bkweavers

Thank you to Mack's Mom for putting this question out there! I've been feeling on the down side lately and I'm not even the one who is sick, it's my young daughter! First of all, I'm so thankful to God for giving my daughter, Liz such a wonderful attitude. She is so positive and can still keep a smile on her face. Many people have told my husband and me how they can't believe her strength and attitude despite this debilitating illness. She keeps on living to the best of her abilities. She is amazing and I thank God for her. Others have said this but I am more compassionate and not so quick to judge people. You never know what people are going thru. My husband and I have had our ups and downs since our daughter became ill but I think we are closer than we were before. Both of our parents have been supportive both financially and emotionally. I am so thankful to God for family! I've become close to others going thru other illnesses. A woman from our church died of cancer last year and even though we aren't dealing with cancer, her and I had so many things in common. Now, I've also been talking with her husband. There's just something about going thru difficult times that connect you with people in such a special way. I think in the years to come (and we hope and pray that Liz grows out of her POTS) we will see many more good things to come out of this. I know God has huge plans for Liz and I can't wait to see what they will be! Brenda

Worried Mom, Just had some other thoughts while I'm still on this forum. Start a journal of how your son feels from day to day or however often you can write in it. I started that from the beginning with my daughter and I can't tell you how many times I have referred back to it when doctors have questions about when a med was started, what her symptoms were doing a year ago, etc. Also, get all your sons medical records in case you end up going to another doctor. I can't tell you how stressful it was to try and get records, x-rays, MRI's etc at the last minute. Hope any or all of this helps you. Just want you to be as informed as possible so you don't have to go thru the same problems I did. You certainly don't need any extra stress being pregnant! I'll pray for your baby too! Brenda

Hi Worried Mom, My heart goes out to you! I know all that you're going thru because our 13 yr. old daughter has had POTS for over 2 years now. I agree with everything that was already said except I also wonder about a sweat test along with the tilt table. My daughter had both of those tests done when she first became ill. I don't know if they need the sweat test to tell if he has an autonomic illness or not, but it's something else to ask the doctor. Just some advice that I've learned along the way. Don't stop until you find the right doctor for your child!! We had some great doctors at the beginning who diagnosed my daughter very quickly, but we didn't stay with them because they hadn't seen many cases of it. We then went on to have an awful experience with a doctor who I think thought she was God! Finally, I said enough! With someone's help, we ended up seeing Dr. Grubb. All of the time on the computer and the phone was well worth it to know that we were seeing someone who has so much experience with adolescents. It can be so different for adolescents vs. adults with these illnesses. My prayers go out to you and your son. I'm sure right now you feel like your world is going out of control. In the beginning, I spent so much time online researching this. Sometimes that's a good thing and sometimes it isn't. You can read things that can scare you, so just be careful. Try not to worry about your unborn baby. I know that's hard. I have another daughter who is turning 8 this summer and every once and awhile I worry about her getting it. I try to push that out of my mind because I just need to concentrate on the present and getting my other daughter healthy and keeping our whole family healthy. This forum and others can be a great source of help and comfort. There are very few people out there who know what POTS is and the people here really know what you're going thru. Feel free to PM me if you have questions or just want to talk. Think of this e-mail as a gigantic hug to you! Take care and God bless, Brenda

I know the majority of people on here are adults but you're forgetting about the population of adolescents with autonomic disorders. My 12 yr. old daughter became sick on March 13th of 2007. She did have a fever and body aches along with her dizziness and headache. The fever and aches went away and the rest has stayed to this day. I know people would say that her POTS came on soley because of the virus but my husband and I strongly believe hers came on because of puberty. Looking back 2 years prior to 2007,she would always get dizzy and have a headache each time she was sick and this was the same time her body began to change. Another interesting thing about her is she was born with congenital hypothyroidism which means she doesn't have a working thyroid gland. She was also born prematurely at 26 weeks. No doctor has thought the prematurity was significant but we have been told by Dr. Grubb's office that a lot of their patients with POTS also have thyroid issues. I've asked my daughter's endocrinologist if he knows of any connection between the two and he had no answers for me. There are genetic factors also. My husband's family are big on fainting and migraines. My side of the family has terrible migraines and other neurological diseases. I have an aunt who I swear has POTS but doesn't want to bother with the testing because she says her medications help her dizziness. It's just so interesting and I wish their would be more research out there on adolescents. I wish I could get more answers concerning my daughter but for now, we're just trying our best to keep her as normal as possible and hopefully, she'll grow out of her POTS. Brenda

Hi Tammy, I'm finally back on this forum after a long time away. My soon-to-be 13 yr. old daughter has had POTS for 2 years now and was born with congenital hypothyroidism(No thyroid). She has always been on synthroid because we found out at age 3 that she has no thyroid gland. When we went to Dr. Grubb, he told us that many of his patients have thyroid problems. Isn't that interesting? He didn't tell us if they know why that is. I've asked my daughter's endocrinologist if he could explain any of this and he had no answers either. One thing I'm wondering is if you get your free T4 and T3 checked along with your TSH levels. Many years ago, the doctor was only checking 1 or 2 of my daughter's levels and he started to do all of it to get a complete picture. Maybe that might be something to look into if you're not getting those other levels checked. Take care, Brenda

I'm wondering if anyone sees Dr. Low at Mayo or has any experience with Dr. Fischer? I would like my daughter who is 11 yrs. old to see someone at Mayo. I know Dr. Fischer is a pediatrician and I've seen his name on many other websites. What kind of doctor is Dr. Low and does he only see adults? Also, I've heard that Dr. Grubb had some health issues himself and isn't seeing patients right now. Can anyone confirm that? We live in the Midwest and really wanted to see if we could see someone within driving distance. Thank you! Brenda

Years ago, my husband had a lump in his ear lobe that hurt. He kept putting off going to the doctor and the lump got bigger and bigger. Talk about being gross - one day the lump exploded and then he had to go to the doctor! It ended up being a cyst and he had to have it removed. I think that taught him to get to the doctor sooner. You might want to get it checked out soon. It might just be the same thing my husband had. Good luck! Brenda

Hi Gail! Thanks for asking about us! I couldn't get on this forum for a couple of weeks so I'm glad to be back! Something was either wrong with my computer- who knows? Anyway, we are hanging in there. We have had a couple of difficult weeks with everyone in my family getting sick! First, my husband a cold and then my 6 yr. old had a ear infection and then I had a cold for over 2 weeks. Then Liz (who suffers from POTS) got an ear infection and a cold. She ended up being home from school for 2 weeks and just feeling lousy. She's finally feeling a little better and hopefully, we can get her stronger again. Nothing new on the subject of meds or doctors. My husband and I are going to start working on getting some appts. to maybe Mayo and Dr. Grubb in Ohio. We still are convinced that something else is going on with her. I can just feel it in my gut. Brenda

My mother went to the Diamond Headache Clinic 6 years ago because of her daily migraines. She hoped that because of their reputation, she would get some answers and some help. Instead, she had a horrible experience there. She had a psychologist who talked to her for an hour and then told her that the reason behind her headaches was because she had never dealt with her childhood! That was after 1 hour! My mother had such a terrible migraine one day and began to cry and hyperventilate so they called in psych and made her attend a meeting immediately. She said she could hardly sit up because the pain was so bad and yet they insisted she go to the meeting because of being upset. After almost a week of being there, my mother was sent home on more meds than she could count. She was so drugged up that now, she can hardly remember the weeks after coming home. We all noticed the difference in her. She couldn't remember anything and had a difficult time concentrating. Finally, she took herself off of the meds and instead found some relief at our local hospital. The local hospital has a pain clinic and she did get some help from them. Besides seeing the doctors there, she also had to see a psychologist. But this time the difference was that the psych doctor gave her relaxation techniques and tried to help her in her day to day struggles with migraines. When I read your letter and your concern about all of the psych questions from the Diamond Clilnic, I just had to write to you! Maybe you will be able to get some help from them but after what my mom went thru (and she's been to a lot of doctors for her headaches) I just wanted to make sure that you heard her story. I get migraines as well and I can tell you that stress doesn't help my migraines, but it certainly isn't the only reason I get them. I get migraines from weather, food, and my period. Good luck to you Brenda

I have some more questions concerning my 11 yr. old daughter and the meds she is on. Back in August, my daughter was only on Pindolol, a beta blocker. She takes 1 5mg in am and 1/2 tablet in pm. Then, about halfway thru Aug., they decided to try Florinef with her again. They had tried it before she was on the beta blocker and it made her feel worse. They wanted to see how she would do on Florinef with the beta blocker. (she is on 1/2 tab of .1mg Florinef) As if her dizziness and the way she walks wasn't bad enough, about 3 weeks after being on Florinef, she became more dizzy and the way she walks got much worse. At the time, we thought that maybe the start of school (she goes half days) had been a stresser on her body and that's why she was more dizzy. Now, when I looked back in a journal I keep, I wonder if the Florinef is the cluprit. Now, after coming back from Children's in Milw., she is on another med, Lorazepam in the hopes that it will help her dizziness. She is on all of these meds and so far, nothing has really helped the constant dizziness and she is actually worse since August. Children's Hospital told us to slowly get her moving thru physical therapy and walking which we have started. They also want her to see a psychologist specializing in biofeedback because of the anxiety she gets when she does have to sit or stand. We are willing to try all of these things but if the Florinef may be making her worse, I'd like to get her off of it asap. I have been on this website nonstop lately and have read thru many topics about Florinef. The thing is, I haven't run across anyone yet who seems to have the extreme dizziness that my child has. She is dizzy all of the time. She explains it as she is spinning and not the room. She basically spends her time reclined and can do very little at this point. I hear a lot about fainting and dizziness at times, but no one who is dizzy all of the time. We are now going on 8 months of this and I wish so badly that something would give her some relief! I hope I haven't sounded like no one else on this forum is suffering like my daughter. It's just that some of the things she's going thru, don't sound quite the same as other people. Is it maybe because she's an adolescent going thru puberty instead of an adult? I continue to wonder what the doctors are missing even though we've been told that there are no other tests to be run on her. Please - any suggestion or comment is much appreciated. As you can probably tell from this note - I'm having one of those bad days where it seems like this will never get better! I want to see my child get some relief from her dizziness! Thanks in advance for your help! Brenda

Hi, I've been reading thru the topics on this forum for hours trying to figure out where to bring my 11 yr. old daughter. We have been to many doctors since she was diagnosed with POTS. Have not found a doctor to fit our needs! We are heading back to Children's Hospital in Milwaukee. We began with them and even though they are a great hospital, they do not have a lot of experience with adolescents and POTS. They are going to look over all of her records and see if they can help us with the next step. I've heard of a Dr. Fischer at Mayo as being a good doctor for adolescents. Has anyone had any experiences with him? I keep hearing about DR. Grubb in Ohio and my husband and I are thinking about trying him as well. Any thoughts out there would be much appreciated! Off the subject- I sooo appreciate all of you for the information you've given to me and my family already. I don't feel so lonely with what my daughter is going thru. Thanks again! Brenda

Hi jjh, I don't have POTS, my daughter does but I do get migraine headaches frequently. Does the pain present itself on on side only or is it on both sides? A migraine usually is on one side of the head and many times I have pain shooting out of one eye. I'm wondering if maybe you're getting a migraine which would be a different kind of headache than other kinds. I know that Tylenol and ibuprofen, Excedrin do nothing for my pain when its a true migraine. Only Imitrex works for a migraine. Also, I can get very bad tension headaches that again do not go away with Tylenol but sometimes ibuprofen helps those headaches. My period can also bring on my worst headaches. Hope some of this helps! Brenda

I've also emailed the Oprah show about autonomic disorders and I was considering doing it again! Maybe if we all started flooding her email with letters, she'd do the show. There is such a need for people to know about these disorders, especially the medical community! Hope your interview goes well! Brenda

I don't have autonomic problems but I do suffer from migraines. I get about 8-10 per month. I take Imitrex in pill form. I used to take 100mg but it made me so tired and dazed that I now take 50mg instead. Imitrex has been a life saver for me because it works so quickly. I was first on other migraine meds, but they would take most of the day to kick in before I got any relief. I feel for you. Migraines can be a huge stresser on the body and for you who is suffering from other things as well, I can't imagine how it must be. Hope you get some relief from Imitrex! Brenda

I've never done this before but, then again, my daughter didn't have POTS before! My 11 yr.old has been diagnosed with POTS as of 7 months ago. We've been to numerous doctors - pediatricians, ENT, cardiologists, etc. Her 2 biggest symptoms are headaches and being dizzy all of the time. It never goes away for her, even when she lays down. The last doctor hospitalized her to run some tests -EEG, heart monitor. She was seen by neurologists, cardiologist, psychologists and after 2 days, the doctor tells us her heart rate and blood pressure are normal and she's healthy. Healthy! I wanted to scream at her and say, "But she's still dizzy!" We are not going back to that doctor. She wasn't willing to fight for our child to get her better. The question I have is - "Does anyone else with POTS have trouble walking on their own, sitting up, or standing." As of right now, our daughter can't do anything but recline. She can't stand at all or sit and when she walks short distances, she is hunched over and grasping for things to hold on to. We try to have her walk this way on her own, but it's hard for her. The last doctor took one look at her trying to walk and stand and said she has never seen that in her other patients with POTS. But, she seemed to give up quickly when the tests came back normal. My husband and I would appreciate anything you can tell us. We're very new to all of this although we've been through health issues with this child before. We aren't sure what doctor to go to at this point, but our gut tells us that something should and needs to be done for her. She is going to school part-time and really has little fatigue. She is on Florinef, Pindolol, synthroid and ibuprofen for the headaches. The doctor we saw last wanted her off of the beta blocker and on neurontin. My husband and I decided not to put her on anything different until we get to a doctor we trust. We are possibly looking at Mayo or Ohio for her. Any prayers for my daughter and our family would be very much appreciated. I look forward to talking to all of you and knowing that our family and our daughter are not alone in this. Brenda