peglem

I appreciate your posts. I didn't see anything controversial about your post. You were just sharing your experience, and we need as much info as possible! I do not have extra bucks for testing and there ARE diverging opinions on Lyme testing and treatment.

We've had that kind of quick response w/ zithromagic! You say she was a drama queen even before PANDAS. I wonder if it was just the early stages- "PANDAS LITE".

I believe most have been receiving 1.5-2g per kg of body weight for PANDAS.

Well, I'm not an ERP expert, but from what I've gathered on here- you take things in very small steps. So, if she has food issues- you might start with just exposure to food pictures- gradually increasing exposure time- then move on to just looking at real food- then maybe touching- one small taste.... like that, but tailored to your child and incorporating feed back from them.

Allie recently had a few problems...not stuff I'd seen w/ PANDAS before- she was having episodes of profuse sweating- soaking her clothing kind. This started a week before her period, and about 2 weeks after her last IVIG. She's also had a common back injury (like when you step off a curb and aren't expecting the drop down). Anyway, we decided to drop one of her medications- bethanechol, which was given to correct problems w/ sympathetic nervous system (it was a life saver back when we started). So, she stopped the sweats (but also, her period is over, so don't know for sure if it was hormonal fluctuations instead of medication). I'm taking this as a sign that she is healing and this medication is causing SEs, instead of correcting symptoms...I think that is what's going on! Next, I'm going to try getting her off of lamictal. That will take a long time and will have a lot of variables in the duration...so we'll see how it goes!

We initially got it from our pediatrician, but now the psychiatrist rx's it.

Has anybody prescribed anything for anxiety? We use valium as needed, and when we really need it, it helps a lot! But, if you're not at a place where you're ready to try that ( took a long period of extreme desperation for us), have you tried valerian root?

I don't think acetaminophen is anti-inflammatory?

In our case, my daughter has been on nystantin for several years- I think it keeps the intestinal yeast at bay, but its a pretty mild antifungal and we find we need diflucan about once a week. With diflucan, I can usually see a difference w/in 24 hours.

Most organisms release toxins when they die and when alot of them die quickly it can overwhelm the body's ability to clear the toxins quickly enough. Lyme and related infections seem to produce a greater herx reaction than other infections- but when people talk about "yeast die off" its basically a herx reaction as well.

No, and my child is prone to wild and aggressive. When we started zith, it did more for aggression than any psych med we had tried. If the zith increases aggression for your child it may suggest yeast problems or could be a herx reaction to something the zith is fighting/killing.

Both nystantin and probiotics help with yeast. But, if the yeast is outside of the digestive tract, diflucan is probably needed. You have a girl, right? Is she messing w/ her privates? (sorry for being graphic, but one of the nice things about girls is its easier to see if they've got yeast outside of the gut) I give diflucan whenever my daughter seems "itchy" down there and it helps quickly- though we usually have a difficult day following because (I think) die off.

We used to call it zithromagic! So glad you're seeing such good results! You might try some valerian root at night for calming. Ibuprofen helps my daughter settle down at night, too. Our experience w/ lamictal is that it interferes with sleep, so if/when you get to that point, you may want to do AM dosing.

Dr. Latimer stays current on PANDAS research. She is who Dr. Cunningham referred my pediatrician to when he called about the CamKII results.

All I had to do to get psych records for my dependent child was sign a release. I actually faxed the release to them and they sent the records in the mail. Is it possible you are the victim of bad record keeping?

Well, call and check, but it may just be the reason that was cited for the sleep study in paperwork. I know when I look at my daughter's medical files, sometimes dx's are written down to order tests- like my daughter does not have epilepsy, but it has been noted in her file when ordering tests to check for it.

Just my opinion, if I were in your shoes- I'd try diflucan on top of the zith 1st and see if that resolves the issues you think the zith may be causing. I'd keep steady on the zith and add the lamictal 1st- then if issues don't resolve with lamictal, switch abx. As a sort of adjunct to the discussion (not to add to the confusion, but it does get complicated), My daughter has been on lamictal for @ 3 years, zith for @2 1/2 years, and another medication called bethanechol (for autonomic dysfunction). She has been getting PANDAS/immune treatments for @ 1 year. What we are seeing right now are some things we have never seen before as symptoms- profuse sweats, redness across her nose and cheeks, severe headaches and photophobia. Discussed with her pediatrician yeasterday, and we think maybe now that some of her immune issues are being resolved, along with the symptoms we were treating with those medications, she is getting side effects from the medications. So, we are going to try pulling her off those meds. Have already discontinued the bethanechol, and it appears that the sweats are diminishing. Now that she is on Xmas break, it would be a great time to start taking down the lamictal as well, but I'm going to wait until I'm sure what's going on with the 1st med change. Plus, we're doing prednisone (while she's out of school to limit exposure to stuff while she's immune supressed) for a back injury. Sorry for the ramble- but I wonder if the abnormal eeg is actually a symptom of the PANDAS, for both our kids? I'm glad we treated for it, as we needed the relief that the lamictal gave us, but, that was all before PANDAS treatment, so I'll always wonder if it would have resolved w/o the lamictal if we'd done PANDAS 1st.

I'm not sure what you mean by uninhibited? I wonder if she's got some yeast going on with the abx. Anyway, I would not change the abx and add lamictal at the same time, then you won't know if the effects/side effects you see are from the lamictal or from the new abx. My daughter is currently on lamictal and has been for 3 and 1/2 years due to what looked like absence seizures, even though a lengthy eeg showed no seizures- just spikes. I do think it has helped her and did resolve those seizure looking episodes.

Inhaled steroids do not help my daughter's PANDAS. It just gives her a bloody nose.

I think there is scientific evidence- maybe proof is too strong a word. More and more, it seems to me, doctors are turning to "standard of care" and protocol checklists to treat patients and avoid personal responsibility for decisions. PANDAS treatment does not yet have a "standard of care" or standardized protocol for treatment, so docs who do treat it are kind of sticking their necks out professionally. God bless them for trying to help our suffering children.

No, she does not need active infection for PANDAS. Exposure to strep is enough to cause her to produce the antibodies and its the antibodies that are the problem in PANDAS.

Smarty- so glad you had some advice. I was really trying yo think of a way to help. What about those disposable absorbent pads they slip under you in the hospital (well, when I was in labor, anyway.) He could start by using those and disposing of them, then gradually moving closer to the bathroom/toilet.

Dr.L is the only one I have heard of who uses PEX. I don't know if PEX is a better option in long term cases- interesting question.

I don't have experience with this, but, going to an allergist to desensitize yourself so you can get the bicillan shot sounds like an awful lot to go through when there are other abx available to do the job. I'd go w/ Dr. B's recommend to try biaxin.

Sorry, I had to laugh at your description of the doctor's visit, its so familiar! I once told a doctor that the other patients in the waiting room were d@mn glad to see my daughter called back! And she once threw a plastic block at her pediatrician's head (good thing he wears glasses) and in the same visit, kicked him in the groin. The thing is, it was obvious that she was not doing it out of anger- just popped up out of nowhere.