It's Back!

[Aquadiva]

My daughter, now 17, was diagnosed with POTS 2 years ago. After about 6 months, and using metoprolol, she was doing great with POTS. Had some times when she didn't feel well, but we pushed the fluids and salt, and things seemed to turn around pretty quickly. Now, she appears to be in a full-blown flare. Luckily, she is still able to go to school, but is SO exhausted and can't concentrate. She often just stares into space. This time, she isn't as "dizzy" as she was when first diagnosed, but the fatigue is terrible. I know you can all relate.

She wanted to start the metoprolol again to see if it would help, but we can't remember if it took a while to help or if it was more immediate. Anyone have experience they could share as far as how long metoprolol took to start working? She has only been on it for a couple days, but so far no difference in symptoms.

I am also very curious about her trying ritalin or another ADHD medication as fatigue and concentration are her main issues. It would make perfect sense to me that it would help her and I feel it is worth a try. But, I am worried to "ask" for such a drug as there has been recent events in the area of teenagers abusing prescription drugs--even to go as far as to some just getting caught at her school sharing sleeping pills with friends. But, I will still inquire.

Her pediatrician about made me blow up, and had her with tears about to flow over. The dr. is pretty anti-med and didn't want to put her on "another" medication. Well, WHAT are our options? This seemed to work in the past. She did prescribe it for her, but when I asked if she heard of treating POTS with ritalin, wouldn't even think about doing ritalin without some documentation that it was prescribed for POTS. So, I did send her POTS dr. an email asking about it, and hopefully we get somewhere with him. Her ped thought maybe it was just "that time of year", she wasn't resting enough, maybe it is a virus, blah, blah, blah. I had to try very hard not to show my frustration. My daughter was very frustrated as well. With everything she has been through, she can tell the difference by now, and knows her own body!

Sorry to vent, but we are at a frustrating point and do NOT want her to go as far down as she was 2 years ago when she couldn't even go to school!

[lieze]

I'm so sorry to hear your daughter is having problems again.

I really don't have any experience with meds but hope that you do get the help that she needs and she feels better soon.

lieze

[bkweavers]

I know there are some medications that help fatigue in POTS patients. My daughter was on Adderall for a short time but not for the reason of fatigue. They were seeing if it would help her dizziness. It didn't and so we went off of it. She is on xanax for headaches and I know there are some parents who wouldn't want their child on that because of it being addictive. I say which would you like - a child who has daily pain for a year or a child who is without headaches and can function better? I know that other people have found success with Adderall and other meds like it and if it works for your daughter, it will be worth her having better days then being miserable.

I don't know how many medications she is on right now but I do know that Dr. Grubb told me that teenagers' bodies change so much. A medication may work at first and then stop working. A med may not work the first time you try it and then work later on. It's just the nature of the teenage body. I think it's definitely worth trying new meds with her.

I hope her POTS doctor is more receptive to trying new meds and that you have some success with him/her.

My prayers to you,

Brenda

[Aquadiva]

I know there are some medications that help fatigue in POTS patients. My daughter was on Adderall for a short time but not for the reason of fatigue. They were seeing if it would help her dizziness. It didn't and so we went off of it. She is on xanax for headaches and I know there are some parents who wouldn't want their child on that because of it being addictive. I say which would you like - a child who has daily pain for a year or a child who is without headaches and can function better? I know that other people have found success with Adderall and other meds like it and if it works for your daughter, it will be worth her having better days then being miserable.

I don't know how many medications she is on right now but I do know that Dr. Grubb told me that teenagers' bodies change so much. A medication may work at first and then stop working. A med may not work the first time you try it and then work later on. It's just the nature of the teenage body. I think it's definitely worth trying new meds with her.

I hope her POTS doctor is more receptive to trying new meds and that you have some success with him/her.

My prayers to you,

Brenda

Does your daughter see Dr. Grubb? I agree about trying medications. If getting off a medication is our worst problem, I'll take it! I had a son on ritalin many years back, and he never got addicted or dependent. He was on it for ADD. In fact, we had a hard time getting him to take it! I think that dr.'s are sometimes too afraid to prescribe drugs because of them getting a bad rap by society. Well, as you stated, is it better to suffer or take a medication and risk dependence and at least have a quality of life? It has also been my experience that kid's pain and suffering isn't taken as seriously as an adults. Probably because a child isn't going to push the issue--guess that leaves us to do that for them! Oh, and they are SO quick to suspect depression!! That drives me crazy!! When my daughter was so sick for months on end and couldn't even get out of bed, she was being questioned by the nurse (to see if she was depressed), and one of the questions the nurse asked her was if she had one wish in the world, what would it be? She didn't say, to not have to go to school, no homework, to not have to do chores, to have all the money in the world or EVEN not to have a chronic disease. NO! She said, "to be able to go to school." I think that pretty much said it all. But, she HAS done counseling with a psychologist, and the psychologist thought she was doing great! Not to downplay the psychological impact these illnesses can have on a person, we may very well go back to the psychologist just to make sure she is still coping well.