PetuniasMom Posted May 9, 2012 Report Share Posted May 9, 2012 Just wondering how all of you deal with the 'crashes' - the times where your aren't able to manage your symptoms enough to function as you were. My daughter has been home from school for 2 weeks now, feels like her Florinef has stopped working, and is dealing with all of her symptoms all over again almost like it was before diagnosis and medication. And, her period comes next week, and when she realized that, she cried, knowing everything will get even worse. Not sure what brought it on other than stress and warmer weather, but we have managed the warmer weather with air conditioning at home.The first week she was home, when she did have one good day, she hesitated to go to school, because what happens is that she says home for 3 days, sees an improvement in how she feels, and then hates to give up that improvement by going back and putting in a full day of school. And then, she stresses about missing so much school, catching up, how is she ever going to do this next year, what about university etc etc. I am trying to teach her to deal with one day at a time, but it is hard for a 15 year old who has her whole life ahead of her, to watch her peers and friends.... well, you know.I guess this turned out to be more of a vent than I meant it to. I think I was just looking for suggestions. She is eating as much salt as possible, and drinking lots of water and Gatorade. I think I should have her potassium checked, but I am worried that taking even one vial of blood from her will make her even worse. She is sitting instead of laying down as much as she can. I don't have compression stockings for her at the moment, but I did have some and she refused to wear them, I don't mind getting them again but taking her to be fitted today or soon isn't an option really.Am I missing anything.... is there anything more I can do for her right now? Physically or mentally/emotionally, I feel like I'm not doing enough and I just am at a loss. Its so, so hard not to be able to help your child. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 9, 2012 Report Share Posted May 9, 2012 I'll say a prayer for Petunia...It's hard enough being a normal 15 years old...it sounds as if you are doing what you can. Call the doctor, and maybe she will have other ideas for medication, too. They are a help, but not a cure. This happens to us all... Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted May 9, 2012 Report Share Posted May 9, 2012 PetuniasMom:I know exactly how you feel. My 23 year old daughter was diagnosed with POTS in November of 2011 (right during her senior year of college). It is sooo hard for a young person to see any light at the end of the tunnel. Just keep on trying to give her your love and support. That's really all we can do.Pam(mom to Jennifer) Quote Link to comment Share on other sites More sharing options...
songcanary Posted May 9, 2012 Report Share Posted May 9, 2012 It sounds like in her mind she is building up stress and it is compounding. I use deep breathing techniques when this happens and they help me. I take full deep breaths and exhale very fully also, until my abdomen caves in. I don't claim to know what it feels like to be a parent so please forgive me. But I react very much like her and it took me 50 years to learn how to better cope. Bless her heart if she can get control over stress. It is a very hard thing to do for some of us and believe me, I'm still learning. Quote Link to comment Share on other sites More sharing options...
PetuniasMom Posted May 9, 2012 Author Report Share Posted May 9, 2012 Thank you very much for the kind words. I know when I write, there is always somene who knows exatly what I mean to say, exactly how it feels, and just what to say. Thankful for the board today! Quote Link to comment Share on other sites More sharing options...
bkweavers Posted May 15, 2012 Report Share Posted May 15, 2012 Petunia's Mom - I can so relate to what you're going through. My 16 yr old daughter has also been bad for the past 3 weeks. We're actually on week 4 of being home from school again. Last October, she had a major relapse after almost being back to normal. Ever since then, she's been back and forth between feelling good and bad. She got stomach flu in January, a cold in Feb. and now another cold/allergies. Each time, she was going to school part-time and then back at home. Now, we're trying to figure out what to do for the last few weeks of school. I hesitate to push her as in the past, it's just made her crash even worse. It's very frustrating as it's always a guessing game as to what we should do.I understand the feeling of not thinking you're doing enough and always questioning yourself. I've been there so many times in the last 5 years and even though I have a husband, I'm the sole caregiver and a lot of it falls on me! Things that I have learned is to keep your daughter in touch with her friends as much as possible. We've had lots of sleepovers and get-togethers at our house with my daughter and her friends. I just pushed my daughter to go back to youth group at our church even though she wasn't feeling her best. Just being with other teens her age helps her emotionally.Just wondering if your daughter has a 504 or is in special education. If she isn't, I would strongly suggest looking into that. Then, she doesn't have to worry about her school work and they have to make accommodations for her. It really has taken a lot of stress off of us to have her in the special ed program.Please feel free to message me. It really helps to talk to others who are going through the same thing and maybe our daughters would even connect.Hugs & prayers being sent,Brenda Quote Link to comment Share on other sites More sharing options...
kclynn Posted May 16, 2012 Report Share Posted May 16, 2012 Petunias Mom, We were saying exactly the same back around spring break, that everything was like last year when he was first diagnosed. He couldn't get out of the recliner. He did get back to school after a couple of weeks and has been there everyday. He did try full time but ended up with part-time after a month. As much as he hates it, it is what has allowed him to be able to function. When he was having a horrible time during Nov and Dec and got behind, He was able to catch up. If he had been full time I know he would have failed everything. He is actually doing quite well with his grades. He struggles knowing he may not graduate with his class, but we don't talk about that yet, he still has time to make up classes with summer school and on-line... He is going to try full time again next year, again. I hope she is feeling better and gaining some ground. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 16, 2012 Report Share Posted May 16, 2012 I don't think there are stats on it but I've heard children are the most likely to have full recoveRies from pots and they can sorta grow out of it like some kids do with asthma. I hope that will be the case for her! Just stay positive! Also think kids are having some good results with graded exercise... Quote Link to comment Share on other sites More sharing options...
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