bkweavers

Thanks everyone! You know,for the most part her school has been great! We met today and while it was all figured out how to shorten her day, we still feel like no one is taking responsibility for the misinformation we were given last year! The special ed coordinator is going to look into the possibility that an elective could maybe be waived. I'm going to pray for that. That would help a lot, even if it was only one credit. If not, we're going to have to look into an online course. At least this time they will pay for it! We will also be sitting down with the school counselor and the principal and let them know we are not happy. It certainly adds to my stress right now. It means so much to Liz to graduate on time and so I feel like I need to fight for her-once again! It's just exhausting. Brenda

I soooo need to vent so sorry ahead of time. Just got off the phone with my daughter's school and once again, they are adding to my stress! My husband and I want her every other school day to be shortened. She has been going to school by 9am every day this year. Many days, she has gone with more dizziness, headaches etc. She also has missed many of the activities she enjoys outside of school due to fatigue. I'm tired of it and since winter is worse, she needs to pull back a little and have a life on top of it! So, we're setting up another IEP mtg since she's already in special ed. First of all, they now wanted a letter from her doctor saying why we felt she needed this schedule. Fine. We never had to do that before but whatever. I got the letter sent it in and waited. 3 weeks have passed and we finally have a mtg. tomorrow. I don't know what took so long but they kept asking me if this is what we really want. Yes!!! I'm getting to the point where I think they really don't think she's sick anymore. (She's been in special ed for 5 years now so you would think they get it!) Last spring, we talked extensively about her credits to graduate. We were told if she took a online course in the summer, we would be 1 credit ahead. Well, now they're telling us we paid for only a 1/2 credit and hopefully, she'll have enough to graduate next year! I am livid! I would have never paid for 1/2 credit course and had her gone thorugh all that work! I guess what's really upsetting me is the atttitude of the school. They really don't seem to want to help her and it's feeling like this is an inconvenience for them. I know, by law they have to do it but it's just upsetting to me after all this time. She's such a hard worker and has been through so much to get to this point. Thanks for listening. No one else understands like the people on here. It's very lonely and stressful being a caregiver sometimes! Brenda

Just thought of something else. The therapists connected with my daughter's doctor also to get more info and help. Her one doctor was really no help when it came to the exercise part of it but the other was. Just another thing that may help your therapist. Tell her/him not to be afraid of this with you. Obviously, it's not fun to pass out but no exercising is only going to make you worse! I hated having to push my daughter at times and it was so difficult to watch her but it sure paid off in the end and it has made her a stronger person in more ways then one. Brenda

Like Looneymom's son,my daughter wasn't upright at all for 3 and a half years. She went to therapy once a week and did exercises for arms, legs, and core when at home. There was very little she could really do at that point as sitting up at all was out of the question. Due to extensive vestibular therapy in the summer of 10', she became upright again and began to do more little by little. Since that time, she is in phy ed class again. She does everything all the other kids do except if she's beginning to really get overall tired or dizzy, she asks the teacher to be able to take a break. She has always been very good at listening to her body when it's at the breaking point but she also works her body as she knows that it helps her to stay healthy. She is so strong now from all those years of lifting weights and doing core exercises that she can do 20-30 reps of push ups! She impressed her male cousin not to long ago when he dared her to show him! For my daughter and her physical therapist, it was a constant checking in to see how much or how little to do with her. The therapist would always ask how my daughter had felt after the last session. If we said that she felt awful for days on end after, she would pull back on some of the exercises. If she just felt bad that night, then she would continue with the same ones. If you are constantly passing out, I would think it's time to pull back a little. Swimming was another exercise that really helped my daughter and the place where she did therapy had a pool. Very easy on the body and I know lots of others on here have done that. I so wish I could give you the name of my daughter's 2 therapists. Unfortunately, both have left and one has moved. I always told them they should do their doctorate on POTS!. Dan Millrood was one physical therapist that we contacted. He has worked with a lot of people with autonomic disorders and I even have a paper written by one of his students. I think he is on the east coast. I would also just keep giving your physical therapist as much info as you can on your disorder. (I don't know if you have POTS or another similiar to it) I gave my daughter's therapists lots of reading material and I know they also went online to some of the forums as well. I hope some of this info helps or feel free to message me. Brenda

I'm waiting to hear from others as well. My daughter was a patient of Dr. Barboi and for now, we've been seeing Mary, nurse practitioner. Is this the doctor taking the place of Barboi? My daughter had an appt. with Mary last week and Mary sounded very positive about the new doctor coming but I can't remember the doctor's name and Hiner doesn't sound right to me. I know they were getting more than one doctor though in place of Drs. Jeradeh and Barboi. Brenda

Thanks everyone for posting! I'm inclined to believe you that Benadryl can become addictive as it seems like it's doing absolutely nothing for her anymore. The same goes for the melatonin. Lenna, what is cyproheptadine? I actually decided today to call her doctor and get her in again to hopefully, figure out something to help her. This has been going on long enough and getting worse so it was time. @Katybug, I'm glad you mentioned that formula. I bought some of that last year for myself and never used it. I think we'll give that a try. Brenda

Lately, I've been hearing that Benadryl isn't the safe drug we think it is. My 16 yr. old daughter has been taking 50mg of Benadryl every night for probably the last 5 months along with 10mg of melatonin. I've heard from some parents of POTS kids and a nurse practitioner that we recently saw for my daughter's cold, that taking it long term isn't a good idea. The frustrating thing is what else should she take then to get some sleep? When I called her POTS doctor last time, she wanted to prescribe a antidepressant. The side effects were many along with weight gain which really didn't thrill my daughter! How can that be a better alternative to Benadryl??! Any advice out there on this? I want my daughter to be able to sleep well but I also don't want her to end with long term sid effects from taking benadryl. Brenda

I'm the mother of a 16 yr. old and her main caregiver. As a mother, I hope my daughter never feels guilty for being taken care of and you shouldn't either! As mothers, when our children are sick, it's the worst and you would gladly take it for them no matter what! At the worst time for my daughter, she was unable to walk, sit, or stand at all. She then underwent vestibular therapy and made a huge improvement. On Christmas day of 2010, she surprised my husband, my other daughter, and me by walking a few steps on her own! She had been working on that behind our backs to surprise us! It was the best present I ever got and made me the proudest momma on earth! I hope and pray that with this new doctor and the support you have, that you will have better days ahead! Brenda

Thanks for the suggestions everyone. I have to agree with Batik in that I'm very leery of Ambien. My neighbor used to take it cause of shift work and not sleeping well and he had bad hallucinations on it. I also agree with Batik on teenagers having different sleep cycles. The problem is that our schools don't seem to know that or care! I read research saying that schools should begin later for middle and high schoolers and early for elementary school aged children. Unfortunately, our school is the opposite although Liz's school day for her begins at 9am. Once she is asleep, she sleeps through the night without waking up constantly so I don't know if I'm ready to have a sleep study done. If worst comes to worst, we may just have to get rid of one of her morning classes and see if she can take it in the afternoon or online. Brenda

I searched for answers to insomnia issues and couldn't find anything helpful for our situation so sorry if I'm repeating a question. My teenage daughter is having problems with sleep. It's been probably 6 months that she's been taking 10mg of melatonin for sleep. Since school started, she's also been taking Benadryl. Along with insomnia, she's having problems with fatigue during the day which also tends to make her dizzier at times. I think it might be the Benadryl so I'm wondering if there's something else that has worked for others. She already takes Xanax for headaches which doesn't seem to helping either. It does seem to me that when she gets enough sleep that she doesn't have as many headaches. Brenda

I know we've been told over and over again to keep our daughter moving no matter how small the movement. At one point, her only exercise was doing leg and arm exercises while lying on the floor. We also took her to a pool where she would lay back on two noodles and just kick her legs around. After awhile, she was able to do the exercises with small weights. She then graduated to doing more core exercises along with the other ones. I would say no matter how small the movement for you, it would benefit you in the long run. It certainly seemed to help my daughter's recovery. Brenda

I agree with Firewatcher and others and was told by Dr. Grubb that hormones play a huge part of it for adolescents. My daughter was young (almost 11 yrs.) when she be ame sick with POTS. Dr. Grubb said in his experience that the younger the patient gets it, the better chance they have of getting rid of it all together. My daughter gradually improved over 3 and a half years, then crashed big time and for awhile, was back to being bedridden for most days. Now, she's been doing much better again since the end of the school year. I think some of her issues stem though from her hypothyroid issues. I'm still trying to find a good doctor for that!

I think we all have different definitions of the word "crash." I called it my daughter's "crash" when she went from almost normal one day to being completely symptomatic the next day. Her dizziness, headaches, and insomnia were back along with extreme fatigue. She was back to lying around most of her day and for the first time in almost 5 years of POTS, she had to go on homebound. This crash lasted from about October to May but I think it would've been shorter if she hadn't picked up every virus/illness on the face of the earth! @Christy, my daughter was very much like you're describing with your son. She wasn't in bed all the time but she was unable to stand, sit, or walk for 3 and a half years. She had many more bad days with the dizziness than good. Now, she has more good than bad days. I hope and pray that will be the case very soon for your son. My daughter is 16 and I already feel like she's missed way too much of her childhood/teen years.And it's always that balancing act of "should he/she go out with friends or will he be too sick the next day?" It's so frustrating to always trying to anticipate what will happen next!

Thanks everyone! Those of us who are the caregivers as well as the ones who suffer understand how the little things in life mean so much more!

Just wanted to share this one here since I can't on Facebook! My daughter who has POTS has a boyfriend. Maybe to other people that isn't a big deal but to me and my family it means normalcy! Since she's only 16 who knows how long it will last but after the terrible fall/winter she had with her relapse, I am so incredibly thrilled that she's out having fun and being a normal teenager. Tonight is the first night she's been home in a week and that's good since she did need to rest a little today. Just needed to share. She would see it one Facebook and be embarrassed! Brenda

My best advice to you is go with your gut and it sounds like your gut reaction is to find a more knowledgeable doctor. It's been 5 and a half years and lots of doctors tried before my husband and I felt like our daughter was finally seeing a great doctor. He was very knowledgeable, great at communicating, and had such a great bedside manner. I wish we could've found this doctor long ago! We're so sad he's now moving to another hospital although we may just drive a little further to see him! Just curious but did you have the sweat test run on you as well? What are your symptoms? Good luck! Brenda

I forgot to say that my daughter is walking, sitting, and standing now. She had a rough year in school this past year but just rode a roller coaster this weekend! Totally surprised me that she could handle that again! Miracles do happen and it's so nice to see my daughter enjoying herself and doing normal teenage things! Brenda

I'm so sorry to hear that you're bedridden. I don't know if telling you about my daughter will help but you never know. My daughter has POTS and dizziness has always been her worst symptom. She was so dizzy for three and a half years that she was unable to sit, stand, and her walking required her holding on to the wall or someone. At school, she was in a recliner and at home, the sofa. She was horizontal for that entire time. She describes her dizziness as she is spinning and her dizziness isn't due to blood pressure either. When she did walk, she would walk almost to the ground with her body moving back and forth. It was awful to watch but we encouraged her to walk and move as much as possible.She would kick around in a pool while lying on a few noodles and she went to physical therapy once a week and did leg and arm strengthening exercises at home as well. After the 3 and a half years, she began to show signs of improvement, so her physical therapist suggested that she try vestibular therapy next. She went 3 times a week for the entire summer of 2010 and went from hardly being able to sit or stand in June, to sitting up the entire first day of high school! Since that time, she's had some set backs but has never gone back to how she was before. Now, I don't know what age your are and if you're an adult, your outcome and diagnosis can be different than for an adolescent. I still wanted to tell you our story to give you hope and to know that like others have already said, do a little at a time. I know it's hard and there were days of watching my daughter struggle in therapy that I just wanted her to stop butr it was all worth it. If you don't already have a good doctor who is knowledgeable with autonomic illnesses, I would recommend getting one. Also, medications can help and even though my daughter never found one to help her dizziness, she has been on other meds that have helped the other symptoms. I hope you find the help you need and take care, Brenda

Good for you and yes, it does give hope to the many people suffering. Even if you don't find a cure for POTS, I'm glad to know that someone like you who has been through so much already will be in the medical field. You will be a better doctor because of what you've suffered and lived through and we certainly need more doctors out there like that! Congrats! Brenda

Petunia's Mom - I can so relate to what you're going through. My 16 yr old daughter has also been bad for the past 3 weeks. We're actually on week 4 of being home from school again. Last October, she had a major relapse after almost being back to normal. Ever since then, she's been back and forth between feelling good and bad. She got stomach flu in January, a cold in Feb. and now another cold/allergies. Each time, she was going to school part-time and then back at home. Now, we're trying to figure out what to do for the last few weeks of school. I hesitate to push her as in the past, it's just made her crash even worse. It's very frustrating as it's always a guessing game as to what we should do. I understand the feeling of not thinking you're doing enough and always questioning yourself. I've been there so many times in the last 5 years and even though I have a husband, I'm the sole caregiver and a lot of it falls on me! Things that I have learned is to keep your daughter in touch with her friends as much as possible. We've had lots of sleepovers and get-togethers at our house with my daughter and her friends. I just pushed my daughter to go back to youth group at our church even though she wasn't feeling her best. Just being with other teens her age helps her emotionally. Just wondering if your daughter has a 504 or is in special education. If she isn't, I would strongly suggest looking into that. Then, she doesn't have to worry about her school work and they have to make accommodations for her. It really has taken a lot of stress off of us to have her in the special ed program. Please feel free to message me. It really helps to talk to others who are going through the same thing and maybe our daughters would even connect. Hugs & prayers being sent, Brenda

My daughter was born without a thyroid gland so she's been on synthroid since birth. I would make sure that the endo you go to doesn't just test your TSH. Make sure that they also do Free T4, Free T3 and two antibody tests as well, TPOab and TgAb. They can't get an accurate picture of what's going on if they just test your TSH, which is what many doctors will do! I've been researching natural thyroid medication as well as just treatment in general. From talking to others online, it seems that there are so many people who are borderline like you, who are being told they don't need medication. When they finally push for it or find a doctor to take them seriously, they feel so much better. Too many doctors out there are only looking at the test results and not looking at the overall picture and symptoms. I'm taking my daughter to a new endo in the hopes of finding someone who also treats to the symptoms. Can't say I'm that optimistic since we've been to plenty of doctors who don't listen! To me, having a thyroid problem along with autonomic is very confusing since many of the symptoms overlap. Do you have other hypothryoid symptoms besides fatigue? Brenda

What are your shirts and do you sell them online? Brenda

Thanks Katie for the kind words for moms & to everyone else. I really appreciate the prayers! Last night and tonight, I took long walks as I told my husband that I have all this pent-up anger and I feel like punching walls! I'm really not a violent person but it just seems too much to bear. I'm really trying not to have a pity party for myself and my daughter but I just know that all of you on this forum are going through so many of the same things. @Ramankentesh, I don't pretend to know exactly what my daughter and others with POTS go through but I do have debilitating migraines as well as other health issues myself so I do understand some of it. @Christy, what does your son take for restless legs? Just curious since I have that. Brenda

Well, here we go again. My daughter is home again sick with a sore throat, cough, and the lovely dizziness that her POTS seems to bring on with the slightest virus! I can't tell you how frustrated I am for her. She had a bad relapse last fall and finally was getting back to part-time days at high school. It just never seems to end and right when she gets back into the groove and finally gets to have a little fun, Wham! Back to all the symptoms and lying in bed! I wish so badly I could just take this from her. My motherly heart sometimes just can't take it another minute! Sorry but just had to vent and I know this is a place where I have people who truly understand what I'm talking about. I have friends and family who have been there for our family but even they don't understand what it's like to live for years on end with illness. Thanks ahead for listening. Brenda

On the thyroid issue, I would like to know what the doctor tested? Only testing your TSH means nothing. He should have done a TSH, Free T4 and a Free T3 at the least. Long ago, my daughter's doctor told me they have many POTS patients who had hypothryoidism as well. They didn't know why it seemed so common. My daughter was born without a thyroid gland so she's been treated since she was born. Do you have other symptoms besides the fatigue like dry skin, hair loss especially eyebrows, constipation, irregular periods? There are many more symptoms and the interesting thing is that many of the symptoms are the same as POTS like brain fog and dizziness etc. I agree with Marti about the test results. Many people with thyroid issues are now realizing that their test results are less important than how they're feeling. As far as medications for fatigue, my daughter was put on Provilgil which helped a little. For her, I pushed for the doctor to let us try more thyroid medication and it worked. She is still fatigued at times and needs lots of sleep but she isn't sleeping 16+ hours and waking up still tired like she was. I sincerely hope you find something to help. I don't how old you are but you look young and I hate to see you struggle! My motherly heart goes out to you & I send big hugs your way! Brenda