Kyler

This sounds worth a try for my son since I found out that the high niacin content in G2 has vaso dilation effects. I read about the Nuun and it has more sodium than gatorade as well. The Gatorade focus has the most sodium but still 7 g of sugar/serving. If you were a child, would you like nuun?? LOL. Just Kidding. Has anyone let a child in their life taste it? If so what did they think? Where is the cheapest place to buy on line or in a store? Thanks for the info everyone. Serena

My 12 yr old son just got his POTS classified as Hyperadrenergic. Initially we thought that his POTS started suddenly from a growth spurt but once we learned the symptoms we traced them back to 7 yrs. old as the onset with no seeming cause- no major viruses or trauma. The growing just kicked into high gear. All the literature I read says that "if it starts early in life then it is more likely to be outgrown", "adolescents usually outgrow it", and his doctor assured me that he has a "Great prognosis" and even PROMISED me at his last appt. (as he was put on a beta blocker because he got sicker) that he would outgrow it??? i am trying to be positive and realistic at the same time. I hate the idea of a false sense of hope. I have been shedding many tears over this trying to figure it out. I know that everyone is different but it seems to me that alot of people on this site started with early childhood symptoms and are now grown ups with POTS. I also just read that you are much less likely to out grow hyperadrenergic POTS than the other kinds. What I want to know is if anyone knows of people who have outgrown it? What is the real percentage and of what type did they outgrow. This is making me very upset because my son at 12 years old is trying to plan his future and he keeps asking me if he will be better. I told him that for now he should plan a "POTS" carreer and a "Not POTS" carreer so that he will be prepared either way. Kyler's crying Mom, Serena

My 12 yr old son has had symptoms that we didn't know were symptoms since he was 7 yrs. old - he started with red sore legs after showers and what we called motion headaches-severe head pain with positional change only,heat and exercise intolerance. No major illness or trauma of any kind in his life-the occasional stomach bug or cold but not in relation to onset of symptoms. Symptoms got much worse this May after a major growth spurt (4 inches in 4 months) and 6 months of concerta for what we thought was ADHD - turned out to be cognitive manifestations of POTS. First major symptom in may was HR of 220 w/ blurry vision and dizziness and it has progressed from there. Seems to be no other family history except that I have some symptoms that I didn't recognize until I learned about this-I am pregnant right now but plan to get tested after the baby comes. He has Hyperadrenergic POTS and no other apparent causes like EDS or anything.

The spoon story made me cry for my son. The dyna kids web site explains it with a set number of marbles instead of spoons. I just hope he outgrows it. He has already said things like "I am tired of being tired" - he says that he is tired every single day -all day - it stinks. He had his first migraine from an eye exam the other day and he threw up from it. He has told every person that he has come accross about it since and keeps saying "I hope that never happens again". I said many many prayers that it was a one time deal but we will have to wait and see. I'm sorry to hear that you are feeling so miserable. The only question that I can answer for you is that the salt tabs made my son throw up and have diarrhea. We decided against florinef for him as well because of the potential harsh side effects. Instead we nearly obsess over fluid intake - we shoot for a gallon/ day (he is 5'9 1/2 and weighs 180lbs. @ 12 yrs old) and his POTS doc said that if he drinks enough fluid it's OK if he urinates alot and we can slow it a little with 6,000 mgs of sodium. He said that florinef is just a fluid retention aid. I work on an ambulance and i see many patients that take meds to counteract the side effects from other meds and becomes this huge web of badness ( if that's not a word-it should be). Don't get caught in the web if you can avoid it. Good luck and i hope you feel better. Serena

I was giving my 12 yr old POTS boy G2 because it only has 7 grams of sugar compared to 14 grams of sugar per serving in regular gatorade-they both have the same sodium content - 110 mg/serving. I read an article about POTS that said that niacin is a potent vasodialator. My husband and I spent several hours in walmart comparing gatorade content and searching for low fat high sodium foods for him take in his 6,000 mg of sodium/day. What we dicovered was that G2 has a large amount of niacin in it - 20% of your daily intake PER serving which means that you get over 50% per bottle. I was shocked and felt stupid for giving my child a drink that was counteracting his vasoconstricting midodrine - he was drinking 3-5 bottles a day. We finally figured out that the Tiger Woods gatorade is the best - it's called Focus BUT of course it's a little bit more expensive (like 20 cents/quart of the bottled) but it has NO niacin, only 7 grams of sugar and more sodium than all the other gatorades--135mg/serving . It's "Focus" ingredient is called L-Theanine and everything on the net says no side effects have been reported since it came out in 1964 and it reduces anxiety and calms your mood?? So far so good. Hopefully they will make it into a powder so it will be cheaper. We use regualr gatorade right now (powdered) and we are stocking up on Focus whenever it goes on sale to use when he starts back to school. I just wanted to share what we learned about the niacin. This POTS stuff has proven time and again to be very complicated!!!

My 12 yr old son has POTS (recently classified as hyperadrenergic) and he complains of his legs itching and tingling when he stands still for too long and his hands and arms also if he hangs them by his side. His cardio doc says that this is from the blood pooling - apparently everyone feels it differently. It makes sense that you might feel this because after a workout your muscles are engourged with blood in order to regenerate and heal and that perhaps because of your POTS the blood may have a hard time getting back into circulation.

My 12 yr. old son (5'9 and 170lbs) take midodrine for POTS. He started with 5 mg 3 times/day and he said that he felt so "clear" and he could understand me better. He had the goose bump/tingling side effect for 2 days and then that stopped and so did any feeling better. His doc increased it to 10mg 3 times/day and that has been working much better but it seems to wear off at about 3 hrs so we might add 1 more/ day when school starts. The side affects have resolved just occasional goose bumps. His cardiologist says "it's safer than aspirin".

Thank you all for your wonderful responses. It really helps me to understand what Kyler is going thru. I will definitly take your advice about lists and I think that designating an assistant in each class will help him to remember to write things down as well. What you all say about how intelligent you are but this "hides" it - that is exactly what happened to my son last school year. He went from excellent test scores without having to study to bombing many of his tests. I had many many parent teacher conferences and I discovered that part of the problem was simple like miss bubbling the bubble cards (I hate those things) so he would get the first 15 questions right and miss all the rest. They were nice enough to rescore them and he would get "A"'s in the end. In rembrance of that i put it in his 504 plan that he will not have to do bubble cards anymore-they take a significant amount of concentration and makes a test take twice as long. I couldn't understand how he knew all the answers while studying at home but then he would get a low score on the test even without the bubble cards and now I know why. He is such a dynamic intelligent child and I just hope that being medicated and hydrated will help this school year. It's rathers funnny that you said that the smart ones diagnose themselves and push for a specialist. I met a girl yesterday while i was teaching CPR and she told me that her friend had similar symptoms to POTS and NMH/syncope. She went to the same cardilologist that I took my son to first (the ignorant one) and they did a TTT and dignosed her with a "disorder of inconveniance". NO OTHER NAME. WOW. I guess it is inconvenient but really they stink at what they do and I am going to tell them. They deperately need education. I gave her my son's POTS specialist's info to give to her friend.

I am requesting everyones help-the more explainations the better. I don't have POTS and my 12 yr old son just got diagnosed in June. He struggled thru school all last year - very uncharachteristic- and it got worse as the school year progressed- as did his POTS symptoms that led us to this diagnosis. He has had mild sympyoms for 5 years but growing 4 inches in 4 months made it much worse. He is starting school again in August and I just did a 504 plan for him and hopefully I covered everything but what my husband and I are trying to decipher right now is what is "brain fog" and what is 12 yr old forgrtfullness/not paying attention. We are trying to balance understanding this condition with trying to turn him into a productive member of society in the future. We have never felt this and we need to figure out when to hold him accountable and when to hold the POTS accountable for the "I forgot" line. I feel really bad for grounding him for his grades last year when he really may have forgotten his HW by no fault of his own all the time. We are starting to recognize good days and bad days and triggers but there is very little concentration and memory needed for the summer. If anyone can describe the feeling of brain fog and the varying degrees of forgetfullness so that we can understand it better we would greatly appreciate it. 12 year old boys apparently aren't good at verbalizing feelings and symptoms - it's been interesting --- "your crazy Mom - I can't feel my heart beating 200 times/ minute" or " I don't feel pale" LOL. Thank you in advance for your help. You all are wonderful and I pray for all of your trials and that God blesses you the way that you have blessed us with support and comfort. Serena aka Kyler's Mom

My 12 yr old son (dx of POTS) is adult size - 5' 9 " and 160 lbs. In medicine he qualifies as an adult. His resting sitting HR -- 90-110 Laying down-- 70-90 (dropped to 48 on halter monitor while sleeping for short periods) morning standing--180-200 standing medicated and hydrated or after about 10:00 am--130-150 He says that he doesn't feel bad or feel a fast heart beat when his HR is elevated - only if there are other factors such as heat or activity . I don't get it. I can see his heart beating in his chest when it is high but he has no idea that it is going fast?? About the pulse pressure. The textbook BP is 120/80 so you are correct about the 40 mmhg distance being ideal. When my son had unexplained shortness of breath I took his standing BP and it was 100/88. I almost passed out. I am a medic on an ambulance and my training tells me that with a pulse pressure like that, he should be flown out by helo due to fluid around his heart called pericardial tamponade that is not alowing proper filling. They teach us that that condition will cause a narrow pulse pressure - they didn't teach us about POTS - big suprise right? His sitting BP that day was 122/68. I have been tracking it for a few months and the pulse pressure always narrows when he stands. Sometime the top number stays the same but the bottom number always comes up 10-15 points. I called his Cardiologist and he explained to me that POTS patients are at times lacking enough blood volume when upright(cuz it's all in their feet and legs) to fully fill all the chambers of their heart,especially the left ventricle that is the "last stop" before it gets ejected into the body. He said that this would cause narrow pulse pressures that would mimic a pericardial tamponade. Very scary to me. He told me to keep Kyler very very hydrated. Turns out that Kyler had a low grade fever that was causing even more pooling than usual that day. Tylenol fixed the problem but he said that if he ever gets any illness or dehydrated that it could cause the same thing.

My 12 yr old son has POTS and he started complaining of the same pain that you are describing ever since he got back from summer camp and his symptoms got worse. I thought it was temporary but his cardio said that it was from the POTS and it hasn't stopped since. I HATE the changing symptoms of this condition-it *****. It's much worse in the morning. He told me that if he stretches before he gets out of bed in the AM it helps a little bit. It is definitely worse (requiring motrin and tylenol) if he does any activity outside of the house the day before. It was very limiting for him some days - it's seemed like arthritis of the muscles - in a 12 yr old?? It has gotten less frequent with increased salt and fluid intake as well. We count his sodium very closely to achieve his doctor's recomended 6,000mg/day. If he is non compliant or too active he suffers from these pains the next day. Hope this helps.

I feel your pain but in a different way. My 12 yr old son just got diagnosed with POTS June 2nd. It consumed my life for a while but we are adjusting. I was accepting it but then it changed and then it changed again. It's really hard to accept something that keeps changing. I was also wondering if my friends and family were tired of hearing about it but I feel like I need to update them because they may have to babysit Kyler at some point when he is not doing well-I have a baby on the way. They don't get it. My best friends Mom told me that it's just a little tachycardia and told my husband at a family cookout that I was being overly dramatic and paranoid. I have gotten several replys like " he looks fine to me" or "all growing kids are tired". I have asked them how many times their adolescent has requested to go to bed at 7pm?? I have also showed some of them, like my parents, how to feel his pulse of 200 when he gets out of bed in the morning. I took him to the doctor 5 years ago because he was so tired and had what i now know is heat and exercise intolerance and they said that he was just growing and he was a little bit chubby. Then 3 years ago he started getting a headache only when he stood up after sitting and they said he was growing and he may be dehydrated. I feel like strapping a heart monitor to his chest so that people can see that there is a problem. I am thankful that he can stand and walk very easily if he is medicated and hydrated but outsiders don't see him sleep for 14 hours after just 1 hour of playtime in the pool. I am assuming and preparing for lots of issues when he starts school. It ***** that there are some instances where you have to explain it to people that don't get it and make them get it. I have been trying to talk about other things to my friends and family but everytime i talk about my son it pertains to POTS?? I figure Oh well for them at this point. I have listened to them babble endlessly about the most trivial things in the world so turnabout is fair play. That sounds mean but so are their comments. Hang in there and be strong.

My 12yr old son officially got diagnosed with POTS 2 weeks before camp. He had very few symptoms until it started getting really hot a few days after that. He went from like 4 symptoms to almost all of the symptoms.He went to 4-H camp on the 14th and i sent specific instructions that apparently weren't followed. He did Ok but when he got home he was profoundly exhausted like i had neverr seen before. He had a slight cough before leaving but i sent him anyway. Since coming home he has been sleeping 12-14 hrs/nite. Had intermittant low grade fevers,1 of which got up to 101F causing his BP to drop to 90/60 and almost pass out,muscle pain and weakness and shortness of breath(never had that before). I took him to his cardiologist and he said he might have a virus but his vitals are better than his first appt. thanks to the Midodrine. He said take him to his PCP for the fever and cough. We maintained lots of fluid and salt,and meds with no improvement. We had to see the PCP that we don't like and he was a jerk as usual and had no clue what POTS was-he started the conversation with "so what's this condition your son SUPPOSEDLY has". And when I explained it to him and told him why I can't give kyler certain meds. and what his limitations are he said "so how's he supposed to live out the rest of his life with all that?". It made me really upset and i decided to report it to his boss. The worst part is that he said that in front of Kyler. It also put the same thought in my head and now I am crying about it again and wondering if Kyler is sick with a germ or if this is our new reality??? The bad doctor gave him an antibiotic and said it might help or it might not. i guess we'll see-just started it yesterday. Kyler just said for the first time to his cardiologist "I really hate being limited". We decided to take him out of boy scouts as well because of the physicality of it. He got bored during the meetings anyway. He said he's tired of being tired. All in all I think that we are realizing that this is life changing for our family. I thought that I had it under control but then it keeps changing??? How do you establish a routine and have a plan if the problem keeps changing?? It feels like it's progressing really really fast. I'm so sad for him and for me and mad at the world for not understanding and throwing myself a pitty party:( .....Sad Serena

WOW!! Thank you for sharing that. That hurt but it was very inspiring at the same time-it brought out tears that I have been storing. My son just got diagnosed with POTS . I didn't think that it could be this hard to deal with once the diagnosis was made. I hope that it gets easier.

I have the deepest sympathy for those who have gone years without a definitive diagnosis. We only went three weeks thanks to internet resources such as this site and Dyna Kids. After a PCP that was concerned but had no knowledge of what was causing my son's symptoms and 1 ignorant cardiologist we found Dr. Hasan Abdallah in Northern Virginia on this site and he is an angel sent from God. He specializes in peds. cardilology but I found out in the waiting room that he sees adults as well because he knows that he is rare in this specialty. From the start of his appt. I knew we were in the right place because they did orthostatic vitals without me asking them to. I started with telling the doc that I was pretty sure that he had POTS and he said "you are very right" - (he pointed to his vital signs) and said "your son has POTS, this is not normal heart rate for anyone - good job, you diagnosed him well". I started crying because I knew that things were going to improve. The super scary part was that he asked my son to take his socks off and stand up after laying on the bed for about 15 minutes and his feet turned PURPLE-really really purple and his hands were blue when they hung by his side. I never saw anything like it. He always wears socks because his feet are always cold and clammy. It really made me SEE his symptoms for the first time-more obvious than tiredness and elevated HR. He also showed me the echocardiogram of his heart that when he was laying down his left ventricle was 3 times bigger/full of blood ready to be pumped, than when he stood up. That was really freaky too. He explained that all his blood was in his feet when he stood and therefore his heart didn't have as much to work with. It was all very amazing and overwhelming at the same time. They did a TTT yesterday and the doctor said that he compensates really really well. He said that if my son was a girl that he would be passing out every day. He said that males compensate better for the pooling because they don't have progesterone. He said that it will probably get worse before it gets better but that he should grow out of it ? Does anyone know of people that have outgrown this? The internet says that you can but from the people I have talked to here it sounds more like remissions and relapses of sorts. He prescribed 6,000mg of sodium and "lots of fluid" and midodrine 5mg 3 times/day. The pharmacy here didn't even have it in their computer-they had to order it today. I'm excited. I never want to see his feet and hands purple again. The best that I can tell from the articles that I have read and the Dyna kids brochure the actual amount of water should be a gallon and a half/day? I read 8-10 glasses(8 oz.)/day for normal people plus 2 liters if you have POTS - I thought that 64 oz.'s is a gallon. That sounds like a whole lot-does that sound right or am I misunderstanding? My son is 5'9" so he is grown up size but I don't want to flood him. He is supposed to go to 4H camp on the 14th and I am freaking out (pregnancy hormones making me cry) about not being there to make sure that he is OK. I have an appt. to talk to the coordinator on friday to explain everything and I know that they accomadate disabilities but I am still worried. The good thing is that when Kyler saw his purple feet he FINALLY believed that all of this is real and not "normal" as he kept telling me. I hope that when the meds start working that he will feel a big difference. Thank you all for your wonderful encouragment and support. I told several people in the waiting room about this site so they can hopefully join in and get the same-they all had the same story and struggle for answers that everyone here has. It's really crazy that these conditions are so mysterious in this day and age.

That is very encouraging-I will pass it on to him. He still thinks that I am crazy for even taking him to a doctor. He told me "if you quit chasing me around checking my pulse then I promise not to die". He keeps saying that this is "normal" for him.I told him that I know that he won't die but I need documentation for the doctor and I need to figure out his bodie's triggers and see if the salt and fluids are working-so far it helps-he stays around 130-150's standing when hydrated. First thing in the AM he still goes 160's to 180's but he says he doesn't feel it? I keep telling him that normally a person's heart rate doesn't jump 60 to 100 beats when they just stand up. Hopefully the specialist can explain it to him and he won't think that I am crazy anymore. We are also going to a specialist in fairfax. Did you see Dr. Abdullah? He was the only one listed on this site for Virginia. As far as your career goes, that's awesome that you were able to do all of that. I do mostly EMS because I'm a medic in our dept. and we still supplement the Volunteer fire dept. but the fires that I have fouhgt have been awesome. I was also raised military-my guess is that it was impossible to find a decent military doctor for this. All I had as a child was asthma and they screwed my lungs up permanently by mistreating that. I'm feel really blessed to have good insurance-we don't even need a referral most of the time. My husband just got out of the Navy last year but we used civilian insurance even when we had tricare. Thank you for the info. and encouragement. Feel fre to pm me if you want to talk more.

Jump, The "fasting" part of checking your glucose level is done mainly so that food doesn't affect the level but I do know that serum blood sugar levels are affected by the amopunt of fluid that you take in. I work as a medic on an an ambulance and one of the treatments that we give for people with high blood sugars is we flood them with normal saline to dilute their sugar level-it changes fairly quickly when you add fluid-the same as drinking fluid would. Not all of them have signs of dehydration. I have also learned and seen first hand that the body reacts to traumatic events by dramatically increasing or decreasing blood sugar levels. My Dad is a diabetic and his endicrinologist says that the most definitive way to check for diabetes is to do an A-1C test which without fasting is able to get an average blood sugar level over the period of several months? Don't quote me on that time period -You may want to look that up. That 1 test could save you from more fasting glucose tests. Another thing that because i have had problems with low sugar is I bought a glucometer for $5.00 at sams club (they are not all expensive-the strips cost the most ,about $1 each)no perscription required, and I check my sugar every now and then at different times of day. Now that i am pregnant i do it about 1/week to make sure it's not high either. Just some suggestions. Hope this helps.

Good News, I got an appt. with the specialist for June first. I'm really happy that it didn't take forever. You guys are really helpful and I feel supported already. I'm going to push for the TTT but i think that this new guy will probably want one anyway since he specializes in this. Is this test scary or could it be to a 12 year old? I'm worried that he may pass out and be afraid. I'm a little bit confused? In reading peoples diagnosis I am wondering if POTS and NMH go together ususally. It seems like most people have both. I read about both but it kind of sounded like NMH is a symptom of POTS. Is this true? I read up on both conditions and I am hopeful that Kyler will outgrow this by his mid twenties. Just a side note-we found out that we are having a girl today-and so far at 22 wks. she looks healthy. I read that this could be genetically passed on and that 80% of sufferers are women. Does anyone know what the possibility is that the baby may develop it? I don't have it and neither does my husband but I'm not sure about my sons paternal side of the family.

Thank you both for your encouragement. I told him that this is not his fault and that we - the important people in his life - love him amd know that he works hard to " be in shape" as my son says and that the doctor doesn't understand. As far as I can tell there was no illness that sparked the symptoms. I think that the cause may be a growth spurt of about 6 inches in the last 3 years-like his body can't keep up. Other than this he has been as healthy as a horse. I just remember taking him to the doctor about 2 years ago for "motion headaches" that only occurred when he stood up - he would grab his head, yell, wait a minute and then he would be fine. I think that they were his first symptoms-around that time he got less interested ion playing outside in the summer heat and his stamina decreased. I am calling the specialist today to get an appt. His web site says that he is a peds. specialist in all areas of autonomic dysfuntion. Thank you again.

Hello Everyone I have been reading many many of your posts for the last 2 days and i have learned alot. I think with all this info i really just need a little bit of support and encouragement. Maybe a few answers also. 2 months ago my 12 yr old son said that his heart was beating really hard right after sitting in the car and when i checked his pulse, it was too fast to count so I dorve to the rescue squad 2 minutes away where i work so that i could check it and within 1 minute it dropped down to a normal range. I took him to the dr and she said "keep an eye on it"-I checked it several times (mostly while sitting) and nothing until last Saturday. He told me several times in the morning that every time he stood up he felt dizzy and his vision went blurry but i ignored him cuz he's a drama queen. Around noon he walked into the kitchen after sitting on the couch for about an hour and he almost fell and he said "I can't see you Mom". I felt his pulse and it was racing-I used a pulse oximeter that i have for my asthma and it read a HR of 220bpm. I almost passed out!. I had him sit down and it immediately dropped to 110 - I took his BP (I'm a carreer Firefighter /medic) and it was 140/80 - I told him to stand and his HR shot up to 213 and his BP dropped to 110/40. I called the Dr and she said keep him sitting and quiet and I'll call a cardiologist on Monday and she said don't give him any more Concerta-thinking that it was the cause. I checked again Sunday morning and his HR would only go up to 150-180 when he stood up so i spent the first part of mother's day crying because i am 22 weeks pregnant and i thought that my first baby of 12 years was going to die. We saw the PCP on monday and they did and EKG laying and standing and the rate increased 50 beats and his pressure dropped 14 points with a narrowing pulse pressure. They made a stat appt. with a peds. cardiologist @ the university for Friday - more tears insued throughout the week as he maintained a rate of 140-180 upon standing and I realized that it wasn't the Concerta- he is however asymptomatic at these rates? So on weds. I found info on the net (thank god) describing POTS. This explained the last 2-3 years of my sons life. Symptoms that i never put together - headaches upon standing ( we labeled them "motion headaches")the PCP said it was a growing issue uncharachteristic fatigue w/ exercise and requesting 7 pm bedtimes at the age of 10,11,12, never standing still ,anxiety, intermittant stomach problems, excessive thirst, major heat intolerance,constant clamminess. So the cardiologis said "his heart looks healthy and it sounds like autonomic dysfunction" i said I read about POTS and he said "oh yeah that posssttural ....... ortho something". I finished the definition and asked him questions about it and he said that Kyler's fatigue is a "lack of conditioning" and has nothing to do with this problem and that it was OK for him to maintain a HR above 150 on a daily basis. This would not stress his body at all. He just needs salt and water. He did not order any tests other than a halter type monitor to "make sure it's not SVT" and that if the results were clear we didn't have to come back. He would not call it anything but autonomic dysfuntion? Sorry this is getting really long. I feel better reading all of the posts on here because it sounds like a lot of people have gotten the "your just out of shape"comment from doctors. I was just really sad for my son because he said that in front of him and he has tried really hard to be in shape. He is 5'9" and he weighs 153 lbs down from 160 lbs - he has ridden his bike 1 mile a day for six months for a boy scout project and he is beat down tired after it but just as proud as can be. I think that I found a specialist from this site but it's 2 hours away - OK by me if he's good. I realize that my son has a mild case compared to many others but i was really wondering what everyones experiences are about long term prognosis? Treatment for increased HR being the main component for him? What to tell his school/gym teacher-he got "F"s for "lack of effort all year? Should i push for a TTT for definitive diagnosis or just let it ride on symptoms? How important is it to figure out the exact cause of the POTS-I read that there could several causes? Could he actually be used to a HR of 180 b/c he said he couldn't feel it and he wasn't dizzy? Sorry this is so lenghty but my head is reeling over all this in addition to my pregnency hormones making me crazy. Thank you in advance.