Frustrated With Understanding

[PetuniasMom]

I'm wondering if maybe I have this all wrong. To keep a long story short, a paediatric abdo-enterologist had determined that my daughters symptoms were not GI related,and sent her for a tilt table test, based on his assessment of her entire condition. The wait for that test was 9 months. She was instead seen by a cardiologist who felt that the tilt table test was not neccessary, and based on her postural vitals determined that she had an autonomic dysfunction. Her heart rate is up at least 30 beats per minute when she stands up from laying down, and her blood pressure is low, and does not make a big jump when she stands up...among other funny things. He described the symathetic vs parasympathetic nervous system to us, and said he was referring her to the autonomic clinic. He prescribed midodrine, and we are to be in touch weekly to see how the dosage is working.

The GI doctor who initially made the suggestion of the tilt table test said he was not surprised by the diagnosis of an autonomic dysfunction, and said he had nothing to offer us as far as her tummy symptoms other than a referral the the Cleveland University Autonomic Testing Center. (we are 8 hours from Cleveland, and in Canada....he was offering that as opposed to wait times here.) The GI doctor has been great and the cardiologist was helpful...

Appointment today to see her family doctor and let him know about what the 2 specialists had to say, and he was "on the fence" with the diagnosis and would be very surprised if what she had was a "true dysautonomia", and that low blood pressure was common with teenage girls.

So I guess my questions are, what is a "true dysautonomia"? What is the difference between POTS and Dysautonomia? Could she have an autonomic system mess up as far as her digestive system and her heart, and not have POTS or dysautonomia? Was I wrong in my understanding of what the Cardiologist told me? He said "call it what you want, but her autonomic system is not functioning correctly". Is that different than Dysautonomia?

I was very discouraged after the appointment, and I really felt like he thought I was crazy or something.

...am I?

Thank you for listening...

[Christy_D]

My son was also first just given a diagnosis of autonomic dysfunction by a cardiologist, who did not give him a TTT test. My son's main complaints were also GI related. We did not get any help for him from our local doctors, so we headed to Case Western University Hospital in Cleveland. Dr Gisela Chelimksy is a pediatric gastroentrologist who specializes in autonomic issues. Her husband is a neurologist who also specializes in dysautonomia, so we got to see both at the same time.

Your daughter should probably have a gastric emptying test done. It is not uncommon for people with dysautonomia with GI issues to have gastroparisis. My son did have delayed gastric emptying.

Don't let the doctors who are uninformed about dysautonomia get you down. Move on to the doctors who care and know enough to help. The first thing the doctors in Cleveland told my son was that this wasn't all in his head. Dr Gisela Chelimksy is awesome and so very caring. I can't say enough good things about her.

(Cleveland was a 9 hour drive for us, we went 5 times in one year, and it was well worth it).

Christy

[Godsgal]

You're not crazy! Take the drive and see the doctors that really know what they are talking about and can answer your questions. It's so worth it. This is a more rare condition and it requires a special doctor. I remember when I first got to the Mayo doctors that actually knew what I had it was like I was at Disney World! Please look at the symptoms on the main page here and maybe get on the dynakids website also. POTS is just a type of dysautonomia. We all have different symptoms that plague us because the autonomic nervous system covers a lot of areas. Everybody is different. And it will relieve you a lot to get the autonomic testing done for her. That will include a tilt table test.

Take care and know you're not crazy. And try not to worry about her too much even though I'm sure that is next to impossible. Just do whatever you can to help her avoid things that make her ill and maybe get her some compression hose, tons of gatorade, and salt for the blood pressure. I struggle with low blood pressure and I have for a long time. All of things I mention help it a lot and just relieving that one little area makes you feel a lot better. As far as the gastric complaints, avoid large meals and lots of carbs. Junk food doesn't help a lot either even in small amounts. The more natural foods will be better for her. I have a lot of stomach symptoms and my docs think I have some delayed gastric emptying as well. I just try to eat the healthiest food possible, small meals, no junk food ever, not a lot of grains/carbs, and I make sure I drink water while I eat. Also, I avoid mixing foods that need to digest by themselves. May be hard for a young girl to do but when you get sick enough it prompts you to try different things. As far as mixing food, you can check this website out. http://www.rawfoodexplained.com/digestive-physiology-and-food-combining/food-combining-rules.html Like I said, I know that it might be hard but I started to really hate looking 4 months pregnant every time I ate, plus the pain I would feel. This has helped me a lot.

Take care and praying for your daughter,

Jared

[Libby]

Dysautonomia is a general name for a class of syndromes (POTS, IST, NCS etc). The lines can be blurred between those individual disorders, as some have symptom overlap and no two patients' symptoms are identical. Using the term dysautonomia just covers all your bases.

As for something else accounting for heart and digestive problems...there's no other explanation that I can come up with (though I'm not a doctor, so that might not mean much).

I don't know if you watch the television show House, but a point that they beat you over the head with is that the best and most likely accurate diagnosis is the simplest one that accounts for all the symptoms. Coincidences, like having two completely unrelated things going on at the same time, don't generally happen. It's only a tv show, but it has a good point.

I started having symptoms of dysautonaumia (NCS and OI) when I was 13/14. They told me exactly what they're telling you, that it's normal for young girls to have low bp. But there's a difference between having low blood pressure and run of the mill teenage laziness, and having low blood pressure that significantly affects your ability to function. Other things started to crop up and soon I was diagnosed with inappropriate sinus tachycardia, reynauds, ADD, asthma, other arrhythmia, anxiety...They also tossed around things like Lupus and RA. Absolutely ridiculous to think that a young girl would have all that going on without a common denominator involved.

I was 24 before any of the primary care doctors paid attention to the blacking out and ordered a TTT. (Less than 15 minutes on that table and I had met the criteria for both POTS and NCS)

The specialist I went to after that, on the other hand, took me seriously from the start. And she actually treated patients with POTS, which was a huge step up from my primary who had never heard of it.

My point is that general practitioners are trained to recognize common illness because they're, well, common. The rare stuff doesn't even come to mind as a diagnosis most of the time. Even with the rare stuff that docs have actually heard of there are problems. My cousin's pediatrician spent 2 months insisting she had the flu before finally diagnosing her with leukemia. Because in 99 out of the 100 other kids, it WAS the flu.

If you and your daughter feel that what's happening to her is not normal, it probably isn't. I think it'd be a good idea to see the specialist. If it is dysautonomia, you'll get a confirmation, a treatment plan and peace of mind. And if it isn't, you'll have someone who probably will be able to point you towards someone who can give you an answer.

[Sarah4444]

I am also in Canada, and was seen in an autonomic lab in Hamilton, ON run by Dr. Carlos Morillo. He was recommended by Dr. Raj from Vanderbilt. Dr. Grubb also told me there is an autonomic doc in London, ON named Dr. Andrew Krahn.

If either of these two was accessible to you, it might be easier for you to receive follow-up care.

[usports2]

Good evening everyone!

Though I am new to the forums and my son was diagnosed just 3 weeks ago with POTS, I am drawn to respond to this initial post. First a bit of history. My now 18 year old first started having gastro issues 22 months ago, along with migraine, dizziness, vomiting. The peds gastro docs at the Cleveland Clinic diagnosed him fructose malabsorption ~ without a hydrogen breath test...told us it would make him way too sick to have the test & he definitely had it. 14 months after that and some heavy duty meds, our son was still ill. We switched to University Hospitals/Case Western in Cleveland for a second opinion. They said, nope, not a fructose malabsorber, and took him off the meds. They told us he had food sensitivities. 7 months after that, still sick. I was determined to find the answer to this monster. I started checking off body systems: skeletal, endocrine, neurology....and that's where we seemed to have gotten it right. Neurologist Dr. Daniel Koontz at UH ordered autonomic testing (tilt test, sweat test, etc.). As I said, our son was diagnosed 3 weeks ago with POTS.

Thru the course of these 22 months, we have noted that he has gastro issues if he eats after 8 at night (digestive system not getting sufficient blood flow during sleeping hours to function properly) and migraine, dizziness, vomiting in the mornings if he takes a hot shower, of all things (shower makes vessels vasodilate).

So, in our son, POTS rears it's ugly head in many different ways. His bed is tilted about 3.5 inches (that makes his heart work a little harder thru the night so the blood hopefully doesn't pool as much). Absolutely no showers in the morning...ditto for eating anything in the evening. He is hoping to stay off meds as he was on some pretty yucky stuff for a long time and would like to stay drug-free if possible.

One last note, his symptoms are consistently in the morning hours. He will be sick until about 4 p.m., get well again, and then the vicious cycle starts all over again in the mornings. After 22 months of this, we not only doubted our mental well-being, but our son's also....was he somehow causing this? was he having an emotional issue causing this? It was a long road, but when we told him he'd been diagnosed, the first words out of his mouth were, "I'm not crazy!" I think that pretty much sums up his life for the past nearly 2 years. Very trying both emotionally and physically, but hopefully, he is on the road to better health!

Best to all of you...and thanks for sharing your stories and insights for us "newbies." We have so much to learn!

[houswoea]

Hello!

When my first cardio told the "low blood pressure is common in girls" story, I broke down crying and told him about how much it was affecting my life and how it just HAD to be more than normal "low blood pressure issues".

He believed me and took my troubles seriously. He just didn't know based on my explanation how badly off I was. If you trust your doc, try explaining how terrible things have been. If you don't, I really think the drive is worth it.

Hope things get better for you!

[PetuniasMom]

Wow...I cannot believe the level of support and encouragement I have received with just this one post. Each and every one of you has said something that has helped me, I want to print this thread and read it over and over today! Thank you so much. I did look up Dr. Morilo, and will definitely ask to be referred to him as well. And yes, from everything I am reading I see that the 8 hour drive to Cleveland would be worth it, and I will make some calls on Monday. I will be ever thankful to the paediatric GI specialist in Kingston that first checked her postural vitals.

There is so much information you all have given me in your replies that I want to digest and reply to - the timing of symptoms, hers are very bad from the time she wakes up until about 1pm and then sort of manageable from there until about 5pm, and then downhill to unbelieveably awful starting around 9pm ~ and the morning was worse when she was getting up and having a hot shower to try to get her day going.

I am off to read, read, read some more, and may reply to some of you personally if nobody minds? And again, thank you for taking the time to answer me, I feel much, much better today, and hopeful that someday my daughter will have her life back.

[usports2]

We live on the west side of Cleveland, just 25 miles from University Hospital/Case Western. If there is any way I can assist you, please let me know. We are so thankful that we have such easy access to the UH system...just like all of us here, you sound willing to go to the ends of the earth to get an answer to this monster. I am a true believer that we are our kids best advocates. Don't give up, even when you start to feel like you're losing your mind! Our son looked to us for his strength; for our signal that we weren't giving up and so he wouldn't either. The answer is out there...just need to find the right doctor to help you out.

[Sarah4444]

Please feel free to contact me, I'd be happy to help in any way in can.

[kjd111]

Petuniasmom -

It took us 18 months to find a doctor who could diagnose my daughter's issues, so the lesson is never, never give up. I took her to some of the best neurologists and endocrinologists I could find in the US and it was a "let's just try this guy and see" appointment with an endo in our own city that was the breakthrough. He figured it out in about 20 minutes because he'd seen it before. Dysautonomia can cover so many things. Its a syndrome of issues, not a disease per se, and it can also be caused by a lot of things. Our doctor told us the story of another teenage girl he treated, who had been so sick with this problem that when she got up in the morning she had to literally crawl around the house for a few hours until she could stand up right. He actually suspected my daughter had this issue by her low standing bp and her color (grey). Then he did the "poor man's ttt" and drew catecholamines lying and standing and voila - the answer. Zero response to standing with the catecholamines, no aldosterone to speak of and a huge drop in bp.

My daughter also had a lot of Gi issues that had gone on forever unexplained. She didn't vomit or anything but she literally couldn't go to the bathroom and her bowel movements were like rabbit pellets they were so dry and hard. The midodrine helped her orthostatic hypotension, and the florinef in particular was also helpful, but it wasn't until he put her on dextroamphetamine that the GI issues literally disappeared. it was amazing. All of these types of things are connected. My daughter has very odd sweating issues. Sometimes she sweats out of proportion to what should be, sometimes not at all. Her sympathetic nervous system doesn't respond to any kind of stress (physical or mental) - most likely due to the concussion she received at 13 when she fell in her bathroom. Its like there's no on/off switch.

So, don't give up. Just go find someone who knows this area well. Almost 2 years later, my daughter is a little better. Not because she's healing or anything but because we were persistent. Last fall, I talked her endo into letting us go get a blood volume test because her hematocrit was consistently low. She is missing 21% of her blood volume and 29% of her red blood cell volume. They were astonished!! He has her on procrit for that and it does help a little. I also took her to just about the best Pediatric GI doc in Dallas (where we are) - great guy. I brought all her autonomic function testing and talked to him beforehand. He studied up on the autonomic dysfunction beforehand and agreed to try her on octreotide - the main reason I went there. For us, the octreotide has been incredible. One of my daughter's main problems is that her blood vessels and capillaries are perpetually dilated because her sympathetic nervous system is so non-functional. She "leaks" fluid constantly into her tissues - all over her body but a lot in her midsection. Her bp drops a lot after eating. The Octreotide injections have really, really helped this. We are so grateful for both these 2 doctors and for them allowing me to push them into continual experimentation with the meds until we found some things that gave her 'most' of her life back. I say most because she was a competitive athlete and I am not sure she will ever be strong enough to compete again, but she can run a little now and workout and is in school, in honors and AP classes and doing really well. Her brain gets tired from the studying and then the meds don't work nearly as well (like a finite bucket from the meds - when she's used it up with one thing, its done - not dynamic or reactive to her needs at all), but i think it is the best we can do for now.

Kate

[Godsgal]

My life with this condition is so much better when I avoid things that set it off. That hot shower in the morning is definitely no good. My POTS specialist told me to drink a glass of tepid water first thing before getting out of bed. Another one of my tricks to raise my blood pressure if it's really low is to put a pinch of sea salt on my tongue, wait for it to dissolve & swallow it, and then chug a bunch of water. I don't like the taste of salt water so I like to try to swallow as much of it as I can. That helps me a bunch. Also, what does she do every morning...perhaps there is something that is making it worse. Same for at the around 5 pm time. Is there anything possibly that could be setting symptoms off for her that she does everyday? I And please feel free to contact me anytime. I'm happy to help!

[kclynn]

We ran into this as well, and I think I may have it a little figured out. You didn't say how old your daughter is but I will assume she is a teen. There is a difference in prognosis between teens who get POTS and adults who get POTS. It could be that your doctor was simply trying to verbalize this. The Dr. (from Mayo) did not want to call my son's POTS a dysautonomia but didn't explain why though she was not good to us in communicating in general but that is another long story. Some Dr. with less understanding may be thinking of Dysautonomia in the sticter sense of sysem failure. It is true at some point your daughter is likely to improve greatly, even recover completely. That may be what your Dr. was trying to verbalize.

While it is true that many kids (without dys. conditions) do have a big jump in heart rate the difference is the cascade of autonomic symptoms that result, the ones that make life miserable and difficult to function. My son's symptoms are 2 pages long and include the GI issues which we are working on now. He is feeling better so it is actually easier to see when something more specific is bothering him vs. a few months ago he was so sick all the time with every symptom. I noticed right now all his symptoms can become worse following stomach nausea. Give your Dr. a little time, provide him with information. There is a paper that Dr. Grubb wrote on the web that is seems to be more directed to other physicians. It is long. I gave it to my son's neuro and it was well recieved. Dynakids will also send your Dr. information if you ask them.

You are doing a great job to keep looking for the right Dr. and the right treatment. Just know your daughter will feel a lot better when you do. The hardest part is finding the right Dr. then waiting because it is a process of baby steps. We are now flying half way across the country to see a Dr. in VA and my son is finally getting the right meds and starting to feel better. Last winter he could not get off the couch and yesterday rode his bike a mile to Sonic and back with a friend.

Someone mentioned Dynakids.org. We joined that also. I would so recommend anyone on here with teens/young adults join. The information and support for the pediatric population there is amazing. The one thing that was stressed that you can do now is to do what ever your you can to get your kid moving. We started with my son by both of us supporting him (170 lbs!) and walking/dragging him to the front door and back several times a day. There were frequent stops and sometimes we didn't make it but we kept at it. He is 15 so we have a ways to go and I expect there will be ups and downs and bike rides to sonic will lead to a day on the couch for some time, but just keep at it - you don't have any choice.

PM me if you want!

Lynn

[PotsMom]

PetuniasMom,

Like many others, I can all too well relate to the frustrating journey with your son. I have two kids with dysautonomia and like so many it has been a long,tough journey. A common thread that probably every single dysautonomia patient shares is the frustration of finding physicians who understand dysautonmia and recognize it's existence and how deblitating it can be.

This is an excellent thread with lots of great input. To add my additional two cents, I think both the gastro and cardiologist you have seen are on the right track. It sounds like they both recommend referral for autonomic testing, and that says volumes for both of them. I know you might have been a bit discouraged by the cardiologist saying he didn't feel your son needed a tilt test. However, he hit the nail on the head when he said to call it what you will but that he thinks your son has autonomic dysfunction. I personally think that's the bottom line. I know someone else here also pointed out that there are various forms of dysautonomia. That's very true, and many have more than one form. For example my kids both have manifestations of both POTS and NMH, and I well remember when she was first officially diagnosed the doctor drew a diagram that he felt she had parts of both. I think it is the recognition of the fact that there is an autonomic dysfunction that is all-important, and that says a whole lot on the part of the doctor to recognize that. The treatment for dysutonomia is a trial and error process anyway regardless of the specific type, and in my opinion defining the specific type is not nearly as important as defining the fact that the bottom line is autonomic dysfunction. As for the tilt test, though that has become the standard among doctors who have expertise in treating dysautonomia, I don't think it's a negative for a doctor to say he doesn't think they need to do the tilt test. In many cases dysautonomia can certainly be diagnosed by doing the equivalent of the "poor man's tilt test" in the office. The tilt test gives them more data, but the bottom line determination can very often easily be made without the formal tilt test. I actually respect what the cardiologist said and the fact he recognized it for what it very likely is. I don't disagree with having a tilt test but I also don't think the cardiologist was off base in saying there is no need for one. He actually sees it by just doing the orthostatics, and thus I say he is light years ahead of many!

Again, just my two cents, but I would ditch the family doctor. In our very long journey I have learned not to waste time with those who are not informed about dysautonomia and show signs of doubt. It is not worth your time, energy, and money. In some cases, you will find doctors who were not aware of dysautonomia but they are willing to learn. That is an entirely different matter. If they are willing to learn and recognize it and work with you, that's great,and I in fact have the ultimate respect for doctors in that category. However, if there's doubt and/or they are offended by a patient presenting something that they are not aware of, it's not worth the time and effort, let alone the frustration.

You are fortunate to have found not even just one but two doctors who are leading you in the right direction. A referral to an autonomic facility is awesome, and it is well worth the drive.

My thoughts are with you and your son and your family. It's a tough journey, but you will find lots of support here among those who have also traveled and continue to travel the tricky path of dysautonomia.