NEED HOSPITAL. ARE THERE ANY THAT YOU TRUST?

[Hopeny]

 

I was told that Brian Fallon does not take pediatric cases.

that's a good point, it depends on the age.

[trintiybella]

Yes, all the doctors keep saying that our case is REALLY tough. Thanks for all of the suggestions. I just needed that "second wind" to keep going. This stuff WEARS YOU DOWN. Got good night sleep last night and I am ready to go again. I will read over all the suggestions and figure out my next step. Thanks again!

[JoyBop]

I'm not sure that your child would meet criteria for an inpatient stay based on what he would be presenting with. I would be fearful hat they would want to send him down the psych route and that would just make matters worse. Can you get in to see a PANDAS specialist?

 

If you went and said they had encephalitis or an immune problem you really wouldn't have anything to back it up. It's really a theory that our kids have inflammation to the brain but mind if us have any diagnostic evidence as such. Perhaps there are done that have had brain imaging but most of us have not. Even an elevated SWD rate or proof of a particular illness will not get an inpatient visit approved by insurance.

 

Have you tried the sleep clinic route? There might be done sort if inpatient program he qualifies for there.

 

I Agree the NIH is your best bet. Or get in to see a PANDAS specialist and gi from there.

[pr40]

how about dr Leckman at Yale? there should be a hospital there as well.

[tpotter]

The reason for hospitalization is that she NEVER sleeps. Seroquel, risperril, melatonin, trazadone etc....all make her violent. Antibiotics for bartonella put her to sleep in the past, but when we went back on them, they don't work anymore. We went off them to treat clostridia and to see where she is at. I just don't know what to do. She has never slept, even as a baby and it's getting worse. Our doctor just suggested NIH or Dr. Klinghart.

I agree with both...it isn't necessary to only use Dr. Klinghart, though. He treats/dx using ART, and there are ART practioners out there. Check his website. Unless you are on the NIH study, though, I wouldn't suggest NIH. ART is a GREAT way, IMHO to find out what is wrong with your child. Then, as far as tx is concerned, you can either choose a Klinghart route, or something else, but at least find out what is going on.

 

And, as far as the question about an encephalitis workup....no they wouldn't necessarily have done it in the past. A spinal tap, brain MRI, and some other things are used. But, PANS causes inflammation in the basal ganglia, and inflammation of the brain is encephalitis and/or encephalopathy. Doctors understand the generic term, but not the PANS term, and you will probably get further using the generic term...at least in my experience. I have had no arguments with docs since I started using that term. Then, if they ask, I explain what the infectious triggers were.

[beeskneesmommy]

I have heard that Duke Childrens is great in treating enchepalitis related to autoimmune disease (aka PANS).

 

Dedee

Before heading to Duke, I encourage you to PM me.