JuneFlower

My daughter has lost so much weight, she may have to be hospitalized . She does not have anorexia nervosa nor has anyone suggested that . Has anyone heard of POTS causing weight loss? She's having a few more tests soon.

June

Christy- ok was it a good experience ? I've heard some bad things about the Pediatric pain rehab clinic

June

micheller- My family is flying tomorrow. My daughter's cardiologist said to drink lots of fluids and to get up a lot to walk in order to help circulation. Can you drink something besides water like Gatorade and bring anti nausea meds like zofran? Maybe take the anti-anxiety med once you are on the plane so it doesn't matter if you are drowsy. Ours is a 5hr flight with a 2 1/2 hr layover and a 5 hr drive. Ugh. Maybe my daughter will sleep.

Good luck!

June

So still researching specialists. I have heard peripherally about this "POTS Clinic' at the Mayo Clinic. Is this different than the Pediatric Pain Clinic/Program? Either way, I can't find any info on dysautonmia or POTS on their website. And all 4 doctors that are listed who specialize in this have 'greyed out' links. Are they gone? (Sandroni, Low, fealey). Any knowledge on this hospital would be great. I am leaning towards the Childrens Hospital in WI.(Chelimsky)

June

I think its >30 beats over baseline for adults and >40 beats ver baseline for children

Christy-well I will ask a dr (not sure which one) when I can. Thanks,

June

ChristyD- Sorry to hear about your daughters struggles. My daughter is 5-3 and 84lb. Not good. We are seeing a nutritionist tomorrow.

Thank you PRmeg. I will look into your recommendation.

June

lulusoccer-I'm not sure if they use that in children for POTS. I know they do for Addisons.It can cause mood changes which she is at risk for. It has not been suggested. The cardiologist said he has nothing else to give her.

June

Christy- Oh they used to be in Cleveland? I see it looks as if they are at Childrens Hospital in Milwaukee. It seems like a good program. They already called and talked to me. (well some secretary for them) But they were knowledgeable and I think I will call back if my daughter tests negative for Addisons. A lot of the POTS symptoms are the same as Addisons. Her unexplained weight loss is very worrisome. Does anyone have that?

June

My daughter's doctor always stresses that she should drink salted fluids, not really water. Gatorade is good and soup. Maybe IVF would help too but I have no idea where I would get that for her.

June

thanks guys! I will look into Dr Rowe as I am close to Baltimore. I will also check with Dr Stewart but it does seem like he only does research.

June

Stephanie,

Thank you so much. I will add your suggestion to my list. I am so frustrated and have finally realized that we have to see someone who deals with this all the time. I kind of felt dumped by the cardiologist at the last visit.

June

I am so desperate to get all the tests necessary and the best treatment for my daughter. She already has a cardiologist, a gastroenterologist, a neurologist and an endocrinologist. My plan is to find a specialist in Dsyatunomia (the cardiologist said she has that) if her Addison's test is negative.

So I am asking if anyone can tell me good reviews of anyone they've seen. I am considering Dr. Julian Stewart in NY (he is very close to my house), Childrens Hospital in WI with Dr Chelminsky, or the Mayo Clinic. I am open to any additional suggestions. I know there is a list on this website. But I was hoping for actual 1st person reaction to these doctors. Some of them are far away and will cost a lot. But I will do anything for my daughter. Thanks

June

Just be careful that you get the correct amount from a doctor. You can easily overload on IV fluid and cause pulmonary edema. Not good.

June

Christy- Thanks for commenting. I am starting to think we should rule it out. My daughter just told me her rib hurts….Weird. It's really endless.

June

Nadolol works so far for my daughter. It slows the heart, allowing it to fill properly. Now it stays about 100 when she stands.

June

Christy- wow my daughter has most of those symptoms. But I never thought of her as having hyper mobile joints. Hmmm. Thanks for sharing.

June

srb- Thanks for replying. I did the igenex testing for lyme. My results were borderline or what they call equivocal. They are hard to interpret. They test multiple bands. Some of mine were positive and some were negative. But my elisa and western blot were negative. Its so hard being a patient! I definitely think a dr would be able to tell you if you have EDS. Not sure which kind of dr teats that. That hasn't come up yet for us. We'll see. I hope you feel better!

June

Christy,

Wow, yeah, abdominal issues are very big for my daughter too. It doesn't sound like she would do well there.

davecom,

I didn't know that statistic. I will keep digging too.

June

Christy- thank you for sharing all your story. Sorry it was such a struggle. We are in the middle of the that same struggle. I am glad you shared that info about the May Clinic. I was researching that program and a bit wary because they didn't have any diagnostic information. I don't think we will go there now.

June

Sorry to hear about this visit. We had a somewhat similar visit with my daughter's cardiologist last monday. In your case, I would seek out another dr. There are many other medications to try depending on your situation. It doesn't sound like this dr is knowledgeable or comfortable in treating you or finding the original cause.

My daughters cardiologist was bale to improve her blood pressure to 85/46 (one measurement). He said this is acceptable. But she feels awful and still can't go to school. He says this is all he can do medically. I am having her tested for Addison's disease. This is often confused with POTS. He did say she had dysautonomia but not why. She is also losing a lot of weight and no one can explain it. I get the feeling some drs think she is anorexic but she isn't. She love sweets and is not eating any differently than she always has.

I would keep digging for answers. It's your life! Good luck and keep us updated!

June

Yes from what I understand, the increased pulse rate when standing can cause the feelings of sickness and also fainting. When the heart is beating very fast, it cannot fill properly and therefore there is not enough oxygen getting to the tissues.

A blood pressure of 100/60 by itself should not explain the dizziness. But many other things can, anemia, low blood volume and POTS.

June

srb- Sorry to hear about your troubles. There seem to be two competing theories on Lyme. There is an Infectious Disease specialist at the hospital I work in. He does not trust the Ingenex Lab. He says that "everyone comes back positive" from them. He doesn't believe in chronic Lyme. Not sure what to think as I know of people who seem to suffer for years after an exposure. Longterm antibiotics (a year) help.

Also many other diseases come from ticks and they just discovered another one. (Babeosis, erlichosis). Worth some good tests.

As for the fainting, i could see that lidocaine being a trigger for some people. It s great to know your triggers to help keep safe. But just the fact that you passed out should be addressed. Maybe another set of orthostatics at a cardiologist office? I don't see how a tilt table test is much different really…but my daughter hasn't had one. Maybe its time for a medicine if you are this symptomatic. Good luck.

June

Christy- Thank you so much for that info. I feel much better about considering a trip out there. After the Addison's test, we will make an appointment if my daughter isn't any better. The cardiologist got her b/p up to 85/48 and said that was all she could do and she should see a nutritionist and exercise. I think both of those things are great but my daughter is still nauseous with abdominal pain and headaches. And she is very pale and exhausted. She can barely get off the couch.

Thanks corina!

June

Thank you for your input. Well we followed the drs advice. I don't see any bad side effects so far. In the past she has missed a few days of all her meds due to vomiting. She never had any issues then either. Hopefully she will be ok.

June