kclynn

Ele, the pain in your arm shoulder will hopefully just go away. I don't know if this is your problem but when I was having a simple blood draw the nurse did a terrible job and hit a nerve. It was painful at the time the pain was great for the next couple weeks but did eventually go away.

It is a known fact that it takes approximately a year to see Dr. Grubb. Do some get in sooner? It happens for various reasons, someone who is really close can sometimes pick up a cancellation opening, someone's dysautonomia is in crisis stage, but the vast majority wait. You need to get on his waiting list, call for cancellations, see his PA Beverly (she is fantastic and sometimes this gets you to Dr. Grubb sooner but don't expect that until you have a follow-up), and try to maximise your other available medical care. Then when you do see him don't expect miracles. I think sometimes the expectations are really high. I think most people have a pretty good experience with Dr. Grubb and Beverly Karabin, and also find working long distance is difficult. This is not unique to their office but is pretty much the situation for most of the specialists. It can take a month or two to get the notes from the visit (we don't have ours yet from this past visit a month ago) and that also isn't unique (Mayo took almost 2 months). If you need the notes sooner be sure to call. The patient load is very heavy and also very demanding. Thank God these Drs. have taken on this specialty, there aren't nearly enough, and an occasional note of appreciation would be really welcomed by them. Dr. Grubb's wife has had a brain tumor and this why he isn't seeing so many patients. Beverly has seen thousands of POTS and dysautonomia patients, has worked by his side for years and is listed on his research papers. She is also a PHD. Her medical advise is sound.

We stayed at the Staybridge Suites. There is a shuttle that runs hourly (and half hours, too) and picks you up at the door and drops you off at the door of the clinic. Also, the staybridge has heated underground parking, and during the week they were cooking something for dinner so you didn't have to cook (complimentary) like chili, chicken and dumplings, that kind of one dish meal. They also have kitchens and two rooms. With my son's anxiety it proved invaluable to have the two room suite. Ask for the Mayo discount. That said, the Ronald McDonald house sounds really great and wish we had looked into it.

Julie - No, no the Dr. my son is scheduled to see at the Children's hospital in Kansas City. His name is Dr. Ding-You Li. It is a teaching hospital and he is a professor and Medical Director.

I think that is a very good point!

Julie, DX POTS and NMH, two places. He never vomits but feels like it sometimes. I was just briefly looking a publications for this Dr. and saw one in 2011 that makes connections with the GI tract and mast cell activation, which I think is very interesting. May not have anything to do with my son, but might and I think it tells me this Dr. is interested in newer theories. I have to go, but will look into it more later.

He got an appt the 26th of this month! Not as bad as I feared. You know how they list the Drs. special interests? This one is hepology and bile acid metabolism, and GI pharmacology..hmm He did his residency at John Hopkins. Hopefully they can figure it out. Kind of wish he was with a motility specialist but not sure that matters?

I posted recently about my son's troubles with nausea and problems with his entire digestive tract really. The GP is now going to refer him to a GI (finally!) but the more I read the more I wonder if anything they find out will help. Is this just something to have to live with? I asked the GP to run a serum test for Celiac and food sensitivities and she said she has already done the Celiac at some point but would do the food sensitivities. I know this might yield some information or may not and he could still be sensitive to some foods even if the test doesn't show it, right? Other than that she wants me to keep a food diary and bathroom diary, which I think is good and will be helpful information. Side note: The nurse asked me if there was someplace I prefered him to be referred and I said I didn't care other than I would hope for someone who might have some idea of how his dysautonomia might be impacting his GI problems.... are you ready for her comment? She blurted out WE don't even understand THAT! Uh, yeah, and there is the problem.

When my son saw Dr. Beverly Karabin (Dr. Grubbs office) this month she said absolutley don't take salt tablets for the reason you mentioned. I think the salty drinks should be sipped, also. Maybe have plain water available as well and alternate.

I weighed him today and he is down another 3 lbs. He doesn't throw up, just gets really sick feeling, can't eat. Then sometimes, almost always between 7 and 10 pm he can eat, then he ends up in the bathroom a short time later, and it doesn't matter if he eats bananas and applesauce or chili, pork chops or chicken and potatoes. He is about 50th percentile so still a good weight but it will get serious soon, when he first got POTS he was about 98th percentile, so he had it to lose, and actually way back some of the weight loss was through managing good food choices but that was almost a couple years ago. This fall he has probably lost 15 lbs just not eating.

Ha, Dizzy, when she did that she acknowledged it would seem strange, but at the time he was doing chocolate protien drinks in the AM and she thought too much protien right off is hard to digest, so just chocolate milk, with a straw. I do get Nestle which isn't made with HFCS. Mostly it is to gently get some carbs into him early is the purpose.

Jangle, he does tolerate applesauce quite well, that and the choc. milk, actually.

Christy, I wish we could (even debated going to see them inst. of Beverly), but we can't travel right now. From what I hear they have a pretty long waiting list right now, anyway, too. PL, Thanks for the encouragement. This has been one of his main symptoms for the last year, except for summer. Hope you get answers, too! ana, an elimination diet might be a good idea. Thing is he eats very little. He actually didn't have any chocolate till recently when his Dr. told him to have it, used to eat a lot of spagetti (tomatoes), used to eat a ton of cheese but has had none for a few weeks, and no alcohol. Still, it wasn't any scientific measurable thing, so maybe. Micheller, he has a scrip for Zofran but hasn't used it in a long time. Used to be we figured out his worst nausea would last maybe an hour or so and that by the time the med worked he would probably be improving anyway so we stopped it. I just asked his Dr. about it last week, but she said no, not right now because he already takes so many meds, didn't want to add that into it. She wants to see if the Prilosec is having any positive effect (not really, not enough). Now his nausea is all day, though, so will be having a conversation with her tomorrow.

That's interesting. He actually prefers his waters (and that is mostly what he drinks) at room temp. I wonder if he does that subconsciously?

My son has been having nausea for months now, and it has gotten worse, also IBS like symptoms as well. He can spend 1 to 3 hours a day in the bathroom. The troubles there vary. He is now hardly eating anything. His GP encouraged him to have at least some chocolate milk in the AM to help with his insulin (so he doesn't get nauseous from not having anthing and too much insulin). We have done Zantac, Prevacid, PrilosecOTC and nothing has made any difference whatsoever. I have written about his trouble breathing from reflux, and I should say that is better. He still will have an episode now and then but not nightly. Other than that, he wakes up nauseous. I am pretty sure the GP will be referring us to a GI doctor. Hopefully it won't be 2 months but it wouldn't surprise me and it can take awhile. When my daughter needed a GI Dr. it was almost 3 months wait! I don't think he can wait that long. Besides that, though, it always scares me to go to a new Dr. who may not be familiar with POTS. And this facility is where we have gone previously through neurology and the old neurologist who should have retired long ago put that he was convinced my son's symptoms are psychological (even AFTER he had the dysregulation of autonomic nervous system diagnonosis and POTS from MAYO which he said he respected very much). I guess we will just have to move forward with it but I hate possibly subjecting my son, who has a hard time coping with this to begin with, to that. Sorry this is so long. I guess I am wondering what kinds of test might be the most productive at this point. Thanks

Crystal Light Pure (with stevia) mixed with a G2 elctrolyte packet (I get them at GNC but you can probably find them at other places, they are black). The packets have 400 mg potassium and 780 mg of sodium. Makes 16 oz. Also, sometimes would just use 1 packet and add a little into other drinks all day long

Jenglynn, I have been following your story and truly hope you come up with treatments and answers. I can not add anything but I understand how overwhelming it can be. I was wondering if you could call and get an email and write out your questions as you have done here. Much easier to have information written down so you can research and evaluate. When my son went there the nurse was happy to give me her email which she then sent the questions to the Dr. Maybe when you call your husband can be on the phone with you. Blessings to you

My son is trying this (2nd day). He seems a little more irritable and had some bad stomach nausea the last couple days, but then he is often irritable and has stomach nausea Hoping if this is contributing his body will adjust and this will get better. Mostly trying it for the fatigue and brain fog which has been more of a wall than fog. Anyone else?

Is it surprising they ramped you up so fast on the Mestinon? Seriously, everything I have read is that it takes weeks for someone to work up to full dosage and much fine tuning of the dose. With everything else going on it may not have been a fair trial of that medication. If you start much more slowly, perhaps it would work? That said my son tried it for almost 2 months and it didn't do anything, maybe made things worse but that is hard to say, nothing like you describe, though.

Rama, do you know where I could read about this?

Here is what happened. Dr. is concerned that he doesn't eat from 9 at night to 3 the next day often. When he does it is maybe a small protien shake, small snack, sometimes a burrito, but not early enough calories for a 16 yr old boy. She thinks maybe he gets nauseous from his insulin not working right, nothing there for the insulin to use, so body makes more insulin thinking something isn't working right, and so on and so forth. She said that is one posibility, low blood sugar along with that (his was 75 today at 11 AM and he had not had anything to eat). So possibly his bad brain fog is at least part of that?) She totally gets he has pots but also doesn't want to "miss something" just thinking it is part of pots. I love her She is also conservative so a trial of Nexium (which my insurance won't pay for so we are trying Prevacid OTC per the pharmacist till we get a preapproval straightened out possibly) Insists he try to eat a little every morning, even a chocolate milk, applesauce... something like that, not so many protien shakes 1st thing. I think it is a good start. His nausea has been there since he got the POTS last year, though and I am not sure if he doesn't eat because he is afraid of being nauseous or if he truly has no appetite. Usually when he finally does eat, more than half the time he has at least some nausea. Good start, after a couple of weeks she will think about more intensive tests for him. She told me she has read all the papers from Dr. Grubb and Beverly Karabin That made me feel good.

I don't think he has EDS. We just saw Beverly Karabin and we specifically talked about it because I know they see so many patients, and those with EDS also. My son is more flexible than lots of kids, he can bend and touch palms to floor, bend little fingers back, his knees go back a little when standing and elbows back a little, but neither is extreme. He also doesn't have the physical features, longer face bigger eyes, tall and lean, he is very average in his build and appearance. Her feeling was no, but I had been wanting someone to address this so this was good. Also, they have studied some that have jerking following a faint, but his isn't at all like that. His is worse when he is anxious, stressed, as I said if he has ANY other pots symptoms but sometimes they happen out of the blue when anxiety or stress doesn't appear to be present... Also when his vasal vagel is especially stimulated, such as extended time in the bathroom with IBS like symptoms, though we wonder if he zones out with brain fog in there sometimes

TLC's mom, I have no answers but sadly my son has had these Jerks since the major onset of his POTS. They are less when symptoms are less, more when other symptoms are present, nearly disappeared over the summer when he showed few other symptoms (only when he became very fatigued) and returned with the onset on symptoms this fall. He started Clonidine a couple weeks ago, they may be fewer (they were almost constant, now he goes hours without) but they are still there. The couple of ANS Dr. we have seen say they are not that familiar with this symptom (they are cardiologists and well known), suggest a neurologist. The one neuro we have seen is convinced they are psychological because he can't find a reason he is familiar with. I hesitate to take him to more Neuro's with out knowing they are familiar with Dysautonomia. Even if it is a more uncommon symptom I see that there are quite a few here who have said this happens, but now real explaination. My son also has tremors and this fall sometimes his legs get to really jumping, and I can feel them in his arms, shoulders. Not all the time, though his muscles are tight so suspect the symptom is actually there most of the time. I know this probably doesn't help, just looking for answers, too. This is one of his most distressing symptoms because it is so visible, he has had kids tease him cruely now because of it.

A few days ago I started giving him generic Pepci AC and the nausea hasn't changed, really, but I am not seeing the coughing and throat constricting, trouble breathing at night. Interesting....coincidence? It has only been a few days, though...

JWPotsMom and RubyTuesday, Yes I would agree about the ENT or another GI because there maybe more they can do. What I would be concerned about that GERD, regardless of the trigger, is causing damage over time. This is my concern. My husband was just arguing with me this point this afternoon that it is "just POTS" but I think it needs to be looked at. Hubby doesn't want to drag him to yet another Dr. which is very distressing at this point to my son. I understand that but I worry about 1. the possible damage and 2. overlooking a solution that could make him feel so much better. Sometimes I don't know what to do. With the IBS stuff along with this he is pretty miserable...