Dysautonomia runs in our family. My niece flatlined in school a month ago. Paramedics nor ER MDs could find her BP. How this can happen is beyond me unless there was a loss of peripheral BP and they needed an arterial line to find it? My sister, her mother, was diagnosed by one of the premier ANS MDs in the world over 15 years ago after years of symptoms since childhood that went completely out of control and feeling like there was something wrong with her mind because how can anyone present with her symptomology. The diagnosis was a life line for her. It could have kept her from killing herself.
She had wildly swinging BP and pulse and of course many other symptoms. Vanderbilt (fledgling researchers at the time, now I believe well known for their research in the field) didnt know how to deal with her. She needed a life line and they could not give her one and yes that was a diagnosis. They left her out in the cold alone to figure this out on her own with an ailing specialist (one of the first and like I said premier in the field) who was able to help her when he could at the time becasue and who "normalized" this with a diagnosis for her ... she didnt fit into Vandy's then liimited boxed view of dysautonomia, which they later revised. This benevolent MD is the one the ER MDs called close to frantic when they didnt know how to stablilize her BP and pulse and this was all too common an occurance for her. So when my sister or I see this manifesting in our children, you better bet we are going to pursue allopathic and integrated then ask questions and make decisions based on all the info we can get. Dysautonomia can get very out of control and has to be managed and your thoughts are relevant but may not be enough for all people.
We unschool ( a form of "home" schooling), which means we think school and its diagnoses, boxed curriculum and standardized testing is stupid ( read John Holts books on education and the Underground History of Education by John Taylor Gatto). We don't give grades or go by grade levels. We think thats silly or so I thought until my daughter wanted grades and wanted a grade level. My son still thinks its silly. I think its a ridiculous limiting mindset that boxes children into stupid ideas of who they should be based on how they perform based on generalized impersonal performance standards. But, my daughter wants grades and a grade level and now wants to go to school. Who is right? Me or the need she sees for herself at this moment in time?
My sister has a life now because she has openly dealt with her ANS dysfunction the way she needed.. she needed the diagnosis. (clonidine actually finally shifted things for her along with body work and brain retraining.. she figured this out long before the programs were developed). We do see integrated and alternative mds. I have been sick for over 8 years now and have been through many practioners and types of practioners.
I think there is a time and place for all kinds of practioners. I suspected the POTs as it was rather obvious but I wanted a tilt table et al diagnosis for her more than for me. And I am now here questioning the treatment. I don't trust any system, allopathic, alternative or integrated, esp when I do not see any flexibility of thought or on the other hand, flightiness which I have seen alot of on the alternative end of the spectrum and that includes diets.
I would not have had my environmental (integrated) MD perform my sinus surgery (invasive fungal issues which can be pretty dangerous)nor perform my colonoscopy and remove my precanerous polyp. I saw integratred practioners for years that i told about certain issues which went right over their heads because these issues were not in their speciality. Because of that, my disease process continued and worsened.
A beta blocker has been a "life saver" for me as has increased salt intake and electrolytes/minerals. Knowing my Yasko genetics has as well because knowing COMT++ status reveals a bit about my hyperadrenergic state and how at least not to feed it even worse than it is. I do not think mycotoxocosis from living in a mold contaminated house for 10 years is helping the situation either.
My daughter is being treated for heavy metals, chronic yeast and was living in a mold contaminated house for most of her life. she has been tested repeatedly for food sensitivities, hormones (currently treating with an integrated MD), and adrenals (same). She has been treated for lyme and I can't second guess that though I know it didnt help wth the fungal issues. I think I have some sort of handle on the big picture. What I want to do is address her POTs in the best way I deem for her as her mother and in a way that helps her feel good about herself.
The ANS MD also said no caffeine sugar, etc. I think thats pretty obvious. My concern is she is not being very discerning with the treatment protocol but thats why I do have an integrated MD or more actually to bounce things off of as well. Too much water without electrolytes can dehydrate you. This MD did not share nuances with me about that.. the direfctives were to drink 60-80 oz a day. I agree with you... Its simplistic and cookie cutter which is why I posted here. We have to limit fruits and sugars because of the fungal infection, but I get what you are saying.. you managed to find a healthy way to hydrate.
In the meantime, if a beta blocker helps, I'm using it. She has enough anxiety on her plate and if this helps calm her system down without swinging it out of balance then I'm up for that experiment. I am less willing to experiment with an SSRI esp without undertstanding why this might be helpful and without undersrtanding how it can be harmful beyond noted side effects or without pursuing other ways to help her with vasoconstriction. I am also pretty sure hydration is not going to solve blood vessel mal contriction, but I am open to being wrong about that. Dealing with metals and fungal infections and mold toxins more likely might. Im not sure the (potential) blood volume loss is not due to mycotoxicosis.
My daughter has been on the GAPS diet and gluten-dairy free. I am pretty familiar with the SCD as well. Grain free, BED, etc. We are currently trying out the Perfect Health diet. I think kids exp need some carbs (after exploring paleo). We are all about diet, lifestyle and alternative ways to address. But she thinks there is something wrong with her and I prefer an allopathic diagnosis over her thinking she is crazy.
Thank you for caring, X. I know you do. Its not easy when it comes to your own kids and making these decisions.