pandas2boys

Has anyone on this board used Dr Agustin Legido of St Christophers hospital in Philadelphia PA? If you have, please either share your experience here in a reply post, or send it to me via PM. I'd like to hear your general experience with him, and specifically if he was willing to do IVIG for your child and if indeed you had it done with him. Thanks!

Try this: http://www.voiceamerica.com/voiceamerica/v....aspx?aid=43934 Link worked

Try this: http://www.voiceamerica.com/voiceamerica/v....aspx?aid=43934

One approach that at time helps is when I remind him how "I totally went out of my way to get (or do) such and such for you and the least you could do is quiet down and cooperate with me".

"Hyper" is putting it mildly. Me and my wife almost have to were earplugs to keep our sanity from all the shouting and yelling and havoc that our pandas kids create for us daily. I mean, they fight over every stupid little thing. If one sibling got an extra jelly bean, my pandas son is on the floor kicking and screaming.

I haven't seen him, but did have a phone consult with him. He really comes across as so understanding your situation and he's really on the ball. He asks very specific questions, and he's very decisive and opinionated. He'll tell you exactly what he wants you to do. Doesn't accept credit cards, so be prepared to lay out at least $350 cash or check. She's really nice, but very busy and overwhelmed. You have to be very persistant in getting her to respond to you. Just met him. He's really nice and knows his stuff. He just recently opened his office, and is not set up yet to administer IVIG, but he's open to it as a method of treatment.

Try speaking to Kathy at Dr Cunningham's office. She is really nice and might be able to fill you in on the results.

I heard that Dr T will also be appearing on the show

This is major. Really huge. Its going to bring our community loads of needed attention.

I did a phone consult about 4 months ago with Dr K and was very impressed with him. We would like to consult with him again, but flying out to Chicago is too costly at this time, and a phone consult goes for about $325 - $350. I was wondering, if there's enough parents out here in the Northeast (NJ, NY, PA, MD etc) who would be interesed in seeing him but can't afford to fly out to Chicago, maybe we can fly him here? If there's enough parents who are interested, maybe we can fly him in and set up 6 - 10 appointments in one day? I haven't asked him yet, but was first wondering if there's any interest from our end?

I asked Dr Latimer -"What does Dr Cunningham's test mean to you?" Her response - "It means alot to me".

I'll just add that she does look out for various physical symptoms (such as the way the child sits i.e. upright or hunched over, and she has the child outstretch their arms to detect chorean movement etc) which she couldn't check via a phone consult.

It depends. If all you want is a consult with a knowledgeable PANDAS doctor then do it with Dr K. Its $325, but worth every penny (check out his website www.webpediatrics.com ). If you intend on doing IVIG or Plasma exchange and would like to have it covered by insurance, then you would probably need to actually see the doctor in person. I doubt insurance would cover you based on a phone consult with a Doctor. If thats the case, choose whichever doctor is closer to you or cheaper to travel to etc

Dr Latimer asks if there are pets at home. If yes, she suggests that it should be cultured. Is it because she believes that a pet can be a strep carrier and cause haywire among us?

Thanks for the info! Do you know what his PANDAS protocol is?

It seems like many of us have just received results from Dr Cunningham's office with numbers on those four things. Has anyone been in touch with them to find out what all those numbers mean?

Has anyone been in touch with Dr Cunningam's office as to how to understand what these numbers mean?

From Dr K's website - (6) Significant elevation of AntiDNase B titer is common, but not necessarily present in every case. Negative AntiDNase B titer does not absolutely exclude the diagnosis of PANDAS.

Michele, how about emailing Dr K and writing him everything thats going on? I don't think he charges for responses via email, only for phone consults.

Have you consulted with Dr K?

You should definitely try asking her. Once she saw your child, there shouldn't be any reason why she couldn't prescribe it.

We did the phone consult with DR K ($325), and we hung up the phone with the exact same impression that pixiesmommy did. The only problem is the distance, we're from NJ. It would be very difficult to find a local Dr who would be willing to give us IVIG based on Dr K's say so. Only after that phone consult did we hear about Dr Latimer who is only a 3 hour drive and we have an appointment scheduled with her. But Dr K still gladly responds to our questions via email.

We also found it interesting that in his bad times, say like if god forbid someone shut the CD player, oh would he scream, yet, he still had a pretty good social life and friends. His teachers actually used to tell me that he was more on the quite end in school, but the minute he came home, BOOM!

For years, my son used to talk very loud, up to the point that he was almost always shouting. Everytime he got into a discusion or argument with a sibling, the walls were shaking and it drove us nuts. He had plenty of tantrums too, and anytime someone took something from him or he didn't get what he wanted, he would lay on the floor facedown kicking and screaming. This went on from about age 3 -4 until age 6 1/2. We had no clue what PANDAS was and never heard of it. We tested his hearing which was fine. Then he developed the rolling eye tics, which our local pediatrician advised us to "just ignore it", and then after a few weeks, he starting the mouth tics - grimacing his jews etc We finaly got a break when we were referred to try a doctor who "dealt with similiar issues", who ultimately informed us about PANDAS. His results on the ASO were positive. We ended up keeping him on Zithromax for almost two years. To what I remember, we didn't see an instant relief on Zithromax, it did take some time, maybe 3 - 6 weeks until he started to become normal again. After two years, we finaly weaned him off it, and he was stable for about 2 months until he caught a virus and then it was party time all over again. After our phone consult with Dr K, we tried the steroid burst - 30 mg of prednisone a day for 5 days, the first day was paradise. Our son was so calm and relaxed, it was unbelievable. But on day 2, he broke out with bad sinus symptoms - coughing, nasal drip etc and for the next few days he was miserable. Once the sinus cleared up, we saw some relief, but not as much as we hoped for. We are scheduled to meet Dr Latimer at the end of this month, and we hope to move ahead by doing IVIG.

Did you try experimenting having him sit at the very front of the bus and/or sit near the monitor?