Pots And Teenagers

[thejohnsongang]

Help everyone! I have been having a hard time with my teenage daughter. She just turned 16 over the weekend. She was DX with POTS in 3/07 and we have been trying to find the right medication mixture for her. She is slowly going down hill and her symptoms are getting worse. We are awaiting for her allergy testing at John Hopkins in June and waiting to get in to see the genetics clinic as well. They want to rule out EDS as she has hypermobility. Since getting the dx of pots her symptoms have gotten worse and at 16 she is having trouble walking up stairs/hills to the point of being out of breath and her HR is over 100 at times. We are working with a wonderful doctor at John Hopkins trying to find the right medication mixture for her. She is currently on Claritian for her allergies, yasmin for her PPMD and PCOS, periactin for her allergies, Zantac for her acid reflux, calcium with Vitiman D because of her milk allergy, thermo tabs for the pots and a high salt/water diet for the pots, mididrone for her blood pressure/pots and her doctor just added florinef and potassium to the mix.

Does anyone have any ideas on how to help an active teen girl to deal with these issues of increased HR and the dizziness that comes with the low BP? She is going to Prom this weekend and not looking forward to it. We have made accommodation's for her at school, but for the past 2 weeks most days she can't attend or goes in late due to symptoms. She plays softball and has been unable to practice/play for the past 2 weeks as well. I think it might have to due with the heat, but not sure. I've talked with the doctor and he has added some new meds which I currently use as well so hopefully it will help her.

I'm just at a loss on how to help her cope with this. Being a mom and dealing with it is completely different than an active 16 year old. I have been so busy with my own health and with both of my kids over the past month that I haven't even taken the time to get on the support site. My 11 year old son was dx with hypermobility this month as well and he will be seeing the genetics clinic as well. Busy month and a lot going on. I just thought I would post to see if anyone has any home remedies that might help for boosting her confidence or to help with some of her symptoms until we can get the meds to work right. We have tried lots of rest, tons of water, getting up and moving slowly, taking naps or resting when needed and lots of hugs and love. Dad and I are overwhelmed.... It really stinks when your kids are sick and you are unable to fix it for them or make them better. She is in an angry stage right now and is mad that this disorder has changed her life so much and taken away from her life what she enjoys the most...school functions and softball.

Sorry for ranting and venting...just looking for some input and help.

Nolie

[SunsetParadise49]

Is she a member of www.DYNAkids.org? They are a fantastic site for children, teens and young adults who have Dysautonomia. DYNA has helped me so much. I love DINET as well, but in DYNA we're all basically the same age!

[sally]

Nolie,

Sorry to hear about your daughter feeling so poorly. I know it is terribly difficult to watch your child feel like this and struggle with things along the way because of this illness. This is a hard struggle to deal with I know and my best advice for you (having dealt with two girls with this problem as well as EDS & among other dx's) is to talk with your daughter about pacing herself with outside sports or anything strenuous until she feels up to it and not push herself beyond her limits at this time even if it means that she has to take a long break until she feels better. That in itself can cause anger when dealing with chronic illness feeling like you can't keep up with everyone else. Taking a break from the fast pace of what is considered a normal persons pace is okay and necessary sometimes until strength returns enough to cope better. I think its the hardest thing to deal with any illness especially a young person who just wants to do the things they would like to do without all the hassle or feeling poorly.

I think the advice of viewing Dynakids is a sound one. plus it shows her that she is not alone with this disorder. It sounds like you are doing all the right things for her care and getting her over this hill. Our girls have also had to let go of many things over past years and re-arranged their interests so I can sympathize with you in the frustration that you feel. Just mainly she needs to give herself permission to take a break for now and hopefully after they get things stabilized with medications etc, things might be able to get back on track again when she is feeling better or maybe something else will take place that may be a better interest for her in the long run. For example, my one daughter had to let go of things that she loved doing...years of dance & playing lacrosse & flags due to her health all within a short amount of time. It was terribly difficult for her but she said it just wasn't worth the pain and exhaustion of doing these things that it caused her body in the long run of things. Overtime when she felt up to things, she fell in love with theatre among other things that were not so physically strenuous that became her passion for quite a while and it opened up other doors of interest.

Maybe discuss with her school officals if it is possible to homeschool while she is feeling her worse. The heat will most definetly make her feel poorly. When our girls have to do anything outside or physical they usually start 'salting up' and increasing fluids the day before any scheduled event, it helps some. Also maybe try the compression stockings if you haven't already.

I wish you the best and hope your daughter feels better soon.

[shannon]

Hi Nolie,

I am not a parent, but I definitely know how terrible it is to be so sick during highschool. I was diagnosed with POTS when I was 17 (though the symptoms started when I was 15) and can probably relate to some of your daughter's frustration.

I can only speak from my experience. As a teen, I think it would have helped me SO much if I had a support system of others experiencing similiar problems. I was surrounded by peers who had never dealt with chronic illness and who usually did not understand its persistant effects. I sometimes internalized their negative perceptions of me (as lazy, overreacting, etc). Even though my family was supportive, I really needed people my age to talk to who would understand. Does your daughter come to the DINET forum? Dynakids might be good too. If you or your daughter ever feeling like venting, you can both feel free to send me a personal message. I know how frustrating and draining all of this can be!

Take care,

Shannon

[Star382000]

With all of my heart I suggest looking into joining http://www.dynakids.org They have changed my life!

*waves hi to Gwen*

[MightyMouse]

I wanted to add that a heart rate over 100 isn't really high. A normal aerobic heart rate for me is easily between 130 and 160. Granted, sustained heart rates at that level are draining especially if you're getting them from minimal activity (been there, done that), but typically, that's not considered dangerous unless the heart rate stays that way even after stopping the activity.

Has your daughter tried wearing support hose? I have some that look pretty similar to standard pantyhose, and that might help her with prom and being "on her feet".

Nina