bkweavers

Thanks for all the info. I'm frustrated with her new doctor because she just kind of blew me off that "they don't ever test for Free T4 and T3. I know that her other doctor used to because when she was 18 months, she had terrible fatigue and was very constipated. Both her pediatrician and the endo doc kept telling me that her thyroid levels were normal. I kept bugging them because she continued with symptoms until finally the endo did a full panel and what do you know?! She had low levels! I took her to the doctor on Friday and had her pediatrician do all 4 tests. Now, I'm kicking myself for not having him run a test for mono as well. This just came on soooo fast and it's the kind of fatigue that she's never had before. Very frustrated and hope that something shows up in her tests. Brenda

So my daughter was feeling absolutely great for the last year. She was almost going to school full time last year. She had a great summer where she went to Colorado and went rock climbing and hiking for 3 miles in the mountains. Her symptoms were almost non- existent. She didn't seem to have insomnia much anymore and the changing of the seasons didn't send her into a tailspin either. Now for the past 3 weeks, she's been worse again. She's been extremely tired and very dizzy. We're taking her out of some of her classes so she can get a late start to school again and she's been trying to take it easier. She hasn't been like this for well over a year and I can't remember the last time her dizziness was so extreme. She's had dizzy days before but she could work through it and still manage to go to school. The dizziness would usually be gone in a few hours. She has congenital hypothyroidism which was checked about a month ago. My question concerns that -for anyone who has hypothyroidism, I'm wondering what they always check you for? Her first endocrinologist always tested TSH, Free T4, Free T3, and T4. Her new doctor only tested TSH and T4 and it came back as normal. Meanwhile, her symptoms are fatigue, headaches, being cold and dry skin. To me, this doesn't add up. I asked the doctor about additional testing and she said they don't ever do that. I don't think they're looking at the whole picture here. Her labs come back normal but why all the symptoms then? I know others on here have thyroid issues so I'm hoping to get some insight into this. I'm taking Liz to her pediatrician for a work-up and have him take a look at all her old records. He's been with us since the beginning so I'm hoping to get a little help from him on this. Thanks! Brenda

I don't have autonomic illness myself but I do get lots of migraines. I was up to 18 a month until I tried bio-identical progesterone and I also went off of birth control. My migraines have been cut in half and I actually went 10 days without one. It's been over 5 years since I've gone that long without one! Obviously, I don't have the many other issues that others on here have but I tried everything before this - preventative meds, accupuncture, massage, chiropractor, headache meds, supplements and nothing was working. I had also been to plenty of neurologists and headache specialists and I was sick and tired of all the medications and side affects. Just another comment to add to this but my daughter has been having more headaches in the past 3 weeks or so and I'm wondering if it's the change in season/weather. Brenda

@kcmom-Dr. Grubb does have some articles out on adolescents and POTS. He knows a lot about adolescents. Anna-my daughter has improved over the past 2 years.She was diagnosed with POTS 4 and a half years ago. The first year was horrible. This past year, we've seen huge improvements in her. She is not completely better at this point as she just had 2 weeks of feeling dizzy and tired but it went away. I've noticed that people on this forum who have more than just autonomic issues going on, they are the ones who fare the worst and flare the most. I think there needs to be so much more research done on adolescents and adults. Doctors have just skimmed the surface of what's going on! I would be interested to see what ages adolescents became sick and which ones fared better. Dr. Grubb told us that the adolescents he see who get sick at an earlier age, generally have a better overall prognosis. Liz became sick at age 11 so he said she had a good chance of completely getting rid of POTS. I think at any age, this is incredibly hard. For kids and adults, it seems to teach compassion for others and strength that they didn't know they possessed. For me, I've learned so much from my daughter. She is so strong and I am so inspired by her. Brenda

My daughter is 15 and has had POTS for 4 and a half years now. She was doing so well this past year. She had been going to school last year all but the first block every other day so she had a lot of classes and handled it just fine. She hardly missed any school. This year, school wanted her to try full time which means her getting on the bus by 7am. She was doing o.k. for the last 6 weeks until this past week. She had bad dizziness again and fatigue. She hasn't had dizziness like this since well over a year ago. The dizziness left and now she's just left with being extremely tired. My question is do you think it's due to overdoing it? Too much school and getting up early? Has anyone out there had any viruses that sound like this? I'm just wondering if it's a virus since even when she was at her worst, she was never fatigued like this! Any advice or insight is welcomed. I'm ready to pull back on school and my husband thinks we should wait and see although, he's not the one at home with her watching her feel awful! Thanks! Brenda

This article seems to make very light of this illness. While there are some people that respond to meds and can lead a fairly, normal life, I don't think that's the norm. My daughter was completely down and unable to be upright for more than 3 and a half years. We tried so many medications that our medicine cabinet looked like a pharmacy. Thankfully, she is walking and getting back to a more normal life but the POTS isn't magically gone. She certainly isn't playing sports and she's missed out on more school events and fun than I care to think about. Also, it seems that girls/women are much worse than boys/men. I know of one mom that I was corresponding with who had a son with POTS and within a year and a half, he was back to sports. My daughter has had it for 4 and a half years and still isn't to that point! We need more articles and books on autonomic illnesses that tell the whole story about what it's like to live with illness! Doctors who have never experienced being sick like some of you and my daughter, really have no idea what it's like. Easy for them to say to just get and live your life. Brenda

I think it's so different for adolescents because you throw puberty into the mix and all those changes going on in their bodies. When my daughter was in the first year of having POTS, she had her period twice a month and each time it would send her body into horrible dizziness, fatigue, and headaches. Thankfully, her cycle became normal after a few months of this. I know Dr. Grubb told us at one point that due to puberty a medication may work at first and then due to body changes, it may stop working. I have to say though that I only know what it's like from the adolescent perspective. My daughter is so much better than she was 2 years ago and many adults on this forum have not improved and/or have gotten worse. Brenda

I know we aren't suppossed to bash doctors on here but my daughter saw a doctor who was terrible. Spent 5 minutes with her, put her in the hospital, and after 24 hours of numerous tests and seeing so many doctors, she pretty much said that it was in my child's head that she couldn't walk. My husband and I just looked at her with our mouths open. To this day, I wish I could get a hold of that woman and give her a piece of my mind! We were so upset and flabbergasted that we didnt' know what to say to her. Needles to say, we took our daughter to another doctor after that. My daughter did see Dr. Zimmerman in Chicago as well. He had an excellent nurse practitioner who was very knowledgeable about POTS and autonomic illnesses. Also, I heard that there are 2 other doctors from Cleveland coming to the Medical College of Wisconsin in Milwaukee.That wouldn't be too far to go either and Medical College and Froedert have a number of excellent doctors. Send me a message if you want the other doctor's name. I complained to the woman who runs the Dynakids forum concerning the other doctor and she said that they had received complaints from other parents. I don't want other people to have to go through what we did with this doctor. Good luck! Brenda

I'm so sorry to hear he isn't doing well but frankly, it doesn't surprise me. For the first time in 5 years, my daughter is trying full time school but a few years ago, all the pushing and coffee in the world would not have worked to get her up early in the morning. The first year she was ill, she only went to school for 3 and a half hours. She would get up at 10am or later. The second year was a hour or two more and it slowly increased until now she is finally trying a full schedule. She is finally trying full-time because she has improved so much and so many of her symptoms are gone or not as severe. I don't know if your doctor ever told you this, but most kids with POTS go downhill in the fall which is unfortunate because that's when school begins. Liz used to frequently end up at home at the beginning of the year. I really caution you to push him because his body is going to fight back and he could end up worse. He has to try and understand that his body needs the extra rest and time for him to heal! His body is growing and changing as well right now and that can add to his symptoms. The school definitely needs a wake-up call and I would strongly urge you to educate them on this illness. If you have educated them already, it's time to go higher up and insist on modifications for him. Schools have to modify for sick children. They don't have a choice. I know it's hard for him to have his schedule all messed up but this is how it's going to have to be for now if he wants to get better. I know my daughter didn't want homebound cause the small amount of interaction she got was so important. I remember seeing Dr. Grubb and he told her more important than academics right now was staying connected with friends and being as social as possible. For us, school became the least important. It took us awhile to feel that way and we were worried about her not graduating on time but there were other ways to get the classes in. Liz took one of her classes after school with the teacher. There are also classes online that you can take. I hope some of this helps and your son feels good enough to stay in school part-time.

Glad to hear she's feeling better and I hope it continues as it turns to fall and winter. Tell her to take it easy though. School can hit a person hard with POTS. My 15 yr. old daughter is going to school full time for the first time in 5 years! I'm excited for her but a little nervous too. She's also taking the school bus for the first time since 5th grade. I'm hoping and praying for a good school year for all the kids out there with these illnesses. Brenda

Glad to hear those 2 doctors are heading to Milwaukee. I have a friend who has symptoms but has yet to investigate further to find out if she has autonomic issues. I'm sure glad my daughter's doctor, Dr. Barboi isn't leaving Froedert in Milwaukee. He is excellent! Brenda

To everyone, I CAN SOOOO RELATE! I'm the mother of a teen with POTS and I can't tell you how many times I felt like slapping someone when they would complain about the little things. Sometimes people would complain about having to run their teens to all their activities and I just wanted to say to them how blessed they were to have a healthy, active child! I myself suffer from neck and back pain and continuous migraines and I even stop myself from complaining too much after all my daughter has had to endure. I can also relate to what you were saying about the pregnant friends. To this day, I get so sick of people complaining about being pregnant. My oldest daughter was born at 26 weeks and we nearly lost her. (She's the one with POTS.) When I was pregnant with my second daughter, I spent 5 months on bedrest. I loved being pregnant and yet, it was very hard to not be able to do anything. I knew it was only short term though and it was worth it to have a healthy, full-term baby. I loved getting big and pregnant! Anyways, I think it's very good to vent and sometimes you just have to get it off your chest! This is a good place for it. Everyone on here has been there and struggles daily. People who have never been sick long-term just can't understand what it's like. I just wish those people would try a little more to put themselves in others shoes and have a little more compassion and understanding. Brenda

Wanted to ask you - have you had vestibular therapy at all or did you at any point? May help your balance issue. Brenda

You sound so much like my daughter and how she was with walking. Liz was horizontal for 3 and a half years. She didn't sit up, stand, or walk without help. Close to the 3 year mark, her physical therapists thought that maybe her vestibular system had been affected by the POTS and being down for so long. The summer of 2010 was a time of extensive vestibular therapy for her and she went from sitting up for 20 minutes to being able to sit up all day in school last fall. By x-mas time, she was taking a few steps on her own and this past June, she did a 3 mile hike up a mountain in Colorado! So, I am very excited to hear about your progress and I encourage you to keep working hard! It will come and Liz had days where she cried because the therapy was so difficult but it has so paid off! In the area of EDS, Liz doesn't have it but she is still having problems from time to time with her calf muscle getting very tight while walking. She was told to do stretching before she walks and after. She also can have sore legs after walking all day. Yesterday, we went to the zoo and shopping afterwards and today she has sore legs. Way to go and keep it up!

My daughter has just POTS so I don't have experience with her other issues and illnesses but I do know that the school district should have a special education coordinator to help you put a plan into place? If you go on the Dynakids website, they have some excellent information on educating the school and what to do with 504 plans. Check it out. It was very helpful for us and the school. Let me know if you have any other questions. We've been through quite a bit with our daughter in the past 4 and a half years. Brenda

I'm assuming at this point that you have a 504 plan for your son? If you don't, I would strongly suggest it or putting him in the special ed program due to his illness. A Learning disabilities teacher recommended that for our daughter at the beginning and we have been so happy and satisfied with that. I don't seem to see many other kids with POTS put into special education completely on here or other websites and I don't know why. For the first year of becoming ill, she only went to school for 3 hours and she missed a lot of school during that first winter. We never had to worry about her completing all of the work because it was so modified for her. At this point, she is right on track to graduate with her peers. I have to say we've been very blessed with a great school district who educated themselves on her illness and went above and beyond for her. Just a few other thoughts-I know it may be hard for your son to do this but have him use a wheelchair to conserve his energy at school. Liz sat in reclining chairs in every class because she couldn't sit up all the way. She also had an aide to help her at all times to get around school. Liz had lap desks provided to her as well. Those are just a few of the ways they helped her to make her life easier at school. Your school HAS to provide help to you and your son. There is just no way they can't. Unfortunately, you may have to be very adamant and forceful to get what your son needs. It seems with this illness, you have to spend a lot of time and energy to fight for what your child needs! I hope some of this helps. Brenda

My daughter with POTS had headaches before she became ill and then had a daily headache for 10 months. She didn't describe them like your daughter's headaches but since she was only 11, they would only allow her to have ibuprofen. After 10 months and trying different medications, she went on xanax and her headaches gradually became less and less. For some reason, that worked for her. Headaches are definitely a symptom of dysautonomia and many people on here have them. As for that neurologist saying he's never heard of daily migraines, I hate to tell him but that happens to many people! My mother suffers from daily migraines so I don't agree with him. I certainly hope you find a med to help alleviate your daughter's suffering. I get migraines and other headaches over half the month and it's miserable. Brenda

I'm so sorry to hear about your daughter! I have a 15 yr. old daughter who has had POTS for the past 4 years. We also heard from several doctors that her symptoms were something they hadn't seen before. I lost count of the amount of drugs we tried for her daily dizziness. We never did find something that helped it. The dizziness just gradually got better over the years. Other meds did help the headaches, insomnia, and tachycardia. I can totally relate when you said that she went from being an energetic girl to a sick one. Liz woke up on the morning of March 13th, 2007 complaining of a headache, dizziness, body aches, and fever. The fever and body aches went away and the rest stayed along with many other symptoms. It's been a difficult illness to say the least and I'm not going to sugar coat it, it's not an illness you get over in a few months. I have just a few things to add to what the others have recommended. If your daughter does have some form of dysautonomia, she's going to need help from the school. Thankfully, our school was awesome and due to Liz being so debilitated, we put her in special education. Other parents on here have gone the 504 plan. Your daughter is going to need help and understanding from her school to get through this. Also, Dr. Grubb (one of my daughter's doctors) told us that with teenage bodies, a medication may work for awhile and then stop working or it may work when tried at a later date. Time of the year may have your daughter feeling better. Summer is usually the best and then fall starts the downward trend with winter being the worst and spring seeing improvement again. These are just a few things I can think of right now but there are many other parts to this illness. Very important is finding a doctor who really knows about autonomic issues and dysautonomia. It took us awhile to find the right doctor and I was on the computer full time when Liz first became sick, but it was well worth it. I hope some of this helps and I'll be praying for your entire family. My heart goes out to you, Brenda

K'smom, I can honestly say that I know how you're feeling because I was there. My 15 yr. old daughter has POTS and even though she was doing well emotionally, I was not. In fact, the two years before this were terrible and I was depressed. I felt hopeless and helpless concerning her and I felt like she was never going to get better. I couldn't stand to hardly watch her on some days because it just made my heart break into a million pieces. I would rather have had the illness than her. I agree with the others about a support group but that's if you can find one. I'm not sure where you live but there are dysautonomia support groups springing up all over. I know for myself, talking to people with cancer even seemed to help. Even though their symptoms and illness was different from my daughter's, we had many other things in common that come with dealing with an ongoing illness. The good news for your daughter is that she is an adolescent and has an 80% chance of growing out of this. But in the meantime, is it possible for her to have friends over? Do you have a youth group at her church that she can attend? I think anything to get her with her peers is helpful. My daughter doesn't have all the over health issues your daughter has but she was so debilitated for 3 and a half years that she was unable to walk, sit, or stand up so we tried to keep her in school as much as possible and get her around friends by having sleepovers. Feel free to send me a note and/or I would be more than happy to speak to you on the phone. Over the last 4 years, I've been in contact with many parents of kids with POTS and it helped me through some very dark days. It's also been a source of information for me and knowing that other people were experiencing the same things we were. It's a difficult illness to have because many people don't know what it is and have never heard of it. They think because your child looks alright, that they really must not be that sick. My daughter has actually improved immensely in the past year and is getting close to being like her old self before POTS. It's been 4 years and 2 months since she became ill but I know she has become stronger because of it. We are also Christians and there were many days when I was angry at God and just couldn't even find the words to pray. Someone at my church told me," on the days you don't have the strength to pray, remember that someone else is praying for you." Our family felt those prayers and that God was with us during the worst of days. You and your daughter are in my daily prayers. Ps. 34:18 says,"The Lord is close to the brokenhearted and saves those who are crushed in spirit." God bless, Brenda

I'm the mom of a 15 yr. old daughter with POTS. We've used a wheelchair only for short periods of time only because she never wanted us to buy one. I would rent one for a month at a time to go on shopping excursions or to movies. My daughter was unable to even sit up at the time so we had to rent a reclining wheelchair. I think if you are wanting one, you should go for it! You know what you can or cannot do on certain days so I don't think you'll become dependent on it. If you feel great one day, don't use it and walk. If you're having a bad day but want to get out of the house, use it. You know your own body and doctors don't know everything. I'm so sorry to hear that you've been feeling much worse. My daughter became sick at age 10 and the first year was terrible. She was out of school all of the time and was unable to handle only 3 hours a day and that was spent reclining. If you can possibly get to school at all, I would recommend it. At your age, you need that interaction with your friends. Do you have a 504 plan or are you in special education due to your illness? If you absolutely cannot make it to school, have your friends over for short amounts of time. My daughter loved to have sleepovers and we tried to have friends over as much as possible. I don't know very much about you and your symptoms but my daughter has improved a lot in the past 10 months. We just got back from Florida and she was even able to walk most of the time while holding our hand and even go on roller coasters. That is big for her since a year ago, she was so dizzy that she couldn't even sit up, walk, or stand on her own! There is a huge chance that you will get better. Our doctors told us adolescents have a 80% chance of recovering completely. It takes time and a lot of patience but we can see this happening with Liz. So hang in there. It's been over 4 years for Liz but we are seeing great results. Another thing-you may need to get back into physical therapy. Liz went to therapy for almost 4 years before they finally graduated her. She still does exercises at home and works out. You do need to keep your body moving as much as possible. If you want to get in touch with my daughter, send me a message. She would be glad to talk with you. Take care of yourself and God bless, Brenda

Love to hear that people are writing and putting POTS out there. I'm finding more and more medical personnel and people who have heard about POTS. Both of them great stories! Thanks! Brenda

There is absolutely NO REASON why they shouldn't be accommodating your child and I would fight it. Yes, he may be behind in math and your homebound teacher may not agree with you but is he/she considering how your son would feel repeating the entire year? He's already fighting a horrible illness and I'm sure he's given up plenty of activities, hanging out with friends, sports, etc. already and then how would that do for his self esteem? Remember, you know what's best for your child. I think at this point that when your son gets better and the brain fog improves, he will be able to catch up then and better understand the material. I know for my daughter the thought of not graduating with her class was something unthinkable. We've been in special education since the beginning and from the many parents that I've heard from with a 504, they also did not receive the support and help they needed. We've had to fight the school on a few issues but overall, they were able to support her so much more being in special education. I would strongly suggest checking into that especially if he's having a difficult time being upright and he's struggling with the brain fog. If it's showing in his grades, he obviously needs more and they need to be more accommodating and helpful. It just infuriates me that we as parents are already dealing with the stress of our child's illness and then the school decides to heap more stress on. What is wrong with our schools? Just another thought that one parent said to me. We were discussing school and she said that right now her main focus was to get her child better and that school was last on the list of priorities. That stuck with me and my husband and I adopted that idea as well. There is more at stake here than just school. There's your son's emotional well-being as well as physical and the importance of friends and relationships. Anyway, I hope and pray that you will find a solution to this and that your son gets the help he needs. I also pray for days of feeling better for him. Maybe if some of these administrators and teachers became ill, they would be more understanding and compassionate. Brenda

Mason's dad, Believe me, we've been right where you are! The first couple of months were terrible for my daughter. She wasn't on a beta blocker yet and her heart was racing at night with her crying and unable to sleep. She was so fatigued and she just looked terrible. She felt a little better after beginning a beta blocker but I hate to tell you this, she had a bad first year with being out of school every other week during that first winter. I don't want to upset you but you need to know that he's only just beginning with this and it's going to take time and patience for him to feel better. It took so many different prescription changes with Liz before we found the right ones and no meds ever helped her dizziness. I'm so sorry for the worry and pain you must be feeling watching your son go through this. It was incredibly hard to watch my daughter feel awful day after day and my husband and I felt so helpless. I prayed for God to give it to me and take it away from her more than once. I agree with the others about the ER visit. Keep in touch with his doctor and keep a record of what goes on with his symptoms day to day. Some meds take awhile before you see results but if you think it's making him worse, contact the doctor. My prayers are with you and your family. It will get better but it will be a roller coaster. Take care of yourself and the rest of your family too. It affects everyone. Brenda

I agree with all of you on Dr. Grubb's compassion and knowledge of POTS/other dysautonomia issues but we went to another doctor. Dr. Grubb never responded to emails, faxes, phone calls from my daughter's physical therapist and other doctors. Our therapist had questions for him and Beverly that were never answered and we felt like we were getting nowhere! We ended up going back to a doctor near us that thankfully, pushed us in the right direction. Two days after our appt. with him, he had already contacted her pedicatrician, physical therapist, and psychologist. That is what was needed! This was the first doctor to give me his email address and he would respond back to me within a few days! I don't mean to say negative things about Dr. Grubb because I do think he's an excellent, caring doctor but I do think improvement could be made with communication. Maybe it's a case of too big of a patient load! I also think that even though he's an expert, there are special cases that he just hasn't seen yet and our daughter's was one of those. If anyone lives in the Milwaukee area and needs a good doctor, I can recommend the one my daughter is seeing. He may already be on the Dinet list as well. Brenda

I'm so very sorry to hear about your son but glad that you've found this forum. You will find lots of help and support that will be needed in the months and years ahead. My 14yr. old daughter, Liz has POTS and congenital hypothyroidism. She has no thyroid gland and we were told by one of the POTS doctors that he sees a high incidence of patients with both but not sure what exactly the correlation is. She's into her 4th year with POTS although we've seen huge improvements in her in the last year. The first year was extremely difficult. Dizziness has always been her worst symptom and she spent so many days on the sofa hanging on to it because her dizziness was so bad. She had daily headaches, insomnia, fatigue and she was unable to stand, sit, or walk alone due to the dizziness. She basically spent 3 and 1/2 yrs. lying down. At the beginning, we made a very difficult decision and put Liz in special education. It was recommended by a LD teacher and we have never regretted that decision. Because of that, the school was able to give Liz the extra help she needed and the state wasn't constantly questioning the many days of absences. It took a ton of stress and pressure off of us and Liz. I would strongly suggest that or what is called a 504 plan. Talk to your school, educate them on this illness and above all, be an advocate for your son. There were times we fought school for Liz but it was well worth it. I agree with the doctor who told you that you are in for a long fight. I don't want to scare you because your son's story may be very different from my daughter's but POTS isn't an easy illness to treat and on average it takes anywhere from 5-7 years to completely disappear. I've read of some people taking longer than that and some shorter with varying symptoms. Medications-there were no meds that helped Liz's dizziness but she did find meds that helped her other symptoms like headaches. Everyone is different when it comes to meds. What works for one person may not work for another. Also, puberty and hormones can mess with POTS and meds may work for awhile and then not work. He may go through growth spurts and you may see him worse during that time. The best advice that we received from numerous doctors was this....help your son stay as socially active as possible so he can feel as "normal" as possible. We're very glad that Liz was able to go to school, even if at first it was only a few hours a day. She attended youth group at church whenever she felt up to it and we had a lot of sleepovers at our house. I hope some of this helps and I know there are more things I could say. I remember being in your shoes and constantly asking questions of others. The support and information I received on here was more valuable to me than any advice from the doctors. As an adolescent, your son has an 80% chance of growing out of this. People have sent me emails telling how their child was now in college and doing so much better. Those are the stories I held on to and now it looks like Liz will also be one of those success stories. She's getting her life back and is now up and around and almost walking by herself. The dizziness is almost gone and many of her other symptoms have allowed her back to school almost full time. My prayers and support go out to you, your son, and your family. One more thing. There is a website for adolescents with dysautonomia call Dynakids. They have great info on there to print off for school, doctors, or friends and family. There's also a forum on there. God Bless! Brenda