cwmom

Hi, Hang in there!!!! I just wanted to share that my son is 100% back to himself . At his worst last summer people wanted to admit him to inpatient psych the psychologist at BU suggested intensive CBT daily for 3 weeks .( The wait list was so long that by the time he could have gone he was better) at worst He alternated between being almost non communicative to having fits of crying and rage. with SEVERE OCD. It was the hardest thing I have ever been through. He was gone I just looked at it like- this is an illness like cancer or a brain injury. not my son- he has no control over his thoughts or actions at those moments. I would cry every day for him. Fortunately my husband felt the same way and we were a team. We had to be with him 24hours/ day so we would alternate working ( although we both took most of the summer off) we had to. We were lucky we found a rheumatologist that understood it. He put him on antibiotics and within weeks he improved. He likened this to rheumatic fever of the brain. Chris went back to school in the fall and gradually came back to himself. We were lucky that it happened during the summer because there is no way he could have gone with his severe OCD Last night we had his grandparents over and he was the life of the party , sharing his ideas for having a cable access sports tv show, teaching them to play the wii, joking and laughing.interacting with everyone. He is a really happy 11yo boy. We never have any behavior problems with him he is back to the kid he used to be. we look back at the summer as a nightmare but it does make me appreciate what we have. It will get better just try to hang in there and take it one day at a time-- and use these forums to vent. I wished I had been able to over the summer but it was too painful for me to even write about. It was all I could do to get through the day. Good luck take a deep breath.

I am a Pediatric Nurse Practitioner -- I had heard vaguely of PANDAS in grad school and must have filed it deep in my brain somewhere-- because the day my son got sick and we brought him to the ER I was sure they would do a throat culture-- they didn't but I was so overwhelmed and scared that I just sat back and let the psychiatry ( resident) talk me into believing that this was a psychiatric episode ( even though he had a sore throat at the time). I could kick myself. I thank god that I had the ability to question providers at every turn and access the right people and it has been tough!!! I still feel like my sons doctors are not on the same page-- disagreement about the benefit of tonsillectomy/ disagreement about the antibiotics... but he is on prophylactic antibiotics and s/p tonsillectomy and except for a recent tic has been doing really well so I watch and wait and keep praying it stays at bay.

My son has very frequent "canker" sores. gets them every few weeks it seems. I can't correlate any symptoms to it. Interestingly he had an outbreak of warts on his fingers over the summer that disappeared after tonsillectomy (it was weird, perhaps coincidental but add nonetheless) I wonder if others see this.

Thanks everyone for the input. In terms of the throat cx- I should have asked for one the first day I noted the tics -in early Jan even though he otherwise was asymptomatic. ( He just hates " the swab " so much he'd rather get blood drawn.We have spent literally hours in the office trying to coax him into getting the culture in the past. Since he was not ticcing badly and he had no OCD sx I decided to watch and wait. the tics got worse and by that point weeks had gone by. I assume he had a strep as the antdnase b level rose from the 200's in Nov to 680 now. He has not gone up on his amox and the tics are gone-- not sure what to make of it--( just happy that he is well) thanks as always for all of your thoughtful insight.

Hi Glenda, We don't recall him acting sick at all. Our rheumatologist felt like it had been so long form the onset of sx tht the strep test was going to be negative at this point. He felt it more important to look at whether or not he had strep- and I interpret the labs as showing that he did. despite the antibiotics. I have not yet spoken to him I'll keep you posted, Maura

Hi, I can only speak form our experience-- Rheumatology has been the discipline that gets it. He explained to us that our son has the equivalent of Rheumatic fever and that he needs long term antibiotic prophylaxis possibly up to age 18!! We missed a couple of doses and it seems like the tic came back-- although today he is much better- My recommendation is find an MD that will do prophlyactic antibiotics and watch the titres over time and try to correlate behavior to labs Good luck

Hi, I was hoping that some of you who have been dealing with PANDAS for awhile could help me gain some insight. My 11yo son was diagnosed 6/07 following A SUDDEN ONSET SEVERE OCD/TIC episode so severe in fact that we couldn't even get his first set of labs until August (about 6 weeks after onset of sx) 8/7/08 ASO 192 (ref 0-149) 8/7/08 AntiDnase B 680 (ref <170) course of Keflex 10days 9/2/08 ASO 202 92/08 Dnase B 960 Amoxicillin 250mg twice a day prophylaxis 9/29/08 ASO 215 Dnase not done Tonsillectomy and Adenoidectomy totally back to normal 11/19/08 ASO 210 11/19/08 Antidnase B 297 Over christmas vacation he did miss a couple doses of amox when he went to a sleepover Jan 8th 09 started with facial tic looks like Samantha from bewitched (otherwise no OCD acting fine) tic got worse (more frequent ) over the next few weeks got labs on 1/28/09 ASO 190 1/28/09 Antidnase b 680 today 2/1/09 his tics are much much better-- My ? is could he have broken through the prophylaxis? Has anyone had this happen and what did you do? Thanks for any reponsed

thanks so much for posting this-- It is so helpful to have this kind of real information available. I really appreciate it!

my son with PANDAS ( in remission on abx) recently was really sick with influenza ( tested +) temp 103 x 3days he did not have any sx of PANDAS with this illness-- which makes me even more certain strep is his trigger--for him I was actually happy he acted just like anyone else with the flu-- miserable but no OCD, no tics.... good luck hope it is a mild case

1 week for the antidnase b less for the ASO

Hi Lacy, Did your daughter continue with prophylactic antibiotics after the tonsillectomy recovery. Was she on them pre tonsillectomy? Thanks for sharing the info with me.

Hi Everyone, I posted a few weeks ago about my 11yo son. He has PANDAS and he is doing really well. He had his tonsils out 3 weeks ago and he is just about 100% back to baseline. The only thing I noted was some anxiety when we went to a large group party last week. He was good before the surgery-- but now even better. He had been on prophylactic amoxicillin 250mg bid prior to the surgery and he was on 500mg bid for 10d post op. I don't know if it was the antibiotics or the tonsillectomy and adenoidectomy but his appetite is better than it has ever been ( Over the summer he had a 10lb weight loss along with his severe OCD/ anxiety issues). Has anyone else seen big improvements following tonsillectomy? I am keeping the otolaryngologist updated on his status so that he can hopefully write it up. Thankshttp://www.latitudes.org/forums/style_images/1/folder_post_icons/icon1.gif

Hi, We were offered either monthly penicillin injection or twice daily oral Amoxicillin. My son chose oral meds. We had planned to change to the monthly injection at some point. Not sure at the moment because things are going really well. I believe the rheumatologist likened it to a rheumatic fever protocol

Hi, I am new to this site but already have found it to be very informative. My 11yo son has PANDAS. I don't need to explain what this has done to our lives. His overnight change in behavior occurred on 6/27/08 ( my 41st birthday) My husband and I went away for the night. Our son slept at a friends house ( his best friend), he called us at 2am complaining of a headache and sore throat and told us he had vomited-- the next day when we arrived home we found a completely different person- He had EXTREME behaviors- he was paranoid that here were chemicals in his food and drink.... long story short he lost wt, and refused to bathe or brush his teeth for weeks!!!! We were able to maintain hygeine but it was a nightmare-- he would only eat what he bought himself-- we couldn't touch anything or it was contaminated-- he wouldn't touch us or anyone IT WAS SO FRIGHTENING!! The heallthcare community didn't have a clue-- They didn't even do a throat cx in the ER 2 days after his sx began. The psychiatry resident wanted him to do outpatient day treatment-- He never even mentioned PANDAS ( How could it NOT have been part of the differential diagnosis. Especially when he had piano playing hand movements and facial tics ( tongue thrust) the outpatient program was horrible the first thing that happened was our son was brought into a room where a "therapist explained that his brain was having a hiccup and that was how to describe his OCD and that medications would be started to help with that" Immediately he went into PANIC mode and from that point on lost all trust in not only that staff but us his parents as well.-- We got outta there quick. I love the title of Jenny McCarthy book Mother Warriors because that is exactly what I felt like. I was battling a demon in my child- I kept lookig for answers even though experts were telling me PANDAS is a "CONTROVERSIAL DiAGNOSIS" -- I could write about this all day all of the ups and downs but I will spare you- My recommendation to anyone going through this is to find a provider that will listen a good Psychiatrist is key Rheumatology has been the discipline in our area ( Boston) that gets it. My son had his tonsils and adenoids out last week -- for strep prophylaxis controversial but worth the risk in my opinion. His appetite is already better than pre T&A he will continue on amoxicillin or penicillin for a year we plan on discontinuing the SSRI next spring Today he is a happy, healthy 6th grader doing really well in school -- plays sports and has lots of friends-- We know PANDAS is always a possibility but we are armed with the knowledge that it can be overcome--