P_Mom

ARGH! See what I mean!!! He did indeed advise us to stop antibiotics COMPLETELY!! I did not listen to that! That is when I went to seek other medical help. (still thankful for him...just have to put that out there...atleast he helps and believes!!!)

Ea.....(and all).....okay, I have a confession to make. Like Ea says she pulles her hair out and even gave us a picture, well, I was a HUGE facial skin picker for about 20 years. It was really bad......just ask my hubby! I would spend hours in the mirror picking at nothing until I had scabs all over my face, which led me to be depressed and not want to go anywhere. I could not stop....I used to try to actually hold myself down when I felt the urge....I always lost. You know when I completely stopped cold turkey??! When my kids had their PANDAS episode.......I haven't picked or thought about it since then. I guess I traded one compulsion for another. I seriously have to wonder if I was/am a case myself.

EA...you are a beautiful girl...inside and out....you'll make it!!!

I know everyone on this forum just wants to !!!!!!!!!!!!!

Thanks! See, that is what bugs me about Dr. K (although, don't get me wrong....respect and am thankful for him!!!!!)......what he said at the conference is a far cry from what it says on his web site....and from what he told me in person. (just a month or so ago, again, actually. CURE!) Sorry......everyone knows by now that the cure thing bugs the booger out of me. It leaves someone like me with kids that are doing well, about 95% on average, but, who still flair with illness and drop to about 80%, then, so far, pop back up to 95%...well...... it just keeps me thinking ........if one IVIG will CURE them and ease my worries about another bad flair or progressiing symptoms..........but, then if it doesn't and this is as good as it gets, why put them through it............anyone follow me? I know, I know.....there is no answer to this!

Thanks, LLM. So, you were obviously there. Was PEX and/or IVIG referred to as cures? Did the other docs say that PEX/IVIG were needed for PANDAS kids in order to have the best outcomes/cures?

There was alot of paperwork to be filled in, sent, and approved. Making it to the top 10 does not automatically guarantee the money. I am still waiting to hear the final word. I will let everyone know as soon as I hear! Kelly

Thanks for all who posted with great info. on here. I wish I could have gone.......maybe next time. Buster......I am curious....you said Murphy stood by "only antibiotics" to treat PANDAS.....can you explain her reasoning??? THANKS TO ALL!! p.s.still waitig to hear back from Pepsi about the grant....they told me no news is good news....so, it looks good!~

They told me when I called that they would accept an out of state prescription.? I made it a point to make sure. They told me they would get back to me after I asked. After a day, they called me and told me that they would accept out of state orders.

tpotter...PA IS horrible for that!!! Dr. T would prescribe for Coram IF he feels your child needs it and If you see him personally first.

Plasmid.....for MY son it was related.......it may not be for yours. Could be the meds? How hot is it at night where you are?? I had my son sleep shirtless when this was happening...it helped a bit.

Ohh boy...did my son SWEAT at night when in his episode....bad...like you said!! It cleared when his episode cleared and has never returned. Don't know what it has to do with PANDAS...but, it was clearly related.

Augmentin is safe for children.....they make chewables and liquid for children. Are you reading the insert from Aug. pills????

Hi Amy! I am sure you know I have two PANDAS boys. My youngest manifest in August 2007, and, just when he was getting better (it was a horrible episode that we barely made through), my older son woke up one day in Sept. (the 17th) with multiple motor tics. As you can imagine...I thought I was going to die!! This was after the same strep infection. But, what can you do? We were "fortunate" in a way that my younger son manifest so badly, because it is VERY likely my older son would have been misdiagnosed with a tic disorder, perhaps even TS. (Dr. T said he would most likely have been given the TS diagnosis) Anyway, we started treating them both then......we struggled about treating my older son because, compared to my younger son, he wasn't really that bad....tics are easier to deal with then the ocd/anxiety/ hallucinations, etc.(as long as they are not debilitating) But, in our hearts, we knew we had to. Looking back, I KNOW we made the right decision, and, I believe the treatment did indeed keep things either absent or very mild for him, and, I believe we very well may have missed the TS diagnosis by treating. Another "positive" side.....both kids are on proph. antibiotics, so, you don't really need to worry about one bringing home strep to the other.

Voting!!

And, if it is Lyme....steroids are HIGHLY contradicted to take with the disease. Lyme can get significantly worse with steroids......your child would not get better....just worse.

Right... I am not saying don't check for Lyme if you think it may be a possibility...... Another thing I wonder.....since the all the anitbodies involved in PANDAS have not been identified (or, what the immune system is doing, exactly) ...could it be possible that many PANDAS kids are testing positive for Lyme (although still not definitive..just like PANDAS testing.....FUN) and, even more test positive for band 41....couldn't it be possible that something involved in PANDAS is creating this "positive" result...when it is actually not Lyme???? And then the Lyme treatments are effective because Lyme is treated with antibiotics....like PANDAS??? Who knows!! (oh..and vice versa!)

Yes....and they all became ill gradually....for example her oldest son, Jason, slowly developed symptoms over many years until he got really bad.(and he developed the Lyme rash) It is not sudden onset like we saw in PANDAS...normal to not normal in a day. I still just do not think band 41 means Lyme........there is absolutely no definitive proof on it....none. Many will say it is Lyme if you have 41...I understand that......but, many also say PANDAS does not exist!! So....who do you believe??? For us....we had sudden onset of symptoms with documented Strep.....negative Lyme results (tested 3 times........yes, positive band 41, like over 40% of the population), but, no Lyme. Just my opinion.

Almost half of the "normal" population tests positive for the 41 Band in the Lyme test....extremely common....I do not believe this means that almost half of the population has Lyme...although many will try to tell you so!

Another thing to chime in about babies being different from birth.....the Hep B vaccine. Our babies get this as newborns (which I have been told by several docs is absurd).........couldn't this also be a potential reason for some kids seemingly to have been "born that way", when, in essence, it was the Hep vaccine, given at birth and when their immune systems are extremely immature, that caused the aggravated immune response in infancy that subsequently messed up their immune systems.....and they weren't really born that way, it just seemed so because they get that danged vaccine at birth??!!

Mati's mom...thanks! There is no "complete" healing here. I have NO doubt it is all smoldering below the surface........And, yes, the act of turning to God had everythinhg to do with it. AHHH yes......In HIS time.....the most difficult thing for me to grasp....I am trying.

...the Pastor had nothing to do with it (But, maybe God did .........so, I got to thinking....how did this happen to my son (if it did...what Dr. K said...sounds like it)....then it happened without IVIG...without the bone marrow conversion, etc.

We had a sudden cessation of symptoms with my younger son. (No IVIG, only antibiotics) He was is in the BAD episode...I remember the day before he woke up with a new vocal....a low babbling talking voice with a hissing at the end........along with severe OCD....we made an appointment to see our Pastor (what ??? Really? We did think that!!).....the morning of the appointment, he was really bad. Babbling, hissing, grunting, standing in the corner, no eye contact, wouldn't go near or touch us........my husband took him to my mother-in-laws on the way to Church. While standing in the kitchen...he groaned loudly, stooped down, pulled his shirt over his knees, moaned some more, stood up and was "normal." He walked over to my husband, PUT HIS ARM AROUND HIM....and said.."Hi Dad." My husband broke down in tears as they hugged. Well, he took him to Church anyway....was totally normal while out Pastor spoke with him! Figures! It was not for them to see..I guess. So, I do know what he (Dr. K) means. Oh, by the way...after that point..the vocals, horrible episode never returned....from that moment, he just got better and better.

Older son 10, CamK 112 Anti-Lyso 160 RANGE (80-320) Anti-Tubulin 500 (250-1000) Anti-Dopamine 1 1000 (500-2000) Anti-Dopamine 2 2000 (2000-16000) Younger son, 7 CamK 162 Anti-Lyso 160 Anti-Tubulin 1000 Anti-Dopamine 1 2000 Anti-Dopamaine 2 2000

Tricotillomania, hair pulling, is a form of OCD. I am not saying that is what she has...but, given the PANDAS....I would be a bit concerned....keep a close eye.