First Post

[Kaki]

Welcome to the forum. I started intensely researching pandas about 9 months ago, and believe it or not even in that short time the docs have come a long way and our knowledge has come a long way. This seems to be a very tight little community (docs, parents, researchers, etc.) and they/we are learning so fast.

 

Do you work with a DAN doctor for your 12 yo?

 

Stephanie

 

 

 

We don't have a DAN doctor. We have seen Dr. Murphy at All Children's, we are seeing a child psych, and we're waiting for CBT appointment and Immunology appt.

 

Let me know if you are ever interested in trying a DAN doctor. We use Bradstreet's office in Melbourne and they have been fantastic in helping us to control pandas. they also work very well with the issues of yeast and bacteria of the gut which can become a problem with many autistic kids when the child is on long term antibiotic use. The mainstream medicine docs are not aware of these issues and can really dig the child into a hole sometimes. My 5 yo developed yeast and a klebsiella (bacteria) infection after several months of zithromax for pandas. The klebsiella really did us in - violent rages in a child who was previously not aggressive. Worse than any pandas symptoms we have ever seen (had to pull him from school for 3 months while we got on top of the bacteria)! If it had not been for our DAN doctor, I think we would have just increased the antibiotics thinking that his pandas was flaring and we would have been in a world of pain!!

 

Either way, Dr. Murphy is great and I'm so glad that you are staying on top of pandas for your kids. they will greatly benefit from your diligence!

 

Stephanie

 

Oh yes, I've heard of Bradstreet. Only good things. I even called once, but never made an appointment. Is there still an incredibly long wait to see him?

[Stephanie2]

Actually, back when I was making our initial appt, Scott Smith, the PA in the group, did not have a long wait (less than a month I believe). I took the appt with him and I couldn't be happier. He has two boys with ASD and also PANDAS. He is SO good at what he does and very accessible. From the autism message boards, I get the feeling that many ppl actually prefer Scott b/c he is so personable...

 

If you talk to him, tell him I sent you :-) He reads this forum...

 

Stephanie

 

Welcome to the forum. I started intensely researching pandas about 9 months ago, and believe it or not even in that short time the docs have come a long way and our knowledge has come a long way. This seems to be a very tight little community (docs, parents, researchers, etc.) and they/we are learning so fast.

 

Do you work with a DAN doctor for your 12 yo?

 

Stephanie

 

 

 

We don't have a DAN doctor. We have seen Dr. Murphy at All Children's, we are seeing a child psych, and we're waiting for CBT appointment and Immunology appt.

 

Let me know if you are ever interested in trying a DAN doctor. We use Bradstreet's office in Melbourne and they have been fantastic in helping us to control pandas. they also work very well with the issues of yeast and bacteria of the gut which can become a problem with many autistic kids when the child is on long term antibiotic use. The mainstream medicine docs are not aware of these issues and can really dig the child into a hole sometimes. My 5 yo developed yeast and a klebsiella (bacteria) infection after several months of zithromax for pandas. The klebsiella really did us in - violent rages in a child who was previously not aggressive. Worse than any pandas symptoms we have ever seen (had to pull him from school for 3 months while we got on top of the bacteria)! If it had not been for our DAN doctor, I think we would have just increased the antibiotics thinking that his pandas was flaring and we would have been in a world of pain!!

 

Either way, Dr. Murphy is great and I'm so glad that you are staying on top of pandas for your kids. they will greatly benefit from your diligence!

 

Stephanie

 

Oh yes, I've heard of Bradstreet. Only good things. I even called once, but never made an appointment. Is there still an incredibly long wait to see him?

[airial95]

Carol,

 

Where in Florida are you? I'm in the Tampa area, and our 2 1/2 yr old has pandas, primarily with OCD and ADHD. Our pediatrician, while not an "expert" has treated several pandas cases and has had our son on azith foxing on almost 4 mos now. He did that even though the rapid strep test came back negative - based primarily on the behavior. He'll be the first to admit that there's not enough known about pandas but he's a believer and understands that long term abx are par for the course.

[T_Mom]

Rule out strep in everyone in the family! Start with rapids, if they are neg, make sure they send out a culture. If that is neg, then get titers checked. Strep can be in so many places.

 

 

--and remember that titers may not show strep that is present.

[Kaki]

When she was on antibiotics before, it was prescribed by her ped to treat the strep, not the PANDAS. She ended up taking it for about 6 wks before her symptoms were gone. The psych clinic that dx her with PANDAS refered her for CBT & prescribed Zoloft. Neither of which she did at the time.

 

We have never had a doctor that would give her antibiotics for the OCD. She is seeing a psych doc now. But, she doesn't buy into the PANDAS and wants Lauren to try Serequel now.

Carol --

 

Our DS13 was diagnosed with anxiety and OCD for years before we found PANDAS, so we have been through what I will unaffectionately call "the psych wringer." Our psych didn't buy into PANDAS, either, until I continually buried him in research, papers, studies, books, etc., as well as a thoroughly documented, long-term view of DS's personal history. After almost 5 years, he finally came on board about a month ago!

 

Anyway, is your DD taking Zoloft now? Our DS is taking Luvox, though we aren't convinced it is doing anything to help him. Basically, when we began PANDAS treatment (abx) about 6 months ago, we didn't want to change too many things at once, so we left the Luvox in place. One thing to watch with PANDAS, though: SSRI's can be more activating for PANDAS kids than the non-PANDAS population, so if you're going to use them, it needs to be done very slowly, very carefully, and at a very low dose to begin with. There is a paper on this subject by Dr. Tanya Murphy; here's a link.

 

Dr Tanya Murphy - SSRIs and PANDAS

 

Secondly, our experience with Seroquel and some other "big hammer" drugs (antipsychotics, actually) has been pretty dismal, so if that is any point of reference, I would steer away from those. The Seroquel just made DS sonambulent; it didn't help him confront or deal with his anxiety at all. So it was still there when the drug wore off, sometimes even more intense than before.

 

The SSRIs are off the table. My DD had a bad experience with them. The antipsychotics haven't worked they way they are "supposed' either. I hoping to find a doctor that understands and treats for PANDAS. I don't think I have the energy to try to educate our doctors.