Lenna

I tried to get Danny to see a therapist, figuring that he needs to talk to SOMEONE. he went a few times and then refused to go back. He said that therapy was forcing him to think about his problems and that made everything worse. Boys/men are such a different species! (no offense to anyone out there...)

Julie, thank you for sharing Mack's story with us. It's both heartbreaking and inspiring, and I'm sure that all of us who are parents of kids with POTS can take hope from it, just as you intended. Mack is an incredible fighter. It was interesting to me that you mentioned that he never speaks about his illness to others. Dan is the same way, although I've told him that when it comes to college applications, he'll need to learn how to be "queen for the day" to help explain his non-traditional path through high school. (if you understand that reference, then you're as old as me!)

Julie, everything you wrote is exactly what I'm thinking/hoping. Danny does drink 2-3 liters of water takes 4 salt tablets per day. He's on a waiting list to see his doctor and will hopefully get an appointment for June. In the past Dr. Freeman has been reluctant to put Dan on Florinef for reasons I don't understand, but at the last appointment he sort of indicated that he would consider it now if we want to give it a try. I do think I'm going to push for a trial of Florinef.

Another bike ride for my son - only 2 miles this time, which is really nothing on a bike. Again his blood pressure plummeted to 83/52. Fortunately he recovered more quickly than the previous time. But my question is, I wonder if Florinef would be useful for keeping Dan's bp up, while not counteracting the aspects of Losartan that are beneficial for him. Florinef is NOT a vasoconstrictor, correct? Any thoughts?

I bet it be caused by many different things. I know that Kawasaki's Disease can cause peeling fingertips, for example.

Hi Julie, We thought that Danny was having his Ang II tested, but his pediatrician accidentally ordered the wrong test. By the time the test results came back and we realized the error, Danny had already started the Losartan and it was too late to test. His neuro, btw, refused to order the test, saying that he would put Dan on Losartan regardless. But I wanted to know, that's why we asked the pediatrician to order it. I did look at the MCAD website you referred me to, Julie. I don't know if ever thanked you for that. The symptoms don't really fit Danny, so I think we can rule it out for him.

Niteworks,, that I mentioned above, is Dr. Ignarro's product that he sells through Herbalife. It has all the vitamins and supplements combined in a powder that he recommends for raising NO levels.

My son also takes Losartan to increase his NO levels. Since he started on this med last winter, he sometimes he seems a lot better -- and sometimes he doesn't. It has not been a miracle cure.

Hi toddm1960. Please explain how you reacted to turmeric. What happened to make you believe that you have low levels of NO? My son, who has low NO levels, takes Niteworks every night. It has a combined 5 grams of L-Arginine, L-Citrullin. I don't really think it does anything for him.

Great news, Julie!!!

Autumn, i'm so glad that it went well. That's great news. Lenna

Yes, the study that my son was in last summer is designed to prove that most POTS patients have too much NO. My son, who does not have enough NO, is considered to be in the minority - at least according to the medical team at Beth Isreal Deaconess Medical Center.

Issie, I'm not seeing the link to the video. Can you post the link for us? I'm trying to make sense of this article because I have a lot of interest in this topic. My 19-year old son Danny, who has POTS, was in a study last year that showed that he is deficient in nitric oxide. For the past few months he has been taking 25mg. of Losartan each day, based on studies that Julian Stewart has been conducting on low-flow POTS. Losartan is an angiotensin II blocker, and should increase NO and relax the blood vessels. Danny has definitely improved somewhat since he started taking this med, although he's still far from great. Anyway, a couple of days ago he was feeling really good and took his bike out for a ride. Granted, he's very deconditioned and we knew that he would come back pretty wiped out. But it was worse than that. After 3 miles, he was dizzy, nauseous, and his BP was 90/54. He still hasn't really bounced back yet. I'm not sure that I understand what happened. His BP has been on the low side (diastolic typically in the high 60s) since he started taking Losartan, but should it have dropped like that with exercise? If he has greater availability of NO while taking Losartan, shouldn't his exercise tolerance have been better, not worse? I don't know if any of you will have some sort of explanation for me, but I'm happy to hear any theories. Thanks. Lenna

I am so excited about Dr. Stewart's research with low-flow POTS because I think it directly affects my son. I have BEGGED Dr. Stewart to either take my son on as a patient (he said NO because his long-distance cutoff is 2 hours, and we live 3 hours away), to see my son once as a consult, or to at least have a phone conversation with me. He was going to see my son for the consult, and we went so far as to forward my son's medical records to him, but once he found out that my son is a patient of Dr. Freeman, he nixed that. His last email to me was rather terse and I'm not going to continue hounding him. He won't see my son because he said that he has nothing new to offer him clinically, but I do believe it is a political thing. Lenna

Autumn, I sent you a private message as well. Lenna

Is Mason getting restful sleep? My son takes 6 mg. of Melatonin at night and it definitely does help him sleep, but he never wakes up feeling rested.

Hi Rama, I want to be sure I understand...cannabis REDUCES nitric oxide bioavailability, correct? Lenna

Thanks to everyone for your replies. It sounds like Florinef is most helpful with dizziness. I think that dizziness is a minor problem for Danny these days; fatigue is his major battle. It also sounds like you have to tread a fine line between increased energy and insomnia with Florinef. I'm not sure this is the best approach for Dan. Thanks for helping me out with this! Lenna

Julie, Wow...75 miles?! I would be impressed even if Mack didn't have health issues! I hope he's back on his feet really quickly. And believe me, I understand the sadness that you feel. I'm not sure why Dan isn't feeling great this week. I hope that his body isn't just acclimating to the Cozaar. Take care, Lenna

Crap!! Sorry to hear about Mack! Do you have any sense of what triggered it? I hope it's a quick and minor setback. Julie, I'm regressing from the dairy topic... Danny had his best 8 days of the entire year last week when he switched back to the Cozaar brand from the Losartan. And then had a mini-crash which has now lasted about 5 days. I can't begin to figure this out. I'm not the dizzy one, but my head sure is spinning!

My son cut out all dairy for about 6 weeks. It didn't make an iota of difference in his symptoms. Maybe he didn't do it for a long enough time, but he was losing weight on the dairy-free diet, and he's too underweight to begin with. (he also stopped eating gluten for about a year, again with no benefits that he could see.) Lenna

Hi, For anyone who has had success using Florinef, in what way does it make you feel better? Are you less dizzy? Are you less fatigued? I understand the mechanism of Florinef but how does that translate into improved functioning? Some people write that it's such an important medication for them. I'd love more info about that. Thanks!

This is a bit off-topic, but I'm struck by the fact that everyone who has responded to this topic has a son. My child who has POTS is a teenage boy as well. I keep reading that POTS is an illness that mostly strikes girls, but I think there are more parents of boys than girls who participate on this forum. Just an observation...

Julie, So sorry to hear about Mack! Danny had a torn shoulder labrum about 2 years before he began having POTS symptoms. I don't have any advise about the contrast, but I can tell you that acupuncture helped tremendously in his recovery after surgery. These kids don't ever seem to get a break, do they.

Can someone review for me exactly what Florinef is supposed to do for you? Is it just that it helps the body hang onto salt and thus raise bp,or is there something more? I used to know the answer, but now I don't. Thanks! Lenna