peglem

Thank you all for sharing your experiences and knowledge. IVIG terrifies me. My daughter will be 15 in a few weeks...we have been dealing with PANDAS most of her life-only the last 3 years or so have we known what we're dealing with though. Hearing forum members experiences, I don't see how I could get my daughter to cooperate with that procedure at all + the age factor it seems, reduces the chances of it being successful. Heck, I don't even know what "baseline" looks like anymore-just know its better than what I usually see. Those facts lead me to the question of using the prednisone as needed to quash flair ups. Would that be so terrible? Would it continue to work? I'm talking about staying on prophylactic abx, but using pred. whenever we see symptom flair ups. What do you think?

She was on prophylactic zith when she suffered an exacerbation of OCD symptoms and tested + for strep on 9/1. Then she was prescribed a full treatment dose of zith for 5 days...no improvement in OCD (but we didn't do another strep test after.) So we went back to the doctor and when I said that it was the antibodies to the strep causing the problem-so just getting rid of the strep wouldn't calm the symptoms, the doc suggested pred. And she's on 1500mg/day of keflex...poor little tummy. She'll remain on keflex until Oct.1st. We'll return to the doc then and switch back to a prophylaxis of something...probably zith, with a different dosing schedule. So, its kind of diagnostic, in that we'll know more if it works... Also plan to check IgG subclasses...Her total IgG has been a little low on previous tests but subclassses have never been tested. Are there IgA subclasses? Her IgA has also been a little low on previous testing. We (her dr. and I) will try to identify an immune deficiency that may qualify her for IVIG or PEX...I absolutely cannot afford to do it without insurance coverage. Also, will prednisone usage skew the IgG testing? How long after pred do you need to wait before you can get a valid IgG count?

My daughter was put on prednisone, 40mg/day for 5 days. It has made a significant difference in her ocd and general mood. Saturday is the last day. How long can I expect the effects to last?

Strepcoccus mutans is the cavity monster.

We've mostly used the nasal spray, but when I buy gum its the xylitol kind. Allie doesn't chew gum, but I bet that would help prevent cavities.

Yes, I thought of that. And am I right that all the recovered adults we have heard from are females? Of course that study only included 4 people. Not enough to identify a real pattern, but makes me wonder...

I feel exactly the same way. Until we know what is going on with her immune system, I don't want to throw an immune stimulant into the mix. Its not like you can just take it back out of the system if it fouls things up.

Forgive my yammering on here- things keep occurring to me and feel like I need to put them down here, to kinda check my understanding. So, hows this: Antibodies from strep are activating the CamKII inside the neuronal cells, causing abnormal signalling. So, is that it, in a nutshell? And if that's true, does that mean the antibodies are actually not destroying brain cells, but only mucking up neuronal cell signalling?

Okay, from here: http://www.latitudes.org/forums/index.php?...lite=cunningham This is an except from an email from Cunningham to Dawn (of this forum-it was pasted by TMOM) So, then it would make sense that dopamine blockers (like antipsychotics) should help. But, Risperdal made my daughter worse...hmmm.

I actually saw this as hopeful. My daughter is nearly 15 and from what I've heard mostly is that older kids don't respond as well to PEX and IVIG. My daughter has had this for a long time- most of which was untreated. I guess its all relative.

Just bumping this...I think it got lost in the crowd on a busy posting day.

Here's one I found interesting. Using PEX in adult cases that had childhood onset: http://www.turkpsikiyatri.com/en/default.a...icle&id=592

154 was the level that made my daughter's doctor suggest that we do some glucose meter checking at home. These results were: may 21: AM fasting-114, after PM meal-105 may 26: AM fasting-184, after PM meal-189 May 27: AM fasting-102, after PM meal-103 Not terribly outrageous...just enough to say lets get it checked out.

Yes, my daughter had some "per-diabetes" BS levels that we got checked out at the endo. It turned out to not be pre-diabetes. I think ragey, fight or flight, meltdown (take your pick of what you call it) behavior may be the cause. When that happens, your body increases BS levels for quick energy source for muscles and sensory processing...part of survival mode. That's my theory...and my child is pretty close to F or F mode when she gets a blood draw.

My daughter (90lbs) was on 250mg/day prophylactically. She was on 5days/off7....Sept 1st, rapid strep test came up +. This was day#7 off, but I think she'd been positive for a few weeks already. The NP who saw her said the 250mg was not a treatment dose and put her on 500mg for 5 days, then resume the 250mg. (that didn't work this time, but that's not relevant to your question)

My daughter tested high to D2. So what does that mean from a practical standpoint? Are D2 recptors being destroyed (attacked?), blocked, activated? I thought I remembered someone saying that it indicates increased dopamine? It seems like knowing this would help in deciding what might be a helpful re: psych meds.

Elizabeth, Our 10 1/2 yo son's case of PANDAS has been a journey to search for the missing puzzle piece. No explosive, night & day onset. Just a lifetime of alphabet diagnoses and attempts to treat the problems, only to get nowhere. He was dx'd with PANDAS in 11/08. At that time he was presenting with rages/tantrums/destructive/aggressive behavior, separation anxiety, labile emotions OCD-more in the perseverative thinking (stuck),tics, some choreiform mvt in fingers, regressive behaviors, very high titers--a little bit of everything! Migraines started at 3 1/2, repleat with the vomiting. (We think strep, now.) With his birth to present medical history in hand (lots of infections that presented like strep, but never a culture. Evan probably blew half his medicine out his mouth!), and with the knowledge that we distinctly remember starting to have "issues" with him by 21 mo, we believe that the PANDAS thing started a long time ago. Four docs have said PANDAS. Because he has had it so long the saw-tooth patterns of waxing & waning have been as if you stacked one pattern on top of another-pretty soon you don't have a clear pattern. Evan's mycoplasma pneumoniae IgG was very high. Can't remember the last time he had an illness that could have been caused by this bug. Dr. K says that so many of the kids he checks with the rage/aggression/destructiveness have this elevated, too. Whew--so to take a stab at your question, I believe what makes this a difficult case is it's "chronic nature, and that we don't know how much is strictly PANDAS. Also, the steroid burst did not give us "Ta-Da!" results. Too short, too much of a jolt to begin, too abrupt stop. He had about 2 1/2 good days out of the 5. I think Latimer's prednisone schedule would have been more helpful in Evan's case. He is currently on 250mg azith/day and Risperdal 1mg 2x/day. Every psych drug we have tried has failed. (Penicillin, even injections ,wouldn't eradicate the strep.) Risperdal has worked the best, but not all that well. About as well as Dr. K said it would. His CaM was 184%, but this was with him on azith. OK, a long answer to a short question. Fire away with more questions. There are alot of "holes" in the hx I just gave. Dawn I will be VERY interested in IVIG outcome for you. My daughter has almost exactly the same history and at this point we don't know how much of her difficulties are PANDAS related and how much, if any, is something else. She went undiagnosed (for PANDAS anyway) for so long and problems started so young. Risperdal worked for a few months, then seemed to make things worse.

We use valium for blood draws, and put her on a table- I straddle her and if we have a very good phlebotomist and one or 2 helpers-it works. The weird thing is, the whole time she's really trying to cooperate...its the F or F getting in the way.

We started low dose naltrexone in January. The increased endorphins are supposed to strengthen and regulate the immune system. So far, I think its helping.

Thanks! I read a few of her articles "for children" and I am intrigued. She makes a lot of sense and explains very well.

I wonder how much, if any, the eating environment at school has to do with it. Many are very "busy" from a sensory standpoint- echo-ey sounds, harsh lighting, little bodies moving to and fro...just a thought.

Has your daughter ever had IVIG, PEX or taken steroids? No, she has not.

Manda, that is so scary! And so hard staying behind and not being able to be there to comfort your baby! Prayers going out for you all for a good outcome.

Wow! Thanks, Vicki. That's useful information to have. Is that an allergic reaction or a side effect? Or do they even know?

Sept. 1st, my daughter tested + for strep again (while on prophylactic zith). She was prescribed a higher dose of zith-500mg for 5 days and was instructed to go back to prophylactic dose for 5 days after that, with the provision to call back if she was not better in a few days and Keflex would be added to the zith. Well, things seemed to be improving while she was on the 500mg dose, but on the 4th day of the 250 dose- the bed wetting anad sleep issues came back. (I do have a call in to the doc, waiting to hear back). We have used many different kinds of abx unsuccessfully, and now that it looks like maybe the zith isn't cutting it, I'm exploring options. Has anybody had success with either minocycline or doxycycline? I know Swedo has completed a trial of minocycline in regressive autism (subjects had to show evidence of inflammation in CNS fluid), but the report hasn't been published yet. We haven't tried tetracyclines for treatment yet, but haven't seen much success with anything but zith thus far.