Frustrated! Research Hospital wont take my child

[Dedee]

We live in the Nashville area and my pediatrician finally found a Pediatric Neurologist who is willing to treat my daughter. We got her labs back and her myco p was positive on both IgG and IgM. My pediatrician had consulted with him and they agreed she needed IV antibiotics (She won't take meds by mouth), and IVIG. Her symptoms have gotten extremely bad lately and she is barely able to attend school. He was willing to admit her to the hospital without seeing her and start treatment immediately. They called me and told me to meet them at Vanderbilt Childrens. Then 30 mins later called me back and said to stop because Vanderbilt won't accept her case. They really don't know much about PANDAS and no one wants to take the responsibility of IVIG if the standards of care aren't clearly defined. You have got to be kidding me!!! So the Ped. Neurologist talked to several administrative people but was never able to get her in. Can you believe it? The big "Research Hopital" won't take something that isn't defined???? I am just speechless. So we ended up meeting at his office and he is going to try to get her into another smaller hospital next week as an outpatient and do a sedated MRI and at the same time put in a PICC line so we can do home IV antibiotics. Said we would see how the antibiotics do and then talk about IVIG. He wants to do the first IVIG in a hospital setting, just don't know where yet.

 

I have said it before, but isn't it enough to have to deal with my daughters rages, OCD, and constant physical complaints? But PANDAS parents have to throw in Health Care Providers acting like a bunch of idiots too. Why does everything feel like a fight these days? I am worn out. Some days I feel like I don't have any fight left.......

 

Dedee

Edited April 1, 2011 by Dedee

[JAG10]

Grrrr

 

Sorry, wish I could say I was shocked, but I don't like to lie.

[mkur]

The big "Research Hospital" won't take something that isn't defined????

Texas has the same problem. I feel your pain. Where there is a will there is a way? Keep searching!

 

Good Luck

[lyme_mom]

If it makes u feel better I would want to try the iv antibiotics first and then later do ivig because you may not need ivig after a picc line. U would not want to do both at the same time because it could cause a severe die off reaction and u would not know whether it was the antibiotic or the ivig that caused it. If u r able to avoid ivig that would b great because it is not known whether u can get Lyme or other diseases like babesia from the pooled blood product. I know someone who called to ask if they test the ivig infusion for Lyme and she was told they do not "because some doctors do not believe it exists." that is troubling if true. Even if they tested there is no reliable test for these infections.

[EAMom]

Hugs!

 

Big research hospitals can be such big idiots.

Edited April 1, 2011 by EAMom

[Guest pandas16]

I recently went to Newark Beth Isreal Hospital which is a teaching hospital. The doctor suggested that I go to a teaching hospital for PANDAS. I was like you idiot, this is a teaching hospital. GRR

Edited April 1, 2011 by pandas16

[MIAS_MOM]

Hey ! We also use Vanderbilt Childrens Hospital. Although we are a good 2 hr. drive away, Our psychiatrist, nuerologist, nuero pschiatrist and therapist are all there. We too have tried for IVIG treatment there, found a cardiologist that says he will do it, but doesnt know the follow up to it and nothing about PANDAS. We currently are awaiting our appt with the Immunology Group in June for IVIG at All Childrens Hospital in Fl. The good PANDAS Drs are all northern or southern of our area, We are in a "dead spot." We decided on All Childrens after being declined the current study going on in West Virgina because we have had PANDAS for over 2 years, and you have to be 6mos or less into it ! HA, around here you dont get diagnoised until at least 6 mos! I knew after trying for weeks to find IVIG treatment, to just "go to the IVIG treatment!" Our Docs are all in agreement, Sometimes when nothing else is working, we just got to look outside the box. Let me know if I can help you in anyway, and I might be asking you some questions as well ! Good Luck !