Pots?!?!

[Dragon]

This is about my son who is 14 years old and having many of the symptoms that similar to POTS.

Dizziness,

Fainting

Almost fainting

Ringing in the ears

Disorientation

Can't run straight when he is having these symptoms

Diarrhea

Bright lights

Floaters

Anxiety

Brain fog

Sweating

Over heating

Heat sensitivity

Leg cramps

Exercise tolerance is very low

These are the some of his symptoms.

This all started three months ago, he fainted after the basketball game. He went to the ER and they diagnose as syncope and send him home. It was very hot at the gym and we just though that he was dehydrated and over heated from playing basketball and think nothing of it. About month later during basketball practice he fainted again. This time the temperature wasn't that hot but he was on a plank position so his pediatrician though that his blood was rushing towards his head and he forgot to breath and fainted. We took him to the ER again and ER doctor recommend us to taking him to the cardiologist.

He had about 10 EKGs, all sorts of blood tests, Echo cardiogram, 24 hrs halter monitor, event monitor. All came out normal.

Last fainting episode happened June 15th when he was at high school basketball try out. He fainted and we took him to the yet another ER. His coach tells me that both his arms and legs were shaking. I asked him if he can remember all the events of that dat and he said yes. But he could not control the shaking.

After that we took him to the neurologist and he had sleep deprive EEG and came out normal.

Right now, none of the doctors know what's causing his symptoms.

All the test results comes out normal.

He is very active 14 year old boy who loves to play basketball, tennis, and every other sports.

He was named outstanding athlete of the year at his middle school.

He is so sad and upset and why he can't play the game with same intensity as before this all started and why any of the doctors can't find what's wrong with him.

I need your help. Please tell me what I can do for my son. The symptoms only happens when he is playing basketball and when the weather gets really hot while he is exercising. I know as parents I can tell him to stop playing but he loves the game and wants to play for his high school team.

We have try everything and now we are trying acupuncture and oriental medicine to help him.

We are really worry about him starting high school. we don't want to add addition stress to his current condition.

Please advise me so that I can find help for my son.

Thank you

[Raisin]

Perhaps you can try the poor man's tilt table test where he lays down for awhile (10minutes?) Someone please correct me if I am wrong. Take his pulse and then have him stand up. Again, take his pulse at 1 minute , 3 minutes and 5 minutes. If his heart rate increases by at least 30 points, he may very well have POTS. I also believe if it goes over 120, that would also indicate POTS.

Perhaps seeing one of the docs listed on this site may be helpful also. They already have a knowledge of the different forms of dysautonomia. I saw Dr. Jaeger at the Cleveland Clinic (not on the list?) and he has been very helpful.

Sometimes young people can get POTS, usually after some type of illness (such as Mono) but the good news is that most young folks have a good chance of it going away in time. Treatment is very helpful. It has gotten me out of bed and running errands. With my dysautonomia, I have heat intolerance and I know that playing basketball would certainly increase the body temp,. I also don't sweat enough which also contributes to heat intolerance.

So, saying all that, it's obvious that I'm not a doctor (lol) so I am merely telling you that perhaps going to see someone that is well versed in dysautonomia is a cool next step. I wish you both all the best.

[Katybug]

The poor man's tilt test is useful but it would be more accurate to see if a doctor is willing to order a true tilt table test. That is usually the definitive testing to determine things like POTS or orthostatic hypotension. It is not unusual for dysautonomia patients to have completely normal cardiac testing except for the ttt.

It can be discouraging to have so many tests come back normal and yet be so ill. Unfortunately, many of us have had to go through quite a few doctors before finding one that was familiar enough with dysautonomia to recognize it.

As Raisin suggests, you might try getting to one of the doctors on our physicians list as they are familiar with the different forms of dysautonomia. Here is a link to that resource :

http://dinet.org/index.php/physician-list?view=physicians

[Dragon]

Thank you Raisin and Katybug for your advise. We did called one of the doctor from dynainc.org web site and currants he is on the waiting list. Earliest time that doctor can see him will be some time around September. Meanwhile, he is feeling little better and now practicing about hour and a half of basketball a day. Only symptoms that he is showings are diarrhea, fatigue, and excessive sweating. We are just happy to see him with some energy. Thank you again for your help.

[SarahA33]

Hi Dragon,

I'm glad to hear that your son is feeling better and that you have an upcoming appointment with a specialist.

When he was brought to the ER after his episodes, did they happen to get a blood glucose level to check for hypoglycemia or a Basic Metabolic Panel (BMP)?

[Dragon]

Hi SarahA33. I am not sure what they did during ER visits but I will go ask his pediatrician about it. All the test results were sent to his pediatrician. Thank you.

[Katybug]

Hi Dragon,

I make this suggestion because I wish someone had told me this at the beginning....even though it's a pain in the neck, I have learned to request a copy of all of my lab results so I have them and can provide a copy to each new doctor I end up seeing. It allows me to ask questions and research any issues. It also allows new docs to see exactly what has and hasn't been done and what has been normal and what has been questionable. If you start seeing multiple specialists, it is easier than having to call each doctor's office to provide a new doctor with all the information.

[SarahA33]

Hi Dragon, That's a great point that Katie brought up about keeping a copy of all your sons lab results. I've found most doctors will actually make a copy of the labs at the office when they go over the report with you if you ask them, and if the tests were done in the ER, I've called the hospital and asked for medical records for instructions on how to obtain them. I also like to have copies of reports from specialists that I've seen.

Wishing you and your family all of the best!

Sarah

[Dragon]

I have some questions for all of you. My son only has above symptoms when he is exercising. Is it possible to have POTS and not affect his everyday living. He hasn't had any problem going to school. (He just started summer school last week.) Also he can run about 2 miles and play tennis for about hour and a half without any symptoms except muscle cramps around his leg. I guess we will know more when he goes to see a specialist this fall but sometime I feel like he has POTS and some days I am not sure. But one thing is that we need to find what is wrong with him and help him get better. Thank you all for your help and advise. Have a wonderful weekend.

[Katybug]

He may not have POTS but some other form of dysautonomia. I have a friend who is usually fine but occasionally has an episode of orthostatic hypotension. It often happens when she is in the heat being active. Most days she's just fine.

[Dragon]

Hi All. I need some supports. My son was doing really well until last Sunday. He was so pale and feels so over heated that he can't even walk or stand up. Now his having sharp pains in low left calf. I don't know what's causing it but it could be all related to current problem. We when to a urgent care for his leg and had his orthostatic test done. His reading was 121/68 laying down, 114/72 sitting and Standing 112/91. He felt unbalanced when he stood up. The urgent care doctor wants him to get TTT done as soon as possible. Finally, someone is pushing us toward the right direction. It's been a good and sad day at the same time. Thank you for listening...

[Katybug]

Did they verify that there isn't a blood clot in his leg?

[Dragon]

They did X-ray on his calf and see if any thing is wrong with it. I don't know, can you see a blood clot by X-ray?

[Katybug]

I could be wrong but I believe it usually takes a doppler study which is an ultrasound of the veins in the legs to rule out a clot. You might want to call your family doctor and at least discuss it if the pain hasn't subsided.

I'm really sorry you are all going through this but he's lucky to have you in his corner.

[Dragon]

Is it possible to get POTS from HPV vaccination as side effect? My son received his third vaccine on the April 9,2015 and got his first symptoms and syncope on the 18th of April. I have read an article from standinguptopots.org indicating that it's possible. Now days boys are recommend by doctors to get vaccine it. I am so worry that I might of caused this horrible symptoms to my son by giving him the vaccine. Should I report to the doctor about it? CDC? Please advise me with it. Thank you.

[corina]

Like Katie suggested you may want to contact his doctor when the pain hasn't subsided. Also I think it is important to report your findings re the vaccination. I'm not sure how it works but think that every possible side effect is worth mentioning. As I'm not in your country I don't know about CDC. Best wishes to your son, hope he will feel better soon!

[looneymom]

Dragon

I would say something to your doctor. If you research, you will find other incidents related to this vaccine. I will not give it to either one of my sons.