POTS. Salt, salt and more salt

To combat the sodium problem, the original recommendation was for my daughter to drink Gatorade every day. Gatorade has a lot of sodium, granted, but it also has artificial ingredients and sugar. A little investigation revealed that if you purchase the
G2 line of gatorade, you get a lower sugar product that does not contain the same crazy ingredients, and they even have some clear varieties that avoid coloring agents. So, that is good, but it still delivers sugars and without the movement of regular exercise, that is not great, so we add a lot of salt to food, but we still need her drinking plenty of liquids and it's been a challenge to keep the levels high enough to make the impact that is required to reduce the POTS symptoms and raise that blood pressure.

A co-worker recommended a product to us that is an

electrolyte powder packet from Pure. It contains some sodium (not as much as a gatorade, but still a nice amount) and some magnesium, which is also recommended. I like that the magnesium dose is small enough to not bother her touchy stomach, and I like that this product does not contain a long list of minerals and amino acids. We don't need all of those ingredients, so this seems pretty good. The only problem is the flavor. It is a powder that you mix with water. To me it tastes like nothing....like water, but to my daughter, it is like drinking a glass of sweat. So, that is not an option for regular use.

Douglas Labs make a similar product in a capsule format (Klean Electrolytes), which would be much more doable for my daughter. The only problem with this is that I don't know exactly how much she should receive and if the other ingredients would get too high if we went to the level she needed of the sodium/mg. I have that question out to a pharmacist at the moment and I will follow up with the answer when it comes in.

Finally, there are basic salt tablets that deliver sodium, alone. The amount of sodium is about the same in one tablet as in 2 gatorades. That is very targeted and perhaps it is where we need to go. The doctor did suggest it as an option, though I am not sure how to take such high doses of sodium and not throw the body off in terms of ATP or general hydration. I feel like we need more specific guidance rather than "increase sodium intake". This will require a bit more research. In the meantime, I will wait to hear back from the pharmacist and start my question list for follow up with the doctor. My hope is that the right balance of sodium, liquids, and compression garments will prevent the need for blood pressure raising medication at this time.

Irish EDS and HMS information

This site has some very helpful information for explaining EDS to schools, teachers, family and friends. Especially helpful are the pamphlets geared toward children, found here.

Check out their site for photos that simplify what types of movements fall into the hypermobility category, without having to perform the human tricks to show others. I am curious if Irish ancestry plays a heavy role in the genetic trait. I know we have family from Ireland, if we follow the family tree back a ways, but I don't know where this genetic condition is most common. Check out the great information found on the Irish EDS & HMS site, here, and follow them on facebook for more information to share on rare disease day and EDS awareness month.

Tilt Table Test

I will come back to delve into this further, but the tilt table test was done today. She threw up afterwards, 3 times, and the doctor told us that is not normal. He said she has clear POTS based on the testing. The doctor advised 2 medications. One to lower blood pressure and the other to act as a stimulant to the central nervous system. He also advised starting the medicine slowly, and using compression socks daily.
Again, I will come back and fill in more details, but I wanted to get this down quickly.

---Follow up a little over one week later---
We have started with compression sleeves at about 20 for pressure. These seem to be helping, or we are just lucky. We're being very careful to make sure she gets her fluids before getting out of bed, and lots of salt! We've also been trying different electrolyte drinks and powders. So far, she hates all of them, except some gatorade. So, the G2 is lower in sugar, lower in artificial junk, and that is our current choice (plus all usual liquids). This is helping...I think.

We haven't started the medicine yet, as we wanted to see how she responds to the other things, when applied consistently.

---Follow up in April ---
The tilt table testing caused some off kilter balancing in her system. She threw up immediately after the test, and multiple times that day, and then the following week. Ever since, she has had constant motion sickness in vehicles, which she never had before. She experiences the nausea daily, which is new since that test, and she is still upset about the actual testing experience. She would not recommend it or advise to another EDS-er in her situation.

POTS, fainting and wheelchairs

Well, kiddo climbed a mountain, so to speak, during her little sisters birthday party. She participated in a climbing event that left both her father and I in shock that she could do it! The smile on her face was worth the world. She was so happy, just being a kid.

Fast forward 2+ weeks and she has been dislocating and subluxing daily without the ability to walk more than 15 feet. Her body is screaming at her with every movement as if to say "What were you thinking, treating me like that?". Still, 2 weeks out, she says it was worth it.

This past weekend we saw a bit of improvement, however, today she fainted in school while sitting in her wheelchair. That baffles me. I thought the fainting was only when standing up, sympathetic nervous system, blood pressure etc? This is new, and it isn't good. The one explanation I can muster is to think she overheated, as she did have her winter coat and scarf on, indoors. Still, it's not a comforting feeling over here. Next week is the tilt table test, and new orthotics, so we'll see how that goes.

In the meantime, wheelchairs, help on the stairs, and limited movements while trying to add in some isometric exercises from PT.  Plus she has started taking more medicine. Of course we hoped to avoid that, but Aleve was about as effective as water, so she is trying Meloxicam in the morning, and 1/2 tramodol to help get through a half day of school. Voltran gel applied, topically, to the neck. Even a little aromatherapy from a www.BeanTreeSoap.com  essential oil rollerball. We'll try anything that may help.

This is another day in the life with EDS.