Anyone gone to Vanderbilt?

[laurab2818]

Has anyone gone to to Vanderbilt for evaluation and treatment?  I'm considering trying to get into the clinic or also may volunteer for the two week research program.  Can someone tell me about the research, what to expect, and especially the pros and cons of doing it?  

Thanks!

Laura

[Heiferly]

Ma and Pa Kettle,

I highly recommend a G-J feeding tube instead of just the G, considering the extent of her GI damage. I'm in a very similar state of progressive autonomic failure and opted for the GJ tube and am very happy with it. This way, you can continuously drain pressure, gas, and excess acid from the stomach whilst feeding formula into the jejunum (small intestine) which bypasses the failing stomach for a somewhat healthier part of the GI tract. Jejunal feedings are strongly preferred over gastric enteral feedings for patients with digestive tract paralysis like us. If you would like to speak with more adult patients about our experiences, send me a private message here and I will connect you with people.  

You are great parents and your daughter will benefit greatly from that! <3 Best wishes for you and yours, H.

[Ma_and_Pa_Kettle1]

Our daughter was misdiagnosed for over nine months. We've been living with this for over 2 years now. We went to Batson's Children's Hospital in Jackson, Mississippi this past December for 10 days. They diagnosed our 15 yr old daughter with Pure Autonomic Failure, Postural Orthostatic Tachycardia Syndrome, Dysautonomia, and Vasovagal Syncope. Our daughter's bladder and bowels are flat lined (will not work again). In our daughter's case; it is a progressive neurological condition that has made her body's own antibodies attack her nervous system. All this started with a viral infection that we rushed her to the E.R. for over two years ago. They wouldn't listen! Be your own advocate and use what God gives you to discern! We are grateful beyond words for Batson's....they were also very expedient in getting us scheduled for all the necessary tests.
We are preparing for IVIG therapy now. It is probably the only thing that might stymy the antibody war going on inside our daughter's body.
And because she was misdiagnosed for so long...and it took us so long to finally find physicians who made a difference (not only at Batson's)...the damage was done. I will leave you with a great analogy that a neurosurgeon gave us to explain our daughter's malady: Imagine all the smooth muscles in your body as outlets in a wall (and what isn't a smooth muscle in your body; i.e. bowels, bladder, lungs, brain?) ...Then imagine all the nerves going in those smooth muscles as "the plugs..."
Any time there is a disconnection...you have only a very small window of time to reconnect those plugs OR cement comes down over the outlets and you are NOT going to get any more connectivity....EVER.
Because of the arrogant stubbornness of one pediatrician and his preempting probably every visit we had with the specialty facility he sent us to in the beginning...our daughter must live with life long, severe,  debilitation. We were also told by our main specialty hospital now that she could have had a 97% cure rate if the E.R. we had taken her to that first night over two years ago...IF they had JUST given her a course of steroidal treatment to take care of the inflammation that was occurring in her little nervous system. It's tough to move on in a Christian manner but you have to because you can't take time to worry on the negative things...you have to stay strong, positive, focused and determined! Research,research, research!
The sad thing with our most beautiful daughter is that we have been told that this will most assuredly affect her longevity of life.
She needs two pumps to stool, she has to catheterize herself to void every 4 hours for the rest of her life, she has to have at least 2 liters of IV fluid a day to give her enough blood volume to circulate and to try and keep her hydrated (and right now that is done by a picc line)...soon a port will deliver her IVIG. She has had an Interstem implant, an appendicostomy, is actually looking forward to a mitrofanoff and a g-tube, so that she can void more easily, drain her stomach of SIBO gas herself, and use the g-tube for keeping healthy nutritionally.For Pete's Sake...she's so young. Parents "sigh" but move on quickly to specific organized thought pattern...lol.. as to exercise that "positivity factor" we told you about.(You have to stay focused, Sis!) We are so grateful for your post...first time we have ever spoke out to anyone about our journey. Thank you for listening! Here if you want to holler! God's blessings! Ma and Pa Kettle

[momintexas]

My daughter who is 13 is having symptoms of dysautonomia. Besides Vanderbilt the Mayo clinic Dr. Low is an expert. We have an appointment at Mayo and are seeing a Dr. Phil Fischer since she falls in the pediatric realm of treatment. The Cleveland clinic has another clinic as well. Vanderbilt appears to be researching the best with most of the publications in this field. We are considering Vanderbilt as well as Cleveland to resolve this issue. Dysautonomia is caused by various problems (virus induced, autoimmune, vasovascular, heart problems) but it all comes to parasympathatic nervous symptom control which leads to other symptoms as well. I will let you know how Mayo is but we don't go unitl end of August. Good luck!! All of our doctors tell us this is rare. This diagnosis was discoverd by Mayo and Mayo was the first clininc of this kind and I think was open in 1999 so we are new into treatment of this problem only ten years in the making. UGH!! This is so fustrating sincee it really affects the patients lives dramatically!!
Good Luck!!
Mom in Texas

[gracieandzachary]

Hi there, I too have a wonderful husband who has been stricken suddenly by this awful autonomic dysfunction, probably dysautonomia.  We have been through the local channels and now have been referred to Vanderbilt for diagnosis and treatment.  We are awaiting their call to schedule our appointment.  Each day is a different issue and it is taking it's toll on him.  God is good and with all the prayers being lifted up for him, we are trusting we'll confirm a diagnosis and receive some treatment for the symptoms.  Many blessings to you and your husband.
gracieandzachary

[chames]

Hi, Laurab,

Thanks much for your update. A waiting list -- of course. I see from WonderWoman3 (hello there!), it's a long waiting list.

Husband getting some very basic autonomic testing done locally this Friday. I don't know if it will be definitive as to what he's dealing with, or instead rule some things out, and just inch closer to a real diagnosis (meaning more tests). Maybe that outcome will guide our decision on next steps. Still getting a feel for local facility, their knowledge and depth. Better than some places, to be sure, but not the super experts either. Will have to see if what they have to offer is 'enough.'

I hear you on the getting behind with things. This octopus of autonomic dysfunction has taken over our lives, it's hard to keep up with even the most crucial. And if it's not a huge deal or an emergency, forget about it!

I hope it's a process of acclimation and I/we get better at it as time goes by.

Thanks again so much for your reply. Hope you had a good day.

Chames

[wonderwoman3]

I've been accepted into Vanderbilt in October and my cousin has already gone.  She said they were great, but be prepared to be one of many since the facility is so big.  I'll let you know how it goes, though my doctors here at UC Davis Medical Research have been pretty awesome so I'm not sure if It will even do me any good to go.  Good luck, they are supposed to be the best in the world.  Try Mayo Clinic in Jacksonville FL (they are doing another study) if Vanderbilt doesn't work out.

[laurab2818]

Hi Chames,

I haven't gone to Vanderbilt and hope to get on the waiting list soon. It is one of the top places. I need to finish my paperwork.  I get so behind on stuff, even things that are very important to me.  I haven't been able to find anyone good locally.

Hope your husband gets better sooner than later. Yes, every day is different with this illness.  That makes it quite challenging.

Good luck!

[chames]

Hi, Laura,
We've looked at the Vanderbilt website, mostly with consideration of their clinic, for my husband's mystery, very sudden onset 'autonomic insufficiency.' which is proving very slow to get tests done and get a diagnosis locally. Meanwhile, he is essentially housebound and our lives have been turned upside down.

But ... unsure of what is best path, plod along locally with what we think will be a good team? Or venture out, and hope to get all tests done and a diagnosis more quickly?

Just read your post from late March. Wondering, did you check into it, or even go? If so, what were your impressions or results?

If you see this, appreciate any updates. And hope you're feeling 'okay.' I'm learning, seeing my husband go through this, that that is an very changeable thing day to day.