minimaxwell

Is there more than one group active? Not sure when the Hanover group is meeting again. Thanks!

This is so interesting and yet so confusing to me. Dr. K's protocol after lVlG is to supplement with Folic Acid among other things. I met this man last week who told me he is able to cure GERD or something to that effect. Kind of reminded me of Dr. T,way out thinking ,has proof,yet main stream docs don't want to hear it. I have not had time to dive into his website but will post it here. http://digestivehealthinstitute.org/

Just a thought... have you considered removing his sisters tonsils? My friends dd had severe PANDAS. Her ds never showed signs of strep. Her daughter couldn't stand to be in the same room with her son and it was tearing the family apart. She had blood work done on her son and his numbers were thru the roof. She immediatly scheduled a T&A for him. The dr. said his tonsils were so scarred from Strep. Glad to report he is no longer infecting his sister and they now even play together. This has not happened in well over a year. What dose of abx do you give him?

Prayers sent! Good luck.

Just wanted to mention that Dr. T told us to stay away from active yogurts as they have strep in them . Look for Streptococcus thermophilus or S. thermophilus.

Thanks! I just ordered it on Amazon for a great price.

So sorry you are dealing with all this. I agree with fightingmom and dcmom. My dd17 spent 7 weeks last year at OCDI with Dr. Jenike (before we knew she had PANDAS) I witnessed first hand the amazing work they do there. It is mostly ERP and CBT. I would try to find a therapist who does ERP. There were many,many germaphobes there that were able to regain control over this issue. Best of luck to you.

First time 2/2/12 was just after starting Augmentin and Biaxin. Dr's were not sure what caused it,..virus,infection or rare reaction to Biaxin which was started 2 days before. That visit was scary,ICU for 3 days and another 5 in the hospital Then on 3/15 we did lVlG with Dr. K. Last night we ended up back in the ER,pain started again . we caught it early this time. Don't think it is connected with PANDAS but was curios if anyone else has this issue. They are going to do an MRI with contrast to look at ducts and see if there is any narrowing. All looks normal on Ultrasound,no gallbladder issues. Also will be doing some genetic testing.

I would call and get an appt for when Dr Geller comes back from his medical leave. Is your Dr giving you enough abx now?

lol, thanks..losing sleep as I am spending too much time in what I call the "PANDAS vortex"

Yes, they both continue to see Dr. Greenblatt. I laso had a friend that was seeing Dr. Geller at Mass General. She left him after 3 rounds of abx and went to Dr. T. When her dd got better (tics started markedly improved) I urged her to go back to Dr. Geller so he could see the great work Dr. t had done. This helps to enlighten these doctors. I am now in the process of trying to get Dr. T to meet with Dr. Geller and Dr. Jenike to share his knowledge with them. Dr. Geller and Dr. Jenike will be having a PANDAS abx trial soon. BTW, can you tell me how you saw my dd's pic? Did I post it? Can't remember..

Forgot to mention, I was able to get both Dr.'s approved " In Network" because I said there were no PANDAS specialists in my area. (we live near Boston!) Still not sure how much of their fees I will get back,but at least I will get some $ back. Our insurance is United Health which recognizes PANDAS. I have heard that some times you have to be careful about mentioning PANDAS to certain insur. co. Perhaps others can weigh in??

We met with Dr. T (he also does phone consults) . Then we did phone consult with Dr. K. At that point we had decided we wanted to pursue lVlG and go to Chicago. Getting approved was a problem b/c we had time restraints. At the last min. we found out that Dr. K would not provide the "clinical notes" our insurance co. were requiring. The reason was he had not actually seen my daughter in person. Dr. T was our hero yet again and spent over 2 hour on the phone with my insurance the night before we were to fly to Chicago. He appealed to the Medical director and got it approved for us! (btw, he would not even accept $ for doing this for us) Dr. T will treat very aggressivly w/abx and IMO is the best Dr. to really evaluate the blood work. Dr. K seems to believe lVlG is the only answer. Best of luck, keep us updated.

Thanks for the concern over her weight. She has been blessed with at least some good genes. I was also very,very slim when I was young. It changed in my late 20's. Thru the years some of her psych meds gave her loss of appetite and some made her put on weight. She eats very well, if she did not have a fast metabolism she would be a little chunky. She eats a big bowl of ice cream every night. Can you tell I am a little envious. One thing we never had to worry about was bulimeia--her OCD is Vomit Phobia. She recently 2/12 had Acute Pancreatitis (3 days ICU and another 5 in Children's Hospital Boston.) This was after she just started taking Augmentin and Biaxin. We will never know what caused it..virus,infection of rare reaction to the Biaxin. She lost quite a bit of weight. She was not able to eat for several days and then had to conform to a strict low fat diet for 4 weeks. She was miserable and told us she had new respect for people who had to diet!! Just curious- did I post a pic of her? I can't recall. I have 2 friends that have been seeing Dr. Greenblatt for some time and like him very much.(he did miss the PANDAS) They both are now dx as PANDAS from Dr. T. One has classic OCD, the other has OCD/AN/Lyme. I would have to pay out of pocket to see him so I was hoping to find someone else. Do you live in MA too?

I stumbled on this post and first would like to say that I am sorry all of you are suffering. My daughter did a program at OCDI. While these were not her issues there were many there who had these thoughts. our insurance covered her stay for 7 weeks. http://www.mclean.harvard.edu/patient/adult/ocd.php

Hi, I am fairly new to this nightmare, dx PANS in late Jan. DD17 has been suffering for 11 years. Just finished lVlG 11 days ago. been searching the forum for Omega info for the last 1.5 hours. My head is spinning and figured someone may be able to weigh in. I think I figured out only Omega 3's but not sure how much to give. she is 100 lbs. no tics just OCD/Anxiety/Panic She is taking Folic Acid, Vit. E, Florstar and pearls ,Ester C as per Dr. K (just added Mega Red Omega 3 Krill) (we also throw in an occasional Cultrelle or some other probiotic) Also figured it might be worth visiting a DAN dr, we live in MA. Lyme was neg. on Quest Western Blot, no bands present. Trying to rule everything out. Thanks in advance, Tiffani

Hope you don't mind me posting here. My DD17 has recently been dx PANDAS. So confused about vit and supplements. thought perhaps a DAN Dr. could help us. The only one I found was Dr. Carol Englander (sp?) . I have read mixed reviews. Thanks, Tiffani

Getting confused about Omega's for PANDAS..Omega 3 is ok but Omega 6 is not?

Have you ever tried Charcoal? I am considering trying it to decrease herx..?? I know it has to be timed carefully.

Dr. Fulbrigge no longer sees PANDAS patients.

Just wanted to post an update. I was not able to test with Igenex before we flew out to Chicago. Dr. K and his staff were lovely. I had tons and tons of ?'s for him. What I have come to realize is that each of these PANDAS specialists have their own theories,and they are not always in agreement. When I reviewed my dd17 previous Lyme results everything was absent and negative. Not 1 positive band. I may redo Lyme in a few months. IMHO if you have a child with severe OCD and nothing seems to help,the blood work is interesting i.e. either high strep OR myco OR interesting IGG subtypes--please pursue PANDAS. Sudden onset or not. My dd17 tolerated lVlG well,worst being headaches. We have begun to see small shifts. Actually slept OUT of our room several nights. This has not happened in I can't remember when. We are also seeing some horrible "flipping of the pages". the worst was last night. Her Trich came back fast and furious during a huge panic attack. She reported this panic attack as the worst ever. she ended up pulling some hair out. this has not happened in well over a year. I was hoping this was behind us. She is so upset about it. I keep telling her this is her brain healing. Unfortunatly it happened when she was on a date she now no doubt will have anxiety about it happening again.

From what I remember Dr K saying it is HIS opinion that most TS is infection based and a very small percentage is true TS. His claims of success with lVlG was not for genetic TS. I have clearly offended you and for that I apologize. I certainly don't want to be pushing snake oil. I only hope to help another family so that they do not go thru the ###### of 11 years being misdiagnosed as we have . been.

These are not my statistical finding. I am just stating what was told to us by Dr. K. I do not think there is a one treatment/Dr. who can fix all. Dr. K told us his success rate is 80-85% with lVlG, again I have no data to back up his claim. but with those odds and the fact that nothing else has seemed to work we decided to go for the lVlG. I have met several families that have been thrilled with results their childrenhave had with Dr. K. That being said IMHO Dr. T understands the bloodwork more than anyone. Can you post any references or statistics to back up that rather broad statement? After all the years of seeing people come and go on these forums....one thing that really stands out is there is no such thing as one treatment (or doctor) fits all.

First of all I am so sorry you are going through this. My DD17 has been suffering for 11 years.The top doctors in Boston missed the PANS diagnoses. I would urge you to go see Dr. Trifiletti in NJ. My daughter was "tested " several time for PANDAS (strep) Turns out Mycoplasma is her trigger. BTW, we just had lVlG with Dr. K in Chicago. He believes almost all TS can benefit from lVlG and has had huge success.

Yes, Dr. K told me a story about a man,married 2 kids. Got PANDAS and drove to his parents house 2hours away to get in bed with his Mother!