Motivating 13 Year Old With P.O.T.S.

[DebraNeumann]

Hello everyone and thanks in advance for your input. i really value all the experiences out there that may be helpful to us. my daughter was recently diagnosed with POTS and it has been a steady downhill course since August for us. Her physician stresses that it is important for her to do as much as possible each day. She is pretty lethargic -- doesn't want to get up, or to drink lots of fluids, or to take meds. The past 2 weeks she has mostly just been in bed, quite irritable. I am wondering about ways that others have helped their children/adolescents apply their will to the healing process ( i know there is a physiological reason for her symptoms and it is not just a matter of will). Any ideas or vignettes of how you have helped your teen would be appreciated so much -- thanks!

[Christy_D]

Debra,

I can't really help you on this one. There were months here and there that my son basically only left his room to go to the bathroom. I tried to get him out and even to another room of the house, but he was really feeling badly. So I know as much as the doctors want them moving around, sometimes they are just too sick to do it. Once he started to feel a little better he became more social. Have they checked your daughters Vitamin D levels? Last February, my son was in bed almost the entire month and we had to cancel his homebound teachers almost every day. They discovered his vitamin D was like at a 7, way too low. One week after starting vitamin D he felt so much better and his energy increased. If she isn't getting any sunlight, she might have low vitamin D.

Christy

[Connie]

Debra,

My son is 14 and has POTS with hypermobility and migraines. One of the hardest things to me has been watching him stay in bed and do what I call ?vegetate.? I was always trying to be the cheerleader and pushing him to get up, move around, go walk, do schoolwork. Finally I asked one of his home bound teachers that he really liked and he had been with us a couple of years, how do I motivate him to do schoolwork? (I thought the teacher would have more experience with motivating people.) He looked me in the eyes and said ?This is not a motivation problem. He is highly motivated.? I like you, have listened to the doctors but finally came to realize my son cannot get up every day. My son did great drinking his fluids for two years but is now going through a period he is having trouble drinking enough. A couple of my son?s major problems are extreme fatigue and brain fog. We are ?trying? to home school this year to take the pressure off of him about school. (That was a major issue for us with me being the cheerleader. His doctor finally told me ?When he starts getting better, he will catch up quickly.? 0

I know it is very frustrating and I tried so hard to have him do everything his autonomic doctors told him. I finally realized he will when he feels like it. I still encouraged him and try to think of things he would love to do occasionally. For instance we used to go to the movies and eat dinner after the movie but that has become too much for him. This is one of the hardest things I deal with as a mom. But then I think if this is hard for me, it must be harder for him. He used to love being outside. He was hardly ever indoors.

I hope things get better for you and your daughter. Are you working with the doctor to adjust her medications if need be? Is she trying to go to school?

Good luck. It sounds like you are doing your best. POTS likes to test our patience. This forum has helped me immensely. I finally found people who are going through the same things that I am. They understand. I hope you find as much comfort from this forum that I have.

Hope

[britishangel6]

I don't have a child with POTS but as a POTS patient I can say that the symptoms are really debilitating, which you already acknowledged. The inability to feel good, get out and do things, and as a teen fit in and feel "normal" can be quite depressing so I'd be aware of that as well. Having worked with sick kids I can say that getting them to take pills can be hard. Try to find out why she doesn't want her medicine; does she think other kids don't take meds? do they have weird side effects? Does she think they don't help? Do the pills dissolve and taste bad? Giving teens power over themselves is important and empowering but even parents with kids who always take their meds, ect need to look over their shoulder so to speak, showing them you are still concerned/caring for them and at the same time ensuring they get what they need.

What were her hobbies before all this? Anything that can be adjusted to a seated/lying position. Would she have enough energy to talk to a friend while she sits on the couch if you or someone else brought the friend to the house? Speaking of which, does she still attend school? That alone could be draining all her energy. Hope something helps.

[juliegee]

Hello everyone and thanks in advance for your input. i really value all the experiences out there that may be helpful to us. my daughter was recently diagnosed with POTS and it has been a steady downhill course since August for us. Her physician stresses that it is important for her to do as much as possible each day. She is pretty lethargic -- doesn't want to get up, or to drink lots of fluids, or to take meds. The past 2 weeks she has mostly just been in bed, quite irritable. I am wondering about ways that others have helped their children/adolescents apply their will to the healing process ( i know there is a physiological reason for her symptoms and it is not just a matter of will). Any ideas or vignettes of how you have helped your teen would be appreciated so much -- thanks!

Debra-

So sorry you are dealing with this, too. My son became very ill at 12 y/o and was DXed at 13. he ended up almost missing a year of school....so I get where you are coming from. Dysautonomia is particularly cruel to teens as it strikes right about the time they should be exerting their independence, not becoming more and more dependent. I can understand WHY she is frustrated & irritable.

That's exactly WHY she should be trying her best to get better- drinking extra fulid, taking her meds, and moving as much as possible. I hear your frustration & worry. I'm afraid that something else may be going on. I'm sure you have considered that fact that she may be depressed. (She certainly has every reason to be ) The symptoms of that and dysautonomia overlap...making it so hard to untangle what's what.

Can she still find enjoyment in things that used to interest her? Does she have a time of day that's better? (For instance, my son did awful in the AM & perked up in the PM.) Do you see glimpses of the "old" her during her awake time? Is she eating well? I realize that the ability to eat may be affected by her dysautonomia.... If you suspect that depression may be playing a part in her symptoms, do have her evaluated. A good psychiatrist, who specializes in teens, hopefully can help separate what's physiological and what's emotional. Better yet, SSRI's can help both conditions.

All of us with dysautonomiac teens worry about depression. Trust me, not a week goes by where I don't consider the possibility for my son. When they lie in bed sooooooo much, how can we not worry? That being said, Mack eagerly takes his meds & drinks tons of water. He wants to be well. If your daughter isn't trying, that worries me.

Girls, especially, do better with peer support. Her friends may not "get" what's happening to her and she may be mourning the loss of friendships as well as her old life. You didn't mention if she's well enough to attend some school. Especially if she isn't, direct her to an online resource: dynakids.org They have a forum just for kids with dysautonomia. There she can find her real peers.

It MAY be that her regimen isn't helping & she's giving up. Let us know what you find out. And above all else, please know that you & your daughter are NOT alone.

Big Hugs-

Julie

[dakota]

I mentioned this to my 16 year old daughter who has POTS. She said that one thing that is important for her is to set realistic goals for herself. Small ones that are attainable for her. My daughter found that when she set her goals too high, she got disappointed, and then was not so motivated to try something else. Then she started with small things which she could accomplish, and then worked up from there. And she means really small things, like making her bed. Once she was able to accomplish the small goals, it helped her move on to a slightly larger goal. while the goal of taking a shower may not seem like much of a goal to the average teenager, for somebody with POTS, it can be pretty difficult. Sometimes that is the activity of the day, and if that gets done, then she feels pretty good about it.

[crowebirds]

Debra,

My daughter is 12 and is the same way. She has had this condition all her life, but has worsened over the last couple of years. She has never been able to drink or eat much at any one time. She also has very low energy.

One thing that is a problem for her is consuming cold drinks on an empty stomach. She has a type of urticaria that reacts to cold. To avoid the reactions, she has shyed away from consuming a lot of drinks. We started giving her drinks without ice and eventually she asked for drinks at room temp.

I also found a a flavor of Gatorade that she likes most and she consumes a little bit every couple of hours. This is in addition to what she drinks at each of her meals. It is still not much, but better than nothing. We also found out that she was hypoglycemic, this took all her energy away. She began eating 5 grapes two hours before lunch and two hours after lunch. This made a big difference for her.

I agree with all the previous posts. Definitely get her vitamin levels checked. Don't load up on vitamins though without talking to a doctor first. Some vitamins, especially Vit D, can be overdosed on.

Also, talk to your daughter, encourage her every chance you get to describe to you what is happening to her body when she eats or drinks that causes it to be such a bad experience. It took my daughter a long time to figure out how to communicate these new sensations in her body to me. Each time we talked, she was able to provide a little more insight into what was wrong. Knowing what was wrong, we were able to adapt to other processes or methods to help her out.

Also, remember that children are very resilient. When her body is ready, she will get involved again.

[anna]

Another thing that might be of help is leg massages, leg exercises, when my daughter was bed bound we found that the leg massages helped give my daughter some much needed energy. We found that slowly slowly working on body balance, seemed to help with her mental state.

[yogini]

I think the best route to getting her back on her feet is to find some treatments that work. Try salt, fluids compression and different meds. I'm an adult. I've had POTS for 6 1/2 yrs. The first year was the hardest and I spent all the time I could in bed. As soon as I started to feel better I ventured out more, started walking, etc, etc. Also, two weeks actually isn't that long a time even though it feels that way. She may be just going thru a rough patch, which can last a couple of weeks. I hope she feels better soon.

[MomtoGiuliana]

Perhaps if she is up to it, communicating with others her age with the same condition will help. It's scary and lonely to feel very sick and weak, not to mention the added strain of going through adolescence simultaneously. Is'nt there a forum for kids called Dynakids still?

As badly as she feels, she does need to take her meds. Some take awhile to work, some need to be taken regularly to work, some should not be skipped. If she is refusing to do that I would also be worried. It might also help her to see a psychologist or counselor who can help her with the emotional element of being chronically ill.

She should not lose hope, as hard as it is right now. At her age she is very likely to greatly improve.

[bkweavers]

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

[britishangel6]

I just wanted to add, in case you hadn't heard: I was recently at Vanderbilt seeing specialists. During a conversation he stated that the POTS patients that tend to recover the best and quickest are POTS patients who begin with symptoms as teenagers. While it doesn't help the pain is causes I hope it can give you some hope for her future.

[usports2]

Good evening everyone!

I share the same sadness & frustrations as all of you...my 18 year old was diagnosed just 3 weeks ago after nearly 24 months of being sick & misdiagnosed.

Through this time, he has been so scared, and angry, and frustrated, and just about every other emotion you can come up with!

When he was feeling most isolated because he wasn't able to go to school, I invited his very close friends in for a visit. Amazing what a little laughter can do!

We also sought out the help of a therapist....he really needed to share his emotions ~ particularly the anger ~ with someone other than his dad & I.

We are also going to start some biofeedback therapy at the beginning of June. Our son was on some very strong meds during the misdiagnosis time with the goal of disconnecting his gut from his brain ~ yikes! We are lucky enough to have access to a psychologist at University Hospitals in Cleveland that is a holistic practitioner that has a special interest in teens with POTS. He will be working with our son on some strategies to pull the brain & body back together.

[Syd]

Any possibility of /interest in getting her a pet? When I got sick at her age, my mum let me get a pet of my own, and that was honestly what got me through my teenage years(especially considering I didn't have a diagnosis or any treatment). You can't tell a pet you're not feeling well enough to take care of it, so you have to get out of bed, but when you do you've got someone who's really happy to see you regardless of anything else. As a mum, you would obviously have to be prepared to take care of the pet if/when your daughter isn't able to, but if you 'officially' let her have full responsibility she'd be 'forced' to try to stay healthy to take care of it and also get a closer connection than with a pet shared with the whole family. Of course, many people can't have pets. But if you can, - and she wants to, I would recommend it as it was a huge help for me at that age. Getting a Border Collie would probably be a terrible idea, but there are many types of pets that are relatively low maintenance and still have lovely personalities. Feel free to PM me if anyone wants any advice...

I also used to watch TV shows with my friends and family. I worked better than movies because it's something ongoing, you can follow a show every week, or have DVD marathons:) It also gives you something to discuss, even if one of you are stuck in bed most of the day. Best of all, it doesn't take much energy because you can watch from the bed/couch and you get to live vicariously through the screen for a little bit. If you can find something with a strong (female) character for her to identify with, it could be a big help. Maybe audiobooks could be good too, if she's prefers lying in bed on her own.

Of course, this is not really medical advice, just something that might inspire her to keep up the fight. Maybe you already thought of these things, but that's all I have for now. I wish you both(and everyone else in this situation) the best of luck!

[icesktr189]

I second what Syd said.

I am a HUGE tv junkie now and have multiple shows that I tune into every week. It gives me something to look forward to. If she cant keep up, there are tons of websites that allow you to watch them on your own time :] Honestly its the one thing that has kept me sane besides my daughter.

I know how hard it is (I came down with POTS at 18 too and am now 21). The first year is the hardest, because you have to learn to cope, but it does get easier.

Also, I keep a chore list. They are very small things, but it helps me get out of bed. Mornings I make sure I get up to feed baby then I will do the dishes and then take my nap while she is in daycare. It helps to have something and it also gives you a purpose everyday.

[Yolaclover]

There are some great teen potsy videos on youtube. Just search it!