hockeymom

Lulu, what a wonderful post! It warmed my heart to read it as finding the positives has been something we have made a special effort of doing, and my daughter has more than a few times specifically mentioned the good things that have come from her POTS. POTS entered our home in an obvious way over a year ago when our daughter became quite ill. It has changed her life and that of our family in so many ways. More recently our son has been diagnosed as well. As a parent, it is very difficult to see your children suffer and to see what they are missing, etc. However, we learned very early on that focusing on the positives is enormously helpful in getting through these difficult times. While we of course would not have chosen to be a POTS family, so to speak, we have found and experienced many blessings in the process, and we are grateful for each and every one. Do we have days when we mourn for what our kids are missing and the things we have lost as a family due to POTS? Absolutely! Do we have times when we reach low points, wishing for what might have been? You betcha! However, when I find myself at such a point, I remind myself of two things: #1, If my children had a life-threatening disease or serious injury, I would be wishing to be able to exchange such for POTS as those ?options? would be far more devastating, needless to say. That in and of itself helps me put things in perspective and realize once again that we indeed are still quite blessed, even in the midst of the POTS journey, which can be incredibly frustrating and difficult. #2, Though we would not have chosen POTS to come into our life, there are many special blessings that we would have missed without it and I focus on the special blessings that POTS has given us. Thanks again for posting, Lulu. You made my day!

Poohbear and Steph, Thank you so much for your thoughtful and helpful replies. It is such a quandry for us knowing what to do next or whether it's better to be patient and see if time helps to heal the worst of it. It seems that those who start as kids often do have a trend of having some significant recovery in time, and our doctor does feel that she has an excellent chance for a lot of recovery in the longer term. It is just very hard as parents to sit and watch your normally very athletic kid have trouble even standing upright for more than a few minutes - hard to accept that and not be ever searching for anything that might help return some of her quality of life in the shorter term while we wait for the longer term healing. One good point that both of you made that I had not really thought about before is the validity it gives with other doctors to have a well-known clinic standing behind you on diagnosis. There is definitely a lot of value in that for the longer term. We are currently seeing a doctor out of state because of the lack of local expertise, but our hope is to eventually have a doctor here who can help follow her. We have most definitely experienced the same as all dysautonomia patients regarding the lack of knowledge, the doubting, etc. That in itself is such a huge problem! Yes, we're well-acquainted with the difficulty in travel. It's another difficult piece of making a decision like this. Like you said, there's the issue of the expense and even worse than that is how very difficult the travel is on the patient. She abhors the thought of the next trip for followup with doctor. Thank you so much for such thoughtful responses. We continue to ponder our options.

Poohbear and Sunfish, Did you feel that the testing you had done at Mayo and Vandy were of benefit for you in the long run as far as helping to find the best medications for you based on testing results? I'm curious about that as my husband and I keep bouncing around the possibility of taking our daughter to Mayo for just that reason. She has a good doctor (out of state) but there has been almost no response to medications to date and she is quite debilitated. It seems we are ever in a state of trying to decide if there is anything more we can do to try to get a bit of relief for her. We watched some of the videos from some of the talks from the NDRF conference in 2000. That got us to thinking on this topic once again. I have certainly heard repeatedly that followup is not a strong point of the research facilities. That in itself is not as much of an issue for us since we have a good physician for followup. However, we have wondered if some testing would be beneficial. I think Vandy only sees those 18 and over, so that would not be a possibility, but I've been mulling over the possibility of pursuing testing at Mayo. Of course, the ultimate question then is whether that would actually be of benefit. Of course no one has the magical answer to that question in any given situation, but I'm curious as to how you felt additional autonomic testing that can only be done at such centers has impacted your overall treatment. I'm speaking of the specialized autonomic testing beyond the tilt, i.e. testing that tries to identify the specific mechanisms behind your dysautonomia. Would appreciate any input from you and others who have had such testing at places like Mayo and Vandy.

Sunfish, Thanks so much for the links. I had tried a search but did not come up with all of those. That is helpful. I appreciate the time you took to do that. Jenn202, Thank you, too, for the information you have shared. We seem to be getting nowhere in spite of multiple medications, and I am just exploring the thought of trying an IV outpatient to see if that would give her any relief at all. It would be so nice to have some alternative to occasionally use when she just simply would like to have a few hours of feeling maybe a bit better. She has a plethora of problems that go with the POTS, but the two that are debilitating and are keeping her down are the exhausting, unrelenting fatigue and the intolerance of being upright. She would dearly love to have any amount of improvement in these two problems, regardless of the degree or brief time of the relief. She is a good athlete (especially hockey, can you tell?!! ) who can now barely tolerate standing upright. While she realizes the reality that it may be quite some time before she is able to play hockey, she would welcome a chance to feel some better even for a little while. To all of you who suffer from POTS and NCS and other conditions of dysautonomia, my thoughts and prayers are with you as you deal with these conditions on a daily basis. As a POTS parent, I know how tough it can be! When we feel ourselves starting to get down about it all, we try to concentrate on the fact that as bad as it seems, we are still greatly blessed in so many ways. Those kind of thoughts help us to get through the tough times. Our best to all who gather here!

Speaking of IV saline in general, I would be very interested to hear from some who have used it concerning the specific benefits you get from it and how long the benefits last. My daughter has POTS and has been having a very difficult time for several months. I have often thought of seeing if our doctor would prescribe this to see if it will give her some relief, regardless of how transient it might be. Even a few hours of some relief would be wonderful for her. If some could share their experiences, both positive and negative, I would very much appreciate it.

It is so sad and incredibly frustrating that this is such a common theme for so many dysautonomia patients! Unfortunately. it seems that most dysautonomia patients have had at least one such experience. My daughter was diagnosed with POTS earlier this year, and we have most definitely been down this path. We had one experience in particular that was very bad. On the other side of things, that makes us even more grateful for the wonderful doctors who do understand dysautonomia and have experience treating it and for those, too, who have not been familiar with it but who have been willing to open their minds and learn. I have the utmost respect for a couple of doctors we have seen who have been more than willing to take information we have given them, learn, and accept and understand a bit about what we are dealing with. Hats off to the "good guys"! Cheryl