peglem

Kirkman's labs: http://shop5.mailordercentral.com/kirkmanlabs/

That's a tough question to answer for us. I know when she has a flare, that's unmistakable. But, I'm not sure what remission looks like. Her pediatrician (who came on board when she was 10yo) and I think that she's had this problem since infancy and it wasn't properly treated...her development is awfully messed up. OCD is the norm for her. What we consider "doing well" is that we can work on her OCD and it doesn't completely incapacitate her. When she flares, anything that interrupts O/C results in very violent outbursts of aggression, mostly toward herself, but also against caregivers. It is always accompanied by bed-wetting. So, before this flare, we had not had violent episodes for 3 or 4 months. She had a flare from exposure last August and it took us several months to get it back under control. I did not use these supplements for that flare. I guess I can safely say that she was trending in a positive direction before this flare. Peg, a couple things come to mind regarding that her OCD never fully remits. I know some ppl believe that for some kids the OCD becomes a "habit" and after pandas goes away you then have to do some CBT to clean up the mess. I, personally, do not believe that to be the case, only b/c when my boys are out of pandas they are fully out. NO ocd left whatsoever. And they have had pandas since the ages of 15 and 20 months so you would think at least for my 6yo that OCD would be ingrained by now but it's not (but we are talking about a 6yo vs. a 16yo, so maybe she has been dealing with untreated pandas long enough that it IS a habit). Also, have you looked into lyme? Seems like when the OCD does not fully remit, ppl are finding out that the presence of lyme and/or coinfections are the problem. Lastly, in the case of my boys, clostridia and/or klebsiella causes mild OCD (and severe rages, but that's another topic). I know you do things to fight yeast, but have you ever had her tested for intestinal bacteria? These are bad bad bad bugs in my house. My 6yo turns autistic overnight with clostridia. I call it "autism in a box", not to make light of autism at all, but the regression is quite immediate and astounding and alarming. And the recovery (when vanco or flagyl is started) is equally astounding. Here's an example, when he recently had clostidia (went 3 months undiagnosed b/c one of our docs misinterpreted the lab report) he was doing the following: standing in the corner, putting hands over ears and huffing air forcefully through his mouth over and over with anxious look on face, lost all eye contact and social skills, while shopping sitting on the floor staring at the ceiling and saying random inappropriate phrases over and over again, sitting under the table and looking confused when asked to come out, just completely lost all around. I thought I lost this kid forever this time. Then another doc picked up on the clostridia markers, started flagyl and all the above behaviors disappeared in 4-5 days. He has completely normalized in every way. To be honest, I just don't get it...something you have to see to believe (and I still shake my head in disbelief that clostridia could DO that)! By the way, as far as I can tell, my 2yo does not react as strongly to clostridia, just some aggression and brain fog - I don't "lose" him like I do my other one. Ok that was a long way of saying that kids with autism or more prone to these infections so maybe that is something else to look into in your spare (heehee) time... We have done testing for intestinal bugs, and she may have had some in the past, but not anymore. I think in my daughter's case, she just doesn't have the normal development (yet) to replace the OCD, if that makes sense. The neurological growth, the neural connections are not there, for the most part. I do believe (flying in the face of conventional wisdom here) that she is still capable of development. At any rate, nobody can prove she isn't, so we'll just have to see what she can do.

Don't know why this made me laugh so hard! I wonder how many of us have engaged in subtle or not so subtle deception to get our kids help?

That's a tough question to answer for us. I know when she has a flare, that's unmistakable. But, I'm not sure what remission looks like. Her pediatrician (who came on board when she was 10yo) and I think that she's had this problem since infancy and it wasn't properly treated...her development is awfully messed up. OCD is the norm for her. What we consider "doing well" is that we can work on her OCD and it doesn't completely incapacitate her. When she flares, anything that interrupts O/C results in very violent outbursts of aggression, mostly toward herself, but also against caregivers. It is always accompanied by bed-wetting. So, before this flare, we had not had violent episodes for 3 or 4 months. She had a flare from exposure last August and it took us several months to get it back under control. I did not use these supplements for that flare. I guess I can safely say that she was trending in a positive direction before this flare.

Cod liver oil.

My daughter started what I think is an exposure flare last week. I was scared because it usually takes at least a month to get her back. But, this time I added an extra dose of zith. She's currently on every other day and I gave her 3 days straight. Plus, I doubled her CLO for 2 days (anti-inflammatory) and added in 4capsules/day Kirkman's yeast aid after noticing that all the ingredients are antimicrobial, not just anti-yeast. She's not all the way back to pre-flare, but has not had any more of the hellacious fight or flight episodes that are the worst and major symptom for her.

My daughter has very low IgA, don't know if its considered deficient or not. She gets IVIG largely because she has low IgG. But, I think the low IgA is why she seems to have chronic strep when not on abx, and possibly why we don't see typical strep symptoms when that happens. I seem to recall that people with low IgA are at greater risk for developing autoimmunity. Her immunologist does take the precaution of ordering IVIG w/ low IgA content, and she's handled IVIGs without side effects since last May- Just had her 10th or 11th today.

When microbes enter the body, the immune system responds with antibodies to destroy the invaders before they can cause infection. In our kids those antibodies produce PANDAS symptoms.

Well, SSRIs did absolutely nothing for my daughter- not worse, not better, and we tried @ 5 different ones before we moved on to risperdal. Maybe she didn't have enough serotonin?

I think using psych meds, 1st of all, muddies the waters by adding another variable. Is your child improving because they are recovering or because of the meds, and vice versa if they get worse. Before we knew what we were dealing with and before we knew appropriate treatment, we tried many different medications-SSRIs and anti-psychotics and we made changes when my daughter would worsen (she was only going from bad to worse in those days). Honestly, nothing really helped until we started using abx. It was very apparent at that point that she would improve ALOT on abx, w/ no changes in psych meds. Its not that she never responded favorably to psych meds- it was just so inconsistent. We still do use valium to help with desperate times or to get her through stressful situations. But, last Dec. we had some new physical symptoms that were not PANDAS related and it turned out she was having side effects to some meds we were using to help with PANDAS symptoms. So, I guess its hard to tell, when healing starts, when its time to withdraw psych meds as well. Withdrawing meds produces symptoms as well, then its hard to tell if those are withdrawal symptoms or PANDAS symptoms..... All that being said- sometimes things are bad enough that you just have to have some symptom relief and deal with the consequences of that later.

Zith works different from the others you've tried and has a longer half life. Augmentin is amoxicillan that is "augmented" with clavulanic (probably spelled that wrong)acid. Personally, zith has always worked well for my daughter. Augmentin always ramps up her yeast...so we stick w/ the zith.

I don't think you really have a choice. Is your husband comfortable working with doctors who will not treat or don't know what they are doing? Maybe you could set a deadline...call an expert and make an appointment, then say if she is not better by (insert a date that both you and your husband can agree on)then we'll go see an expert. You can always cancel the appointment if you find you don't need it. As far as working with a doctor you don't know- the "experts" who are recommended on this board have a reputation for being very thorough and compassionate. They spend time finding out all the details and getting to know what is happening with your child- not just a 15min office visit. Its a lot of money if you can't get it covered by insurance- but, its your child. And I would say a 9 year old's tantrum is more like stamping their foot and pouting- maybe screaming something mean out of frustration- but shoving the table across the room and complaining about the thoughts going through her head that she can't stop is not normal- IMHO.

My daughter started IVIG last March- low dose and had another in April, low dose- she got very much worse after the second one, so we switched to 1.5g/kg every 4 weeks, starting in May 2010. Improvements have been slow and steady and we still get "dinged" w/ exposure to strep or inflammation (like those darn teeth trying to come in!)...But, compared to exacerbations before treatment, its a piece of cake. So, my daughter has had this most of her life- normal development was affected- she is consumed with OCD, but improvement means I can talk to her about it and she is trying to fight the OCD. Aggression and self injury are hugely reduced. She went from around 100 incidents/day (including the minor stuff where she just smacks her head)to 3-5 incidents/day. But the big stuff almost never happens anymore-when it does we know she has an exposure or inflammatory trigger. She's learning again at school, or I should say re-learning, since she had so much regression and loss of skills over a 5 year period. Since Nov. we've been doing @ every 3 weeks, instead of every 4, and have been able to go off bethanechol and have cut her lamictal in half. My arms have lots of scars from her scratching/biting/pinching me in the past- but nothing current. The sore on her forehead that she had for @ 8 years because she kept banging it on things and re-injuring is healed- just a scar now. And her arms and hands are also healed- though I'm still concerned about this callous on her index knuckle on her right hand- she's not injuring it, its not bleeding or anything, but its like a big knob with a scab on top that never heals. The rheumatologist didn't seem to think it was a problem. But, I digress!

I taught Kinder for 12 years and that made me smile!

Buster's info on this: http://www.latitudes.org/forums/index.php?showtopic=3756 http://www.latitudes.org/forums/index.php?showtopic=3756&pid=29305&mode=threaded&start=#entry29305 Hope that helps!

I think it varies. My daughter tested + for strep 10 days after her bicillan injection.

I would. When we went through those days of turning positive whenever course of abx was done- Al would test + @ 3 days after most abx, but w/ zith it took at least 5 days. YES! I don't know what, but there are a lot of bugaboos out there. It could be something else.

Ugh, I spoke too soon. She was up 'til nearly 2 AM. When ever she tried to sleep she had to get up and do something. But, I'm sure today will be great?

Wow, y'all have some powerful prayers!! Yesterday was a bit better, mostly I think, because I kept her pretty doped up. But, also, I doubled her CLO and added Kirkman's Yeast Aid when I noticed all the ingredients are not just yeast fighter's but anti-microbials as well. Today, she only needed one dose of ibuprofen and one dose of valium. She's doing much, much better! Still lots of OCD, but a lot less anxiety over it, and hyperness in reduced as well. Thank God!

Such wonderful news! Thanks, I needed that!

You guys are such terrific cheer leaders! Thanks for the support and especially the prayers!

Not terribly filling, but soothing- squeeze a fresh lemon into a mug, add boiling water and honey. Both the lemon and the honey are antibacterial as well. I can't get Allie to drink this (or anything hot), but it works great for my other 3 kids.

Its official. She wet the bed last night and got up about 3 AM to obsess over her obsessive stuff. Just started charting at the beginning of January. I guess this will give us a good idea how well that works. Yeah, motrin and valium. Thanks for the prayers- that's sufficient!

Looks like we're headed into another PANDAS episode. Last night Als had a bad meltdown like hasn't happened in a couple of months. Then this morning I'm told she injured a school employee with a headbutt to their face. (anybody who works with Allie should know to keep their face out of range, but they probably weren't expecting it because it hasn't happened in quite awhile.) Then this evening she's totally O/C with her toys, "placing" them and fixating and getting herself all upset...and the whiney crying. I think somebody at school must have strep. Her teacher says no, but I'll bet she was exposed...oh, well, nothin I can do about that. So, I'm upping her abx for a few days, and will try to schedule her IVIG a week early. She just had a course of prednisone at the beginning of December, so I probably can't do that again for awhile. Hope I can get her back out of this quickly.

I don't know if this has been studied officially, but a while ago, Buster was doing one of his famous data charts and seems like he observed that those on SSRIs had elevated antiD2. I'd forgotten about that. I wonder if Dr.C or Kathy Alvarez have any data on that?