mama2alex

Don't forget about the steroid burst you just finished. I'd watch him for the next couple of weeks (without making any other medication changes), and if you see significant improvement, that's a good indicator that you are dealing with PANDAS. We saw minimal improvement on antibiotics, but lots of gains with prednisone. I agree the Cunningham test could also be a good indicator.

Great article! Thanks for posting. I will forward this to a few people.

I had to specifically request a hard copy from Kathy. Our results were originally just emailed to us, but I needed something more official looking.

The website is www.k12.com. A woman I chat with occasionally at our local toy store said her daughter is using this program in S. CA and loves it. Not sure if they are doing the public or private option. Public (free) is available in about 1/2 the states at this point. I am considering this if our new private school doesn't work out this fall.

I'm sorry you are having such a rough time. We've done the 5 day course of prednisone twice now, and our son gets worse while he's on the steroids. But once he's finished with them, we see great improvements (80 to 90%). So watch for a couple more weeks - it may do some good yet.

Hi, Thanks for posting this! Very encouraging!! Go to www.pandasnetwork.org and send an email to Diana Polman (it's her site). She can probably connect you with some parents.

Breastfed exclusively for 9 months, then combined that with some foruma for 4 more months.

I don't really understand the reasoning behind taking them off antibiotics after a year. Our friend had Rheumatic Fever when he was 3 and was given very high doses of antibiotics, followed by continuous antibiotics for the remainder of his childhood. Why wouldn't it be the same with PANDAS? I respect Dr. K tremendously, but I have to say this doesn't make sense to me.

I've been thinking a lot about this lately, because my son is having a 2nd high-dose IVIG next week. From talking to doctors and other parents, I'm becoming convinced that "turning back the pages" is actually just the result of underlying infections - whether strep, Lyme, viruses, or other things - dying off. It makes sense that many of our kids' bodies have not been able to fully rid themselves of the infections that are triggering the autoimmune response, and when a flood of healthy antibodies are introduced suddenly, there is a massive die-off that the body then has to deal with. With Lyme Disease, this is a well-recognized response called a Herxheimer reaction, where symptoms worsen before they get better due to die-off. I spoke with our DAN doctor about this yesterday, and he agreed. He's giving us a number of "tools" to deal with it this time around, because last time it was awful (we weren't actively working with him then). As you describe, we saw things we hadn't seen in a long time (or ever) and they were often worse than before. It was extremely stressful for everyone, and I wondered later if he would have made more progress in healing if we had given his body this support after the first IVIG. So here's what our doc recommended to mop up the dead bugs and help my son's body deal with it all: 1. Activated charcoal 2. Increase Bentonite Clay to 6 Tbsp/day (currently taking 1 Tbsp/day) 3. Supplement to support adrenals 4. Supplement to support thyroid 5. Homeopathic drops which help with detoxing 6. LOTS of water every day for at least 8 weeks post-IVIG (about 64 oz if possible) 7. Excercise every day 8. Aqua-chi foot baths alternated with epsom salts baths I hope this is helpful, and I hope your son is feeling better very soon!

OK, just finished watching the segment on Ryan. I'm assuming that's your son. I thought you did a fantastic job in the interview! Good for you for finding something that gives him some relief while you work through healing the underlying cause. You are very brave, both for helping him and for talking about it on tv! I was disappointed they didn't do a better job of describing his illness, but frankly I've come to expect this from 20/20. Were you happy with the final product?

OMG! I'm watching now, and I haven't even gotten to the segment on medical marijuana. I'm watching the part about the cheerleader who got the flu shot and developed a severe movement disorder. It's absurd, 20/20 is implying that it's all in her head! The flu shot didn't hurt her, of course not - she's nuts! It's awful. And on top of that, they're persecuting Dr. Buttar, who obviously did provide her with some degree of healing, although 20/20 is twisting it to make it seem like he's a total quack for using - GASP - CHELATION! I had mercury poisoning, so I know from personal experience that it works. Apologies for the rant, but this is so upsetting. The poor girl!

I'm so happy!! I just told my son, and I think he's old enough that news like this lifts his spirits - he get's it to some degree. Thanks to Vickie and P.Mom and anyone else who spent so much time and energy on this over the last few months! YOU ROCK!!!

Your letter moved me to tears. You're a better writer than many adults at this point! I'm PMing you with my email address - I can provide some edits if you send me a Word doc. Thank you!!

Yes, he had us do the 5 day course of pred and we had good improvement from that. He also checked my son's circulating immune complexes. We had our first IVIG last December and my son was 75% better for a couple of months. Then he got a mystery illness in early May, lost most of his gains and stopped going to school. We are now working with a DAN doctor in our area to address any and all chronic/underlying/colonized infections. Hopefully, these two approaches together will give us a lasting recovery. I think we scheduled about 2 1/2 weeks out, but Dr. K was at the D.C. conferences so that may have pushed out our date. Our IVIG starts one week from today. Hope the steroid burst goes well for you!

When are you going? We will be out there next Wed - Sat. I struggled with the same decision. In the end we booked flexible tickets on Southwest, with a scheduled return of Saturday afternoon (IVIG is also Thurs and Fri). So if he's doing well Saturday morning, we'll plan to go as scheduled. If he's feeling bad, we have the option of postponing the return flight.

FANTASTIC NEWS!! I'm so happy for you!

I just received an email stating that, in his presentation at the OCF Conference, Dr. K said "antibiotics do not work for PANDAS, and that the only solution is IVIG." This doesn't match my experience with him, and I'm wondering if he really said this, or is this just gossip? He has never advised us to stop antibiotics, and even had us do a trial of a different antibiotic for a few weeks, so I was shocked to read this. If anyone was there, can you clear this up?

Thank you Vickie! I tried to search the TS forum, but had no luck.

Thanks! I'll do that. This could definitely be one piece of the puzzle for us.

I tried to do a search on this topic (on this forum), but didn't get anything. Does anyone have a good website they can recommend to learn more about red dye? We suspect our ds has an allergy, but not sure.

I am just starting to look into this, as we recently started to suspect that my ds is sensitive to red dye. I talked to Walgreen's and they said Sandoz makes a white tablet in 500 mg. They can't get it for me, so I now have to find a pharmacy that works with Sandoz. If you need a liquid, I'd just ask your pharmacist.

I've been voting for them every day and will see if I can get a few others to vote.

Dr. K had our son's circulating immune complexes tested before he would recommend a second high-dose IVIG. I don't fully understand it, but I think if they are elevated, IVIG is counter-indicated, at least until they are normal again.

We were told recently by a doctor at Stanford that a skin test is more accurate than a blood test to determine allergies. You may be able to ask the allergist to test urine, saliva, etc in addition to hair - not sure. Also, do you have anyone who could babysit the dog for a few weeks to a month while you clean out your house and watch for improvement? Another consideration is an infectious trigger. Was he sick around the time the tics started? If so, you might want to check out the PANDAS/PITAND forum on this site.

I'm so sorry you are going through this. It does sound like it could be either PANDAS or Lyme, but you're going to need real experts to diagnose. I'm not sure where you live, but here's a link to a list of doctors (by state) who've been recommended by folks on this board. If you are in Northern CA, let me know and I can give you extra help. http://www.latitudes.org/forums/index.php?showtopic=6428 I would also find a Lyme-literate doctor to "rule out" Lyme disease. No doctor who just summarily dismisses Lyme is actually qualified to do so - if they really knew anything about Lyme they would have done some testing. How did they know the species of tick that bit your son, and how did they conclude that species doesn't carry Lyme or co-infections? Please do find a qualified PANDAS doc and a Lyme-literate doctor to really look into these diagnoses. Best of luck.