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kclynn

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Everything posted by kclynn

  1. Hope it goes great! Has she been able to tolerate full time school? My son was spiraling down and we cut back to part-time and increased his florinef and he is back to stable, still potsie but also making his classes most of the time and having some social interaction as well.
  2. These are really full of sugar but better than the artificial sweeteners so many of these things have. For my son, these would be especially convienient to use during classes at school when he gets the brain fog. It seems they do not have a lot of sodium except 1 which is the Margarita flavor and schools are so sensitive they just might take it away! It is the only one that has 210 mg salt, though, all there rest only have 70mg which is hardly anything.
  3. Julie, I am glad you found your way here, and sorry for the circumstances that have made it nessasary. You will find lots of support here, feel free to ask lots of questions. There are several of us parents on here with teens. How did they diagnose her with dysautonomia? The most important thing will be to find a Dr. who is familiar with dysautomomia (not easy) or at least a Dr. who is willing to learn. You may want to take her to one of the more known dysautonomia centers to get a treatment strategy. I sent you a PM. Feel free to contact me.
  4. For Mayo you can do either but I am pretty sure you will get in sooner if you have a referral. If it is months and months and you have time you can go and they will work you in but a lot of people do not know this or just do not do this. It could take some time for them to actually work you in and you have to stay right in the waiting area.
  5. That is interesting. My son's blood work would ALWAYS show a high Red Blood Cell count. When I questioned it all anyone ever said was they only worry if it is low. Might this be the explaination? Because he has low blood volume? He has terrible blood pooling issues no matter how much he drinks.
  6. I sent you a PM but I also wanted to add that it is my impression from what I have read on here that communications with the Drs. and their offices can be difficult, even for the best Drs. and maybe more so for them. I think their are just not enough Drs. in this specialty and the good ones are just very busy. Hang in their and be persistant. I hope your daughters downturn is a temporary one. My son has been really up and down a lot since school started. I had to send teachers a note that he was not able to finish his homework tonight and will complete it over the weekend (I hope).
  7. I 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.
  8. 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...
  9. 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.
  10. Brenda, I am aware of the October slide (that often starts in Aug) and that is exactly what is happening to him. He did so fantastic this summer that there was no question he would try to do full time. It just hasn't worked and today we decided to back off the the morning classes and he will go from 4th to 7th. Saddest thing is that his favorite class was 1st hour and his favorite teacher 3rd. It will also mean changing up his other classes but having the same teachers in all but 1 where he will have a new teacher also. This is all so stressful on him and yes, the schedule should have been done with this anticipation in the first place. Now, if he improves, does better he could add in and elective the second semester, possibly, but one day at a time for now. The most important goal is to keep in in the school setting. Life lesson, sometimes all choices suck. His counselor told him: sometimes we have to do things we don't want to do so we can do the things we do want to do. He has repeated that to his dad and me so I think he is handling it ok so far. I have given the school lots of info, brochures, lists and lists, DYNAkids info, Dyna kids video. They do seem very interested in helping him at the school level and lessons learned will help kids following him. Major changes are a different story and will need to be addressed at a higher level. His worst symptom in the morning are the adrenaline jerks and you are right, that you just can't push through those no matter how many electrolytes or fluids you try to suck down, and nausea is also present. We just don't want to push him into a crash worse than he is now. I really appreciate all the advise. It all really helps and even if it doesn't get him up at 6 AM, all these things suggested could have a place in his day to day coping.
  11. My husband and I adopted from China 11 yrs ago and I know they really changed their requirements for health of parents since then making it very difficult. The wait right now is about 5 yrs but much, much shorter for special needs (which might simply be a slightly older child). Anyway, what I was going to add is that regardless, you should be very honest about your current condition, prognosis (currently thought that pots isn't progressive), a statement from your Dr. regarding his opinion of your ability to care for a child, your plan A, plan B, and plan C regarding how the child would be taken care of should you be unable to (family members, church family, etc...) I will say that a slightly older child is less physically taxing. My friend adopted a 4 yr old from Russia and she has been a wonderful addition to their family, was able to take care of herself in many ways, care for her clothing, and so on. Our children are terribly spoiled. I hope this helps.
  12. Coffee really isn't his thing, nor is soda. He only drinks water but will drink crystal light pure and I also can add a bit of G2 elecrolyte packet to that. It may make him nauseous though. And he can barely eat anything with out getting nauseous first thing in the morning. He has been compromising and sipping a chocolate protien shake and that has some sodium also.
  13. They are not using a textbook that I know of. She uses immersion techniques so there are no vocab lists to study. Eventually yes, I think, but to start it is like a baby learning to talk from imitation. Great for most kids, just not mine right now. We will have to see how things go. He hates missing his first class, marketing. I think they may be able to move that to later in the day but he hates the idea of that (it would mean a new teacher and a new class). I tried to tell them he would not do well in the mornings and they ignored me. Now they are getting it. He already has two learning labs in the afternoon now, so if we ditch those and rework his schedule so he starts late 9 or 10 maybe that would work. Actually he hates the idea of changing everything now. I know it just may be the only way, but it is still all very stressful. He made it to 7th hour today. He is determined to make it early tomorrow. I hope he can. He heaps so much guilt on himself when he finds that his body just won't allow it. This morning he was having adrenaline jerks when I woke him up (probalby much of the night as he said he woke often). His arm was banging the wall. But maybe if he is forced to get up (which is what he says he wants) then he might be able to get to school mid morning.... Sigh, everyday is different. It is early in the year. I hope it is possible for him to recover a bit from this crash. Thanks for all the kind thoughts.
  14. Yes, Christy, very discouraging. I know some have said just go directly to homebound but he couldn't live with that, he had to try. He was up walking around with so few symptoms, now crash! No school this morning, I went to get him and he was having major adrenaline jerks and could barely roll over. Weak. I think he had been having them all night. I think we will have to consider homebound again. Yes, I think he can do the core classes homebound. His Spanish was 2nd last period of the day but he was stressing it and we dropped it already. Marketing he loves, and the teacher says we can not homebound that class, either. Culinary Arts I don't know. Will have to get with the teach and see if she is willing to work the curiculm around his not being there a lot but it is in the afternoon. We DO have a kitchen at home It is her 2nd year teaching and she is very sweet so maybe we can work this out with her.
  15. School so far has been mixed. Out of 15 days J has had 4 missed and 3 half days. He has decided to drop Spanish because if you aren't there, you can not learn it, you can't get notes for missed information and the teacher was very uncooperative with any kind of ideas for helping him to succeed. Our district requires 2 years of a language for graduation. I hope he is better next year. Time will tell. He is a Sophmore this year. Our state does not require languages to graduate. But my question was about mornings! He is just wrecked, feels REALLY bad at 6:00 AM. But tomorrow he wants me to make him get up. Wish me luck with that! I guess I am wondering if once he gets moving, he can push through it and then be ok. Tips or Advise greatly appreciated. I also have a call into his Dr. since he has taken such a down turn since school started. Don't know that they can help but thought I would run it by them.
  16. I would think they could do them with you sitting.
  17. What everyone has said is true, John. If you are noticing improvement then very possibly it is getting better for you. It doesn't sound as if you are severe right now. There is a lot you can do without medical help. Eat well, exercise! Stay as active as possible and stay off the boards if what you read worries you. As it has been said, many, many people and most who are in their teens do improve to where they are off living happy productive lives. Many with adult onset do not do so well and are here getting support from each other. Their health conditions do not have so much to do with you. Set goals, count on getting better each month as time goes on. Have faith. Do you have a support system? Things will get better!
  18. I hope someone replies as I am interested in this as well. Mostly I found that it hasn't been studied very much so there isn't alot of data out there on safety.
  19. He had a wonderful smile on his face when he came home. Things went very well for him. Algebra teacher lightened his assignment a little which is very good since this first part will be all review. He is the only sophmore in his class. He kept answering all the questions and after about 15 (what he said) she had to ask him to stop and give others a chance Everything else went ok. Tomorrow's another day. Day to day.... Thanks for the good thoughts.
  20. Jenny, those are really good points. I have posted about my own son (15) who after being really severe has finally gotten the right DR. and meds and stabilized enough to go to camp for 9 DAYS! He has also been to the BMX track and done a lot of other things. I am learning as his mom to let him make many activity decisions and read his own body and the more he moves and is active the better he is, physically and emotionally. He has been able to have more social interaction and be active with his friends, and he still crashes in between. School is starting and he has expressed that staying IN school is most important so I imagine late outings with friends are not going to be an issue You are right about needing to live as much as possible in spite of POTS. K and her family are the only ones who truly know if this is a good thing. When we flew my son did fine. We ordered wheelchairs but he didn't use them, though the 2nd trip he wished he did. We didn't have layovers that time. a third trip we did change planes. He was ok but one leg of the trip had horrible turbulance and that made him so sick! I wouldn't say it affected him greatly afterward more than anything else, though.
  21. since my son was homebound since October last year. We are excited and very nervous. He is going into 10th grade. So much to handle and I am worried about the fallout if he doesn't. He still has many symptoms, especially when he is stressed or physically going a long time. Guess I am just asking for prayers for him to have the strength to get through at least for a little while (he has the courage)
  22. Kaybersmom, I think Dizzy has some valid concerns. If it were a direct flight, that would improve the situation but it isn't. What if they cancel, overbook or delay the next flight. Flight cancellations have happened to me twice in the last 2 years, outrageous wait time for the next possible flight. And, what if she has a bad episode and the airline will not let her continue on and she is stuck in Houston. That is a biggie and I know of someone that happened to. I think ulimately they convinced the airline to let their daughter continue but it was tense. What if they didn't. Is she doing school? This would most likely set her back some (whether a day or a week or two no one, not even K knows). You are not being nervous nilly, you are actually being realistic. Even though she would love it, it isn't about what she wants right now, it is what she needs to stay stable. It sounds like she doesn't even know this is a possibility as you mentioned it would be a surprise to her also. I just don't think it would be very good for her and the price too high. I know how much you want to help her emotionally as I know this is really hard. But I think the price is too high. What do her Drs. say because ultimately it is between you, K, and them.
  23. I would put it in writing tomorrow. I would also state the reasons for requesting the 504. Keep it professional and keep records, you are already getting resistance but maybe once you get past the initiation things will go smoother. Once you request a 504 meeting they are required to respond in a certain amount of time. Keep track. For the meeting, be prepared, have medical diagnosis and Dr. recommendations (this will carry a lot of weight if you have this already) They may have their own form then want the Dr. to fill out so ask for that. They are busy and since I am really a perpetually nice person I try to keep that in mind but your son is just as important (more) as other papers with deadlines. Good luck!
  24. TTT have been referred to as a "dirty test" because the results can vary. My son's went up 27 the first one (though over the 120 threshold) and up 50 the second one 3 months later. He did have symptoms for both, though, but they were mostly discomfort from pooling and some nausea. He never passes out. I think with Hyper Pots, it means your BP goes up. Your nervous system is over sensitive because of autonomic dysfunction. With just POTS your BP wouldn't change much. Some people have longer TTT and my son's first one was 10 minutes and the second 45 and we learned more. Maybe your GP would feel better about calling it Autonomic Dysfunction (which is what the MAYO Dr. called my son's) which should probably be enough and if he would say with Probably Pots it would be that much better. I think this is really frustrating. Some Dr. don't even require a ttt, some are too rigid. It certainly sounds like POTS and also, you said "I didn't feel much worse" Do you mean you had symptoms but they were not too bad? If you had symptoms, you had symptoms. If you felt normal with no symptoms whatsoever, you didn't have symptoms. I don't know much about the hyper mobility, so someone else can probably give you good info on that.
  25. You should take it as prescribed. My son takes 4 or 5 doses (the 5th dose IS on an as needed basis and he rarely takes it). Sometimes he only takes 3 doses because he forgets and that is not good. One day or so is ok but he forgets because the medicine is making him feel better, but really, I believe he does better long term when he gets the 4 doses day in day after day. If only 3 doses he starts to get more symptoms. It is something you have to figure out. There is no harm in not taking a dose other than I do think you might compromise the over-all benefits to you.
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