Autonomic Nervous System Dysfuction Q & A...

Hello, my name is Denise. My son Rudy who is 25 and has spina bifida, hydrocephalus, arnold chari malformation, scolosis, and lower paralysis seems to now have symptons the past year of Dysautonomia. We no longer can go to childrens hospital because of his age and he only has the medical card. It is Very hard to get medical help for him now after so many years of Great medical care. I need a Neurologist, Neurosurgeon, and Urologist in lower Louisiana and really dont know who to try next. PLEASE AT LEAST TELL ME WHAT I CAN DO TO HELP MY SON UNTILL I CAN GET HIM TO A DOCTOR... He has suffered contstantly the past year with psudenomous bacteria in urine.... he just got his pic line out and i think we are ok with that now. He cant handle catheters. we had to go back to the way we always did it... but instead of getting him to push we just get him to cough and do push ups and rub his area... every 3 hours. no one wants to do a permanent cath or super pubic.... He is slowly losing the use of his hands. he is always so tired and hot with cold chills. Intermittent constipation and diareahea. Blood pressure either extrmemly high or extremly low, every few hours. Please help.... Denise

[mtgardner]

Denise,

I am sending you a link to the physician list on POTS PLACE.  It looks like the closest physicians on that list for dysautonomia are two in Dallas Texas.  Maybe someone on this site will know of one closer.

http://www.dinet.org/physicians.htm#United%20States

It often is hard to find an expert in dysautnomia and most of us have to travel often to different states to get help.  Some go to large centers like the Cleveland Clinic, Vanderbilt, or one of Mayo Centers in Minnisota, Florida or Arizona.  IT sounds like your son has multiple problems and will need a good team approach. I think you are on the right track seeking new doctors.  Your son has multiple disabilities so he may  be able to apply for
health insurance through state and federal sources.  

I hope you are able to find more help on this site and in your area.  Marie

[Heiferly]

Denise,

I am very sorry for the struggles you are having. I have friends with similar health problems to your son, and I know how hard it can be. One thing that immediately popped out to me from your post was that you said your son could no longer be seen at the children's hospital because of his age. What children's hospital has been treating him in the past? When did they turn him away and exactly why did they say that was?

I'm not disbelieving your account; I've just never heard of a children's hospital discontinuing treatment of a patient with complex medical issues/multiple modalities no matter how old they get. I have friends who have a history of childhood cancer, rare heart defects that were operated on in childhood, childhood injuries that resulted in spinal cord injury, etc. that are now in their 20s, 30s, etc. and are still being seen at the children's hospital here (Nationwide Children's Hospital in Columbus, OH). This same children's hospital just took me on as a *first time* patient at 33 years old to do testing for congenital metabolic disorders through their genetics clinic. What I'm trying to assess is whether this is too small/local of a children's hospital to handle his case so they're trying to hand him off to an adult hospital or whether there's any possibility of misunderstanding or miscommunication (i.e. whether it's possible that he could stay on as an adult patient at the pediatric hospital where he's been treated thus far).

One of your options, if indeed the problem is that the children's hospital where he's been getting treatment is too small/local is to look into whether it's possible to travel to a larger, more advanced children's hospital. Unfortunately, I'm not abreast of what children's hospitals are well-known in your region of the country. (I don't know many hospitals in the South at all.)

Looking at the Neurology rankings, I don't see much in the South except Texas:

http://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery

I know some families from the South have traveled to Cleveland or Philadelphia for diagnosis of dysautonomia, but that's not a complete solution for you if you're completely losing your medical "home" for your son. You need someplace closer to be 'home base,' even if you do decide the best option is to travel across the country to address the dysautonomia issue.

My search of the Best Hospitals database only turned up two hospitals with high rankings in neuro (and several other specialties) remotely close to you ... strong emphasis on *remotely*, because no matter where you are in your state, these would be a hike to get to:

http://health.usnews.com/best-hospitals/search?hospital_name=Hospital+name&specialty_id=IHPNERO&city=Louisiana+Tech%2C+LA&distance=200

Do you know if there are any top-notch children's hospitals closer to you? If you want to switch to an adult hospital, you can use the same page on usnews to search for top hospitals by adult specialties. I searched for pediatrics first because most of my adult friends who have stuck with peds are disappointed whenever they land in an adult hospital by squad; the level and type of care just isn't the same in an adult hospital as it is in a children's hospital. Little things like visitors (including family) not being allowed to stay 24/7 on certain wards in the adult hospital really bothered them, especially when they were struggling.

As to the catheter issue, what reason are they giving for not placing a suprapubic catheter? Those are "standard issue" for many with bladder dysfunction issues, as they reduce urinary tract infections. If I were you, I would get a second opinion on that for sure, especially if he's been suffering from severe UTI. I know someone who had a UTI go almost septic recently; they're nothing to scoff at, especially in people with paralysis! For the bowel issues, is he seeing a gastroenterologist at all? Is he on a bowel program?

Do you have home healthcare including home nursing? The home nurse should be able to offer assistance with the bowel program and also should be giving feedback to his physicians about what is and ISN'T working with regard to the plan his doctors have given you for his bowel and bladder routines.

I will try to direct you to as many resources as I can find; let me know a little more about the things I inquired about so I can get a more complete picture of what is going on. I can sense how frantic you are in your post. I am sorry that you feel you have been left to twist in the wind like this. Hopefully we can get things back on track quickly so your son is comfortable and you can relax!
Heiferly.

[dmayer]

thank you very much mtgardner and Heiferly. i really appreciate it. you know, this is the second time i am hearing that childrens hospital will still see you once you become an adult. once my son turned 22, they told me they only see children 21 and younger. i beleived that and said ok. he has not had any good health care since. the lsu system in louisiana is a joke, even tho thats where the good docs are. the people that go there are scary and the system is very fractured and no money. Im talking about new orleans hospitals. I will definitly contact childrens hosptial in new orleans and do my best to get him back there. Thank You Both Sooooo much !!!!

[Heiferly]

If they won't keep him on as a patient at the children's hospital where he's been going, let me know and I'll try to put out my feelers for where your next best option would be; my inclination is that finding you another good children's hospital as close by as possible would be the best option. Actually, I have an idea of just who you might want to ask. I'm sending you a private message. If you don't know how to access private messages on MedHelp, leave me a reply here and I'll explain.