Dr. Anthony Infante in San Antonio?

[Cassi]

Has anyone seen Dr. Anthony Infante in San Antonio? If so, what are your thoughts? Does anyone have any other suggestions on Texas Drs?

[texascatholic]

Yes, we saw Dr. Infante once. He is just starting to treat PANDAS and is in communication with Dr. Cunningham. We go back to him next week. I will provide an update! Dr. Rao in Plano is nice as well.

 

God bless,

Holly

[SearchingMom]

I took ds11 to see Dr. Infante in mid-September, and I can vouch that he seems new to PANDAS. He said ds11 does not have PANDAS (despite my describing his strong similarities to kids described on this forum) because he didn't have high titers. I asked how many PANDAS kids he had diagnosed/treated and he said two (as of 09/16/2010). He was willing to write an order for the Cunningham test despite not thinking it was likely to be positive. He spent about an hour with us, but I was disappointed that he was most focused on what he could test vs. making a clinical diagnosis. I was hoping he might give us abx to see if they made a difference.

 

In the meantime, we have found ds11 is extremely sensitive to food dyes/additives. Our food diary shows that his rages directly correlate with ingestion of these toxins. So I have been giving him broad-spectrum enzymes and 5-HTP supplements to help balance his serotonin. We found inositol exacerbates rages, but straight 5-HTP and magnesium together work well so far, if we can keep him taking them regularly. Alas, he still hasn't taken his final dose today....

 

Hope this info re: Dr. I helps.

 

SearchingMom

[GraceUnderPressure]

Dr. Infante was gracious enough to reply to an email inquiry of mine a few months ago. He sounds very kind & is clearly eager to help, but is definitely new to this. He is currently trying to work up a protocol for PANDAS patients at his hospital.

 

I don't know enough about this stuff to know what is standard, but I was put off that he spoke of SSRI's as being the 1st line of treatment & defended it as being the standard treatment per Drs. Cunningham & Swedo.

 

I was also dismayed that he spoke of getting video footage at the clinic - my ds18 put me thru all kinds of heck trying to get video clips of his "habits" to show to the neurologist -- and that was at home! It was mind-boggling how he could stop in the middle of all those tics if he saw or heard the camera! And they think he is going to perform for them/total strangers at a clinic?

 

I thanked the dr for the generosity of his time, tried as politely as I could to express my reservations about the protocol, and called a dr in Dallas instead. Hopefully, Dr Infante has reconsidered those things.

 

My impression is that if you have a child with the classic PANDAS presentation - particularly positive strep titers & sx's - he will probably be of help. If yours is not a textbook case, you will want to find someone who has a lot more experience - esp if your child may be a PITANDS rather than a PANDAS kid.

 

~Grace

Edited November 1, 2010 by GraceUnderPressure

[KaraM]

Searching Mom,

 

Did Dr. Infante indicate whether, if the Cunningham test results cam back high, he would re-consider his position in spite of the low strep titers?

 

Thanks,

Kara

[texascatholic]

We don't have high strep titres either. Dr. Infante was "unsure" about our daughter having PANDAS/PITANDS. When I told him about the Cunningham results, he listened a bit more. I am bringing our results with us when we go see him this Thursday. He respects Dr. Cunningham. I'm not sure if he is aware of PITANDS very much.

[SearchingMom]

Dear Kara,

 

Dr. Infante said he wanted to add the results of the Cunningham test to ds11's file, which seemed to me that he didn't expect them to come back positive. He didn't mention if he would change his diagnosis if the results did come back positive, and I didn't press that issue since he already decided ds11 didn’t have PANDAS. But to be fair it's possible he might reconsider despite being mostly focused on tests and textbook presentation of PANDAS.

 

Thanks for your post, Grace. I have not pursued getting the Cunningham test done for ds11 because I got very discouraged after our visit to SA. Now reading about your experience with him, I’m wondering if I should have the test done anyway and try to find a more experienced doctor?

 

And I’m concerned to hear that Dr. Infante talked about SSRIs. I thought the primary treatment for PANDAS is abx, but I’m still new at this myself.

 

SearchingMom

[chodnett]

I called to schedule an appointment with Dr.I in San Antonio and was turned off right at the point when we got to his treatment. We have high titers, we have MC test, we have had and are on antibiotics, and we have done 2IVIG. His assistant said Oh I thought only one IVIG is treatment. Then all my hopes of a closer Dr. went out the door. We did not go any further with him.

[GraceUnderPressure]

SearchingMom,

 

I empathize with your hesitation - we wrestled with it for a while, too. My ds18 finally got so bad that DH & I decided we had to do whatever we could to help him. You will naturally want to weigh it against your own personal situation, & the Cunningham tests are not cheap, but if you can afford it, IMO are probably worth it even if they come out negative. At least you will know whether or not that particular avenue is one you should be travelling.

 

We went ahead & decided to do the full Igenex panel as well, but our ds18 is ticcing so badly that he is barely functioning anymore so we're definitely up against a wall here.

 

Anyway, you might be happier seeing Dr. Rao in Dallas. He's not one of the major PANDAS drs, but at least he has a lot more experience with these kids. He is treating my son as a patient rather than a protocol, if you KWIM.

 

~Grace

Edited November 2, 2010 by GraceUnderPressure

[texascatholic]

Hi All...

 

Just got back from our appointment with Dr. Infante. He wants to do IVIG with her based

on the Cunningham test results (she does not have high strep titres). It was a very encouraging visit.

So my advice is that if you go to see him, have Cunningham results to show!