Kyler

I hope the prayers worked and you are OK. Do you have an answer yet?

I finally mustered the courage to put this on here after reading Tuesday's post about feeling aslmost normal in the winter time. I did the same thing with my son - on his first bad day this year all I could say to myself was "I almost forgot that he was sick" - it sent me into the same mourning period as when he first got sick but with some added vengance against summer time(I was 5 months pregnant when he got sick I and am 4 months pregnant now 2 years later)- anger is certainly easier to handle than sadness. A bit of history - we live in Virginia and last year was the hottest summer ever and we were new to this and we didn't cope well - He got very depressed - we have a plan for this year. I have never publicly shared any of my poetry because it didn't pertain to others but seeing how many people feel the same way about this on here gives me reason to share - THANK YOU all for your strenth and courage and sharing of such an emotional experience in your lives. This is about my 14 yr. old son with POTS. I Almost Forgot November, December, January - what wonderful days they are The oppressively hot Summer seems so very far Frolicking through the snow that others hate with a passion Put the spring back in his step in a seemingly odd fashion The sadness and the worry were replaced by so much joy And I almost forgot that he was a very sick boy Sweet fruitful spring, how I used to love you so With your gentle inviting coolness and the joy of watching things grow But now I despise you - not for what you have done But for the dread that you insight over a battle that can't be won "Hurry up and fix the riding mower Mom, It's almost too late" He prepares for the onset of his unavoidable fate Headaches and fatigue with a constant stomach ache "Mom, I don't know how much more I can take" I Curse You vile malicious summer time! The way you ravage his precious body should be a crime Last year you broke his spirit and robbed him of his hope But this year will be better because we have learned to cope Hurry back old man winter with your theraputic snow So I can see my sweet boy smile as he waits on the ground below Kyler's Mom

I feel the way that you do about my poor boy. I almost forgot that he was sick this winter - other than reminding him to take his meds all day it was almost like normal. I didn't have to take his BP and HR to make sure that he was OK, he didn't miss ANY school for 3 months, and he could do anything that he wanted to outside without coming in in a panic feeling like he is going to die from being overheated. Even though I prepared for it because it happened last year, It hit me very hard yet again as I watched my baby boy be let down by his broken body. I started to despise spring because that is how it starts and it just goes downhill from there. I laid on my bed crying, mourning the loss of my son's childhood for the second year in a row. I wrote a poem about it and that helped a little - I will post it on here if I can muster the courage - it makes me cry every time that I read it. I just had to vent my frustration at the devilish heat of summer. I am surely thankful that he had some good days but just like all good things, I long for so much more for him. Praise the Lord for giving me the wonderful, loving, and positive young man that he did. It's so hard - I feel for everyone on this site that suffers from this disabling frustrating illness. Every time the heat comes back and he gets sicker it almost feels like starting over from the beginning of the illness. I am working thru the pitty party as I do several times a year when his condition changes. I am thankful that God comes with me to these parties. Hang in there tuesday and everyone else - Fall will be here before we know it. Serena

That is SSOOOOO awesome - thank you. Super expensive but super cool - I'm going to start saving now - overtime here I come. I'm guessing that no insurance company would ever cover that? Does anyone have any advice on how to get insurance to cover a mobility device?

We ordered a super cheap manual WC for my son last year for outings. He can only walk for about 10-15 mins at a time in a climate controlled environment and even less in heat. This makes it very hard to do normal kid stuff or even go to wal mart for him. Initially he powered it himself but it caused him a lot of fatigue as he got sicker and now he is 14 yrs. old and 6'3 and weighs 220lbs. so it is hard to puch him on anything but flat concrete. We got a handi cap placard and he uses scooters at the stores that have them but he has already been approached by a wal mart employee in my abscence asking if he "really needed to be in that scooter". In as polite a way as I could muster once I tracked her down, she was educated on POTS. This is one of the reasons that I want to get him his own scooter - he can not go shopping at lowes with his Dad because they don't have scooters, he gets exhausted going to school just 1 class/day and I think that not walking around would help, he can't go anywhere that doesn't provide a scooter unless I rent a he man or take my husband (we live in a very hilly area). I am getting ready try and get the insurance company to pay for a scooter or power chair but I am not getting my hopes up because I read that they only provide one if it is needed in your home to function - apparently they could care less if you can leave your house - RUDENESS. It makes me mad that morbidly obese people can get them but sick people can't. This whole illness is an injustice!!! Sorry I lost my thankful for a moment - the summer is torturing my baby again - I loath summer and it is going to suck even more without transportation for Kyler. I may have to do a family fund raiser for him if the insurance doesn't come thru. Bottom line - the wheel chair definitely helps Kyler last longer energy wise in public but not if he self propels it - walking or standing just saps it right away.

My son was dx with POTS at age 12. I feel your confusion and pain. It was a long process of learning and acceptance and it still ***** when his syptoms change every few months. Being a medic and understanding HR and his asystole that you mentioned I am VERY shocked that they put him on a beta blocker. "Someone with a HR of 53 should never be given a BB" - this comes from the lips of my husband's doctor - my husband has high BP but his resting sitting HR is in the the upper 40's to low 50's so they gave him a calcium channel blocker that will not affect his HR nearly as much. If your son was on my ambulance with a resting HR less than 100 and I gave him propanolol I would get fired. My son takes a BB because his HR goes up to 200 when he stands. His lowest HR was 43 for a very brief time on a holter monitor while he was sleeping but never that low when he was awake. Another thing to keep in mind - if his BP is dropping upon upright posture his body will raise his HR to compensate and to a certain extent this is good and can prevent him from passing out - if we lower Kyler's standing HR below 130 he gets blurry vision and dizziness - with the new addition of florinef he can tolerate a standing HR of 110 but any lower and his body can not fix the lack of blood flow. Upright HR of 90 is not very high - that's close to what mine is and I don't have POTS. About the asystole - from my first hand experiebnce (12 years on an ambulance) the only people that typically stay in asystole are the ones that have had a cardiac arrest with progressive heart muscle death. There is a drug that we give that actually induces asystole in order to stop a bad rhythm called SVT - it lasts anywhere from about 1-20 seconds and it is scary every time but they always come out of it. Kyler was dx with ADHD at age 7 and in hindsight that is when his symptoms really started and the adderall really helps with the brain fog. Concerta put his HR at 220 which is how we found out that he had POTS but Adderall does not affect his HR at all. It also helps with low BP by constricting his blood vessel - he takes a 10mg time release in the am and one in the afternoon. The best decision that I made through this whole thing was to get him on a 504 plan and then we progressed to classifying him as special education simply to make it easier to get him what he needs - he does partial homebound, goes to school from 1100 - 1:40 pm and he sits in a Ninja gaming chair in class which allows him more blood flow to his brain and he has been on the honor roll all year as opposed to nearly failing everything for the last 2 years. The school provides his own air conditioned bus and anything else he needs - I feel that my tax dollars are there to make sure that my child is successful in school. You can find info about this on the dyna kids website. PM me if need more info on this. Good luck and we will be praying for you and your son.

Has she had the genetic testing to figure out which type she has - it seems that they can very specific on the type? How many POTS symptoms does she have? My son had excess urination from POTS but no electrolyte imbalances as far as we can tell. Like Mack's Mom said, the poor mans Tilt table test is a really good indication that it could be POTS. From everything that I have read here it seems that POTS could accompany any other ailment or be a stand-alone disorder like with my son.

I love this forum. It really helps me see the other side of the fence when I feel like my side is the only one that *****. I have been struggling with how to make my son's life as normal as possible and allow him to do as many things as normal kids do. He got really depressed last summer because he couldn't get out of the house due to the heat - we tried an air show and he made it for 1 hour and then he almost passed out. I came up with a plan that may help some of you all enjoy your children's events. We are making a modified cooling vest and cooling blanket. It will be reflective on the outside and have pockets for blue ice packs on the underside. He can sit in a lawn chair and essentially be covered by ice while he enjoys the air show, tractor pull, football game etc. He can't play football but he wanted to watch his best friend play but it was too hot. We plan on having a rolling cooler full of extra blue ice blocks as well so that we have more time. This requires extra hands and planning but is worth it for his enjoyment and socialization. We are also working on getting a scooter since he can only walk short distances. As far as the daycare issue - I stayed home with my son for the first 3 years of his life and that was great but he got too attatched and he hated anyone that wasn't me and anywhere that I wasn't. My daughter has been in daycare since she was 8 weeks old and she is much more accepting of new people and situations. It's like night and day. She has learned so many neat thing that I didn't have the time to teach her - It has been great - we are actually planning to send her there an extra day each week when she turns 2 for the experience and socialization. I have also learned that time apart really does make the heart grow fonder as well. It sounds like you are a very caring Mommy and that is what is important for your kids - My Dad always said it's not the quanity of time but the quality that you spend with your kids - that has held true even to this day. Good luck and hang in there. Serena

Sounds like you may need to find a new Doctor- you need a doctor that understands that POTS changes like the weather and therefore the treatment needs to be adjusted with said changes. It's common medical knowledge that most people would feel bad with a BP that low. My son took metoprolol for a year and it worked great for his HR but his BP started dropping too low after a year of being fine so his POTS doc switched him to Betaxolol immediately and the problem was solved. If your BP is too low then your abdomen will not get the bloodflow that it needs and that may be why you can't eat. His doctor said that there are a myriad of beta blockers to choose from and some are better at rate control where as others provide more BP affects. Your body increases your HR to compensate for low BP - that could explain your heart racing. Kyler is on his 3rd BB in 2 years and this one is a charm... for now. It has very apparent that some meds make him feel much worse so we had to stop ,change doses, or change type on several occasions. For example - mestinon worked great on his HR - TOO great - it got to a normal people HR which was WAY too low for Kyler's body to fix his blood loss from pooling in his legs - it took away his body's natural ability to compensate for the pooling and we had our first POTS related visit to the ER. Florinef didn't work last year in May but 2 weeks ago (he has gotten worse since then) we started up again and it is the miracle drug for him without making the insomnia worse. Good luck.

If you google his name you will find lots of info about him and his life's work. I have only ever heard good things about him but fortunately we have an awesome POTS specialist in Virginia where we live. Good Luck - I'm glad that you finally got a diagnosis.

That happened last March and he has been on that regimen for over a year now and it is working very well. Kyer's doctor said that he has apatient that takes it every hour in order to funtion. Kyler still has intermittant nausea but mostly only in the am when he needs to eat. He still has abdominal pain every time he tries to eat a large meal - as a teenage boy that is almost every day. The pain is not severe and it goes away when he sits still in a recliner. After 2 years of his diagnosis he has not had any tests other than a TTT and an abbreviated autonomic lab test that was completely non invasive - he has not even has a blood test from his POTS doctor. He has no signs or symptoms of anything like EDS or anything as well as no family history. I used to wonder if there was any other causative factor after all of the research that I did but now I realize that there is not any - it's the classic presentation of POTS and there is no need to do testing to show that the blood flow in his body is all jacked up and that causes malfunction of all of the other body systems. The brain, the gut, and the skin all fight for blood and oxygen and the brain always wins then the gut gets the leftovers and Kyler always looks like a ghost because his skin always looses. His muscles ache because they don't get the blood flow that they need and that causes fibro like symptoms and the exhaustion comes from the ever present battle to normalize the body and the body always loses because the auto pilot is broken. Kyler's doctor does not typically diagnose POTS pt.s as having FM, CFS, IBS or any other related illness because he has learned from many years of experience that it is almost all caused by the effects of POTS even though the symptoms seem like other illnesses. He must be onto something because people come from other countries just to see him. He has fixed the majority of Kyler's symptoms just with POTS treatments and without involving any other type of doctor (other than his PCP). Sorry for the tangent but I feel bad for people that get every test in the book and get no relief. I hope that this helps. Serena

I know that if you take midodrine it causes major gossebumps and that side affect has never subsided for my son but he never complained about it.

I am a medic on an ambulance and they teach us in medic class that a "narrow complex" tachycardia with a rate greater than 150 is considered SVT. I have seen people with a rate of 180 have a BP of less than 80/40 and on the verge of passing out. SVT rarely goes above 250. Rates that go above 250 are typically not a narrow complex. As I have learned since my son got diagnosed , people with POTS have adapted to be able to handle a higher HR than the rest of us - especially the kids that have it. If you have a reason (like POTS) to have a HR higher than 150 then it is not treated the same was SVT is. SVT is caused by a malfunction of the sinus node in your heart whereas a high HR in a POTS pt. is caused either by your body trying to compensate for the blood loss from the pooling or by some other contributing factor of POTS. Everyone has a threshhold at which their body can no longer maintain it's BP as a result of a high HR. If your HR is too high it can not deliver enough blood and Oxygen to your brain and it makes you lay down by making you "pass out". Hope this helps.

Mestinon did not improve my son's symptoms and sent us on our first POTS related trip to the ER because it dropped his HR WAY too low. It also gave him muscle spasms, major pooling, diahrrea, and Chest Pain. It took 4 days to build up to this. Perhaps his para is working better than most. It sounds like lots of others have had luck with it - perhaps it helps adults more that kids. Good Luck.

The only experience that I have with this is when my mother applied due to fibromyalgia and arthritis. They made her go to their doctor and a psych exam and they still denied it the first time but they approved it on the appeal. I have heard it from more than one person that it appears that they always deny it on the first round just to see if they can eliminate the less persistent and timid people that won't appeal it. I would probably take some really good articles about POTS for the psych doc that can prove that this is serious and real just in case they look at you like you are telling them that your pigmy goat vaccuums for you. Good Luck. Serena

What you describe is exactly the way my son manifested early on in his POTS journey. It is opposite now because his pooling has gotten worse each time he grows. His Dr. said that his body was compensating by throwing out massive amounts of adrenalin from the hyperadrenergic response that Julie talked about.

My son got worse suddenly last year with really bad abd. pn. and nausea every time he tried to eat. He lost 5 lbs. in 2 weeks and couldn't even eat his own BD cake because he felt so bad. His POTS doctor said that most POTS related GI issues are from poor or disrupted (like when you stand up) blood flow to the GI tract. He increased his Midodrine dose from 10mg every 3 hours to 10mg every 2 hours and it fixed it instantly the next day. The crazy thing is that he went from having a BM 5 times a day to being constipated the next day as well so now he takes colace but that's better than having abd. pain and nausea. It also helps when he eats with his feet up. Apparently the intestines require A LOT of blood whenever they want it in order to work properly-so selfish. His doctor feels that the symptoms are POTS related so he doesn't do all of that extra testing because he knows what the results will be from his extensive experience. So far he has been right and Kyler hasn't had to endure any invasive testing at all. Best Wishes in feeling better. Serena

I'm going to take him to try on that sports wear that you guys talked about - that's a good idea. He desperately wants to be an athlete...I cried about that one many times. That may make him feel "cool" to wear athletic clothing. I am also going to talk to his doc on Mon. about the EDS testing. He is a great doc but he doesn't believe in extensive testing on kids with no blatant signs of underlying illness but when I see Kyler's legs when he gets out of the shower he looks like a dead person that has dependant levidity - if you've never seen it look up pics on the net - it's so bad -it's like the deepest purple with bright red blotches. I can't fathom how he stays upright - accoring to the doctor testosterone has at least 1 good purpose in this world(LOL). Although this ***** I am actually thankful that Kyler is not a girl because the doc said that he would pass out every time he tried to stand. I feel for the ladies that have this. His legs even turn purple when he sits now and his arms if they are below his heart. Crazy. Naomi, Kyler's doctor judges the pooling by the TTT results and at every visit he makes Kyler lay down for 10 mins. and then stand and he just looks at the color change - you can really see it if you push on the skin to make it blanch like checking a sunburn. There are other tests but the color change is the most visible. Thank you all for the great ideas. Serena

Kyler tried it when he was 12. (repeat from previous flroinef post) It helped him with his BP dropping drastically when he stood. The problem was that it wired him to the point that he only slept for 2 hours /night for the 2 weeks when he was on it even at a very low dose like 0.025. It certainly decreased the fatigue but now he only takes it when he wants to have a sleepover so he can be like normal kids and stay awake. He started going crazy from lack of sleep. I think that we may try it again because he is much worse than he was the last time we tried it. I am going to take victoria's advice and try nibbles first. We started at 0.1 and worked our way down the last time. Kyler has to take 10mg of midodrine every 2 hours to get a benifit from it so the doc figured that we would start high with Florinef - lesson learned. Mason's dad, I caution you to be very observant when trying new meds. There are so many options and it really is a trial and error but we have had some not so good times with meds. The first beta blocker we tried debilitated him to the point that i thought that he was going to bed ridden - we found that it simply lowered his HR to a normal person's and that was too low for him to compensate for the orthostatic issue - his BP was oddly as high as 168/122 when he was on it - it took 2 weeks for me to realize that it was the BB. When we tried mestinon it sent us on our first trip to the ER for POTS related issue. It did crazy things to him but not until it built up in his system over 4 days. That was really scary. The flroinef reaction was very benign but not tolerable for Kyler all the same. We also had to cut his current BB perscribed dose in half because it lowered his sitting BP below 100 the fist time we gave him the full dose so back down we went. You need to talk to his doctor about you being able to monitor him and either use your own common sense and step down or off when there is an issue or call them when you notice a problem. Do you have an auto cuff at home? Kyler prefers the wrist one because it doesn't hurt him. The one we have tells BP and HR - I love it. Good luck. I hope that he starts feeling better. This is so hard to understand and cope with. It took us about a year to get into a groove and not feel like we were in crisis mode. That feeling comes back when he gets sicker each year at this time. This support group is AWESOME - I just came back here after a year and I felt better after the first day on here. Serena

kyler's temp is usually around 97. If he gets to 99 he starts dropping his BP.

That is very scary. My 18 month old has high HR also but I try to just remind myself that I am crazy and I worry too much. Hers ran about 160 for the first year and now is between 130-150 depending on activity level. She doesn't seem very affected by it so I am waiting it out before I freak out. One thing that helps me monitor both the 14 yro. with POTS and the little one is a wrist auto cuff. It actually works on the 18 month old when she is sitting in her high chair. It tells BP and HR. It doesn't feel nearly as uncomfortable as the arm cuff when inflated. Hopefully another comfort to you is that I work on an ambulance and I have seen grown adults with a HR above 140 from a high fever. Children always run higher. Most children that I see with a high fever are well above 120. Their respiratory rate is usually much higher as well as their body attempts to get the fever down. Dehydration -even minor-also causes increased HR so hopefully it is just the fever. I reccommend tracking his HR when he is not sick and taking note of trends. Good luck and hang in there. Serena

My son also got diagnosed at 12 with POTS. his was more of a gradual onset since age 7 and not recognized until age 12. I just want to encourage you and echo what Brenda(teacher4k) said. She was a huge support for me and the main reason that I had my son classified as special education as well - It's the best choice that we made thru this whole thing. It has brought him from failing no matter what we did to being an honor roll student, I prionted the brochures fron Dinakids website and gave them to EVERYONE at the school to educate them and most of them have been very undertsanding. Being special ed has made klyler's decline and transition as a result so much easier. he gets picked up at 11:00 and brought home at 1:30 and does 2 classes with a homebound teacher. I am betting that school is on the bottom of your list at the moment. I agree that perhaps you should at least try to lower the milk intake and rotate with another beverage. My son tells me that drin king too much fluid makes his stomach feel bad - it is a delicate balance that he has learned and i screw up by nagging him - LOL. We tried the salt tabs and it messed my son up even more - it gave him GI symptoms that he didn't have before so we switched to high sodium food diet and gatorate/water rotation. The most important thing that I found was getting the right meds. The first beta blocker that we tried debilitated him - it was bad. The second one worked for a year and then started dropping his BP too much so now we are on #3 and it is great so far. It's all about wait and watch and monitor and adjust. The wrist BP cuff is great and doing sitting then standing BP is very useful to see if a med is working - Dinakids has a great vital signs tracking sheet that you can print. It sounds like he is very ill and he needs more meds to help him. meds are the only way that my son can function. When they were going to take his midodrine off the market I almost had a nervous breakdown because he would be bed ridden without it. It helps his BP and his GI issues. This illness is scary and frustrating and I grieved for months after diagnosis and I still throw my son a pitty party sometimes (where he can't see). You will get thru this and it does get easier and then harder and then easier. Hang in there and if you decide to try another doc My son sees Dr. Abdallah and he is AWESOME. He is in Northern Virginia. Take care and hang in there. Serena

It helped my son with his BP dropping drastically when he stood. The problem was that it wired him to the point that he only slept for 2 hours /night for the 2 weeks when he was on it even at a very low dose like 0.025. It certainly decreased the fatigue but now he only takes it when he wants to have a sleepover so he can be like normal kids and stay awake. He started going crazy from lack of sleep. I'm glad that you posted this because I think that we may try it again now that he is much worse than the last time we tried it. Thank You for the reminder.

That is really helpful. Thank you all. Chaos, We have tried support hose but they made him too hot which makes him feel worse. He also HATES them because he is 14:( The other problem is that he is very tall 6'2 1/2 so he needs an XL for the height and then they are too loose around his calf. They said that they can special order them for $80 but it is unlikely that they will get used. I don't want to damage his psyche by making him wear them in middle school. He is very positive despite feeling very bad most of the time so I am picking my battles.

Wow! It's so crazy that you can have something like that and not know. Do you both pool really bad? Is it a blood test that shows EDS?