My son was diagnosed with autonomic dysfunction in June, after 3 years of Gastroentrologists-tests and medicine, then neurologist-tests and medicines-then psychologist who said 'Not anxiety' then Cardiologist who said autonomic dysfunction.
The cardiologist gave us fludrocortisone for dizziness, had us do a blood test a month later to check his potassium and that's it.
My sons symptoms are: dizziness(better with the fludrocortisone), abdominal pain(every day) nausea (every day), brain fog, heavy head, weakness in legs, frequently hot(can't control his body temp. His blood pressure varies. One day it can be 110/75, last time at neurologist it was 90/50 and today it was 110/52.
The pediatrician and cardiologist say the nausea and abdominal pain are not from the autonomic dysfunction, but I read it all over the place as symptoms for this. So today we were sent to St Louis Childrens Diagnostic Center.
The doctor looked over all of the other doctors notes and tests, said no other tests were needed at this time and dismissed the psychologists findings. Our pediatrician has been pushing this to be a mental issue. The diagnostician thinks depression in under diagnosed and wants us to go that route. He also thinks autonomic dysfunction is not necessarily provable(regarding the nausea and abdominal pain)
If you meet my son, he is not depressed--even though he has been sick daily since February and has not been able to go to school since then and has had to give up soccer and only plays baseball when he can. I am tired of this! I've been told Vanderbuilt doesn't see kids. Any parent of a teen had this similar situation- Doctors wanting to make this a mental problem? I'm ready to see a doctor outside of St Louis, since we are going nowhere here. Any recomendations?
What tests did the gastroenterologist do? Gastric emptying, EGD? If these tests haven't been done, call up and ask why not. The autonomic nerves control the muscle movements of the stomach and intestine that make the food move through. And ultimately, it can be provable. In fact, my diagnosis of gastroparesis added to the POTS was what prompted my neurologist to get a Small Fiber Nerve skin biopsy. And voila! No small fiber nerves. That's pretty good proof. (That would be at Cleveland Clinic, by the way)
I think most of us on this forum have been told by at least one doctor that it's all in our heads. Personally, I was offensively cheerful when I started getting sick (and I mean cheerful at 5 am offensive), and doctors still told me I was depressed. What is up with that? Just 'cause they're all miserable...But it must be particularly hard for you with a teenage boy. You might consider finding a new pediatrician. If you're not on the same page, that just makes it harder to get tests ordered and discuss results.
I agree that it's time to find a new pediatrician if this is the angle your current one is persistently trying to pursue despite your insistence to the contrary. And you said the psychologist even said it wasn't depression, right? If the pediatrician won't listen to that, you might as well find a new one because that's a good sign that there isn't going to be a change of heart on this issue, regardless of what evidence you present.
I'm so sorry that you keep hitting dead ends on this. Have you considered taking him all the way to Cleveland or Mayo--seems like it could be as much as 10 hours away for you? But I'm not sure what else to tell you at this point.
I will tell you that teen, young adult, older adult ... I think just about all of us have gone through doctors (often more than one) suggesting that either certain symptoms or our entire illness existed merely due to anxiety/depression/psychosomatic condition/conversion disorder/etc. Many of us have gone through periods where we seriously started to doubt ourselves and wonder if we WERE going crazy before we got properly diagnosed, since so many doctors seemed convinced we were depressed, psychosomatic, or exaggerating.
Your son is SO fortunate to have you there to continue believing in him and fighting for him in the face of doctors who sometimes find it easier to say "the problem is in your head" than "I don't know" or "I can't figure it out."
We have given up in St Louis. We have an appt. with a doctor in Cleveland on October 5th. I had read an article online about teens and autonomic dysfunction written by a doctor at the Mayo Clinic, and so I emailed him. He gave me the name of a good doctor in Cleveland who specializes in autonomic dysfunction and is also a pediatric gastrolentrologist.
I have hope that finally someone will start treating his symptoms other than the dizziness. Plus, I don't know how much longer his doctors in St Louis will let me have him on Homebound Schooling, since they think it is anxiety or depression. His pediatrician last year made the comment to me that I should take him to school and if he has to spend the whole day in the nurses office- so be it. She thought he would get over his anxiety that way. I didn't buy it, nor would I take my sick child to school and keep him miserable all day.
He is in high school now, and the maximum amount of time you can spend in the nurses office is 20 minutes and then back to class you go. My daughter suffers from migraines and she goes to the nurses office and takes her migraine medicine and they don't really give it enough time to make her feel better and for the side effects to where off. ( but that's another issue).
The doctors haven't run any of those tests. I had asked his gastroentrologist about gastroparesis(before he was diagnosed with autonomic dysfunction), he said it USUALLY doesn't happen in children. I thought the key word was usually! Anyway, he gave me the card to a psychologist and sent us on our way. (The doctor had already done an upper endoscopy, ultrasound by this time).
The psychologist ended up to be great! She steered us to see a cardiologist, which was when he got diagnosed with autonomic dysfunction. The problem is these doctors think the fludrocortisone should solve it all, and since it hasn't, the nausea and abdominal pain must be anxiety or depression.
For a lot of us, fludrocortisone hasn't done anything at all, but I know what you mean. The docs prescribe it like it'll fix everything and hope you don't come back. Best of luck in Cleveland. Not that I want your son to have neuropathy, but I hope you get some REAL answers. Thank goodness the psychologist didn't jump on the bandwagon. You might want to hold on to her, because it can be difficult dealing with a serious chronic illness.
I have been in your shoes. My 13 yr old started with vision blackouts, then at 15 all of the gastro problems (stomach pain & constant nausea), then at 16 severe autonomic symptoms (way too many to list) but including the ones you listed. Several doctors wanted to insist depression. I, like you, knew that my daughter did not have depression issues or anxiety issues. There were physical symptoms.
We saw at least 20 doctors of all kinds over a 2 yr period. Finally found a doctor (an older doctor that will test everything until an answer is found). He thought that it could be Autonomic dysfunction and sent her for a tilt test. That was the first physical test that proved there was something wrong, not in her head. However, could not find a Neurologist or Cardiologist that would help. Finally a group of doctors put their heads together and determined Autonomic issues but they knew of no doctors in our state that knew enough about it to help.
I contacted UT Southwestern Autonomic Clinic in Dallas, Tx (8 hrs away) and was able to get her doctor here to refer her (they only take doctor referrals). They did autonomic testing and showed that she has Autonomic Dysfunction and Autonomic Neuropathy. Prescribed Robinul for stomach issues and Mestinon for blood pressure issues. Some improvement but still a long way to go.
Find someone that knows about Autonomic issues and can test for autonomic dysfunction. Don't give up. You need a doctor that will admit when they don't know what is wrong and will tests until they get the answer. For us that was, literally, 2 yrs of constant testing to rule out all of the other possibilities.
We saw the doctor today. She told us not to give up hope. There was a mix up in her office when we scheduled our appt. They should have told us to have him stop his meds, and we would have been seen at her other office. So we are scheduled to come back in two weeks for several tests, including the tilt test.
I'm just happy she didn't tell us he needed to see a pscyhologist! She completely understood what we went through in St Louis. So we are going home tomorrow, but will be back in Cleveland the week after next.
That's terrible that you're having to go through this with your son. How old is he? I see you said he's in HS, which can be terrible if he's having to miss that much school.
My oldest son had to miss school when he was 13-14 for kidney problems & surgeries, that was 10 years ago and they weren't understanding of his problems even back then, which doesn't help the situation.
I'm new to all of the ANS/CNS stuff but in my first pages of research after I was dx I found this from the American Heart Association:
"The ANS also regulates the movement and work of the stomach, intestine and salivary glands, the secretion of insulin and the urinary and sexual functions."
I can't stand when doctors use the word "usually". Like in my case - they said pvc's are "usually" benign - I turned out the be one % that was malignant.
As for ANS, I didn't get alot of info before or after my diagnosis so I've been researching all I can. I was told I tested positive and given Midodrine 3 times a day with the warning - dont miss a dose and not to take it 4 hours before bedtime.
Your son has a lot of symptoms I've had for years and been told by doctors nothing was wrong with me. How far does my ANS go back? I don't know, but I've fainted and had dizzy spells since I was 9 years old. Nausea & abdominal pains are something I thought were because of my diet or nerves and have sufferened since I was a young adult, but never a diagnosis for anything.
I'm just learning about ANS/CNS, but I would lean towards thinking that every component of our body is covered by the ANS and some patients have symptoms differently than others. It's like trying to fit a square into a round hole - don't try and make it fit if it doesn't, keep trying to find the right one until you do.
Your autonomic nervous system is involved in anything your body does without you consciously thinking about it, i.e. you don't tell yourself to breathe, move the food through your digestive tract, adjust your body temp to keep it at 98.6, or contract the heart muscles. So any body process you can think of that you don't tell yourself to do can be messed up with dysautonomia. And the list is loooong :)
Its not depression, they told us this too. Both my daughters have the stomach issues also and the both ave POS and Dysautnomia. The doctors are not educated abut the illness. Also check into gastroparesis. Very common with this.
I feel your frustration more than you can possibly imagine. My daughter Olivia just turned 11 and has been battling abdominal pains for 2 years. Throughout all the testing we have had done. We have found that she has hydronyphrosis on her right kidney, has had to have her gallbladder removed, and no tests have shown a thing. We have seen a GI doctor as well and after running an upper and lower scope they were unable to find anything. I met with a neurologist and he told me he was familar with autonamic dysfunction in children but could not help her. She is scheduled to see a neuroscience doc in Sept. and the neurologist suggests she go to a specialized clinic for the disorder. But I cant find anyone anywhere as of yet were I can take her. Her great Aunt has this disorder as well as 2 of her cousins. It is congenital. I have learned that. I have also learned that all the symptoms my daughter has..abdominal pain, migrains, leg cramps, chest pains, fatigue, anxiety, are all the symptons each has experienced. I just want to know, just like I am sure you do. If I can help you in anyway by being someone to vent to please let me know..God Bless and Good Luck!
I don't have a lot of time to go into things right now, but I am a retired RN (retired due to injury and the need to be a full time nurse/mother to my two children with dysautonomia. They are a full time job due to the severity of their symptoms, depression, and even suicidal thoughts and addiction.
Have been battling this disorder since the children were born...my daughter is now 19 and still a severe mess, my son is 18 and is fairly level for now on most days.
I have names of doctors familiar with this disorder.
University of Michigan is going to admit both children together to see what they can figure out, and how they might be able to make their lives more bearable and functional. I too have had dysautonomia all my life...I am now 56.
Anything I can do to help, please post a question...I will try to check this forum daily and respond.
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