The process to find his diagnosis of dysautonomia took about 3 years from the first time his symptoms showed up. He started having dizzy spells and what we termed as episodes where he would almost fall but not faint. Sometimes he just seemed to stumble, but more was going on inside his head. His vision would go black from the sides toward the middle and then he would catch himself as though hit awoken from being asleep suddenly.
We talked to his doctor about it and got sent to different specialists as well as blood tests for things like diabetes and thyroid to try to find the answers We had ophthalmology check his eyes to see if there was anything going on with his eyes. All clear. We got an EEG to see if these were seizures, but tests indicated this was not the case.
The beginning of actually getting a diagnosis came the day that he had three near fainting spells within a half an hour of each other before school one morning. Only one of these followed the usual pattern of being dizzy after standing up. The other two he had already been standing for awhile, but after talking to the doctor we realized the trigger had been stretching to get something up high. Before this his pre-syncope had only happened once every month or two. Three so quickly together resulted in me taking him straight to the emergency room call Children’s Mercy Hospital.
We spent most of the day there as they ran tests to try to narrow it down. The intern asked if I had ever heard of pots. I had heard of it. My best friend from my early years of teaching has it. But I never thought of it as being what my son might have. when the doctor himself came in and was talking about it he seemed to avoid the word, but I straight out said do you suspect this might be pots. He said that was in the possibilities and he referred us to cardiologist at the hospital.
The cardiologists that we needed to see, the one who specializes in POTS take several months to get in to see. But we went to another cardiologist at the hospital who did an echocardiogram and a poor man’s tilt test. The echocardiogram came back showing no abnormalities which was very good to hear.
The poor man’s tilt test is laying down for certain amount of time and then sitting up and standing up without support for a certain period of time while the heart rate is monitored and the blood pressure is monitored at certain points. He didn’t set off major alarms with this, but they did refer us on to dr. Lindsey Malloy Walton, who is known as the Pediatric Specialists for POTS in the area.
In the meantime they also had him wear a heart monitor for a month to see if they could catch any of these episodes. My poor 10 year old dealt with it as well as anyone could. The clunky monitor was a pain to hold onto especially since he doesn’t have pockets in his pants most of the time. The stickers used to connect the wires from his skin to the machine hurt his skin. We even asked for the sensitive skin ones and they still left welts if we left them on for too long. We moved them around as much as we could within the area that they needed to be in. They weren’t able to catch any episodes on the monitor.
Eventually we were able to get in to see Dr. Malloy-Walton. After she examined him she said he doesn’t have pots yet, but he’s young. I think she was meeting that since he has not hit puberty yet that sometimes when children hit puberty things can change.
Increasing his salt and fluid intake became our solution at that time. Part of the issue with him having dizziness and fainting spells is the drop in blood pressure. Increasing fluids can help to increase the volume of blood going through his system. Increasing salt helps to reduce the permeability of the arteries so this holds more of the liquids inside the blood vessels. so both of these together will help have more liquid circulating through his body and hopefully keep the drops and blood pressure from happening as much.
I bought lots of salty meals and he added salt to his meals and salt on his popcorn, but it still wasn’t enough. We tried several types of salt tablets but these upset his stomach.
After hearing from many different people on Facebook groups we decided to try salt sticks with vitassium. I was happy to find on their website that they have a small discount for people with pots and free shipping if you order over a certain amount.
Salt sticks Are actually a with a powder inside. Shaynen loves to open the capsules and eat the salt inside. This led to me trying to find a different, cheaper, powdered salt for him to eat, but could not find one that did not upset his stomach. So he continues to take or eat the salt sticks.
The salt sticks and extra salt and fluids help for a while, probably about a year. During that year we kept increasing as we needed. He usually just more for a time when there was extra activity or stress. But by the time we got back in to see the doctor again we realized he was taking 20 to 30 of the salt sticks a day.
This was not ideal situation either for the money it cost or for his body. So she started him on florinef. That’s the generic 4 fludrocortisone I believe. This is a medication that helps him to retain the salt. So he still needs to take salt tablets. He takes two each day, and more if stress or physical exertion is increased. This has proved to be a good solution for him.
This change was about 6 months ago and he is going strong most days. We have also started homeschooling and living in our RV during that time so his amount of stress has been drastically reduced which seems to help as well.
Hopefully we can continue on the present course and maybe go off the medication at some point but at least we have him feeling good for the most part.
Here is a recent post about our day to day life dealing with dysautonomia. A different type of tired
For more information about dysautonomia in general check out Dysautonomia International.
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