bkweavers

I agree with Cordelia. You have to be persistent with doctors and lay it on the line. I know that's easier said than done sometimes especially when you feel so awful but if you feel the doctor is leaving you hanging, you may have to fight for yourself. I know I'm sure I've ticked off plenty of doctors along the way by constantly calling and bugging their offices but too bad. I would do or say anything to get my daughter feeling better and some doctors just don't want to put the time into patients with POTS. I hope and pray for better days ahead for you. It is certainly difficult to go to school much less feeling awful. Do you have anyone who can help? Brenda

Serena, I was outraged and saddened to hear what your church did. Like the others said, find another church. That they would do that to a child who has been through so much just blows my mind! You need to surround your family with people who will lift you up in support and prayer and show you what it really means to be a Christian. I have said it over and over that if my daughter, Liz hadn't had youth group at our church, I don't know what she would have done. Our church has gone above and beyond and the youth group made sure she was included in everything. She's been in our church bulletin for 4 years now every Sunday under the prayer requests. I hope and pray the same for him. I know you've heard it before but hang in there. Your son has a good chance of out-growing this illness. I was told by another mom of a boy that a doctor told her that the more testosterone, the better guys feel. I hope and pray that for him. We just hit the 4 year mark with Liz and things are going soooo much better so I hope that gives you and others hope that our kids can live through this and get better. Congratulations on the upcoming baby! God is good! I'll be giving you a call soon to talk or feel free to call me when you get the chance. I'll be home all next week for spring break. Take care, Brenda

Four years ago today, my daughter woke up dizzy with a headache. She was 10 yrs. old and little did we know that a month later, she would be diagnosed with POTS. This anniversary is a lot easier because of the progress Liz has made in the last year. She is actually getting her life back and it's feeling closer and closer to "normal." It still made my mother heart heavy this morning though but I try not to dwell on the negative and look forward instead. So thankful to God for helping her and our family get through this. Despite all that she's been through, she is a postive, happy girl. I can't tell you how many people come up to me and tell me how they marvel at her wonderful attitude and the smile on her face. As you can tell, I'm extremely proud of her! To all of you dealing with this illness, have faith, stay strong, and I hope and pray for better days for all of you. God bless, Brenda

Thanks everyone for all the great suggestions and comments. I'll remember all of them. We do have to fly only 2 hours so that should help. I'm going to really try and get her to use a wheelchair. Now that's she's almost 15, she doesn't like to listen to her mother as much but I want her to conserve her energy for the week. Thanks again everyone! Brenda

First of all, Excedrin migraine is the same as the other Excedrin. I don't know how they can market it differently when it's the same thing! If I'm getting what feels like a tension headache, I try Excedrin or ibuprofen. Ibuprofen seems to help some people with migraines. I wish it did with me. Like Bev, I'm getting the same amount of migraines each month. I'm going off birth control asap. Even though my doctors keep telling me I"ll get more headaches, mine have worsened since being on the pill. I've tried numerous preventative pills with just side effects and no relief. So far, the only that really helps is Imitrex I also get deep tissue massages and I'm trying accupunture. I've only gone 2 times but I'm really hoping it will help my head or my neck and back pain. It's worth a try. I also have my wonderful brother who is a physical therapist and works on me from time to time and gave me exercises. I don't know what I would do without him! Just one more comment about over the counter medications - people are always so concerned about taking prescription meds but meds like Excedrin and Motrin can be just as damaging if you take them too often. You can get rebound headaches from Excedrin but not from Imitrex. At least that's what my doctor told me. Hope you find some relief. It's so hard on your body to be in pain. Brenda

So sorry to hear how long some of you waited for a diagnosis. Let me guess - you had many doctors who told you it was in your head and sent you to counseling? Anyway, we feel very grateful to Children's Hospital of Milwaukee for diagnosing Liz in a month. A wonderful nurse practitioner did her research and had us then do a tilt table test and a sweat test. Incidentally, she was also the one who helped us get those tests done asap. (A cardiologist at Children's was going to make us wait a whole month for the test and his attitude was too bad!) I will always be grateful to her and the neurologist there for not dismissing us. If it wasn't for this website and others like it, I wouldn't have known as much about POTS. I learned so much from talking to others on here than I would have ever learned from doctors. Talking to others on here was like a light shining during a very dark time. I was scared and frustrated at the beginning of this and it was wonderful to be able to ask questions of others and just feel some support. I hope and pray that websites like this one and the word getting out will soon put a stop to people having to wait so long for a diagnosis. Brenda

We've finally decided to take a family trip and we need to fly to get there. My daughter who has POTS has improved tremendously this past year. She went from spending her days horizontal to being upright and now is almost able to walk on her own. Many of her symptoms are gone. I'm just concerned about the flying affecting her. I know other people on here have flown and wondering what your experience was with it. Brenda

My daughter has taken Mucinex with no problems. I would be a little worried about the codeine syrup but you could ask your pharmacist about drug interactions. Pharmacists know way more about drug interactions than doctors do. It's not good for your body to cough all night without rest either so taking it short time may be o.k. Hope you're feeling better soon. It's been a bad February for sickness. Liz was sick with bronchitis and tonsillitis. I was very worried especially when her dizziness came back and I was worry she wouldn't recover well. Thankfully, I was wrong and the dizziness subsided. Brenda

My daughter just got a double whammy-bronchitis with tonsillitis! I'm very glad that I brought her to the doctor right away. She's been on antibiotics for 5 days and still feels awful. Her dizziness has been bad again with this. You are getting two things at once, which can be very hard on your body. Make sure you especially keep up the fluids, get lots of rest, and try to be patient with yourself. It isn't fair but people with autonomic issues just take longer to get better. Take care, Brenda

I really can't help you very much concerning many of your questions. My daughter has POTS and none of the other things you're describing. I can give you some advice concerning doctors and I'm a mom just like you and I understand you wanting to DO and FIX this. I've been there. It's been nearly 4 years already. We switched doctors so many times during this that I sometimes felt that we were too protective and worried about our daughter. I can't mention names but we drove across many states to get to a doctor that was known to be a POTS specialist and one of the best. He wasn't a bad doctor but very, very busy and we felt like we were getting no where with him. It's funny, but we ended up going back to a doctor that my daughter saw only a few months after her symptoms began. He actually gave us his email address and he would respond within a day or two! I was floored when he contacted my daughter's physical therapist and pedicatrician within a week of our appt.! Thanks to him and some fabulous therapists, my daughter is much improved! I guess what I'm trying to say is that you have to know in your heart that your daughter is with the right doctor. If he/she isn't willling to help your daughter, you move on to someone who is willing to put the time and energy into her. My daughter's physical therapists knew nothing about POTS but they were very willing to learn and read articles and talk to my daughter's doctor. I thank God for them because they were caring and willing to think outside the box concerning my daughter's condition. Like Julie said, you are her project manager and it's a big job. I pray for all the caregivers out there because it's a gut wrenching, emotionally draining job and seeing your child ill, just takes it out of a parent. Hang in there and I hope you find the right doctor very soon. My prayers are with you, Brenda

Did you search this site concerning this subject? I want to say that I read about someone else that had the same eye movement thing that you described. I would check this site first. I know that there is specific therapy for that type of dizziness/vertigo. They do different positioning of your head and I believe they would also have you do exercises at home. You would go to a physical therapist who specializes in vestibular therapy. God bless, Brenda

You are correct, Dizzysillyak. The dizziness is due to not enought blood being pumped up to the brain. But I guess I wonder then why everyone doesn't have dizziness as their symptom? My daughter's main symptom is also dizziness and for her, it got so bad for 3 years that she was unable to sit up, stand, or walk unassisted. Thankfully, she appears to be growing out of it and vestibular therapy helped her so much. She used to rate her dizziness while upright around a 9 or 10 on a scale of 1 to 10. Now she says when she sits in one place for awhile, the dizziness goes away completely. The salt and the water you are suppossed to consume every day is to help with blood volume. Maybe you would be even dizzier if you didn't have adequate amounts of both? I know my daughter would feel worse if she hadn't kept up with liquids for that day. I think dizziness is one of the most frustrating and hard-to-handle symptoms of autonomic disorders. Maybe I'm wrong but my daughter had headaches with her POTS and it was easier to find a medication that decreased the headaches than it was to find a med for decreased dizziness. We tried quite a few. I wish I had a med that worked with us but I do know that therapy and exercise along with rest, drinking lots of fluids, and salt seemed to help. God bless, Brenda

Do they do that? I was figuring that one of my daughter's meds was the culprit for thinner hair and she has been on Pindolol for 3 and 1/2 yrs. now. I hope when she comes off of it that her hair will thicken again. But I guess that's the least of my worries right now. Brenda

My 14 yr. old daughter has had POTS since March of 07'. At the time, she underwent testing for the vestibular system at the ear, nose, and throat doctor. This was before we got the diagnosis and everything came back normal. Fast forward to Jan. of 10' and her physical therapist was wondering if maybe vestibular rehab would help her. She had spent almost 3 years completely horizontal and was unable to sit up, stand, or walk due to extreme dizziness. The therapist was curious if her vestibular system was now causing more issues with her POTS. This past summer, Liz spent 3 days a week at vestibular rehab in a hospital near us. The therapist worked her very hard and had her up with the assistance of a gait walker and other tools. It was hard at first and very hard for me to watch her struggle but after 3 months of working at therapy and doing work at home, Liz is sitting up all the time now and her dizziness is almost gone. She went from hardly sitting up at all in June to sitting up all by the beginning of school. I don't know if this would help everyone on here since Liz's body was showing signs of improvement before we began the therapy. But I mention it because you never know who may read this and have same situation and it may help them. We had gone to a different doctor in April and he had just so happened to have had another patient who exhibited the same symptoms and the same action of being unable to sit, stand, or walk. The doctor was able to give us more insight into what may work, although I still give most of the credit to the physical therapist who mentioned it in the first place. It's definitely something that needs more research. Boy, if I had a dollar every time I've said that! POTS needs more research!!! Brenda

I so feel your pain. I've been there watching my daughter at age 10 suffer and do nothing but lie in bed or on the couch. She was so dizzy during the first year of having POTS that she would have to hang on to the couch or her headboard. I'm so sorry that she is going through this and I know what it's like as a mother to have to watch your child suffer. I guess I'm not sure if your daughter is suffering from depression at this point but I would lean more toward her just feeling awful. Liz looked and felt awful for the first couple of months until some of the meds helped. As winter came on, her symptoms got worse but when her menstrual cycle balanced out, she was a little better. I agree with the advice of making sure she gets plenty of fluids, salt, and a healthy diet but we were also told by doctors that our daughter needs to rest. Your daughter's body is being attacked right now and I'm not sure that anyone of us would feel very motivated to get up and move if we felt that awful. I would recommend that your daughter go see a psychologist/psychiatrist when she feels good enough. It was recommended for Liz and it was a great comfort to find out that she wasn't depressed but we continued to have her see the psychologist to help her in dealing with this illness. If you would like to ask any further questions or just talk, I would be more than happy to talk to you. It was this forum and others like it that has helped me through some very dark times. Thankfully, we are coming back into the light and I do want to tell you that it gets better! Send me a pm and we can exchange email addresses if you would like. I was where you are at one time and many parents were able to help me feel like I wasn't alone. God bless, Brenda

My daughter wore a weighted vest while in vestibular rehab this summer and the therapist would also put leg weights on her from time to time. He told me it was to help her propriaceptors(sp?), what helps a person feel their body in space. Her body had been down for so long that she needed to "feel" what it was like to be standing up or walking. It also made her work harder! Dizzyde- my daughter's prior physical therapists recommended vestibular rehab because they believed her vestibular was off due to her lying down for 2 and 1/2 years. Originally, when she became ill, we had vestibular testing done and it came back that she was fine. Now, when she had been down for so long, the rehab has really been successful! Those therapists were right and I think doctors need to be more open-minded about it. I give our physical therapists a large amount of credit for helping my daughter to get better. We've been very blessed to have therapists who think outside the box since there isn't a whole lot of research out there on therapy and POTS. We're also very thankful that the vestibular therapist chose to take our daughter on, even though she was a challenging case. I hope all of you can find the help you need as well. Brenda

Debra, Everyone here said what I was going to say as far as IEP and 504's. My daughter began middle school in the special education program and we never once regretted it as it gave her much more freedom for her to miss days and not have it held against her. Again, like someone already said, every state is different but I would definitely take advantage of the special education coordinator, that is, if your school has one. What I wanted to add is an encouragement to fight hard for your daughter and her needs. My daughter was so happy to be able to stay in school as much as possible. Every doctor we've gone to since she became sick always asked her about friends and school. Dr. Grubb told her that the most important thing she could do for herself was to stay connected socially. I always thought that was the best advice she received! So, my advice is to keep going no matter what. Believe me, it isn't easy but I think once the school knows you mean business, they will comply and if she meets the requirements, they don't have a choice, they have to! I believe my daughter is coming through this as well as she is because of being in school and being with her friends. My prayers go out to you and your daughter. God bless, Brenda

I've waited awhile before posting this because I was a little afraid that my 14 yr. old daughter with POTS was going to get worse again. It's been since January that Liz has been improving. She began to show signs of improvement at that time and her physical therapist at that point thought it would be good for her to go to vestibular rehab. It took us awhile to get that set up and in June she began vestibular rehab at a local hospital. (We also took her to a different doctor in April and he really encouraged the therapists that he felt her body was ready to be pushed.) She went 3 times a week all summer. She worked on sitting up and walking and the therapist instructed us what to do at home. Last spring, she was using a wheelchair in school, was reclining most of the time, and couldn't walk very far. Now, she sits up all day, the wheelchair is gone at school, and she walks all over school with a little assistance! Tonight, her and I began to walk around our neighborhood again. It's been 3 and 1/2 years since we walked together and I finally feel like I'm getting my daughter back. She's not ready to run a marathon yet but I know if she keeps this up, she'll soon be dancing at a school dance. In some ways, I feel funny posting this when there are so many of you suffering so much and yet, when Liz was at her worst, it was the success stories that I clinged to. So I hope that for many of you out there, it gives you hope to know that there are people beating this. I can't tell you how proud I am of my daughter! She's been through so much and I'm hoping and praying that we're nearing the end of this. I'm hoping that soon I can come on here and tell you that she's completely well. Brenda

Thanks everyone for the encouraging words! Yesterday, we found out that the insur. company is approving my daughter for 9 more sessions of therapy! I'm soooo happy! I really thought we were in for a fight after talking to other people who have a cap on the amount of therapy they can receive in a year. Liz's wonderful POTS doctor talked to the doctor at the insurance company and whatever he said, must have convinced the doctor to put his stamp of approval on it. After the 9 weeks, they'll talk to Liz's doctor again for an update and she'll have to see him and we'll go from there. I guess you can win with insurance companies, at least sometimes. Brenda

My 14 yr. old daughter has leg weakness as well. As her other symptoms have improved, that has also. She started out in therapy and at home lifting 2 lb weights and worked her way up. Her therapist would change the exercises from time to time. I almost hate to mention this because I know you're a "pro" when it comes to autonomic disorders but have you ever tried Mestinon? I've read that it is suppossed to help leg weakness and my daughter was on it for a year or so. Prayers to you and all I can say is to keep working out when you can and hang in there. Brenda

Wondering if anyone can give me any advice to help. My daughter has had POTS for almost 3 and 1/2 yrs. and has had physical therapy for almost 3 yrs. This past summer we switched therapists in order to have her start different therapy - vestibular therapy. She worked her tail off this summer and in 3 months time, has made tremendous progress. Now that we're finally seeing some improvement in her, out of the blue, our insurance company decides to deny any more therapy. We were told a pediatric neurologist looked over her files and decided she didn't need therapy anymore! We are fighting this and my wonderful, level-headed husband already called the insur. company to talk to them. He requested that they talk to my daughter's neurologist, who also happens to be a autonomic specialist. He also caught the woman in a few lies along the way, but that's another whole topic! Anyway, we've talked to her doctor who is willing to go to bat for us and I've talked to her school therapist, who is also willing to help. Our daughter basically was horizontal for 2 and 1/2 years. She is finally able to sit up all day. She cannot walk without the aid of someone. She still is dizzy/lightheaded while sitting up. Obviously, she is not completely better!! I'm sure many of you have dealt with this and I'm really hoping I hear some good outcomes and advice on this. We could also use prayers! Boy, do we need to do something about the insurance companies in this country!

Know what I've noticed here? How many of you can find some humor in this!! Love the comment about picking up the pharmacist!! My daughter and I do the same thing sometimes. I called Liz, "Dizzy Lizzy" one time in front of a nurse and did she give me a stare! Back to the subject at hand - I guess I don't understand why people can't have a little more compassion and think before they say something stupid? I had a neighbor who is a nurse say to me, "Well, at least your daughter doesn't have cancer!" That really hurt and to this day, I wish I wouldv'e told her how much that statement hurt. My daughter has missed out on 3 years of her life already and to dismiss it like that was horrible. The funny thing about all of this is that the people who seem to understand the most are those who have loved ones sick with cancer or other illnesses. Until you've been through hard times, I don't think you can fully understand what it's like. We've had people say hurtful things to us but we've also experienced many blessings from those who are close to us and not so close. I think those people stand out more in my mind than the others. I've also learned compassion and not to be so quick to judge others and above all to cherish my family. I hope and pray that you can surround yourselves with people who will support you and hold you up, rather than bringing you down. Brenda

Thanks for replying so quickly! My daughter doesn't have the visual issues that you're talking about. She describes her dizziness as "she is spinning around clockwise." She hasn't ever complained of some of the visual problems that you've experienced. The vestibular rehab therapist has recommended Liz standing in a corner with a chair in front of her, sitting up in a chair, walking with help and/or a walker. Her old physical therapist before this was having her do strengthening exercies for arms, legs, and abdomen but also was doing exercies to help her proprerceptors(sp?). She had her crawl, roll, do crunches, anything to help retrain her brain what it feels like to be upright. The new doctor she's been seeing said that we need to retrain her brain to be upright again. Liz does exercises 4 times a week or so and swims in our pool or stands up in it. So, I guess she's doing a number of different things right now. It sounds like you're doing a good amount of exercise but did they ever recommend physical therapy as well? Liz became ill when she was 1 month shy of her 11th birthday. She is now 14 and we've tried so many medications, it would take me an hour to mention all of them. Currently, she's on Pindolol, Alprazolam for headaches, and synthroid for her congenital hypothyroidism. (She's been on the synthroid since birth and has no thyroid gland.) She just went off of Mestinon after trying it twice and she's been on Ativan before with no results. We've never tried Meclizine though. The new doctor doesn't want to try anything new right now since he says with the history of all the meds tried, it wouldn't be worth it. He says she's one of those people who don't respond to meds. He did talk to my husband and I about putting a port in Liz for extra fluids to help the dizziness. Not sure what we're going to do about that yet. Good luck to you and God bless! Brenda

I agree with Mack's mom that the story was a little too rosy. The girl is very blessed to feel so much better after only a year. I'ts been over 3 years for my daughter now. Still, I'm happy for them and wouldn't wish this illness on anyone. There really needs to be a lot more articles out there on this illness. There are so many different symtoms and degrees of being ill with autonomic dysfunction. My dream some day is to write a book or at least an article with my daughter. Brenda