From Dr. Trifiletti

[ajcire]

Phew, a clip that was easy to follow and clear for the average person to be able to process. I was happy to see the mention of a few other symptoms besides just ocd and tics but would love to see a few more (lol, I get that is not possible in 30-60 seconds that you were given). I would love to see the other things like a change in behavior, argumentative, sometimes frequent urination, sometime starting with simple tics like eye blinks or throat clearing not just the extreme in lauren and sammy.

 

But I was so happy to see a clip that I can show people to try to explain. The Saving Sammy segments just were so far from what is going on with my son that it just made me look crazy to suggest I thought my son had this. While my son is not at all like Lauren either this certainly led to the idea that it won't just present with a severe tic or severe ocd.

[T_Mom]

Great clip Dr. Trifiletti -- Thank you for being willing to represent Pandas on national t.v.

 

As far as our family, I figure that "all we know is what we know"...in our case that is our family experience with our D.

Certainly our experience represents that there ARE children with "Ps" (whatever that may end up meaning) who are treatable, for you Dr T. and all the other doctors willing to go outside the box in order to "do no harm" Thank you again--

[ratlenhum]

I'll have to TiVo this. We've been battling PANDAS unsuccessfully for 2 years now.

 

Dr. Trifiletti, any advice for a kid who didn't improve with IM Bicillin, Zithromax, Omnicef or 16 IVIG treatments?

 

Hey Ratlenhun, that's a lot of IVIG's! Worried Dad's son had several IVIG's, high dose Augmentin is what finally eventually made a big difference. Did your child have a good workup with an immunologist? (I don't remember much about your situation except that your child is autistic!) The other autistic kids on this forum (Peglem's, Melanie's) were found to have immune defiencies. Also, did you ever send blood work into Dr. Cunningham and what were the results? What dose of Azith. did you use and for how long and how much does your child weigh? What dose of IVIG did your child get? Was there any improvement at all with IVIG? Or was there improvement that just wasn't sustained? Have you noticed any improvement with Advil? How "sure" is the PANDAS diagnosis? How old is your child and what symptoms are your dealing with?

 

 

 

My son started with clear cut symptoms that hit almost over night 6 weeks after an untreated strep infection. Untreated because he was misdiagnosed. I don't know who doctor Cunningham is. We ran a PANDAS profile through Neuroscience. They no longer have this test but it tests for strep markers and antibrain antibodies. My son's numbers were all 400% elevated. We ran all sorts of blood work through Dr. Sudhir Gupta at the Immunology Department at UC Irivine and flew from NY to CA to see him. He ran a full immune panel and all sorts of tests on him.

 

My son had 4 months of IM Bicillin and his numbers on his PANDAS profile got higher. We switched to Zithro and if I remember correctly he was taking 500 mg 2x a day for about 6 weeks. The doctor switched him to Omnicef for a while than back to zithro.

 

We started IVIG at 15g of Privigen and used that for 6 months. We then swtiched to 15g of Gamunex for 6 months then we increased his dose (due to weight gain) to 20g of Gamunex. We saw some improvements around the 6,7,8 month mark, mostly a decrease in his vocal tics but nothing overwhelming. We stopped after 4 IV's of 20g because we could no longer afford it. It started out at $2200 a month and was $2900 a month by the time we stopped. We just ran out of ways to fund it and we weren't seeing improvements that would make it worth continuing.

 

My son is 8 years old. His handwriting totally sucks compared to 2 years ago and he struggles with it. His vocal tics are the biggest issue. It's what is keeping him in the autism program at school right now. He could handle being in a self contained class but because his vocal tics are disruptive he stays in the autism class. He also does this strange movement with his legs he only does when he is laying down, or sitting up with his legs out straight. His legs move almost as if he is riding a bike. he will do this in bed up until the second he falls asleep. If he is laying on the couch watching TV, he will do this all night.

 

The OCD comes and goes and right now it's not a big issue and is the least of my worries with him.

[EAMom]

I'll have to TiVo this. We've been battling PANDAS unsuccessfully for 2 years now.

 

Dr. Trifiletti, any advice for a kid who didn't improve with IM Bicillin, Zithromax, Omnicef or 16 IVIG treatments?

 

Hey Ratlenhun, that's a lot of IVIG's! Worried Dad's son had several IVIG's, high dose Augmentin is what finally eventually made a big difference. Did your child have a good workup with an immunologist? (I don't remember much about your situation except that your child is autistic!) The other autistic kids on this forum (Peglem's, Melanie's) were found to have immune defiencies. Also, did you ever send blood work into Dr. Cunningham and what were the results? What dose of Azith. did you use and for how long and how much does your child weigh? What dose of IVIG did your child get? Was there any improvement at all with IVIG? Or was there improvement that just wasn't sustained? Have you noticed any improvement with Advil? How "sure" is the PANDAS diagnosis? How old is your child and what symptoms are your dealing with?

 

 

 

My son started with clear cut symptoms that hit almost over night 6 weeks after an untreated strep infection. Untreated because he was misdiagnosed. I don't know who doctor Cunningham is. We ran a PANDAS profile through Neuroscience. They no longer have this test but it tests for strep markers and antibrain antibodies. My son's numbers were all 400% elevated. We ran all sorts of blood work through Dr. Sudhir Gupta at the Immunology Department at UC Irivine and flew from NY to CA to see him. He ran a full immune panel and all sorts of tests on him.

 

My son had 4 months of IM Bicillin and his numbers on his PANDAS profile got higher. We switched to Zithro and if I remember correctly he was taking 500 mg 2x a day for about 6 weeks. The doctor switched him to Omnicef for a while than back to zithro.

 

We started IVIG at 15g of Privigen and used that for 6 months. We then swtiched to 15g of Gamunex for 6 months then we increased his dose (due to weight gain) to 20g of Gamunex. We saw some improvements around the 6,7,8 month mark, mostly a decrease in his vocal tics but nothing overwhelming. We stopped after 4 IV's of 20g because we could no longer afford it. It started out at $2200 a month and was $2900 a month by the time we stopped. We just ran out of ways to fund it and we weren't seeing improvements that would make it worth continuing.

 

My son is 8 years old. His handwriting totally sucks compared to 2 years ago and he struggles with it. His vocal tics are the biggest issue. It's what is keeping him in the autism program at school right now. He could handle being in a self contained class but because his vocal tics are disruptive he stays in the autism class. He also does this strange movement with his legs he only does when he is laying down, or sitting up with his legs out straight. His legs move almost as if he is riding a bike. he will do this in bed up until the second he falls asleep. If he is laying on the couch watching TV, he will do this all night.

 

The OCD comes and goes and right now it's not a big issue and is the least of my worries with him.

 

How much does your son weigh?

 

re IVIG: my dd (55 pounds) got 2gm/kg Gamunex (this is Swedo's dose, Dr. K. usually uses a slightly lower dose, 1.5gm/kg) over 2 days. So, my dd got 50 gm (25gm each day x2). It sounds like your son was getting a much lower dose (but more infusions). I don't think there's been any research on IVIG/pandas kids doing low dose infusions so I don't know if these are as effective as doing the higher dose. All speculation on my part...but I suspect the higher dose is going to be more successful than many smaller infussions.

 

That is ironic that you flew from NY to S. Cal. The "popular" PANDAS docs on this forum are all on the East Coast....Dr. Trifiletti, Dr. Latimer, Dr. Bouboulis (an immunologist in CT). Dr. K. is in Chicago.

 

I think Dr. K. said at one point that PEX (possibly followed by IVIG) may be better for tics (vs. OCD which responds well to IVIG).

 

I've heard of the Neuroscience panel but don't really know much about it.

 

If you look through old posts there is a lot on the Cunningham tests. Here's an old one that explains it: http://www.latitudes.org/forums/index.php?...gham+blood+test

 

This is from the FAQ thread:

Tests: Antineuronal Antibodies Tests

Q: What are Cunningham tests?

A: Kirvan and Cunningham have been studying specific antibodies to GABHS. Cunningham has an open trial where she is recruiting patients to investigate the relationship between these antibodies and PANDAS symptoms. Many parents on this forum have participated in the study. These studies are still research studies and are not yet diagnostic for PANDAS -- but we're all hopeful they might be soon.

 

Have you checked family members for strep (carriers)?

 

IMO an appointment with Dr. T. would be a great next step...he's a pediatric neurologist, knows PANDAS, and is nearby.

 

BTW, have you considered high dose Augmentin XR and/or steroids?

 

Re your old Azith dose,

if I remember correctly he was taking 500 mg 2x a day for about 6 weeks

....1000mg/day is a HUGE dose. My dd is on 250mg/day Azith. Some of the bigger/older kids may be on 500mg/day (at least short term). I haven't heard of anyone doing 1000mg/day.

[colleenrn]

Dr. Trifiletti,

 

I just wanted to thank you so much for all the work you do with PANDAS and for being willing to help so many families. I have four children and three of them have PANDAS. We think the youngest (age 3) does also, so it is so encouraging, after eight years of hearing physician after physician say, "PANDAS, what is that" or "I don't believe it exists" or "I can't treat it b/c it is controversial", to hear you on national TV asserting that PANDAS is real!

 

Thank you so much!

 

Colleen

[poetmom]

I got a good chuckle out of the folks at my son's school, who were concerned and interested in his PANDAS diagnosis when he started Kindergarten this year. They did what research they could, listened to my concerns, helped set up a 504 Plan for my ds, and have been very supportive.

AND THEN, they saw this show and his principal, vice principal, and school nurse have all stopped me to excitedly ask me if I've seen it.

 

Despite their previous concern and actions, it is VERY OBVIOUS they had their silent doubts but all of a sudden his diagnosis has credibility.

I mean, it was on the TODAY show so it must be real!! HA

 

Whatever it takes, I guess...so thanks!

 

Robin