kclynn Posted September 22, 2011 Report Share Posted September 22, 2011 My son is very up and down. The school cut him back to 4 hours in the last part of the day and I think that is making kids more aware that he has something but they don't know what. He has a hard time explaining it himself, so he usually says "its complicated" or "it would take a long time to explain". My son is not a talker about himself so this is just plain uncomfortable for him. But he would like to come up with something. The half day schedule is working quite well. He feels a lot better, even went biking all afternoon and had a blast. The Dr. also just a couple days ago upped his Florinef so that might help too, though I don't think he will ever make the 1st or 2nd hour of school. With my son he may feel really bad for several days in a row, and then have a run of pretty good days and of course this is all unpredictable. And almost always, he would never have any problem with being super active as long as he felt good before. If he would go all day, then near the end of the day he would crash, but mostly for at least a couple hours he is great.I have printed out the Spoon Theory to give him which is excellent but is really too long for the more casual friends from school. I read someone compared it to a bank account with deposits of sleep, nutrition, medicine, exercise, but you can't always withdraw as much as you put in and sometimes none of it is available.Any other really great more simple explainations he could use? He is getting a really hard time for only coming to school half days. Most kids think he is lucky and he hates not being able to be there. Quote Link to comment Share on other sites More sharing options...
CharmedLinz Posted September 22, 2011 Report Share Posted September 22, 2011 Not sure how much help this will be for a kid, but what I tell people that would have no idea what any medical terms mean is this......They ask "what is dysautonomia"I say well it causes a lot of symptoms but basically I feel like I have a really bad case of the flu pretty much all the time, and I never have any clue as to whether I will feel good or not at any given time.For people that understand a bit more I just say that my Homeostatis is Whack, including BP, Heart Rate, Temperature.Ooooh and i just thought of an even easier one for a kid.... just tell them that everytime you stand up you get a wicked head rush that just won't stop. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted September 22, 2011 Report Share Posted September 22, 2011 My "quickie" explanation has become: POTS/dysautonomia is a syndrome that affects the autonomic system (part of your central nervous system). Kind of like an automatic transmission on a car, the autonomic system is supposed to regulate all the stuff that should be on 'automatic' like heart rate, blood pressure, digestion, etc. So when most people stand up, a whole bunch of things automatically happen in there body to compensate for gravity, that DON'T happen in my body. My transmission stalls, and the results can either slow me up for just a couple minutes, or can short out my whole circuit board and fry my computer and require major repairs to get me up and running again.My "car" analogy has worked fairly well for people of all ages. If only it were as simply as replacing my transmission to fix me!Sandy Quote Link to comment Share on other sites More sharing options...
kclynn Posted September 22, 2011 Author Report Share Posted September 22, 2011 Thanks for the ideas. One of his biggest challenges is explaining how he can feel so good sometimes. I suspect it is a combination of meds, adrenaline, and having all his planets in a row Seriously, I think it might be adrenaline? He has huge problems with adrenaline rushes and adrenaline jerks so maybe that is the explaination, for a little while his body uses it properly sometimes? Even then I think either he only has so much and eventually he runs out or he has too much and when he stops moving that is when he has problems (not usually right away, could be minutes to hours). And everyone seems so unique in all of this.Sigh... Quote Link to comment Share on other sites More sharing options...
Christy_D Posted September 22, 2011 Report Share Posted September 22, 2011 I printed out the informational Post card on dynakids. It is small and I hand it to anyone who asks questions. It is packed with the necessary information needed to understand what is wrong.Christy Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 22, 2011 Report Share Posted September 22, 2011 I printed out the informational Post card on dynakids. It is small and I hand it to anyone who asks questions. It is packed with the necessary information needed to understand what is wrong.ChristyI searched the Dynakids site & can't find that card, Christie. Can you please share a link? This is something that my son, Mack, has always struggled with as well. He is in college now & has told close friends there. He says he just shows them his pill case & they get it Julie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted September 22, 2011 Report Share Posted September 22, 2011 http://www.dynakids.org/Documents/bracelet_postcard.pdfAbove is the link to the postcard explaining dysautonomia.Christy Quote Link to comment Share on other sites More sharing options...
kclynn Posted September 22, 2011 Author Report Share Posted September 22, 2011 I printed out the informational Post card on dynakids. It is small and I hand it to anyone who asks questions. It is packed with the necessary information needed to understand what is wrong.ChristyI missed those! I looked at the "your friend has Dysautonomia" booklet but it is too long. I printed some of those cards out and gave them to him and he looked at me with such a funny look "too hand out??" But then he laughed and could see in some situations it would be really good when people are more persistent. For one girl he gave her the dyna kids website and the next day she came to school and said "Wow! It really is real!"BTW, the cards could be very good for the adults, also. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted September 22, 2011 Report Share Posted September 22, 2011 Lynn,Cody won't hand them to anyone, (I guess he would have to leave the house first, haha), but I hand them to people who have a true interest in what is going on with him. Yesterday, I gave one to someone I used to work with. He was telling me how sick his daughter has been(for years) and is now homebound. Her symptoms were dead on for POTS. He was so glad he ran into me and that I gave him the postcard. They are rather handy.Christy Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 22, 2011 Report Share Posted September 22, 2011 http://www.dynakids.org/Documents/bracelet_postcard.pdfAbove is the link to the postcard explaining dysautonomia.ChristyThank you, Christy. I love that!!! It is small & succinct- perfect to hand to a professor or even a friend who wants to know more. I had seen that years ago & couldn't find it on the site. I hope it helps many here. Julie Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 22, 2011 Report Share Posted September 22, 2011 Lynn & Christie-I just saw your comments above mine. I think we all posted at the same time I totally get what your son is saying, Lynn. Mack rarely, if ever, verbalized what was happening to him to friends in high school. He figured it was "just too hard." As a result, he bore his share of prejudice and many insensitive comments. He (and we as parents) struggle with what to say when. I think it is especially hard for guys. My son is very typical in that he'd rather grunt than put together a sentence. And, dysautonomia is difficult to describe & very complex.Starting college, we were in his shoes as he met new people...and the issue sort of came up. We weren't sure how to advise him. During his orientation session, it was VERY hot (95-100+ degrees.) Obviously, Mack carried water with him constantly. Within his group, he was labelled "Thirsty Mack." He still receives E-Mail and even snail mail with that monicker. Grrrrrrr. If it was diabetes, would it be "Insulin Mack?" As we helped him move into his dorm, we saw other students/parents raise their eyebrows at his single dorm room. It is very expensive- literally double what other students pay. But with his illness, we decided he had a better chance of success if he had a designated and consistent place to crash and study. There were many occasions where I should have said something to other parents as an explanation, but I didn't. I hated to LEAD with the sick card. My son is so much more than that. We left it to him to tell friends- which he has in his own way and in his own time. He enjoys cycling, but sometimes crashes and has to lie on the side of the road until he can go on. We INSISTED that he tell his new cycling buddy about his illness, We were so proud when he said that he already had . This is a tough issue. I always think the shortest, simplest explanation is best- I have a dysregulation of my autonomic nervous system, My HR and BP often don't do what they are supposed to do. I feel really tired, weak, lightheaded & nauseous at times. If someone showed interest beyond that (sadly RARE ), Christy's card would come in handy. Great thread. Definitely touches on daily real life scenarios for us all. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted September 22, 2011 Report Share Posted September 22, 2011 Julie,That is so great that Mack is able to go away to college. It is something we can hope will happen for Cody. He just seems to get sicker each year. We are heading to the Mayo Clinic the first week of October and hopefully they will find a treatment plan that helps him.Christy Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 23, 2011 Report Share Posted September 23, 2011 Yay! I have fingers & toes crossed that Mayo will be able to offer Cody help. The appt's right around the corner . Please keep us posted on what you learn. I am already sending prayers for safe travels, answers, and an improved treatment plan!!!Hugs-Julie Quote Link to comment Share on other sites More sharing options...
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