peglem

I like that the psychiatric has been removed! Haven't had my holiday punch yet, but SINS sounds good to me!

Hard to remember about the meds, she may have been on risperdal at the time. This has been about 7 years ago.

The blood test was probably an ASO titer, which doesn't show current strep in the body, but indicates a recent infection in the past...did they swab for current strep? If you don't see improvement in symptoms w/ the amoxicillan (and you may have to give it for longer than 14 days), then you'll probably want to try something a bit stronger. Amoxicillan did not work for us, but we'd been years into untreated strep before trying it, so your experience may be different. I think you have good reason to strongly suspect PANDAS, but reduction of symptoms on antibiotics would be an even stronger indication. As far as the "right" abx goes- it seems to vary from child to child what is effective. Many do very well on azithromycin or augmentin. Others seem to do better with a cephalosporin (keflex) or omnicef. For my daughter, zithromax seems to be the best. Offhand, i can't think of anyone who resolved PANDAS with amoxicillan.

Yay!!!!!

When my daughter was about 8 years old, she did this mouth opening/jaw popping thing, looked like she was trying to depressurize her ears. The doctor said they did have fluid behind the eardrum, but no infection. I wonder, though, if your son has inflammation in his temporal mandibular joint, or the nerve. I'd have the dentist check it.

My family said the same thing...until they tried it, then decided it was worth the benefits. It works really well for female cramps, also.

Oh, yeah, if I had professionals who knew what they were doing, I'd have it done at home. I'd just need to be sure they are prepared to handle it if anything goes wrong. I don't know what the possible complications might be, but maybe someone with IVIG experience will chime in here w/ how safe they think that might be.

Thanks, everyone. I bought the 3 mg. capsules, so I guess one should be enough! I didn't see the time release version on the shelf, but maybe I'll try that next time. Peglem, do I need to go to a natural foods store for valerian root, or can you find it at like a GNC or Vitamin Shoppe? Is it a tincture or a pill/tablet? And how much do you give your child? Valerian root usually comes in capsules. 400-550 mg. per capsule is what I've seen available. I buy it from CVS, Walgreen's, Walmart, or the grocery store- anywhere that sells vitamins usually carries it. I give my daughter 2 capsules at bedtime. (whether its 400mgs or 550mgs). Be forewarned though, this stuff STINKS!!! A nice thing about valerian is that often, if someone is already tired, but cannot sleep- it relaxes them enough that they can sleep without the melatonin, but if they aren't tired, like during the day, it eases anxiety w/o causing drowsiness.

I've been giving my daughter melatonin for years. Right now she weighs @ 100 lbs. I find that 1.5 mg works fine for getting her to sleep...3mg will do that faster, but only after a bit of ragey behavior. BUT, no amount keeps her asleep for more than 4 hours. If I only give her melatonin, she will awaken exactly 4 hours after dosing. I also give her valerian root at bedtime and with this, she usually stays asleep until morning.

It's a whole load of crap!!!! The big hurdle is supposed to be the insurance! I'm praying that this is all settled soon and your son is on his way to recovery quickly! Thanks Peg This is so not even funny I cant believe this is going on Im sick !! This has really stumped me .I hope Dr T calls back Hey Peg would you do the infusions at home?\\ I would not do the infusions at home (I was a teacher, until I had to resign to take care of my daughter). But, if you are comfortable doing them at home...I'm just not, because I don't know what I'm doing. Do you think you can do it yourself? I've heard of people with MS who do their own infusions.

It's a whole load of crap!!!! The big hurdle is supposed to be the insurance! I'm praying that this is all settled soon and your son is on his way to recovery quickly!

I just called Dr T and left him a message hopefully he will call me back.I know that the 1st Neurologist Dr S is insulted that Dr T got it approved they dont understand how he did it I said who cares how the point is you told me it had to be approved before we went forward. Ok so were approved .NOw thats not good enough Dr S's office said they are going to call me before the day is over so hopefully they do I highly doubt it, It never ends Melanie Sounds to me like Dr. S told you that as a way to refuse to do it (boy did he underestimate you!), without taking responsibility for refusing...he thought you'd never be able to get it approved thru insurance. It'd be comical if it wasn't your child's treatment on the line!

So, what if you go to your insurer website and find in-network immunologists. See if they'll do the IVIG for you. Explain that the doctor who prescribed it is out of state, so you're looking for a local provider to fill the script.

Well, I'm confused, too. Usually, the party who is to perform the procedure puts in for insurance reimbursement, so I have no idea what to do if you have the insurance approval, but no provider.

I completely understand your hesitation, but I just don't see how you can completely protect your kids from EVER getting exposed to strep. I think minimizing exposure is about as good as it gets, unfortunately. Man, this stuff sure turns us into germaphobes, doesn't it?

I'd take her up on putting the kids on amox- ideally 48 hours prior to your arrival. And what a nice gesture on her part!

Diflucan will cause a burst of behavioral symptoms for Allie, but its the best at eradicating her yeast. (vaginal yeast is when we bring out that one) I think nystatin, which my daughter takes regularly is less potent. What we see with diflucan is wild manic hyperactivity which I attribute (speculatively) with toxins produced in yeast die off.

Is your son on any other medications? Could this be a drug interaction problem?

I don't have an answer for you, Stephanie. This sounds exactly like my daughter's PANDAS rages, though. I'm so sorry this is happening to your family...I know it really really sucks and is so scary. I hope you find a speedy solution.

Here it is: http://ojs.lib.swin.edu.au/index.php/ejap/...le/view/152/175

When I made our appointment w/ Dr. L (back in Nov. we won't see her til January), Faith said she was no longer doing phone consult appointments, they just didn't work out. So I think she is trying to cut back to a reasonable case load. I tried to call today to nail down some scheduling stuff- the office is closed until after Christmas and I think Dr. L will not be back in until the 1st week in January. I had asked about an appointment that week after Christmas.

Thank you, Buster. I appreciate your commentary!

Judy, What a beautiful story! Glad to hear you have so much love and support around you. Please link the article when it comes out.

I think until the PANDAS is under control, its really difficult to tease out what is PANDAS and what may be co-occurring conditions. But, sometimes you just have to treat symptoms, whether PANDAS or not, because the children are so miserable if you don't. The trick is to find treatments that actually help.

What I observed with my daughter is that she is more susceptible to compulsion impulses when she is tired, and those compulsions keep her from settling down to sleep. If I can prevent her acting on them, she has a big ragey meltdown and then quickly falls asleep. But, when in full exacerbation, she will awake from a dead sleep to perform compulsions...its not fun. The only sleep aids that have worked for her are melatonin (but we do go through the rageys 1st) and valerian root.