DeterminedMomVA

On my phone, so I'll keep it short. It's the right treatment, IMO, or at least a good start. If you've started the steroids, though, I think it will make you ineligible for the NIH study, so if you're seriously going to look into that study hold off on the steroids. Also, we got approval from our childs psychiatrist before starting the steroids that dr b in ct had prescribed for my son...they can cause rages and other problems in kids who don't have pandas, but instead have other mental health disorders not due to inflammation (such as true bipolar).

You may be able to get in to see the doctors at NIMH, if you're willing to consider the clinical trial. You should call to see if he's eligible. http://intramural.nimh.nih.gov/pdn/web.htm http://clinicaltrials.gov/ct2/show/NCT01281969 I also agree with printing the info from the link PowPow posted and taking that to your ped. We're in NoVa and just got in to see Dr. L this week after a several month wait. She was great, but if we had thought we qualified for the clinical trial, we would have called them and would have been seen a lot sooner. (My DS had just had a change in dosage of psych meds and didn't qualify for that reason, along with possibly a few others.) Hang in there. Believe me, I know how incredibly stressful it all is. Take care of yourself; it will help you cope.

Hi VAMom, PANDAS sounds like a definite possibility. We finally had our first appointment with Dr. Latimer today and really liked her and her approach, and got a confirmation of the PANDAS diagnosis. It is a very long wait to see her, but I agree you should call and get an appointment. You can always cancel later if you decide not to pursue it. I also agree with trying to add in some ibuprofen, if your DS will tolerate it. We did that before we could get in to see any PANDAS doc, and it definitely did help our DS a little. We're in Northern VA...are you anywhere nearby? Good luck, hang in there, and keep fighting!

No advice, but lots of prayers that the crisis passes quickly.

That is so great! Congratulations to Allie for appearing to conquer this one! And thank you for reviving this thread. The information, insights,and strategies in it are great, and I hadn't seen it at all. DS confessed to us last night that for months he's had a fear that robbers are in the house or are going to break into the house at night and kill us all, so having the chance to read the advice in here is really great as we figure out how to help him figure out how to that face that fear.

Does anyone know the current status of the clinical trial? I know they're still recruiting new patients, but at what stage might they be able to release preliminary results? I thought I read on here a few weeks ago that they only needed a few more patients and they might be able to release something? We're in the early stages of dealing with this disorder, but it would sure be helpful to have some encouraging results from the trial, especially when trying to get insurance to cover IVIG. I had a really informative discussion about the results of our labwork last night with DS's pediatrician, who asked if I knew anything about the status of the trial? He's very aware of it and interested in it. He's with a pretty big practice, and apparently DS is his third PANDAS patient. He's more comfortable letting the PANDAS experts take the lead in treatment, but he's been very helpful and really doesn't doubt the diagnosis. I know he'd like more definitive information, though. I'm encouraged by the NIMH director's blog post today and all the other official NIMH things that have been released recently, which I think is a good sign, but does anyone know how close they are to any realeasable results?

That describes my DS too. Often normal, but he's manic far too frequently with rages that come on suddenly and leave almost as suddenly. What LLM said is really interesting to me. We just got blood work results from Dr B, and his Vitamin D and calcium are low (which is weird, because the kid drinks an incredible amount of milk every day). His IGG1 was low, too. I know his copper was normal, but I don't know about zinc/B6. We'll have to get that checked. We won't see Dr. B again until the end of this month, and we're interested in hearing what he has to say about the abnormal blood tests and finding out what supplements we should add.

Me too. Son has been doing better overall, but had a 2-hour-long long violent rage last night in response to resistance to baseball practice and the imposition of new computer rules. It left DH with a black eye and two bite wounds to his arms. After it ended, DS had a 'normal evening' and even got homework done with little anxiety and enjoyed a family walk around the neighborhood, but DH and I are both feeling depressed and worn down, and know we still have a long road ahead of us. Our neighbors and friends have no idea of the ###### that we're living through. We'll all find a way to stay strong together. Hang in there.

Welcome, fightingmom! And thanks for your reply to my post. It does sound like our paths are very, very similar. Hang in there, and keep fighting for your son. Along with you, I hope Dr. B is right and that we're finally starting down the path to getting our children well again. I hope your son continues to see improvement on the prednisone and Augmentin. One week after ending the prednisone taper we're still seeing some real improvement in my son, but he's also backslid a bit in terms of irritability, defiance, rage, and tics (but not nearly as bad as pre-Dr. B.) I hope your surgery goes well on Thursday, too. I'll be thinking of you and pulling for you and your family! DeterminedMomVA

Thanks for the welcome and the PM's. Just wanted to update. E took his last prednisone on Saturday (5 mg). He was doing very well...a few rages, but generally less irritable, less hyper-focused, and feeling happier, and the tics were 90% gone. Unfortunately the improvement we saw on prednisone is starting to wane, even though he's still on Augmentin. More irritable, less able to accept 'no' for an answer, more anxious about everything, nightmares, more manic/silly behaviors again, and the tics are increasing in frequency and severity. I guess it's yet more confirmation that he has PANDAS, but it's still a bummer, although it was nice to have a few improved weeks. We have our first appt. with Dr. L on April 10, then one with Dr. B on April 22 (our second with him). E sees the psychiatrist at the end of March. I'm not sure whether to let him put E on an SSRI or not. Zoloft took 2-3 weeks to kick in back in October, and reduced the depression/anxiety a little bit, but may have started or exacerbated the tics. Any advice on where to go from here? Should we just hold tight until we see Dr. L or Dr. B, or try to be more aggressive than that? Thanks for any words of wisdom you can all share.

Hi, I'm glad to find this community and I've been avidly reading old posts. I have a 10yo ds, E, who has been having lots of psychological problems (mainly emotional lability, anxiety, school refusal and rages/irritability) for a few months now. He had no problems before that, except for a one-month period in january 2011 (which I recently discovered started 10 days after a strep throat infection). He began seeing a pyschologist in September and a psychiatrist in October, who diagnosed him with a mood disorder, probably bipolar....he was goeing into 'mission mode' sometimes and can't be dissuaded from whatever his obsession of the moment is, although the obsession usually switches after a day or two. The psychologist says that he thinks that is the manic part of bipolar. We tried Zoloft for a month, but he started having tics a month after starting Zoloft. We then tried Abilify, but the tics increased, so the Psych stopped all psych meds. The meds helped some, but not as much as one might expect. After being referred to a neurologist for the tics I requested his medical records and discovered an association between strep infections and the symptoms. When I showed the neurologist the medical records, he went and got Singer's book and started waving it book around, saying Singer can't verify that PANDAS exists (funnily enough, I hadn't even mentioned the word PANDAS at that point.) We have an appt. with Dr. L in April. Based on a request by Dr. L's appointment scheduler, I had dug up samples of E's handwriting, and the deterioration in fine motor skills in January 2011 is really striking. I made a spur-of-the moment phone call to Dr. B after the neurologist pissed me off, who had had a cancellation and got us in with only a week's wait. He diagnosed E with PANDAS and a sinus infection, and started him on Augmentin and 25 mg of predinosone, tapering off over 3 weeks. We're 12 days into the treatment, and the difference in E is simply amazing. He is finally happy again, tics are way down, 'mission mode' is completely gone, and he's less irritable and better able to control his temper when he gets angry. I'm dreading ending the prednisone, and hoping that the Augmentin is also contributing to his striking improvement. We're lucky that we seem to have a supportive psychiatrist. When we showed him the medical records last week, he said "we all believe in PANDAS, we just don't know what to do about it". He said that PANDAS was a definite possibility, and is keeping E off all psych medications while we see how effective the Augmentin/prednisone treatment is. He also urged us to get in to see Swedo, but I don't think we'll be able to do that. E clearly doesn't qualify for the clinical trial due to medications and because his symptoms aren't severe enough. After showing the psychologist the records and the handwriting samples, he's also on board with the possibility that this is PANDAS. Anyway, we're in the DC Metro area (Northern Va) and would love to communicate with others in this area who are dealing with this same disease. This forum has been really great in helping me gather information, so thank you all, and now we begin the journey to try to help my son. I feel as though I've been watching a tragedy unfold in front of me, and now I finally have hope that we may be able to find a deal with this terrible disease, which has been making E and all of us absolutely miserable.