looneymom

Good for you!

My son really struggles with doing mental math. Math used to be his best subject. It is so unfair what POTS takes from childhood and teenage years. He tries to do it in his head first but there are just those days, his brain is not working and he has to use the calculator to finish his math lesson. However, its always exciting to see those exceptional good days, when he just whizes through the assignment.These days are far and few between. Hang in there puppylove and don't feel embrassed if you have to use the calculator. My son does not like to use the calculator but he nor you deserve a failing grade because of POTS.

My son still complains of alot of pain all over kc. Our family doctor ran the test again for our cardiologist to see if these levels would come up. My son has been on an amino acid supplement since the first of April. The big improvement is that he is able to sit up and walk now. He has not went back to being bedridden. Thank goodness but the pain is still present along with shaking and tremors. The dopamine has stayed the same but the other came up only 5 points. Our family doctor and cardiologist think these low levels may be causing the pain, shaking and termors in his legs. He has been checked for fibromalagia with a blood test but is was negative. His cortisol has been checked and it was low. But since he was only 11 when the test was run, doctors would not do anything. In the last few weeks, I have seen signs of puberty, which is not helping with POTS symptoms. We just saw our cardiologist a week ago and he has recommended a new protein shake to see if this will raise his levels. He also told us that puberty can have a huge effect on POTS and to get ready for a rollar coaster ride.

I wish I understood this pain deal more. All I know is that is worse on cold days and gets worse after exercise. I was given a cd on progressive muscle relaxation to use with my son. A physical therpist suggested that we try it since a pain doctor will not seem to deal with this issue. These rough days with pain are bad on anyone. Hope you find some relief soon.

I love seeing my son have good days, it makes up for some of the really bad days. He seems to have more bad days on the weekend, so I really try to watch his activity level on Thursdays and Fridays. However, I can't control the weather fronts in Oklahoma right now, so some Saturdays and Sundays are just bad. He does exercise everyday for the same amount of time, right now he's up to 25 to 30 minutes a day. POTS is so unpredictabe, we just take it one day at a time. Be thankful for the good days and set limits and goals for yourself. When you reach a goal, it shows that you are making progress, no matter how small the goal is. Hang in there and just don't over do it.

My son was retested to see if these levels had come up. Dopimine levels are at 0 and Serotonin is at 21 but starting range is 81. He is already taking zoloft and an amino acid supplement. His meals are balanced but still not getting these levels up. Any suggestions? What type of doctor could help us with this problem?

Are you able to get some sunlight? Sunlight will help. Even if you can just get 15 minutes a day.

This is interesting. My son will have a horse voice and a sore throat part of the time. It comes and goes. He never runs a fever but feels more tired and complains that he aches all over. Sometimes he is flushed in the face and other times he is pale looking. What is the deal? I hope you have more responeses to your question because I would really like to know what might be causing this. Good question to ask!

After my son was strong enough to sit up, the next step for him was to ride a stationary bike. At MAYO, they told us to start with 3 minutes and do this 3 to 4 times a week. My son had to start with a minute and it was a slow ride with no resistance on. Every week, we added a minute to his ride. MAYO wanted him to be able to ride up to 60 minutes 3 to 4 times a week. To my son, this was boring, so we have strayed and introduced other forms of exercise which have helped condition other muscles. However, his biggest weakness seems to be with trunk, chest, and shoulder muscles, so we have started focusing more on this area. Our physical therapist has also caught on and is trying to figure out the best exercises to help with this area. It has been a challenge because the first time our physical therapist did these exercises with him, he was so wore out that he feel asleep on the way home after the session. These exercises were also done without weights. So the next session, she cut it way down and he did much better afterwards. My 12 year old son is willing to do anthing to get rid of POTS, so it has been a challenge to get him to listen and monitor his body. So no matter what form of exercise you try, don't over do it. I think variety is a key and helps keep a person more motivated to exercise.

My son was bedridden for 4 to 5 months. Our insurance allowed a physical therpist to come to our home 3 times a week. This was a life saver! When you first start to exercise do it without any weights. Your body will be adjusting and you may only be able to exercise every other day. My son and I learned it was much better to be slow and steady. When he first started to exercise, his blood pressure would fall out and this scared us all. So we monitored his blood pressure and sent his readings to the cardiologist. Our PT would call and talk to his nurse and let her know what was going on and one time our PT even got to talk to the cardiologist. His medications were raised up, which indeed helped. My son is currently able to walk 10 to 20 minutes on a good day but it has been a long haul. Hope this helps and be sure to listen to your body.

Do what your body will allow you to do. My son was bedridden for several months and he had to start by doing exercises in bed. Do your best to stay well and avoid sick people with a cold or virus. He is now able to walk 10 to 20 minutes on a good day. He is not able to do this everyday. He rotates through a different type of exercise program everyday depending on how his body feels. For instance, he might sit on a posture ball and play on the wii, which works on upper body strength ( games like boxing or tennis, fruit slicing on xbox). Exercising can be boring but it is essential for POTS recovery. Listen to your body and don't feel bad if you have to take a day off.

I have taken my son a few times to the ER. He was always sent home because his vitals were in range and he was not dehydrated. It's a horrible sight to see your son rolling in pain and they say it's just all in his head. However, I did meet an ER doctor that did give some sound advice about a year ago. He understood that POTS was unpredicatable. His advice was if you could tolerate the symptoms at home, than don't come to the emergency room. He was right. It's better if you can find a doctor with a nurse line that will you back. Sometimes just kind words and a listening ear can be more encouraging. Hope this helps.

So sorry to hear about your situation. Glad you found a doctor that was good and understanding. Tomorrow will be different and hopefully much better.

I have read alot about why exercise should benefit a person with POTS. Exercise stimulates many different systems in the body, which brings me to the conclusion, that you really need to be able to recognize when to stop. My son is just now able to stand up for 20-30 minutes a day and play on the xbox connect but it took him 10 months to get to this point. He would like to be able to play longer but when he does his tremors and shaking may suddenly get worse again. I wonder because of his age (12) if hormones has anything to do with this and if too much exercise will over stimulate the hormones. So for the time being, I monitor his exercise time and his heart rate. Exercise has definitely benefitted him because he was bedridden for almost 4 months. Exercise can be boring so he does change to different exercise activities. The varation helps keep him exercising everyday. All I know to suggest is not to overdue the exercise and skip a day if you need too because you may run your body futher down if you don't give it a rest. My son was only able to exercise a couple times a week and had to build up to doing it everyday. Some weeks he still has to take Wednesday off because of how he feels. Hope this helps.

Thank you so much for sharing this Lenna. POTS is a nightmare. I am glad your son is doing much better and has been able to get back to a much more functional life style. You have given me hope for the future. Thank you

My son has been wanting to lose some weight. So I asked our GP what I could do for diet. He suggested that he stay on 1800 calories and keep it balanced. So he has been losing 1 to 2 pounds a week. He eats protein at every meal with a fruit or vegetable and sometimes both. He has lemon in his water and also has a protein shake 3 times a day. This shake is mixed in 6 ounces of fat free milk. What is amazing is that his mood is better, he does not tire as easily, and he is able to think clearer and focus on school work.

Thanks for your response Jangle. It has almost been a year since my son's diagnosis and he is improving. But it's just not fast enough for him. As parent, it seems to me that POTS is robbing him of his childhood. Its too bad, doctors can't find a quicker or instant cure. I know alot more people on this site would be jumping up and down for joy.

Please be careful. My son had a procedure back in August and gave us a big scare. His blood pressure kept dropping and the doctor had to administer meds. before they could go any. further. However, when my son woke up, he shook so bad that he had to be restrained. This has never happened before. My husband had a nurse write down what our son was given so we will be more prepared the next time he has to be put under for another procedure. My suggestion is to keep a list of meds. that you are sensitive and try to avoid them.

Christy, could you explain to me what MCAS is. I have seen this term mentioned on this site before and have wondered what this condition is.

My son is 12 and does have POTS. His was a classic textbook case. It started with a virus and went down hill from then on. It sounds like your child has some of the symptoms and needs to be evaluated. My son was evaluated by MAYO but there are other places that also do this evaluation such as Vanderbelt and Cleveland Clinic.

I have read articles that state this is possible. My son really gets discouraged and wants POTS to go away. As his mom, I keep encouraging him and remind him that he is doing so much better than a year ago. If someone has a son or daughter that has outgrown POTS, my son and I would love to hear your story of encouragement.

I see this alot of the time in my son. I know that lots of things affect POTS but I really wonder about hormones and emotions. When you already have POTS, you really don't need anything else on top of it. Some days he wakes up fine and other days he wakes up shaking and unable to walk. POTS is a rollar coaster ride at our house.

My 12 year old son has POTS. Last school year I was teaching full time and my mother stayed with him. However, my son's condition got worse this past summer and I made the decision to quit my job. The only thing that matters is that he gets better. I'm sure that your mom and boyfriend feels the same way. Hang in there and keep smiling. It helps if you have family that understands you illness. Keep working with your doctor and keeping doing some type of exercise. Exercise stimulates glands, hormones, heart rate, blood pressure and many other things in your body. Exercise will help but don't over do it.

At least every month or every other month my 12 year old son wakes up with a rash on his face. He has been tested for lupus and it's negative. The rash appears on one side of his nose with raised red bumps in a swirly line.Sometimes there is also a line that outlines the rash with the rashed bumps inside. Whenever this rash appears, my son has more trouble with his vocal tic, shaking, termors legs and complains he hurts more. Is this a flare of POTS or is the rash an indication of an underlying disorder? He woke up very sweaty this morning with this rash and has had a rough day. Also wonder if this has anything to do with adrenal system?

At least every month or every other month my 12 year old son wakes up with a rash on his face. He has been tested for lupus and it's negative. The rash appears on one side of his nose with raised red bumps in a swirly line.Sometimes there is also a line that outlines the rash with the rashed bumps inside. Whenever this rash appears, my son has more trouble with his vocal tic, shaking, termors legs and complains he hurts more. Is this a flare of POTS or is the rash an indication of an underlying disorder? He woke up very sweaty this morning with this rash and has had a rough day. Also wonder if this has anything to do with adrenal system?