Kiera

PM ed you!

Yes Dr K does treat adults! A 21yr old was getting ivig when my kid was there! Also his oldest was in late20s/30s I believe. Yes, he's a pediatrician but when it comes to pandas he's an expert of all pandas cases and is not closed minded about the "P" in pandas!!

Had IVIG self-paid, insurance denied, currently appealing, ordered for encephalopathy & unspecified disorder of immune system Company - Cigna, Self funded by employer, plan run by Cigna Plan states PEX IS covered for Pandas as first line treatment, no ivig coverage as says it's experimental! Thanks so much for doing this!

EBV (epstein barr virus) should be added to the list. And yes, ALL cases of bipolar (or any psychiatric disorder for that matter) should have pandas ruled out first, by a Dr that knows what he/she's doing, before going down the pschy road. This is what Beth Maloney (author of Saving Sammy) is on a mission tpo get done! Pandas is common in siblings and as Dr K says, no kid can be that unfortunate to have a litany of "diagnosis" after his name,(like my ds9)NO, it's all undiagnosed pandas symptoms! Try antibiotics and steroid burst FIRST!!

Don't know what the sense is of going to the pschy FIRST, unless of course it's a pandas-believing pschy, but those are few and far between. And if the pschy says it's not pandas then the ped will likely go with that!! And the fact that he's always prone to tics, ADHD etc, reconfirms low level pandas all along, not the opposite. Run with your gut!!

Yes this is probably pandas, pediatric means up to 21! And I've read in a couple of places Dr's believe it can go way beyond. Think there's even a few young adults on the forum here with pandas. So don't let his age steer you in the wrong direction. The oldest person Dr K has treated was in the mid 20s. So I would do all that you would do if he were 10 again and treat aggressively, search for hidden infection, try high dose antibiotics, possibly try steroid burst. Check all the various pandas websites for providers in your area (many have sprung up since your son was last treated) so help is out there, just have to be aggressive and find it. Good luck!

I believe you can do iv zith, don't think you need to do a test run though. Problem is finding a co-operative ENT. I'm out west, found a great one who obliged with everything I asked. I just asked for iv antibiotics, didn't specify which ones. Asked to culture everything, which he did and TG because cultures were pos for pseudomonas and did 10day dose of cipro for that. Can your pandas Dr recommend a good (co-operative) ENT?

PM ed Cobbie!

pmed you

My ds just had ivig with Dr K a couple weeks ago. We pre-med with tylenol and benadryl. I'm sure you could substitute ibuprofen for tylenol, check w MD. The benadryl helps relax and helps prevent allergic reaction. My ds had sensory issues and wanted the heplock out the 1st day so we took it out and just restuck the next morning. The side effects were worse the 2nd evening, vomiting and severe HA. he did require steroid. I also had some zofran which I gave for nausea (w Dr's permission) which really helps. problem is my ds does not drink alot so hydrating him was a problem. But he was good by the am after ivig, all side effects gone (I'm sure because of steroid). Bring some reading material!!! Good luck!

Go to Beth maloney's site - pandasfoundation.org. She has listed 1 Pandas Dr in kansas and 3 in Missouri. If your current won't treat day to day flareups you need to find a new pcp that will. If none of these work out, try a DAN or naturopath Dr, they're usually more open.

So sorry to hear this but glad you postponed and had a few days warning at least. Safest thing to do.

Beth Maloney (author of Saving Sammy) sent out an e-mail not so long ago about the first overseas support group. Contact Suzanne Ayres, Oxford, England at suzanne.ayres@yahoo.co.uk. Sounds most definitely Pandas to me! Don't give up. Have you checked out all the US pandas websites? Print off the new white paper by Dr Susan Swedo, just published in Feb and bring it to the neurologist. You can find it at pandasnetwork.net. And read, read, read in the meantime, go in armed and if they're not receptive to exploring pandas then move on until you find someone that is. Also I believe most of the few specialists here in the US do phone consults abroad. Dr K, Dr B and Dr T. Scour this forum and you'll learn so much. Good luck!

Oh and one more thing, with my ds, sensory issues related to texture, taste and smells decrease his appitite. So once again, pandas is the root cause, when pandas flares, sensory flares and appitite decreases.

My ds 9 had an MRI because local pandas Dr is a neurologist. Inflammation in the basal ganglion does not show up, everything was normal except incidental finding showed a clogged maxillary sinus which was later drained during T & A surgery and cultured and found to be infected, as were the T & As. So proved useful in the end!

I do believe this is how ivig works. I know they're not sure exactly how, but I believe ivig floods the blood system with good antibodies thereby making the bad antibodies diluted and they loose their potency and destructive effects. My brother got treated with ivig for myasthenia gravis, another autoimmune reaction where the bad antibodies attack the receptors in the neuromuscular junction in the throat and eyes. He recovered tremendously post ivig. I guess it's like anything that's diluted looses it's strength?

Must be some politics going on there - "ticcing associated with strep" REALLY!!! So what does the "s" in PANDAS mean anyway???? Did you not ask these good Drs what on earth that means and why they're afraid to call it PANDAS?

I know! Histamine is a complicated issue, I still don't completely understand it all. You can search old threads here for info on histamine. Not all pandas kids are high histamine, many are low, but my kid has many allergies that's why I think he's high. As regards the slow motility - well my kid has a GI Dr due to years of chronic constipation, he now has a cecostomy tube for nightly antegrade enemas to flush out the colon. He's had every GI test under the sun done for that but because of the decreased appitite and low weight, the GI Dr was going to do a gastric emptying test to see if the food was moving too slowly out of the stomach. But first we tried the periactin which proved it was just a poor appitite as he was ravenous on it and had no problems eating larger quantities. Hope this helps explain.

Thanks for posting!

As far as I can remember, he gained 10 lbs in 5 weeks on periactin. Since periactin ia an anti-histamine and my son has tons of allergies it made me wonder if high histamine depresses appitite? We only did a 5week trial to see if appitite was the problem, not something mechanical like slow motility or slow gastric emptying, so the periactin proved it was just appitite. After that he did a 6 week steroid which caused him to gain even more weight so right now he's still in the normal range. Lozsdad, it seems like your dd may be flaring up again and might require a 2nd ivig if you can't get the eating under control. Periactin is only treating the symptom of poor appitite too, not treating the underlying cause (pandas) but it may buy you time until either the right antibiotic or ivig corrects the flare-up.

Yes, many pandas kids have poor appitite and in fact many cases of anorexia can be helped with ivig (ie.pandas treatment) Some anorexia is just another manifestation of OCD. So yes, it's all related, the gut/brain connection. My ds also did a 5week course of periactin and gained a ton of weight also. probably helped with his allergies at the same time!

Yes, been on antibiotics continuously. Reacts to being around strep but never swabs positive?!

All I can say is that with my ds, when pandas exploded 2 1/2 yrs ago, both strep titers were elevated and went in a consistent downward trend over the next 2 yrs, when in the same 2yr period he had flare-ups and remission of symptoms so there was absolutely no corelation between titer level and symptoms!! When the titers finally hit the normal range this january, his symptoms were at their worst and we just now completed his 1st ivig (with pos signs post 3days!!). I can't explain the titer thing!

Hi Kathryn, sent you a pm!

You can do phone consult with either Dr K or Dr T rather quickly to get the ball rolling and I highly advise, you won't regret it!