I have POTS too the heat can its issues with me as well. I do have a cooling vest myself and I am an adult. Your son can get prescription for one and have written in his IEP (individual Education Plan) that he can wear it. Also may help if you look into possible weekly IV saline infusions if he is symptomatic. I have found it helpful for me and I get year round. I get 2 liters weekly. Some medications may be helpful.
Two good sites to look into for more information is www.dysautonomiainternational.org and www,dinet.org
Hi! It may be that your son needs to increase sodium along with water intake. Sodium helps us absorb the water. Electrolyte drinks are very helpful also.
Wearing a cooling vest outdoors can really help with the heat.
I have an 18 yr old son with POTS.
Hi enzymelover, he has Gatorade with added salt, unfortunately he has to wear a school uniform. But he also feels the cold even on a hot day.
Has he been tested for small fiber sensory neuropathy? I may be mistaken, but I think this can cause temperature sensitivity symptoms.
Just a thought.
No he hasn't, I have not heard of that, what does that entail?
I believe there are several tests performed to come to that diagnosis. One is a thermoregulatory sweat test, and a QST; Quantitative Sensory Testing.
I'm sorry, I don't know much about it. My son never had these tests either.
Not very many clinics do these tests. Do you know if there is an autonomic disorders lab anywhere near where you live?
Not that im aware, we live in New Zealand and it was Jakes heart surgeon that diagnosed him with POTS after his last surgery. Im not aware of anybody else with POTS, tho im sure there must be somebody in New Zealand with it. I just thought it was part of POTS because of the poor circulation of the blood through the body.
Heat causes veins to dilate and open which can increase fainting, so summer months are brutal, more salt and Gatorade are needed for sure. Trust me I faint almost every time I am in the shower with warm to hot water. I am on a medicine to constrict my veins to stop my fainting. I have POTS, I just got diagnosed 6 months ago. I am 25 and my symptoms started at age 16 it took a Cardiologist and a Tilt Table Test to finally prove it was POTS this whole time. Poor circulation is a problem with POTS, I have to wear compression stockings or socks due to blood pooling issues in my legs and abdomen.
Thanks for your comments, you sound very much like my son. Roll on winter!!!
Scotti, I'm sorry, I was not aware your son had had heart surgery. In that case, you are probably correct that it is a blood circulatory problem, or perhaps venous insufficiency worsening your son's symptoms in hot weather.
If iced water doesn't upset his stomach, colder water might has some benefit.
My son tried Midodrine, a vasoconstrictor, to improve his standing ability, but it did not work for him. However, I suspect he has a problem other than dilation of veins.
How long does the IV saline help you for? I have thought about doing this but have heard some people do it daily b/c it doesn't last long. And I don't want a port or a PICC (forgot exactly what this is called). Is there anything else mixed with the saline?
Thanks all for ideas. The problem to, as I was reminded this morning, as it was a very cold one for this time of year, is how cold he gets in the winter months and has the same problems as the heat. How quickly I forgot! So yet another day of school. But have now got permission for him to wear long pants to school, as the uniform is shorts summer and winter. His specialist is very keen to try IV saline but unfortunately my son has a very real fear of needles and refuses to have it done, even though he knows it would make life a little better. I have heard it does help but of course I cant force him too.
I will ask his specialist about a cooling vest and check it out on google.
Hi would your specialist know of someone who test for POTS in Auckland. I have suspected for 2 years know that my 14 year old sons has POTS. symptoms started with dizziness excessive tiredness fatique, blue coloured lower legs, sore stomach, chest pain . flushing of face very much like amalar rash. He is quite debilitated by this and has extensive testingfor lupus but all negative. I just need someone that could help him. He gets quite depressed and anxious because he is so tired. His dizzy spells disappeared but have now returned.
Hi Mian01, my son was diagnosed by his heart surgeon at Starship. Im not sure off others. He is under a paediatric specislist at Base hospital.