Jump to content

Dysautonomia Doctors?...


surfgirl14
 Share

Recommended Posts

Hey. So I am planning a trip right now to Lurie Children's Hospital in Chicago, IL. (it was formally known as Children's Memorial Hospital). I have an appointment on the 19th and am going to have more appointments with that hospital once everything has been set up. But I have some questions. Has anyone heard about/been treated at this hospital? I am nervous because one of the doctors I am seeing has bad reviews on a RATEMDS.com site. I don't want to get sidetracked from that one review and just not go because I may have a better experience. They have POTS listed as one of the conditions they treat and have a program called CAMP (center for autonomic medicine). They also have someone called Dr.Babra Deal who runs a POTS clinic. Overall after seeing all of this last year I decided it was my best bet. I have never seen POTS listed on a hospitals website let alone a program that incorporates a bunch of doctors who have a focus on autonomic dysfunction. Now I have heard of Mayo and Cleveland, but I am just not so sure about that. I have many friends who have gone there and they say it is no different then the doctor they already see who has some knowledge about it. One of my friends was down there for a month and all they said to her was increase fluids, the typical medicines for dysautonomia/pots, and put her on a strict exercise program at MAYO. She continued to collapse/faint and she did not approve and there were not new things they gave her. She saw Dr.Blair Grubb too! Anyways I just need anyone's feedback that can help me move in the right direction. It is about time that I travel far to get the best care...people where I live are just not equipped to handle me. I live in Charlotte, NC. Also I have heard of the chelemiskys in Wisconsin...I know a girl who went there, I wonder if I should go there too. I am currently working with a pediatric geneticist at our local children's hospital for a workup on Mito Diseases so far nothing has came up and now she wants to send me to either Atlanta or UNC Chapel Hill for a better work up, and she is no Mito specialist and they are. I just want my care in one place!...If that is possible. Sorry for the length post.

My current diagnosis:

Dysautonomia

Postural Orthostatic Tachycardia Syndrome (POTS)

Gastroparesis

Colonic Inertia

Pelvic Floor Dysfunction

Periodic Limb Movement Disorder

Hypoglycemia

P.S. = Has anyone had luck with IVIG treatment? I asked my current POTS doctor and he said he has never tried it on one of his POTS patients so I would have to find someone who knew more about that....who would know more about that? Any good autoimmune doctor?

~Thanks~

Link to comment
Share on other sites

You may want to look into Dr. Peter Lowe at Johns Hopkins. He's a peds pots doc with understanding of some of the underlying issues. If you Google him, you could find his Bio at the Hopkins website and you'll also find some videos he's made. I know some of his videos have been posted here in the past. I only offer his name based on feedback I remember other members of this forum giving regarding his treatment of their children and also the fact that Baltimore is a little closer to you than the other options you mention. Good luck in making a final decision on where to go.

Link to comment
Share on other sites

Kayla,

here is one of Dr Rowe's (the one that Katie suggested above) videos

and a link to his webpage at John Hopkins http://www.hopkinschildrens.org/Peter-Rowe-MD.aspx

Dr Deal - the one you mentioned in your post is listed on dinet's current list of physicians. According to her webpage (below) she is interested in evaluating the autonomic dysfunction disorders in adolescents.

http://fsmweb.northwestern.edu/faculty/facultyProfile.cfm?xid=10657

Perhaps one of the forum members has been or is a patient of Dr Deal and can offer you more info about her.

Lastly, ever heard of or considered Dr Black in Charlotte NC (she is on dinet's of physicians as well) ? http://drlapp.com/staff/dr-black/

IVIG is not the first line of treatment with POTS. I'm currently trying it (I had 2 treatments and will have 2 more then decide if I'll continue or not). It was prescribed by my neurologist but only because most of the other meds I have tried for POTS didn't work, plus I have a positive blood marker that (in most cases) warrants this type of treatment. It definitely isn't a cure and doctors do not prescribe this easily. If you are interested in this form of treatment I'd say you need to find a neurologist or maybe an autoimmune specialist (?!) with an interest in dysautonomia. Also, if you suspect autoimmune involvement in your case, perhaps your doctor can help you order the autoimmune dysautonomia blood panel from Mayo for you http://www.mayomedicallaboratories.com/media/articles/algorithms/adysautonomia.pdf

Out of curiosity - do you have any particular reason for looking into IVIG?

I hope this helps.

Alex

Link to comment
Share on other sites

Hi Kayla,

I noticed that you are 19 and was diagnosed with POTS in 2011. I am assuming that medications have not helped get you back to the level of functioning that you want to be at. Because of your age, you may one to see a doctor that will treat adults only but that may be hard to do because of your age.. I have heard many good things about Dr. Grubbs. My son is 13 and he was diagnosed by MAYO in 2011. However, my son has other symptoms that may not be part of POTS. I would suggest that you look for a doctor that will look for an underlying cause of your POTS. I know from reading many of Dr. Grubbs articles, this doctor does look for other reasons. Have you been checked for autoimmune problems? My son is being checked for these now. I wish I could recommend a doctor to you. Please keep us posted about where you decide to go and how it turns out.

Rachel

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...