Madison’s Story

“It is worth the drive, the money, everything. It is totally worth it. In four days, my child feels better than she has probably in three months, just to see her being able to get out of bed and straighten her hair and doing her makeup and then feel like even going out after she has been here all day that is a plus, so I would do it all over again.” 

 
Madison came to POTS Care after suffering for 4 years with diagnoses of POTS, ADD, and congenital myopathy. It was only by reviewing her entire case from the beginning that we were able to locate what others had missed and began treatment immediately. Madison leaves POTS Care feeling better than she has in months, and with a solid treatment plan.
Madison's Story

**11 months after coming to POTS Care, Madison continues to do well. Her mom writes, “Madison is doing great!! She is a different child! She has energy and can do things she couldn’t do before. She had some bloodwork done and her D-Dimer (measure of clotting) is no longer elevated. Her CO2 is staying well above 21. It is around 27 now with no baking soda and she’s not been taking the Diamox. She’s not had a headache or the shoulder pain since January. I’m so thankful that God led us to you all so we could get to the bottom of Madison’s issues. Please keep in tough with us!! Madison will be graduating in May!!

**Four weeks after coming to POTS Care: In just 4 short weeks, Madison has improved immensely. She was able to attend an outdoor concert, in the heat, where she was on her feet for 5 and a half hours. Madison was also able to enjoy party activities after the concert, well into the evening. Before coming to POTS Care this would have been out of the question for Madison. We are thrilled to see her doing so well, and are excited to see even more improvements!

 

INTERVIEWER: Thank you for talking with us today, Angela. First, could you just tell us a little bit about Madison’s journey with POTS?

PATIENT’S MOTHER: She actually started off with just migraines and passing out, that was the initial thing that took us to the doctor. Over the last probably three or four years is when we have been dealing with it and over the last probably nine months she has just progressively gone downhill. She started having chest pains, heart attack type symptoms, and severe, severe fatigue so that is what kind of led us here.

INTERVIEWER: : I know you have seen a bunch of doctors, were they able to get you any help at all?

PATIENT’S MOTHER: :It seems like maybe they tried to help, the first doctor really did not do a whole lot, so we ended up with a cardiologist and he put us on some medications and told us to drink 7 liters of fluid a day and up to 10 gm of salt a day that is not possible for one person to do, so we just decided to search for something different that was more easy to do because that was not feasible.

INTERVIEWER: Do you feel like the care that you received at POTS Care was different than the care you have received at other doctors?

PATIENT’S MOTHER: Most definitely. Rather than just looking at the symptoms that she was having at that time or that we felt were POTS related, we were given a whole other spectrum of symptoms that we did not even know were related to POTS or to her, so that tremendously helped and the fact that someone just sat down and talked to us for an extended amount of time to kind of get to know her and me and that was awesome.

INTERVIEWER: Was POTS Care able to find anything that other doctors have missed before?

PATIENT’S MOTHER: Yes, most definitely. The inflammation thing, no one has ever checked for inflammation. Before then, we did not even really know that there was such a thing as inflammatory POTS. We were just always told that most POTS patients had orthostatic hypotension, headaches, they passed out and that was about it. So to know that there were different types and then of course with the clotting thing that was a huge thing that could affect her potentially down the road, so yes we are very glad that that has been discovered.

INTERVIEWER: Do you feel like we are basing things here on real science?

PATIENT’S MOTHER: Most definitely. Everything we have been put on to try, everything we have been told has a scientific background. They all have provided us with research studies, published research studies. So, yes I definitely think everything has been based on science.

INTERVIEWER: What would you say to people that are thinking about coming to POTS Care?

PATIENT’S MOTHER: It is worth the drive, the money, everything. It is totally worth it. In four days, my child feels better than she has probably in three months, just to see her being able to get out of bed and straighten her hair and doing her makeup and then feel like even going out after she has been here all day that is a plus, so I would do it all over again.

INTERVIEWER: Thank you again for talking with us today, Angela.