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About Colomom

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  1. My family has had a different experience than OP’s experience. My first experience was a health issue with my father (not dysautonomia ). The hospital was a life saver for my Dad, numerous local neurosurgeons chose to ignore his debilitating issues for over a year, but the doctors immediately recognized his problems, did emergency surgery which saved my dads life. After my Dad’s incredible experience when my son started having health problems our local docs couldn’t figure out, I pushed to get him in at that clinic and am so glad I did. We traveled a long way from Colorado, and while a
  2. Which Mayo are you going to? My son went to Rochester, for my son they scheduled more appointments/ tests then were originally booked throughout the week we were there. Mayo runs like a well oiled machine. I was blown away with their efficiency at scheduling. Any time they add an appointment or test they will print you up a new detailed schedule that outlines times, locations, and detailed instructions outlining how to prepare for the test. If your doctor decides extra specialist visit or tests are warranted they will try their best to schedule it while you are there. Good luck!
  3. Finding a doctor to treat my son's POTS was an uphill struggle. A particular low point was an appointment he had with an electrophysiogist in Denver. We had to wait months for the appointment and Denver for us is quite a distance to travel. Traveling to Denver our flight was delayed due to weather. When they finally called us to board the plane my son passed out as soon as he stood up. Thankfully he soon regained consciousness and we were able to make it onto the plane and somehow we made it to the appointment on time, but it was a long stressful day of travel. The appointment unfortunately w
  4. My son has POTS and because he is 6’6” tall his doctors want him drinking a minimum of 4 liters of water a day. For my son we add 1/8 tsp salt and 1/8 tsp nusalt (salt substitute found near salt that gives you potassium) per liter of water. We then add fruit simple syrup to taste to flavor the water. I make the simple syrup with whatever fruit is in season (you can also make the syrup with frozen fruit). We also like to use sparking water on occasion make an electrolyte soda. Fruit simple syrup recipe: 4 parts fruit 1 part water 1 part sweetener; sugar, honey maple
  5. I posted this in a previous thread of yours, but you may not have seen it. I recommend that you join Dysautonomia International’s Colorado support group then put up a post asking for doctor recommendations. To find the CO support group go to the Dysautonomia International website, click on patients, click on get connected, then scroll down to find a link to the Colorado group. You have to submit a request to join. When my son first began having problems we quickly learned how difficult it can be to find a doctor who understands Dysautonomia. You aren’t likely to find an automatic special
  6. As far as I know there aren’t many Autonomic specialists in Colorado. Jill Schofield is one I have herd of, but she doesn’t doesn’t take insurance so all costs with her are out of pocket. For my son we took him out of state for autonomic testing and his long term care is managed by a doctor who is not a specialist is Dysautonomia, but has a great deal of knowledge about it. Dysautonomia International has a Colorado Facebook support group, it is a great resource for doctor recommendations. You can find a link to the group on DI’s webpage, you will have to submit a request to join the group.
  7. I’m sorry you are going thru this and understand and relate to your frustration. I hope you can find a doctor who has expertise in Dysautonomia, unfortunately doctors who understand Dysautonomia can be few and far between. If you haven’t been to the Dysautonomia International website check it out, it is a great resource. If you click on the patients tab you will find a link that will help you connect with a local support group. If there is a group in your state reach out to them to get recommendations of doctors in your area.
  8. Sorry you’re having such a rough day:( Hope the ER docs are able to figure out something that will help make you feel better!
  9. Before settling on fludrocortisone as the best treatment option for you it would be helpful to get a fuller picture of what’s going on with your BP. You should ask your doctor to order ambulatory blood pressure monitoring. It’s a blood pressure monitor that you wear for 24 hours, it takes your BP at consistent intervals thru the day and night. Considering there had been previous concerns about high BP, i’m surprised that a doctor determined that you should be given a med to raise your BP based on a marginally low reading that was taken after you had been administered Metroproponol. Anoth
  10. I took my son to Mayo Rochester, for us it was worth the trip from Colorado to Minnesota. I chose Mayo because my past experiences with Mayo were amazing! My son was already a Mayo patient, so we didn’t haven’t to deal with the long wait times that are typical when going to Mayo. As far as insurance coverage, my advice is to try to get appointments at all the top places. Once you have the appointments you can always cancel if you find that your insurance won’t cover it, call ahead of time to confirm insurance coverage. If your doc will give you a referral it would likely help with insura
  11. If I were in your shoes I would consult with a sleep doctor/ pulmonologist before making any final decision on treatment. There are a number of drawbacks with mouth guards to consider. First of all they are expensive and aren’t always covered by insurance. The generic buy them online guards don’t work, and ones purchased thru a dentist are expensive. My brother has mild sleep apnea and looked into having his dentist make a mouth guard, the dentist quoted him $2500 and his insurance would not have covered a penny of the cost. Mouth guards used to treat sleep apnea often work by opening up you
  12. Most CPAP machines have a humidifier. When the moist air travels from the machine thru the long hose that connects the machine to the mask the moisture in the air can condense causing rainout (water in the mask). A heated hose prevents rainout because if the air is kept warm the water vapor doesn’t condense. I believe that most machines are set up to accommodate either a heated or regular hose. The heated hose is more expensive, but a doctor can specify a heated hose in the persciption so that insurance will cover the extra cost. Alternatively you can by a fleece hose cover of Amazon for about
  13. My teenage son has sleep apnea, POTS, and EDS. Sleep apnea was the first thing his doctors figured out and treating the sleep apnea has been life changing for him. My son had mild to moderate sleep apnea (AHI 14.8). Most concerning to me was that my son was also diagnosed with hypoxia, his O2 dropped the 70s and was under 88 for over an hour while sleeping. Like most on this forum figuring out my son’s health issues was an uphill battle. By the time we got my son’s sleep apnea diagnosis he had been struggling so much in school that we had to get him designed home bound midway thru the school y
  14. I understand and relate to your frustration with doctors. The first sleep doctor/ pulmonologist that my son saw was horrible. We fired him and got lucky on the second try. My son also had difficulty tolerating the machine. To help my son tolerate CPAP his doctor started him on a low pressure and titrated him up slowly to the pressure he needed as he became used to the machine. Many people experience claustrophobia when starting PAP therapy, sometimes changing masks can help with claustrophobia. Your sleep doctor should have worked harder to make your sleep study more representative of your nor
  15. My teenage son has autonomic dysfunction and sleep apnea. His AHI was split evenly with 50% of his events being central apnea’s and 50% obstructive hypopneas. Most concerning was that my son was hypoxic during sleep. Thankfully with CPAP my son’s nighttime oxygen levels have improved. Treating my son’s sleep apnea has been life changing for him. Sleep can vary from night to night, it’s not uncommon to have a variance in AHI numbers on different nights. Most people’s AHIs are highest during REM, it’s likely that your sleep studies may have actually underestimated your AHI because you had s
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