JGsmom

I would call the office ahead of time and fax all blood work and tests you have had done. Then I would request him to order any blood work he ( Dr. wants BEFORE you go so that the results there and you will not waste precious time. This way he has more info in front of him for your first visit. We travel from RI, so I wanted to be efficient. Do know that his office staff is very nice, but overworked and you will have to call repeatedly to get things done. Do not assume that something you requested has been done--sometimes you can lost in the shuffle, so just be aware. make sure he has received all results from you (old and any new) before you go--that is an issue. All the best.

The Doubletree in Norwalk has an arrangement with Dr. B-- it's $84 per night that includes the pool and the gym. It is a very nice hotel and we have stayed twice and were very happy. Literally 8 minutes from the Darien facility. Where are you coming from? The Doubletree info: You must call Elizabeth Pimpinella- Corporate Sales Manager Direct line 203.523.2257 She will book it for you on the dates you require and take your credit card info--the are extremely accomodating. I am very happy with Dr. B--hope you will find some answers.

Hi Wendy-- My son also had 2 bands positive for Lyme from IgenX both for IgG and IgM, though he had no 'traditional' symptoms. His co-infections have tested negative from IgeneX. Our PANDAS doc, Dr. B, has discussed that he and Dr. Jones have discussed that one can be exposed to Lyme, but not necessarily 'sick' with Lyme--which he feels is the case for my son. DS has been on 3 months of abx--2.25 months of zith and 3/4 month on Doxycycline ( we stopped to see if it would help w/ migraines). He currently is on zith 500mg/day after contracting strep throat 4 weeks after his first IVIG, which is his first ever documented strep throat. He took 14 days of Omnicef for that. I appreciate hearing others have been through this and it settled down. I am reassuring him and telling him it's OK and to be expected. It just kinda hit me out of the blue, ya know? Thanks for the reassuring words.

Thanks, PhillyPA. I certainly hope so. He is slightly better today, but has chorea-like tics with body jerks and facial grimaces that are heartbreaking to see. I'm glad he wasn't in school. This is our 2nd IVIG and the tics have never gone away entirely. The cough/sneeze tic has gone away and we have St. Vitus' Dance in it's stead. Was that your son's first and only IVIG, or did you have more than one? Thanks.

Thanks--I don't know how I feel about giving him steroids--he has had only marginal improvement with them. He took Augmentin for so many years for recurrent sinus infections that it's possible he's resistant. I do have Omnicef here and have him one dose with extra S. Boulardii. I am considering LDN after reading some posts here. I take it for Ulcerative Colitis--also thought to be auto-immune. He went to bed, a little better, but still ticcing way more than he 'normally' does. Appreciate the support.

Hello All- I am fairly new here, but unfortunately not to PANDAS. My ds, 11.75 yrs,has had PANDAS I believe for three years, finally dx'd by Dr. B in June of this year. DS presented with OCD, takes 20mg Celexa daily and had motor , facial and vocal tics. Those tics went away this year when he started with a sneeze/cough tic that became fairly incessant March of this year. We had our first IVIG in August and had relief of the cough/sneeze tic, but suffered with daily severe migraines. We also saw tics that hadn't been seen for 8 months to a year--is this what is meant by 'turning back the pages' that I see on this forum? Could someone please explain to me what it is and why it happens? Anyway, as the 8 week mark approached, the cough tic reappeared and became almost incessant again. We had our 2nd HD IVIG OCt 18 and 19 and the cough tic is pretty much gone except for a little at bed-time, but ds has some old tics and a new tic I've never seen before: a crossing of the legs and pushing on his thigh. Tonight, I am alarmed because he is having what one can only describe as a tic attack; he is having several body jerking and facial tics all at the same time, unrelenting for 30 mins to an hour. He started crying because he could not stop. He literally was falling over because of the tics.I didn't know what to do so I gave him some Motrin. I held him, which seemed to help calm him. He does take Zithro 500mg/day prophylactically as he caught strep throat 3 weeks post -IVIG after the first IVIG when he returned to school in September. Does anyone have any advice or explanation or encouragement? I appreciate it.

I forgot to mention DS also got strep throat which we tx'd w/Omnicef and Dr. B has put him on daily zith for prevention now. He dodid not feel the strep exacerbated the tics. DS also caught a mild cold, which has ramped up the OCD and defiance that I haven't seen for 10 months! Lucky me! Actually, I feel sorry for my son--can't keep him in a bubble unfortunately.

Hi--I'm fairly new here. My ds 11.5 had IVIG at Dr. B's office Aug 23 and 24 '10. Initially we saw an improvement in his constant cough/sneeze tic. Unfortunately he became plagued with debilitating migraines which took 3 weeks to find someone to treat. I have seen a resurgence of old tics, facial and body, that we haven't seen for awhile. When I spoke to Dr. B about this, he felt the improvement, with the worsening, was expected and classic PANDAS post-IVIG. The every 8 week schedule has to do with the half-life of IVIG, which is 21 days. In 6 weeks, there is only 1/4 gamma globulin left, 9 weeks down to an 1/8, hence his recommendation for every 8 weeks. My son was also dx'd w/Lyme 2 bands on IgG and IgM from IgeneX--initially , Lifespan Labs showed no Lyme.. I agree that it is important to see an LLMD if you have questions. I know of several people treated with IVIG who have had chronic Lyme or Lyme in the spine, so I do not think it is contraindicated. We will be testing for co-infections tomorrow, one week before his next IVIG. It does feel complicated to deal with a child with Lyme and PANDAS.

Benzoyl peroxide applied to the lesions has also been found effective, and easy.

Hi Cobbie- I would suggest you have the rash looked at--rash and peeling of the fingers and palms is typical of scarlet fever, which is a sequelae of strep throat, usually. Have you contacted any doctor concerning the rash? Best, JG's mom