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we had a very positive response to oral steroids multiple times, btw

yes on the steroids and ivig. great idea for some of our kids! (i hate to make blanket statements for all kids) we have done small doses, as little as 1mg/kg and see more improvement from higher doses. i know other families have had same response. pm me for more info if you want. 2 neuros (one pandas, one not) have concurred on this for my kid.

do tbey know he was on long term zithro? once my daughter had ringing in her ears while on longterm zithro and the llmd took her off. i hate to worry you but i think it is a definite concern. i am not sure if the associated loss is temporary. please keep us posted and best wishes to you.

This is a good, though very sobering reminder of reality. Thanks for posting this. I am sure many of us have similar painful stories to share. Thanks, LLM.

lyrica was very helpful for my daughter at one time. in your situation , i say try both! no namenda here but she is on rilutek. i think they are similar.

which proteins?

pm'd you

can you see a PANDAS doc? i know the wait & cost is dreadful..

What a great kid! How inspiring! Wish it were closer to me-- but alas OH is about 10 hours away.

This is the list I think you being referred to - list of helpful docs also, www.pandasnetwork.org is very helpful. She can also contact with some geographically local people to you who can help.

We have had decent response from Anafranil (clomipramine)- not an SSRI. Also one child has used Rilutek- and it has been helpful, I think. Just some more meds name to think about. Another thing I would recommend doing is a CYP-450 test- it is a genetic test that shows the pathways that different meds (and it can be a specific psych med test) are metabolized in your own body. It is part of the whole "personalized medicine" process. Our LLMD ordered it, but there other ways to get it done. It is an accepted test (by most psychs) and is better than trial and error with meds that might make your kid worse- in my experience!

Prednisone (what is your dosing?- our pANDAS doc uses pretty high dosing, tapering down over a month) usually started showing good effects at 10 days to 2 weeks into it. I have seen this happen over 6 times with 3 kids. The only one I saw a quicker improvement with was IV steroids that were given for an asthma/pneumonia issue. Her OCD and anger improved dramatically right after that for weeks. So if you started 12/30 with pred- you are just getting to that point. How long do you have it for? Can you go back to the first abx?

OK- so I am showing my ignorance, I am sure-- but are you able to use sublingual Methyl B12- our LLMD had our daughter take it whenever she felt an episode coming on- plus multiple times a day, regularly. It was a liquid- strawberry flavored, I think. It was relatively expensive, but it did seem to help, I think. Maybe if you have certain methylation issues- maybe injectable is the only way to go? Just thought I would ask.

I know this is totally not part of the conversation- but you are all reminding me to be thankful of my husband's wonderful health insurance plan. I do not have to think about any of this. I would probably be even loonier and more distraught over the monster formerly known as PANDAS. You all have my utmost respect. TRULY.

practical advice This is probably not new- but I have not spent time on the OCfoundation.org kids site lately. It is great. And this fact sheet! I will probably print it out and take it to my dutifully patient and kind family doctor soon. oh & I cried when I read the last sentence.. way down at the bottom. I am so happy to read this after the article we have all been discussing the last few days.

So can we still donate to the PANDAS research fund at Uni OK?

cool, cool, cool eljomom! thanks for posting this!!

I am really glad that their discoveries have helped your son. One of my children is also helped by a glutamate antagonist. I will point out a few reasons that many of us spend "hours upon hours on a forum researching". We have lost our children. Some of us have lost more than one child. Psychotropic drugs DO have serious side effects and they DO not help every kid here. Some of us, most of us actually, have fought tooth and nail, expended every extra dollar and sacrificed everything to get our kids' help. In some cases, kids have recovered 100%. Would that have happened if we just took a pill? I doubt it highly. I think you posted about IVIG recently. Did you read the article? Because if you did, you will see that it is not recommended for your child. In fact it is not recommended for any of our children. And Lyme? only when indicated. What does that mean? Only if you have a fever or a bullseye rash. So the families who have found that a more silent form of Lyme has wreaked havoc on their kid's brain would be out of luck. I will agree that bashing people publicly is not the best idea & I do think people forget this is a PUBLIC forum. Anyone, ANYONE- can search PANDAS, CANS and Singer and this post is the first thing that popped up for me. So I agree, we should be polite. It might be helpful for people newer to the forum- if someone who is better at researching than me (Vickie?) could post some reasons on why this has really revved us up. Also, Bill- great idea on the book. I will be happy to participate if you are serious! Also, you are right; we need to "protect" our current, helpful doctors. We need them. edited for spacing

I do remember... who came up with that? I think of that frequently

T.Mom-- genius idea!! you make a few appointments, I make a few-- we could keep him busy for a while! and you must be mad--- I do not think I have ever seen you get remotely close to typing *@#* before! HA Oh & I vote for the Prince-inspired name. Seriously, though, I just read the full article. I am angered by it. I feel like I have been slapped in the face. I suppose that is a total emotional reaction, but I really do. This is like they are trying to convince everyone (if they say it enough times) that PANDAS is such a non-accepted diagnosis that we need to abandon it. I wonder what Dr S thinks of this article?

The nmda test has nothing to do with methylation. it is (usually) a paraneoplastic disease (meaning it comes from a tumor) that prevents the NDMA receptors from taking up glutamate. To be certain- it requires a spinal tap. Read about NMDAR encephalitis- if you are interested. If you are interested in a thorough workup (infectious and methylation) I have a LLMD who did this for us. I can give you her name, if you want.

True, but given that PANDAS has such narrow criteria at this point, and given that SSRI & CBT are the recommended tx by the NIH (after abx to treat the active strep throat)- it is saying that. What about the kids who have this (whatever "IT" is) and do not have the strep infection? Those who have lyme? or some infection that is not even considered as a trigger for psychiatric problems? How about toxoplasmosis, leptospirosis? I realize I sound argumentative to you, LaurenK, but I am not trying to be. These are all rhetorical questions.

I will agree that I am really, really concerned about the autoimmune term disappearing from the description. Whether it is PANS or CANS (and whether it is a PANDAS doc or an "anti-PANDAS" doc saying it)-- it is ignoring the CAUSE of the disorder. My children did not lose their normal functioning and sanity due to NOTHING. It was not even due, directly, to an infection! It is due to the fact that they have an AUTOIMMUNE problem that attacks their brain. This has been proven due to their excellent response to pex, steroids and IVIG. This is really frustrating. UUGGHH. more to stew over. just what I needed. If CBT or SSRI would work for my kids (and we have tried and trying again!) I would fall on my knees in gratefulness. And only, only, if it was because I was a rotten parent! (not saying that I am not, but that would be an easier answer) I would not wish this on anyone- not even my worst enemy-- but if some of these doctors were to wake up to PANDAS nightmare in their own children or grandchildren tomorrow- they might see it differently. Life is not black and white, unfortunately, no matter how much scientific brains would like it to be.

do not know if she is the best for myco p- but Dr L in MD does recognize myco p. as a trigger, from what I have seen/heard.