Can you guys please chime in on Dr. Demio?

[feedjke]

I am considering seeing Dr. Demio.

 

My son usually presents with symptoms behavioral and tics, we test for strep comes back positive on gene prob treat with antibiotic and 3 days later tics gone, behavior better. This time daughter had strep son was negative but still had behavior and tics, tried low dose antibiotic and did nothing. Still ticking approx 2 month later. Got PET scan normal. ASO 200, Anti-dnase 148. Neurologist wants to use resperdal. Tics are there but mild all movements, no ongoing vocal. possible throat clearing but only does it for a few minutes then I dont hear it for another day or so??? This just doesnt seem like the right Rx to me. I dont want to just treat the symptoms, I want to get to the bottom of this! Im considering Dr. Demio, I know he will not jump to give Rx, he will look for the root of the problem. But I'm also worried he wont perscribe antibiotics/ steroids or whatever if need be?

 

please let me know any experiences or opinions.

 

Anyone have any luck negotiating fees, its like 600.00 just to walk in the door.

[feedjke]

anyone?

 

I know hes more an autism but I was told he treats PANDAS.

[thereishope]

Sorry, I don't know of him, but the name sounds familiar. Did someone on this forum refer him to you? As for negotiating fees, have you called the office and asked if they offer payment plans? You may be suprised. Also, someone once told me their doc (not a DAN) gave them a discount if they paid with cash.

 

Can you claim DAN visits on your taxes as a medical fee? I would think so.

[feedjke]

Dr. Demio is a well known and well respected DAN Dr., that might be where you have heard the name. I saw him before for my now 20 month old at a vaccine consult when she was about 4 mo. She had her first round of vaccines and we never did another after our consultation. It was shocking how wonderful and heartfelt he was. He held my little girl not because he needed to, just because. He showed us things that our ped had missed and when I later mentioned them he was like oh yeah I see now. Very detailed and I think he took well over an hour with us. He was running behind and had patients waiting but never hurried or rushed us out. I know he believes in PANDAS I just dont know what treatments he leans toward. I like the Biomedical approach, I just dont know how that works for PANDAS.

[thereishope]

Well, I can say I called a DAN (well the only DAN) in my area one to see what she had to say. She personally returned my call, told me that she would give prophylactic antibiotics, oral IVIG (which someone on this forum said wasn't that effective), and if needed, send him somewhere else for reg IVIG. It sounded like she would guides with vitamins and such as well.

 

For a few reasons, one including money, we did not make an appt.

[michele]

We saw him and he does know and treats PANDAS. He will try to treat the underlying problem which he will find on lots of labwork. First off he will want you to do the GF diet CF diet. He had us on many supplements, so many that I was confused. He was leading us up to chelation and Hbot. He wanted us on Actos which is used with Autism spectrum kids. Also using Nystatin or a yeast remover. He does think PANDAS is on the spectrum. He does know alot and is a spokesperson for the DAN! movement. Look up Autism 1 and Autism 1 radio, he speaks on the show. He may give you antibiotics if he thinks it is PANDAS. Dr. Bock is a DAN! and he suggests antibiotics. He had us on specialized amino acids from Lee Silsby and alot of special order supplements he can get you. I can give you more information if you'd like? He was very expensive and did not take insurance. I had to pay out of pocket. Plus the labs were really expensive and he tested for alot of different things. He is very nice and a good listener. He said he could help us. He spent alot of time going over the labs. I quit maybe a bit too soon because of expense and his ideas were so different them his mainstream Dr's. They seemed to talk me out of his protocals since they didn't find it research driven. I am sure he has helped alot of spectrum kids though. He is also moderator to a DAN! group on Yahoo. Mustang Carol has seen him talk and really respects him also. She really knows the DAN! techniques. You can PM her or me. Where do you live? I don't think he negotiates fees. I think I had to pay the day of service.

 

 

Michele

 

Sorry, I don't know of him, but the name sounds familiar. Did someone on this forum refer him to you? As for negotiating fees, have you called the office and asked if they offer payment plans? You may be suprised. Also, someone once told me their doc (not a DAN) gave them a discount if they paid with cash.

 

Can you claim DAN visits on your taxes as a medical fee? I would think so.

Well, I can say I called a DAN (well the only DAN) in my area one to see what she had to say. She personally returned my call, told me that she would give prophylactic antibiotics, oral IVIG (which someone on this forum said wasn't that effective), and if needed, send him somewhere else for reg IVIG. It sounded like she would guides with vitamins and such as well.

 

For a few reasons, one including money, we did not make an appt.