eljomom

I understand your fears, as my dd 13 had a "feeding disorder" from infancy through age 6, then off and on till about age 9. So I totally get the fear of this, and seeing them so frail, etc. This is my non-pandas dd. That being said, she did have her tonsils out during this time as well, and I thought "how is she going to survive this, as she's rail thin as it is?" Well, right after the surgery---I mean on the way home from the hospital (and I swear it was from the drugs) she asked for a donut!!! This is a kid who gagged/vomited at many meals. So she hogged down the donut, but then the drugs wore off, and it was 2 solid weeks of minimal eating---even more minimal than before. My grandfather was an ENT, and I know he used to say that day 5 was probably the worst day of the healing process. I remember 2 of my 3 kids having this happen. My ENT for them also said 5-7 days out there will be a "setback" and more pain. I had my tonsils out at age 16 and I vividly remember the pain! two weeks later I remember asking my mom if it would ever feel normal and not hurt again. But it did. So I just want to let you know that you are at Day 5, and this is likely like hitting the bottom of the barrel for her---I hope and pray that's the case. But for a kid where eating is already an issue, I wouldn't expect things to go smooth with eating with pain thrown in. I do get the frustration of trying to protect our kids from comments that would be so innocent to a "normal" kid. I remember my neighbor--when our girls were around 4 or 5---mine who had a major fear of eating and gagged most meals, and my neighbor sitting there with us and her daughter eating dinner telling her daughter to "eat your food" and "two more bites" while my dd was sitting there gagging. If I had said to eat a few more bites she would have puked! Then I had a friend's son say to me RIGHT IN FRONT OF dd7 (pitand kid with tics/ocd)---"you know, I don't really notice her tics much." They just don't get it, and it's innocent, but I also get the wanting to wring their neck part I hope the tonsils out will be the one-step-back before you take many-steps-up!!

Would love to also know if this will help in treatment (or is this for diganostics)? Thanks for sharing.

I don't think I have the patience to read the whole thing, but "insufficient evidence" based on what????? One study of 15 kids?? Gosh, once again I am sounding a bit sarcastic.....maybe I should read before I flap my jaw

That was beautiful, and will need to revisit it I"m sure!

Dut--would love to know! MOM-thanks for the detail:) Wonder what anti-tic drugs are then---agonists or antagonists? Like Tenex?

Oops My link

Just got another post from Tourette Disorder, Pandas and Mental Health, with a link to this article. Madeline Cunningham is in it. I really wonder what the drug is they are talking about for treating Syd. Chorea? Also, it mentions that it works on D2 receptors, but that D1 and D2 are effected by the strep antibodies. We only have high D1---still would love to know just what that means, and how do you get the anti D1 brain antibodies lower??

I second that Grace! It all goes back to the frustration of WHO CARES what the heck it is called!!! Just figure out how to TREAT it for crying out loud I know, of course there needs to be proper diagnostics, etc. but for those who are already believed to have been diagnosed, we need treatment. Maybe they could divide and conquer---put some people on the "let's find a name" circuit, some on the diagnostics path, and then the really, really knowledgeable ones on the TREATMENT area?? Sorry, had to vent

I get updates from a group called Tourettes, Pandas and Mental Health, and after seeing a post about a "new study" completed by Dr. Leckman that says there is no link between pandas and strep, or something like that---i went and read the study. well, it was an old study, which Leslie Packer points out, but she does say this in her reply to a pandas parent who commented, and I am wondering (other than the abstract about pandas ocd vs. non-pandas ocd symptoms) if anyone knows what she might be referring to here as far as diagnostics ,etc. goes: "There is no doubt that some children have an exacerbation following an infection, but that doesn’t prove that PANDAS is a unique disorder or that the field has the diagnostic criteria correct. Other approaches to identifying or diagnosing PANDAS, such as those explored by Drs. Bernstein, Victor, and their colleagues in Minnesota may actually take us in a different direction that might be more fruitful. "

can someone explain why tics get worse after ivig? that would be a main reason for doing it in the first place....

I am just going to throw this out there----we don't have an extra bedroom, but two of my girls share a room that could sleep an army (on air-mattresses ), AND I haven't run this by my husband yet....and the house is usually pretty much "lived-in"-----but, if money is an issue, as it is for us, and that is something hindering making an apt. with Dr. Latimer, I would like to open up our home to anyone who might need a place to stay for an apt. visit. We are about an hour from her office, and it's definitely not the Ritz over here. But for us, I hate how $$$ is actually hindering me making apt.s for other docs---maybe LLMD, or immunologist, or whatever, and I can't imagine throwing a hotel/meal expense on top of it. Pretty much, the families here on this forum seem like one big family, so I would be happy to have any of you if it helps. We are on 10 acres---woods, pasture, beautiful sunsets, so lots of room for kids to run amuk and get their energy out. Wendy

Well, Diana P.---pandasnetwork.com.....I am pretty sure (not POSITIVE) but fairly certain that she claims that over time, he has been less and less responsive to strep---I believe he had IVIG (maybe PEX, but think IVIG) twice. She may also give abx when exposed. This sounds very wishy-washy, but in a nutshell, she has given me reason to believe that there are kids out there how get IVIG and get on with life....most of us probably wouldn't be hanging out on this forum if our kids were "cured", so we just rarely hear about it here???

Phasmid--thanks for explaining.....and it sounds like you have Anthem, which is what we have, so this stinks for if we do consider IVIG Very interesting about Flagyl---why did they prescribe Flagyl vs. something else? I only know flagyl from when my oldest had C-diff at age 2....

oh--thanks:)

I'll be at Girl Scout camp---sigh. Hope to meet up with you all soon:)

What is CLO??

Wow---this is all very interesting---and making it clear. What about cases where there appears to be a "cure" from IVIG, or PEX? Like Diana P.'s son.....So IVIG gives extra antibodies, to hopefully "eat up" the bad ones??? and PEX flushes the bad ones out??? then what happens? sorry, just trying to wrap my head around this...wondering if it's worth doing IVIG if only to need it again, and again, and again....

Gosh phasmid--that was about the most clear explanation i have heard yet!! SEriously! So the kid does not even have to "get sick" but just being exposed triggers the immune (well, autoimmune) response...I wonder then if this autoimmune thing can get "stuck"---as dd has had the ocd for a couple years, but the major, many tics started in July, and have not stopped. Can you help me make sense of why she is still symptomatic in lieu of what you explained??? She's been on abx for over 2 months now.....thanks!!

Phasmid---I'm sorry for the last-minute crash:( It seems like today is the day of possible let-downs, with doc appt, etc.....but praying it will go through for you. I don't mean to jump on this topic--but how do you figure out what HD and LD IVIG is good for -- like trich, etc..? My daughter had some ocd for a few years---didn't know about pandas....then after high fever this summer and exposure/illness with staph impetigo for 3 months....went from a couple tics to over a dozen, sep. anx, more hyper, etc... The tics are still there, no really lessening. Maybe a little less sep. anx, on abx, but nothing drastic. But dd is still basically functioning (we homeschool). I've heard that tics are hard to get rid of, but wondering if you remember seeing anything on what works best for tics when you were searching the trich. My dd does rub her hair, as do I (I have mild trich myself, and brother has TS/ocd-----both of us chronic strep as kids!!!go figure). Sorry if this is bad timing to ask---I can post on forum if you're not up for answering right now...

I don't know if she is pandas-friendly, but she did my surgery for my parotid cancer 13 years ago, and I love her---have actually thought of just calling her to see if they deal with pandas, but we don't have strep issues that we "know of"--though she did take my dd's adenoids out 18 months ago. Dr. Deborah Doyle (703) 753-1895. The whole practice is top notch----Rubenstein, McBride, Bahadori.....I think those are the ped. ENT's. Let me know if you call....

thanks norcalmom! i guess maybe it's a blessing that we wouldn't qualify due to no "documented strep", since i don't think i would want dd to go through it all to only get saline, and then have to go through it again. i am still sitting on the fence with ivig anyway...

I've read through the study a few times, and it frustrates me to no end that they are again limiting this to "documented strep." From what I know, there are many of us who either don't know if strep started the whole thing, because we weren't tested for it, or who are reacting to other things besides strep. It seems like it's just one more way for docs to be able to say "well, if you don't have strep as a trigger, then it's not pandas." Well, maybe it's not pandas, but pandas and pitand have the same symptoms and immune response, right? I also wonder about the definition that exacerbation is within 24-48 hours, as again, there seem to be many of us who started with milder stuff that we were able to say was "quirks", etc.....and who's exacerbations occurred over more like a week or so. Also, wondering what exactly the following things they are measuring are (or how they are measuring them): 1. Reduction of titers of cross-reactive antibodies (Abs) 2. Resolution of basal ganglia inflammation (as measured by pre-/post-changes in MRI volumetric scans and inflammatory sequences) 3. Normalization of selected serum and CSF cytokines

Buster---as for the "specific tests for antineuronal antibodies"--are you talking about the 4 that Cunningham tests for, or some of the others that have been tested by other neuros??

EX-ACT-LY!!!!!!!!!!!! Could not agree more! They are spending all their time on the wrong thing, in my opinion. Take the blinders off Okay, that wasn't nice, but you do start to want to beat your head against a wall.

I didn't read the whole paper, as reading the abstract pretty much let me know it was a "remake" of the Singer Kurlan paper. Could it be that what we take out of this is that these kids (pandas kids) are reacting to way more than just strep, and that the tunnerl-vision focus on strep has really tied the hands of doctors, researchers, etc.??