Kyler

I read that people with significant pooling can have it because of EDS affecting their viens. My son doesn't appear to have any other symptoms but he pools REALLY bad despite 10 mgs of midodrine every 2 hours. I was wondering if you could have EDS with no real obvious signs. He has never dislocated anything either. I am asking based only on the severity of his pooling. Thank you, Serena

Thank you all for the support - I feel that God called me back to this support group as I began to struggle with this again. I just found out yesterday that I am pregnant - that really explains the extra emotions. I feel like that is another sign that God is with us. We bought a cheap WC last year and I almost felt like I was jumping the gun (he wasn't nearly this bad) but it really did allow him to do more and I'm glad that I did. He gets VERY purple legs and he gets sweaty and blurry vision (near passing out) but I have trained him to sit down when this happens so he has never passed out - He can stand still about 2 mins. and walk about 10 mins. We live in a very hilly place and Kyler weighs 215lbs so I have though about trying to get him a power scooter plus he thinks that they are fun. I am going to talk to his DR. about it. I have never had him tested for anything like allergies because he has no classic symptoms like sneezing, runny nose or anything like that. His POTS DR. is wonderful and he feels that we can link onset to a virus at age 7 and a worsening due to his normal teenage growth spurt. He said that we don't need to test for any other causes because he has no significant symptoms of any other related illnesses. His decline each year seems to correlate directly to the rise in temperature. Last year we had a 2 foot snow blanket until the 2nd week of Feb. and he dropped off a cliff with his symptoms the day that it was rained away - the temp. increased 10 degrees and didn't go back. We were considering leaving that church anyway because it has changed in a not so good way. We live in a very small town so most of his friends go to that church with us and are in the youth group but that's OK because Kyler makes friends very easily. It is the same lack of education and unwillingness to understand that I have found from doctors - I plan on educating the church but we are still leaving it. Janie, It is VERY comforting to hear that your son is doing better. It is SO hard to see the light at the end of the tunnel when it is so dark where we are right now. Thank you all for your support and encouragement. I will pray for all of our boys and girls that are struggling and their parents too. Serena

My mother switched from Lyrica to Savella to treat fibromyalga. She switched because she felt like Lyrica was making her gain weight. She felt that it worked just as well as Lyrica for the achy symptoms. The only problem was that shortly after starting it she began having hand tremors. She was taking a myriad of psych meds and BP meds at the same time but going off of it fixed the tremors. That's the only person that I know that has taken it. Hope this helps. Serena

I TOTALLY feel your pain and fear and panic. My son got diagnosed with POTS when he was 12 and he has had a gradual decline over the last 2 years as well. His DR. says that it's because of the rapid growth at this age and most articles say that the average age of diagnoses is 14-15 because that's when the symptoms are the worste. I reccomend going to google and typing in POTS articles or POTS and Dr. Grubb ( he is a leading DR. in POTS). I also suggest going to the physician list on the main DINET site and find a POTS doctor nearest you. It is SO important to find a Dr. that understands this condition to avaoid the wrong treatment. There are people that fly here from spain to see my son's doctor and i have spoken to others in the office that come 4 or more hours away to see him because there is no POTS doc in their area. That's proof that it's important to me. I drive 1.5 hours to see him and i wouldn't have made it thru with the ignorant attitude at the closer university hospital near me. I'm goin to PM you with my info. Hang in there. Serena

My son was 12 when he was diagnosed with POTS and when he started his first beta blocker (acebutolol) I thought that he was going to die - it made him SO much sicker - he had headaches, obscene BP of 160/112, extreme fatigue - we tried it for 2 weeks and then switched to metoprolol (it was like night and day) which worked well for a year and then quit working so now he takes betaxolol. his doctor explained that each BB has different "specialties" such as rate control or BP control and different side affects so don't be afraid to play with the dose or ask to switch to another one. If you have a good POTS doctor then they should work with you to find the right one. When they put kyler on mestinon we ended up in the ER because his HR dropped WAY low and he was having muscle spasms. The only way to figure out if it's the med or a change in condition is by trial and error. Good luck. Serena

Hopefully some people remember us but it has been about a years since I posted. Kyler was 12 when he got a dx of POTS and now he is 14 and 6'2 1/2. This forum literally helped me keep my sanity as we went thru the process of acceptance and discovery involved with chronic illness. It got easier as we settled into the daily grind of managing this crazy condition. The baby is 18 mos. old now and I have a little more time now. Kyler has unfortuanately gotten progressively worse over the last 2 years as he has grown like CRAZY. He is to the point that he can only walk around for about 10 mins. at a time and he goes to school for 1 class a day and does the rest on homebound. Having him classified as special eduaction was the best thing we ever did - he has become an honor roll student again - amazing what blood flow to the brain can do. We have adapted and overcome and Kyler is such an AMAZING and resilient young man. Historically Nov.,Dec.,and Jan. have been wonderful months for him and this time I almost forgot that he was sick. The Grim reality just set in the other day as he started his downward spiral yet again starting last month. I am feeling very anxious as I wonder yet again how we will adapt to "worse". To top it off his youth group at church just kicked him out because he can't come to Sunday school EVERY Sunday and he can't participate in all activities (I argued to no avail). When I told him he said "I feel so betrayed". So I cried (where he couldn't see me) and I will be leaving my church of 9 years and writing a letter like no other to the minister. I don't get it. In the mean time we are just waiting to reach the bottom of the roller coaster and start our way up again. I never thought that I would pray to hurry up and get to rock bottom. It's funny how life's experiences change your perspective. Anyone have an idea or experience of the general age when boys with POTS stop growing and start getting better? Glad to be back, Serena

CONGRATULATIONS!!! Sounds like you are doing really well. God Bless you and your little one. Serena

My son has had bouts of anxiousness for years but we didn't know that he had POTS - just a general worrier over both good and bad events. He has gotten counseling which helped so we didn't medicate. The new issue is that he startles very easily so at night he will hear a noise that the house makes or that the dogs make and it startles him either waking him up or if he is a little bit awake from insomnia and then he can't go back to sleep for several hours sometimes. Once he gets that shot of adrenalin he can't go back to sleep - the doctor says that he has too much adrenalin to begin with so it's worse. I spoke to his cardio about it and he said that we could consider an SSRI but I think that is a bit extreme because he has no depression of any kind.He is very upbeat and perky most days - at least by mid day. I think that an anxiety med like ativan or xanax only when he needs it would be better. My thought is to leave a pill on his night stand that he can take if he has one of these moments. He has this problem about 1 or 2 times/week - the other nights he sleeps really well. My concern is that he could become dependant on it or that he might get a 'high" from it and want to duplicate it regularly - I worry. But he needs something and SSRI's scare me with teens but so do benzos and narcotics etc. (I work on an ambulance-I've seen it all). Maybe I need some too-LOL. Even though he is adult size - 5"11.7 and 218lbs. he still has the unstable hormones and such that seem to interact with SSRI's. What do you all think from personal experience? Have you tried xanax,clonopin,ativan etc. and how did it make you feel? ( I tried to teach him meditation but at 13 he wasn't very receptive/good at it - he said it was boring.) Thank you again. I haven't told you all lately how awesome you are and how much comfort, knowledge, and piece of mind you give me through this support group. I feel very supported!! Thank You a Million times!!! Serena

I check my son's BP frequently and his bp ranges from 110/98 which is called a narrow pulse pressure because the 2 numbers are very close to 160/120 which in normal people is very alarming. His POTS dr. assures me that this is OK. He explained that adrenalin is what your body kicks out to compensate for the issues that POTS causes and that raises ypour BP. Also if you take any meds. such as midodrine that will raise your BP. The Dr. says that BP fluctuates in POTS pts. so it will not cause permanent damage like chronic high blood pressure does to others. Worry Not as worry can raise it even more and cause a whole myriad of other symptoms. I am considering an anxiety med for my son right now. Take care, Serena

My son started sitting down in the shower several months ago - he says it has nothing to do with POTS but his legs turn super barney purple every time he showers. Last night he almost passed out in the shower and now he says that he is scared to shower again. I can see why you would want to skip it when possible - It seems very taxing on the body of a dysautonomia sufferer.

I just need to vent and maybe get some pointers for my poor baby boy. He had 3 good months and now he is not doing so well. He started growing again - he is 5'11.7 now - He turned 13 at the end of January and it was all downhill from there - we had to postpone his bd party due to copius amts. of snow and when his party came around he couldn't even eat his bd cake because he was so nauseated - I cried9not in front of him). It's not fair. He is missing his teenage years because of this stupid, annoying, REDICULOUS,#!$@&%* illness!!!!!!! I'm so sad for him. He has every POTS symptom except for migraines THANK GOD - he just has annoying position change headaches every day but not severe. The chest pain and GI symtoms have been the most difficult to deal with. We are supposed to fly from VA to CA for his spring break and I am so scared that he will get worse and feel bad but he is so excited to go. I read several old posts on flying and it scared me even more. It's a 7 hr flight with 1 stop and no plane change. We already told him that he will need to wear his pressure hose and stay in a wheel chair thru the airport and he is very unhappy about that - he is afraid that people will stare at him and say things when he stands up and walks. He was doing so well 3 weeks ago and now he can't even do a wal mart trip without several breaks and then he is sore the next day. We already do copious amts. of salt and fluid. Flying Questions : Will a doctors note allow him to carry gatorade thru airport security? How can we get extra oxygen on the plane that some people talked about in the old posts? What works best for you (people with POTS) who have flown to reduce your symptoms during and after flying? Am I a careless Mom for not cancelling our flight plans even though Kyler has recently taken a downward turn? Should I cancel our trip or should I let him be a kid even though he might get sicker? ( he is very excited to see my sister and to go to lego land - it would crush him if we don't go) He almost passed out in the shower today. He got severe chest pain and he said that he felt like someone sucked the life out of him - he had to lay down for 30 minutes after and then asked to go to bed very early. He was very suprised and he said that he is afraid to take a shower again (not just in a boy way like before - lol). This has never happened before. His doctor is trying to get him feeling better but it's not working. He increased his midodrine to 10mg every 2 hours up to 6/day. His hands and feet turn barney purple in about 30 seconds whe he stands - the pooling has gotten a little bit better with the midpdrine. I can't figure out how he stays upright when I see his purpleness. I feel like he is getting closer to sycope. I'm so scared for him. I just want to make it stop:( Thank you for listening and for your advice in advance. Sincerely, Serena

Just a quick update. Kyler (still 12 years old for another month) is living at a "functional" level with his POTS as the doctor says. I haven't been on here in a while because i gave Kyler a beautiful baby sister (Elly Marie). I missed you all. Time just seems to disappear when you have a baby. I freaked out a little when her heartrate was dipping while sleeping at the hospital - I was so afraid that she had POTS. I realized that I am a little bit paranoid and the doctor said she is fine. Kyler has repeatedly said that he hopes Elly never gets POTS. Kyler is plugging along and the drop in the temperature has allowed him to do a little bit more outside. He still has good days and bad days. They gave him another TTT to see if the meds were helping and he couln't finish it out -he only made it 22 minutes before he got profusely sweaty and weak. I don't know how he does as well as he does day to day. We also got to see first hand why he had to quit playing the baritone. When he did the Valsalva test (blowing into the machine) his BP went into the 180's/120's. It was crazy. That would explain the headaches in band everyday. Hopefully I'll start having a little more time to socialize from now on- longer baby naps. Take care. Serena

Update Thank you all for your input and resources. I met with the Dean of Special Resources today-the new title for the vice principle (she used to be a special ed teacher) and she was very supportive and suggested that we start the 65 day process to classify Kyler as special education so that he can get any accomadations that he needs and maybe even do shorter days. She also said that she is getting a recliner in her room and Kyler can come take tests in it or on a special padded table that he can lay on if he needs to. She is so efficient that she said she would have the paperwork ready on Monday - she totally gets it. Kyler told me today that he realized that he needs to give up band. He plays the beritone and as so far he has not made it thru a whole band class without a bad headache even with motrin and tylenol before hand- he says it's not just the blowing but the noise. I cried about it last sunday because I feel like this stupid illness is taking things away from Kyler piece be piece (bike riding,boy scouts,beritone). She said we could replace band with a resouce class to help him with difficult subjects and give him time to do homework at school instead of trying to do it at home when he is wiped out. The conference with Miss ignorant english teacher got rescheduled for Monday. I told the dean about all of the issues with the ignorant teacher and she is going to help me address the issues at the conference. She agreed that many things were inappropriate and she said that we will make sure it goes better. I'm thankful that his other teachers are awesome - just 1 bad out of 5 isn't bad . I feel so much better now. Erik - temp is a super factor for him and the dumb english teacher initially didn't have her AC on in her class on 95 degree days-i took care of that as soon as Kyler said he had to ask her to turn it on. The daydreaming sounds like him. He has a hard time napping during the day even when he is exhausted - i think from the extra norepi - he is wired at school. Anna- he just got a laptop at home from my parents but he can't function fats enough to take notes on it so he uses it at home only but the dean told me today that he can use laptops at school to take tests and stuff. Jana- I have everyone involved but the english teacher has not been communicating with me and we had to wait to see how things would go since he was diagnosed right at the end of school last year. the dean of special resources and his guidance counselor have been great at coordinating everything. Brenda- he is still going full time since his insomnia has gotten better with the new BB and he is less exhausted with a lower/normal BP at the end of the school day. to everyone Thank you again for your support - you all are lifesavers yet again. Sincerely, Serena

I need inside info from the experienced POTS sufferers again. My son is not doing well in his first 3 weeks of school. He is failing everything but not for a lack of trying. His grades are very inconsistant - 92% on a vocab quiz and then a 60% on the test on the same material??? I have a 504 in place and all but 1 teacher is cooperating and trying very hard to help him but it's not working. When he studies for a test he knows it all but then he forgets it in school or maybe when he stands up-I don't understand. He used to be a good test taker. We just switched his meds and that is helping a little bit. I don't know what to do to help him. He is very mobile and can physically get around school and he "looks great". He has a very upbeat and positive attitude at school even when he feels bad so the teachers don't even know when he is having issues. They describe him as "wound up" or "giddy" but he comes home he is exhausted-I think he runs on the excess adrenaline until school gets out. He says that sitting in regualr desks feels fine to him (he has 90 minute classes) but I am wondering if he would retain more if he was reclined during class?? He insists that he doesn't want to do that and it won't help him ( I think that it embarrasses him) but he is like an alzheimers pt. - even at home. He is frustrated by his forgetfullness. His bad english teacher told him the other day that his memory isn't that bad and he just needs to "dig deeper". I didn't go and slash her tires but we are having a conference tommorrow and it's on like donkey kong!! She has said several things that have shown her lack of understanding and compassion and I'm going to school her. i have several articles and 9 months of pregnancy hormones ready for her. I thought that most POTS kids had to be home schooled because they couldn't physically get to or stay in school. I want to keep him in school if at all possible but have him succeed too. Is this why POTS kids get hoem schooled. Will it help if he learns at home or will he never remember 7th grade no matter where he learns it? How do I tell the school that we need to make MORE accomodations when his outer appearance and attitude is so good? Thank you in advance for any input. Serena

My son was born 5 days late , with meconium present, by emergency c-section, couldn't maintain his blood sugar, and was enormously long-22 1/2 inches - I'm only 5'3. No jaundice.

This is an excellent question. You describe exactly what my son feels as well. I have read so many different articles and they confuse me. Some say that all POTS patients have increased adrenalin levels and others say that only people with hyperadrenergic POTS has high levels of it. I'm a bit confused so I can't wait to see what the responses to your question are. My son's doctor did tell us that what seems like ADHD symptoms are actually "cognitive symptoms of POTS". He does seem more hyper when his symptoms are flared up-purple legs and such. He says that he is exhausted but he is hyper and anxious at the same time?? It calms him down to give him extra fluid sometimes. Serena

From a medical perspective we are taught that as your BP drops your body starts to "steal" blood from non important functions in order to put it where it needs to be. You should be able to feel your pulse in your ankle/foot pulse point until your BP drops below 80 but still feel it elsewhere and as it drops each 10 points after that you lose other pulse points moving closer to your core until the only place that you can feel one is your caotid(neck) pulse. Basically you lose proper circulation to you extremities first and your skin, which is why you get pale, and it works it's way inward from there. This lack of peripheral circulation is only a problem if it lasts for a long period of time - several hours. It's worth mentioning that this applies to people without POTS - if you have POTS then the blood sits in your extremities but there is still not enough for your brain so the body compensates the same way. My son's doctor told me that the first internal organs to have their blood supply taken in order to compensate is the stomach and intestines - hence the GI upset caused by POTS, and then the kidneys. All the blood that is shunted from these areas is given to the brain but it still may not be enough as you found out in less than 5 minutes. Your heart is also struggling to build up enough blood to pump out into your body which is what causes the narrowing pulse pressures - normal is 40 pts. between the top and bottom number. My son's BP does the same as yours but not as drastic lows. I can "fix" his BP with copious amounts of fluid- I read an article that said consuming 16 ounces of fluid in 15 minutes can raise your BP 20 points - don't qoute me on that but that was the just of it. You may want to consider chugging some water before you get out of bed in the am. Like filling up your empty gas tank before starting your car. There is gas in your car but it's in the wrong place in the morning. Too low really is when you feel bad. Hope you feel better and I hope this helps. Serena

We are taught in the medical field that a normal Respiratory rate is 12-20 or old school 12-24 breaths /minute. We also learn that your body breaths (unless you are a COPD(like emphysema) patient) to get rid of CO2 not to take in oxygen-all driven by baroreceptors in your spinal fluid and other places-it's rather complex. I can tell you for certain that every patient (over 10 yaers) I have seen breathing less than 8 times/minute was blue and Unconcious or nearly that way - 4-6 breath /minute is not enough to sustain life for most normal humans. 10-12 should be the slowest. That being said it is all connected to the nervous system and the brain. It makes sense that POTS-being a disorder of the nervous system could affect breathing as well. My son's cardiologist said that he has "air hunger" - explaining it as a shortness of breath not related to the lungs malfunctioning- because his heart doesn't have enough blood in it to pump enough oxygen to his brain and if he exerts himself his brain takes notice and tries to fix it. He measured his left ventricle and his inferior vena cava with ultra sound lying and then standing and both of them shrunk significantly when he stood up. I can only imagine that even without a change in CO2 levels that this could cause a person to "hyperventilate" to actually fix a gas exchange imbalance in it's earliest stages. It all seems very related to me. So maybe you breathing into your hands helps to fix it but it is still POTS related? Just a thought. The only thing that I would say was COMPLETELY out there was the 4-6 as a respiratory rate. Scary.

I hate to keep posting on here but the only thing on the web says that BB's Help headaches. My son has only ever had headaches with postural changes that go away shortly after standing. -Thank God. BUT... Ever since he started taking a BB's 2 weeks ago he has had a headache every day - just a mild one each day and it goes away with tylenol but annoying all the same. His midodrine has never caused anything but goosebumps. Is this normal? The side effects sheet didn't mention this and niether does the internet?? I have come to realize that POTs patients respond differently so have any of you had this problem? The only thing I can come up with is going from a constant standing HR of 160 down to 120 could feel different to his brain but his BP is better when standing now - sometimes borderline High - almost the same as sitting now - yay!! Sorry to keep bugging you guys. My sincere Thanks, Serena

Dear Elfie, I'm not a psychiatrist but I do have some life experience. It sounds like although your boyfriend is supportive at times that he is also a little bit stubborn and selfish. From the sounds of it he also has some control issues. I would be very upset if my partner signed a lease for a new place to live without consulting me - especially if I had a disability to consider. My son has POTS but i have asthma and there are definite issues to consider with both. If you have been together for 2 years he should know at least some of the accomadations that you require. The other very concerning part of this for me is when i hear and adult (even a young one) say "I got in trouble" for saying or doing something in reference to a relationship. If he gets upset because you ask him to clean up after himself or because you could get ill from lack of AC then he has some issues. Carrying a case of water up the stairs is a walk in the park for a healthy young man and my husband jumps on me for doing it myself and I don't have POTS. You have to decide for yourself what the best plan is but keep a few things in mind. The stress he causes you by being selfish or threatening not to pay the bills etc. could make you worse - my son is very sensitive to stress. So could you trying to follow HIS schedule and HIS eating habits to make HIM happy. There has to a give and take in every healthy relationship and it sounds like he just takes. At a minimum it sounds like you could be safer,healthier, and happier in a different appt. even if you stay with him. I recently gave up one of my best friendships because I realized that the benifits of the friendship were no where near the emotional cost of holding it together. I got 1 ounce of support for every pound of grief and criticism. It wasn't worth it. I am healthier because of it and I still cherish the good memories. Hang in there and let us know how it goes. Feel free to PM if you need to talk more. Serena

Valliali, Something similar happened to my son the other day but seemingly caused by the shower. His HR would go to the 160's to 200's from just standing up so he started a beta blocker 2 weeks ago. With the BB his Hr has stayed 120 standing and 80 sitting no matter what. He swears that it has a micro chip in it that controls his HR-LOL-kids. So he took a shower and when he got out he said that he felt really bad. His sitting HR was 63 and skipping beats and his standing HR was 100. They haven't been that low since I started checking it in May. It was very odd. we had him stand up and walk around for a few minutes but it didn't change for an hour and then it went back to 120, and 80. It was very odd???? Hasn't happened since. We live in Virgina and it gets both hot and humid here. He definitely does better with low humidity. I was also wondering about the Humidity/pressure. I heard many years ago that POTS could be made worse by the barometric pressure but i didn't know what POTS was at the time - one of my ambulance patients had it. Her parents kept saying that the barometer must be changing. Excellent question indeed. We are scheduled to visit my sister in California in the spring. We'll see if he improves or not.

I was wondering the same thing including massage, accupuncture etc. I can't find any info on the net about alternative rx of POTS. I was worried that the massage aspect could cause too much vasodilation and make it worse?? I would love to know if anyone has experience with these things.

Just an update on the gatorade "focus". We did a test run and it seems to help Kyler not to urinate all his fluid out as well as not hyping him up on sugar as much. The 135mg of sodium /serving also makes it easier to get his 6,000mg of sodium in. At this pont if they made it cheaper-like in a powder mix like regular gatorade-I would only give him the Focus kind. I am going to write to the company and see if it's in the plan. So far I haven't seen any ill effects from it-it doesn't have aspartame in it- just High fructose corn syrup and sucrose- no sorbitol either. I'm not sure he has ever had sorbitol. I have always kept our family away from artificial sweetners like aspartame. I'm all about good old fashioned sugar but in small quantities. I'm going to try the Nuun also though. The less sugar the better. Erik- the first time I had the "flushing" from niacin was at my PCP's office and she told me that it was my blood vessels coming to the surface of my skin to release heat which made sense when I learned that it was a vasodilator. That was the last time that I ingested it on pupose-I imagined that that is what menopause feels like. No fun.

Thank you all for your advice and support. I think that this will all be slightly easier to cope with once I have my baby and my hormones go back to normal-just 5 more weeks. Kyler is very excited to see his new baby sister. My husband and I are trying to let him explore his boundries but every time we let him be a normal kid and go to the pool for 2 hours or something he has a change in condition the next day. On Friday he did about 4 hours of mild activity with his friend and on Saturday his hands and feet were super purple all day and his BP was 140/102 and he felt like doo doo. I cried but not where he could see or hear. I felt a great sense of loss on his behalf of his seemingly normal childhood. The next day he was back to his "new normal" Thank God. The good thing is that he seems fairly unaffected and is more upset over the fact that I check his pulse and BP all the time and make him drink constantly. Kids are resilient like that I guess. I realized that I need to work on accepting it more than he does. It is comforting to hear that at a minimum his symptoms should ease up for several years. He is growing like a weed right now and never have I truly considered putting bricks on his head like I have recently.LOL. Thank you again for your input and especially the encouraging picture of your son dadofpotsSon. Once again you all have calmed my fears. Sincerely, Serena

I felt really really guilty when I first started reading about POTS because my son had so many compensatory habits that we didn't recognize. His symptoms started when he was 7 and we didn't know. He is a huge strapping young boy - 5'9 and 165lbs but he fot 'F''s in Gym class for the last 4 years and we told him that he didn't try hard enough. I called him wimpy when he said that it was too hot to go outside and I lectured him about my childhood outside in VA. Beach and how i survived. When he did go out in the summer he would sit and make a mud puddle with the hose and drive his matchbox cars thru it for an hour and come in and tell me he was too hot. He limited himself big time. He wiggled non stop in school from first grade (7 yrs. old) on and he drove his teachers crazy-always moving. He would get good grades with ease but they thought that he never was listening. It got really bad last year and his grades plumeted so we put him on concerta for ADHD which made it worse until finally we figured it out. In the last year he would always sit in a chair and lean foreward with his elbows on his knees or stand with his legs propped or crossed. He drank like he was in a constant state of dehydration-we joked around and said he had a "drinking problem" for years. From age 7-9 he would ASK if he could go to bed at 7pm several times/ week. I took him to his PCP and they said that he was "just growing" He was grounded almost the entire school year last year for "forgetting" EVERYTHING- I didn't know about POTS or brainfog. It all makes sense now. I wish that every child could be screened for this at a certain age in school.