has an easy fix!! Hope your daughter continues to improve!!

Brye