Need help!

[kdee]

Hi, I have an 8yr old daughter who has mitral valve prolapse and pectum excavatum. In May she started complaining of shortness of breath, chest pain, headaches, tiredness, nausea, cold sweats. We went to dr he tested for mono which came back negative. We saw her cardio dr he said her heart is fine and holter test showed nothing. Well now she is having periods of dizziness, she doesnt want to stand for long periods as her legs hurt, she is seeing spots, her neck hurts and she still has shortness of breath etc. I think she has dysautonomia but I know her dr will blow off any info I find on the net. I found the closest center Vanderbilt in Nashville that treats this and called and the lady told me to just bring her to the er and one of their dr would check her out. My question is should I try to get a referral and make an appointment for their auto immune center or take a chance and go to their er? It is almost 5 hrs away so I hate to waste time and money but she needs help and her drs just think she is trying to get attention. Has anyone had experience at Vanderbilt? Any suggestions?

[Ernie]

Could she do a TTT close to your home?

Ernie

[Merrill]

Vanderbilt is one of the top research institutions for dysautonomia -- Dr. Robertson is there. You can do some research on their Web site too; I've not checked it out myself, but others who post on this board have done so. I'd get her to Vanderbilt ASAP. (PS is it really the autoimmune center you'd want? I wouldn't think so...)

Good luck!

[blackwolf]

I don't know if your Doc gave you any info on mitral valve prolapse, but I have heard of it and many of those symptoms sound just like it. I heard that sometimes the problem starts off as panic or anxiety and feeds off its self to creat more problems. I do have this to say, you might feel better going to the dysautonomia center at Vanderbilt. If nothing else, they can get things under control and start you on the right track. B persistant in getting help!!!

Good luck in helping your daughter.

Blackwolf

[opus88]

Mitral Valve Prolapse Syndrome (note the word Syndrome, meaning it's not just MVP) is a very real form of dysautonomia, and is what I have struggled with since the age of 6. POTS is not one of my biggest complaints at this time, although I cannot stand for very long without feeling faint, and I have low BP and chronic dehydration (among many, many more symptoms).

Some suggest that MVPS and POTS are actually the same thing, and that what it's called depends on your most prominent symptoms and the knowledge of the person who gives you the diagnosis. Don't expect an MVPS diagnosis from a cardiologist - most have never heard of it and the majority of those don't care to be educated about it.

Your daughter's situation sounds very much like MVPS to me - stronger POTS symptoms may or may not present as she gets older. But my feeling is that I don't care what they call it and I don't need to see a doctor to help control the symptoms. (I did my share of that - 20+ doctors over the years, none of which made me feel physically or mentally any better, and most making me feel worse.) I've worked like crazy thru nutrition instead of drugs (magnesium and B6 being very high on my list of important supplements), giving me a relatively normal life in spite of this condition. But I was lucky enough to not have the debilitating type of symptoms until adulthood, so maybe that makes a difference.

There is an MVP Center in Birmingham, AL. Maybe that's even farther away for you than Vanderbilt? The MVP Center has info at www.mitral.com - you may want to take a look.