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Help In The Dark About Pots


cdringl
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Please some one I am just the evil step mom of a 13 year old girl. That has been diagnosed with POTS. We are in the dark as in my husband and I are in the dark about it all. The mother takes her to the appointments of course the father isn't invited. But I have been trying to read up on it. And can't find what you can and and can't do with a child with POTS.

Recently we went to church and heard a story of our pasture and his boys playing with air soft guns. (using protective gear as well) Anyhow long story short. My step daughter of course wanted to play as well. I noticed she would sit alot I would ask her if she was okay and she would say ya and get up and go play. Well we let her take the gun home because her cousins have them. Well her Mom called and was upset with my husband and told her she was going to trash that air soft gun. And if Ashley gets any more welts from them she is going to make sure all the guns are thrown away (like how she gonna do that? control freak) Anyhow she told my husband that its not good for daughter has that POTS and can cause problems. Anyhow so I can see how this goes. Everytime we do anything she is going to start on the POTS thing. Just like the Asthma and how I use to burn candles and incents I use to get in trouble but, come to find out my step daughter has candles in her room...

So I don't know where to start? We can't make Dr. Appointments because this woman changes her mind as much as I change my underwear. When she can come over...etc. Yes we are getting the visitation stuff set up but it takes time...etc.

I just want to know if there is a link to do's and dont's for a child with POTS?

Please help lost in the dark Step Mommy

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I'm not a child with POTS, but I'd imagine her limitations are similar to an adult with POTS. First and foremost, POTS symptoms vary in severity; some find their symptoms to only be an inconvenience, while others are bedridden because of their symptoms. How is your stepdaughter?

How you treat her depends entirely on how badly she's affected by POTS, but some general rules are to keep her away from prolonged exposure to heat (ie, playing outside in the summer), and to keep her drinking lots of fluids all of the time. Most people with POTS need to drink 2-3 times more fluids per day than a "normal" person, the same goes for salt intake, she should be increasing her salt proportionally to her fluid intake. Many of us have hit two birds with one stone by drinking sports drinks like Gatorade, which has a decent amount of salt in it to begin with.

Hope this helps,

Lauren

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For the well being of this daughter, both parents need to be involved. I know this can be very difficult, but communication is essential. It would be helpful to speak with the daughter about her understandings regarding her illness as well. If you are not able to meet with physician together, which would be ideal -all hearing info at same time, could you phone conference with physician? It sounds like both have parental rights. I would hope that if mom wants best for daughter, she would want dad to hear the information directly.

Daughter's illness should not be put in middle of other issues. Educate as much as you can.

Good luck!!

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Hi, welcome, dynakids, dysautonomia youth network of america, inc. has a wonderful forum for parents of dysautonomiacs. I encourage you to join and add that to your resources like dinet. Here's the link: http://www.dynakids.org/index.jsp Your step-daughter can also join a separate private forum on dynakids to meet peers who go through the same struggles/achievements as herself. Good luck.

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We don't know how she is. I haven't really noticed much other than sometime she gets an attitude but, I think that goes along with her personallity and being a teenager now. And what do you mean how I treat her. As in less stress spoil her more than I already do ? lol.. jk.... I am always in trouble for spoiling her. She sure can walk the mall when she wants. Is there a difference in always walking -vs- just standing? Thanks for listening

I'm not a child with POTS, but I'd imagine her limitations are similar to an adult with POTS. First and foremost, POTS symptoms vary in severity; some find their symptoms to only be an inconvenience, while others are bedridden because of their symptoms. How is your stepdaughter?

How you treat her depends entirely on how badly she's affected by POTS, but some general rules are to keep her away from prolonged exposure to heat (ie, playing outside in the summer), and to keep her drinking lots of fluids all of the time. Most people with POTS need to drink 2-3 times more fluids per day than a "normal" person, the same goes for salt intake, she should be increasing her salt proportionally to her fluid intake. Many of us have hit two birds with one stone by drinking sports drinks like Gatorade, which has a decent amount of salt in it to begin with.

Hope this helps,

Lauren

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I would say the parents need to put aside their attitude and ALLOW the dad to go to doctor visits or he will forever be in the dark. This junk is hard enough for us WHO KNOW ABOUT IT, let alone try to pass info second and third hand.

Re: walking the mall. I can Walk, often quickly from Point A to Point B. Sometimes I can stand still for a few minutes. Usually I must SIT or LIE DOWN at point B.

It's the NOT MOVING and standing STILL that can cause blood flow to stay in lower half of the body.

WALKING helps push the blood back UP to the heart and the brain.

I hope you get the cooperation from all involved. If the mother of the daughter is very difficult or bitter towards you, perhaps you can insist the father get involved or ask the mother of this child to call a "truce" so that you, the step mother, can HELP AND ASSIST in doing what's best for the child. Make sure she knows you have the childs best interest at heart.

I know some folks can not let go after a divorce but if you can take the higher road and remain polite and concerned, no matter how snippy the mother may get, maybe she can see you as the caring individual you must be to have found this forum! :o

I have no idea what your situation is but kids are often used as guilt trip and weapons between dad and mom's. This adds stress to which a POTS kid doesn't need.

I hope the dynakids group is helpful to you.

Welcome to the forum and good luck and keep us posted.

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On the main DINET site, http://www.dinet.org/ you will probably want to read the sections marked in the left margin, including the overview, symptoms, what helps and what to avoid. In addition, you can download a free book, chapter by chapter, from another organization called NDRF. The link to the download page is here. There is a section for caregivers, and a section on children with dysautonomia. http://www.ndrf.org/NDRFHandbook.htm

Nina

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Sad but, true there will never be any type of reconciliation for truce. This woman and Grandma (short story) was mad I yelled at my stepdaughter...etc. And I was set up. I went to step daughters house and the request of Mother that I use to do everything with... lol. Anyhow they locked me up and beat me called the cops on me. I spent the last two years in court rooms. 13 thousand dollars of my father's estate he left in lawyer fee's loss of a relationship with my step-daughter (me and Dad) Finally now after 2 years we are finally seeing her again... Because the daughter put her foot down finally. Thats what I believe anyhow she wants to live with us ... etc. But we live in Utah the state where no child lives with the father ha ha jk Anyhow not to go on but, as you can see we are in a perdicerment.

....

I would say the parents need to put aside their attitude and ALLOW the dad to go to doctor visits or he will forever be in the dark. This junk is hard enough for us WHO KNOW ABOUT IT, let alone try to pass info second and third hand.

Re: walking the mall. I can Walk, often quickly from Point A to Point B. Sometimes I can stand still for a few minutes. Usually I must SIT or LIE DOWN at point B.

It's the NOT MOVING and standing STILL that can cause blood flow to stay in lower half of the body.

WALKING helps push the blood back UP to the heart and the brain.

I hope you get the cooperation from all involved. If the mother of the daughter is very difficult or bitter towards you, perhaps you can insist the father get involved or ask the mother of this child to call a "truce" so that you, the step mother, can HELP AND ASSIST in doing what's best for the child. Make sure she knows you have the childs best interest at heart.

I know some folks can not let go after a divorce but if you can take the higher road and remain polite and concerned, no matter how snippy the mother may get, maybe she can see you as the caring individual you must be to have found this forum! B)

I have no idea what your situation is but kids are often used as guilt trip and weapons between dad and mom's. This adds stress to which a POTS kid doesn't need.

I hope the dynakids group is helpful to you.

Welcome to the forum and good luck and keep us posted.

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Coming from a divorced family myself and being diagnosed with POTS syndrome while I was a teenager, I feel like I know what you are going through. I can not add a lot to what your step daughter can and cannot do, because everyone varies so greatly with this syndrome and the vast array of symptoms that make it up. What I can say is with the moodiness that you mentioned in one of the above replies is that a greater majority of it is being a teenager, possibly seeing you as the "step mother", but also I know I would and still get moody when I'm feeling uncomfortable with my POTS. That is, when I get in environments that are hot or humid, I get feelings of hot flashes that automatically puts me in an annoyed mood. With the father not being asked to go to the appointments, maybe getting the father to ask his daughter if she would like him to come would be the best idea. I never wanted my father to come, but if they are close then she may want him to be with her too. Good luck.

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Thank You, I finally talk to my step-daughter and told her to talk to me when ever she needs me. Especially with her pots. She calls it pots too. Anyhow she tells me things too. Any how I ordered her some pots bracelets and pamphlets for her family and us. Anyhow I think I got the ball rolling

Coming from a divorced family myself and being diagnosed with POTS syndrome while I was a teenager, I feel like I know what you are going through. I can not add a lot to what your step daughter can and cannot do, because everyone varies so greatly with this syndrome and the vast array of symptoms that make it up. What I can say is with the moodiness that you mentioned in one of the above replies is that a greater majority of it is being a teenager, possibly seeing you as the "step mother", but also I know I would and still get moody when I'm feeling uncomfortable with my POTS. That is, when I get in environments that are hot or humid, I get feelings of hot flashes that automatically puts me in an annoyed mood. With the father not being asked to go to the appointments, maybe getting the father to ask his daughter if she would like him to come would be the best idea. I never wanted my father to come, but if they are close then she may want him to be with her too. Good luck.
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I'm a DYNA member and I'd like to say thank you to everybody that sent her in the direction of DYNA.

Only thing is, parents can't just join the parents forum. Their child has to be an active member of DYNA for the parents to be able to join the parents forum.

Definately read some of the stories, but remember a lot of them are about finally getting diagnosed.

THANK YOU SO MUCH for caring about your step-daughter and wanting to find out more about it for her. She may not say it now, but it really means a lot to have a parent who understands or is at least willing to try and a parent who is willing to treat them as a kid with an illness instead of an illness that just happens to be part of a kid.

UnicornIsis

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Guest sonotech

I am glad that you have finally opened the "lines of communication" with your step daughter, now you just have to try and KEEP them open!

I know I HAD POTS as a teen (still have it but was not diagnosed til was in my 30's), and I can remember being tired all the time, having a hard time getting up for school, dropping out of college courses because of my fatigue, and my parents always YELLED at me for being LAZY.

So...my advice is to listen to her WHOLE-HEARTEDLY and understan she will hav limitations that NO-ONE ELSE can understand. If the school needs to be informed, then do so that way they can help as much as possible. Also, she should be allowed to live a "normal" life to whatever extent SHE feels capable of since SHE knows her limitations.

Right now she just needs family and friends to BELIEVE IN HER and be sympathetic and just be a "listening ear" sometimes.

Mental and emotional support along with good medical care is the KEY!!

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