bren62

I'm from PA, not too far from Harrisburg. Unfortunately I'm still trying to find a good doctor to follow my daughter and address all her problems. She has been diagnosed with Neurogenic syncope. I have had her to 3 different cardiologist who have said oh she'll out grow this, she won't die from this, and so on. Well it's been 2 years now and she continues to faint several times a month and has a lot of pain and other symptoms. I'm still trying to find a Doctor for her that can address her syncope and her other symptoms. Good luck in your search. Brenda

Yes I agree, it's rare but it can happen: chest pain, palpitations, rapid heart beat are all on the list of side effects from effexor. My children are super sensitive to meds too. They get side effects and react differently to meds then most people. Just because the majority of people can take something doesn't mean every one can. My daughter took 3 doses of provigil and had chest pain and shortness of breath each day she took it. Chest pain isn't a common side effect of that drug either but these meds are chemicals and chemicals react differently in everyone. Call your doctor and talk to him about it. I wouldn't take something that gave me chest pain every day I took it.

Where did you purchase your pillow? Do different stores carry them?

I'm glad you asked this question because I thought it was just me thinking this. My Beth is more symptomatic when it rains or when the humidity is high. We had high humidity with storms 2 days ago and she was sick most of the day. Tachycardia, chest pain, trouble breathing and eventually passed out during the thunderstorm. This wasn't the first time she has been sick during bad weather. I think the pressure changes and humidity levels definitely effect her.

I understand your situation and know exactly what you are talking about. I just had my daughter down to Vanderbilt earlier this week for a clinic appt, not as a research patient. I was amazed that the cardiologist listened to my daughter's heart sounds through 2 layers of clothing, one being a sweater. Her heart rate and blood pressure were all on their good behavior and he concluded her autonomic system was working fine. It's ok to vent and you are no alone with feelings of being misunderstood and not taken seriously. It's very frustrating when the specialist only look at the pieces and not the whole picture.

Were you in contact with latex during your MRI? Most dentist wear gloves and maybe you are developing a reaction to latex. It's just a thought and something to watch for.

I'm glad some one has brought this topic up. My Beth is 19 and hasn't had a route canal yet but has struggled with lots of cavities over the years no matter how well she takes care of her teeth. The one major problem she has had is that her teeth want to shift. She wore braces for 6 years and now retainers. If she doesn't wear them faithfully her teeth want to move right away. It's like her jaw bone isn't firm. Any one else have that problem? Brenda

My daughter is dealing with similar issues. She had a positive TTT a year ago but not sure if it's NCS or POTS because the doctor interchanged the terms and was pretty clueless. She has a sleep disorder and ADHD also. I'm taking her to Vandy in June so hopefully we will have a better idea what is all going on with her after that. It has been a difficult 18 months dealing with all of this. Her doctor kept telling me she would be better by now when she is worse then ever. It is difficult to see our children suffer and stand helplessly on the sidelines not knowing what to do. I have spent many nights crying myself to sleep and praying for answers. I don't have POTS that I know of but syncope episodes run in my mom's side of the family. So there is a very good possibility that she has inherited a genetic trait that made her susceptible to this. It is easy to fall into the guilt trap and blame yourself for her illness but none of us have control over our genetic makeup. Since you have the same thing it will be a little easier for you to relate to her and know how she feels. My daughter gets frustrated with me at times because she thinks I don't understand but i try my best. It's just hard as a mom to know when to push and when to back off. If you ever need to vent feel free to PM me. I understand what you are going through and sometimes it's good just to sound off to others who are going through it too. Good luck to you and your daughter Brenda

Most of the parks have electric scooters for rent which are nice. If you decide to go on any rides use the handicap entrance. Most of the rides and shows have one, just look for the sign. The wait is shorter, you can take the scooter or wheelchair in that way for a lot of the shows. Your family can go with you through the handicap entrance so you can all be together. Six years ago my mother went with my family to Disney World. She had had a stroke and required the use of an electric scooter. We all used the handicap entrance for the rides and shows she could go on or see. It was so nice, not long lines, and the staff was extremely helpful. Have fun and good luck on your trip! Brenda

My daughter took it for 3 days and each day she took it she had chest pain and shortness of breath. It made her heart race and she ended up fainting each day she took it. It is a stimulent, so if you are sensitive to drugs that increase your heart rate, proceed with caution. Good luck Brenda

My daughter was referred to Mayo MN over 3 weeks ago. The doctor has had her chart on his desk for almost 16 days. I have called weekly only to be told the chart is still being reviewed. What is considered the normal wait time for them to review a chart before receiving an answer? Is it easier and quicker to get into Vanderbilt? This process is very discouraging. Brenda

My daughter had an endoscopy done 2 weeks ago. It went well and she slept most of the day. They took a biopsy of a polyp in her stomach and a biopsy of her duodenum. He duodenum was slightly gray in appearence. This was very noticable in the picture they gave me. Almost looked mottled to me. Has anyone ever heard of this before? At the time, I just didn't think to ask about it. The doctor didn't seem concerned and said we'd have to wait on the biopsy results. Brenda

Look in the yellow pages under physicians and look for ear, nose and throat or also called Otorhinolaryngology. I had a test done to check my inner ears. I forget what it was called but I felt very nauseated for awhile afterwards. They lay you flat and have you turn your head many different ways and you look at different lights. They check your eyes to see if they move with the movement. They also put warm water into your ear. The test showed that I had 70% function of my rt inner ear. No wonder I was dizzy and that was when I was feeling better. You could also call your primary doc for a referral. Good luck Brenda

As far as I know all the lines go to the heart or right near it. If a PICC line becomes infected it's just as serious as any of the other lines. I have worked with ports off and on for a long time. I did see one that became infected and had to be removed, but that was just one that I know of. The one benefit of a port is if you don't need to use it on a daily basis you can remove the needle and be free of it for awhile. If the port is used continuously then you will need some kind of dressing to cover the needle, and the needle will need to be changed either weekly or every 2 weeks depending on the doctor's protocol. Since picc lines are so small they can block quicker then the other lines. It all depends on the line, what it's used for and if it's properly cared for. I'm not familiar with the new picc lines that are used for long term use. If I needed a line for long term use, like more than a year, a picc line would not be my first choice. Keep asking questions, weigh the pros and cons and then decide what would be best for you. Good luck.

I just love when doctors pass the buck and it happens so often. Just keep making noise. I agree with the others, call vanderbilt and get your records or a letter stating what meds you need and the reasons why. Either have them send it to you or your PCP. Talk to your PCP again and if he still doesn't feel comfortable prescribing the meds, even after getting info from Vandy then have the PCP refer you to a neurologist, cardiologist or internist who will feel comfortable treating you. I would put the pressure on the PCP to help you with this. I would make it clear to the PCP that with out your meds you will end up in the hospital. Good luck but don't give up. Bren

I'm glad you had good experience at your appt. I've been tempted to take my daughter to see Dr. Grubb, but haven't made up my mind yet. It's at least a 10 hr trip from here. I hate driving in cities and highways. I'm curious about EDS. How is one diagnosed with this? Are blood tests done for this and if so what types?

Usually MRSA is an infection found mostly in the hospitals. Most people who are infected with MRSA have comprimised immune systems and have used multiple antibiotics in their lifetime. Poeple with MRSA sometimes have to be treated with strong antibiotics, sometimes IV antibiotics. Good hand washing is the best defence in protecting yourself and others. You can buy disposable gloves at most stores if you feel better using them. Anything soiled with drainage from the sores should be disposed of immediately in trash bags. If your daughter is taking any antibiotics now or in the future, make sure you follow the directions on the bottle and have her take all the pills. Many people with good intentions have not taken the full dose of their antibiotics, saving them for another time. Because of this so many of these diseases have built up immunity to antibiotics. I hope this answers some of your questions. I hope the doctor is wrong and it's not MRSA.

It's common for a person to have both, that is why the doctor is checking you for scleraderma. My father in law has had both for years and has tried many different dreatments. He doesn't have POTS though, so I don't know how that would effect those conditions. He has had to have his esophagus stretched multiple times due to the scleraderma. Being on nexium has helped him a great deal. Scleraderma causes the skin to become tight and nonflexible. It can also affect the internal organs and become life threatening if that happens. My father in law has the chronic kind and has had it for at least 30 years, along with the raynauds.

My daughter has had similar experiences with meds. She tried midodrine for about 2 month, went as high as 10 mg 3x/day and continued to have symptoms and faint. She just tried florinef 0.1 mg 3x/day for the past 2 months and continued to have syptoms and faint with that as well. Last week she weaned herself off of it with my blessing. Why take something that gives you side effects and isn't helping you? She sees a new cardiologist on Thursday for a second opinion. So we'll see what happens. It is a trial and error thing with meds. What works for one may not work for another. We're still trying to find the right med for my daughter, so hang in there.

My daughter is 18 and has many of the same syptoms that your son has. She has NCS. It has been hard getting a proper diagnosis, in fact her cardiologist interchanges all the terms. I am in the process of finding some one else more knowledgable. She did have a TTT done at a teaching hospital, so it was done properly, and it was a positive test. The one doctor suggested antidepressants for my daughter as well, but I'm not ready to go there. There are other meds to try first. Plus, the use of antidepressants should be done with caution in teenagers. Too many times doctors want to put patients on psych meds when they don't know what else to do. Along with a TTT you might want to have a king of hearts monitor, to monitor his heart for a month. Any time he has an episode of chest pain, palpitations, near synope or syncope you press the button and it records 45 sec before and 30 sec after pressing it. If he's having periods of tachycardia, it would show up on it. Good Luck