JAG10

Pardon the sidebar rant, but I CAN'T WAIT FOR THE DAY IT DAWNS ON AMERICAN PEDIATRICIANS THEY HAVE HAD A PRIMARY ROLE IN THE EPIDEMIC OF NEURO-PSYCH DISORDERS IN THIS COUNTRY!!!!! My goodness, they do treat antibiotics like crack!!! Your child had THE bullseye rash and they didn't think it would be better safe than sorry to treat them with antibiotics???? Sorry. Someone else new just posted Children's Boston was not helpful. Look up top in the pinned thread for helpful docs near you. Nobody wants a BAD doctor. You want a pandas/pans friendly doctor. Dr. Bouboulis is in Darien CT. He might not be a bad choice for you with the bullseye rash history. In the meantime, get a rapid and 72 hour culture. Are the tonsils still in?

You might find that the doctors who will order Plasmapheresis recently often follow-up with IVIG anyway. The problem is that plasmapheresis is harder to come by. On this board, Dr. L near Georgetown, MD and Dr. Elia at CHOP are the ones most frequently mentioned as offerring their patients both. There might be others, just not sure who they are. Another consideration is that the risk factors associated with each are different. Of course, the risk of not doing anything must also be weighed.

I never discussed teeth with Dr B, but Alex's DS has had major flares related to teeth/infection. When my dd was seeing Dr K wrote us a note for the dentist that she needed to be on abx two before and two days after all cleanings. So, perhaps it just hasn't been the experience of your DAN! doc yet.

dcmom, I think Bees is right, Dr. B believes in or is at least aiming for full recovery; but basically I think he wants kids happy, healthy and symptom-free. Our dds are the same ages; 8 and 11 (soon to be 12.) My older girl went misdiagnosed and therefore improperly treated from preschool age to ten years old. We have been treating her for 19 months now with real, genuine progress. Initially in treatment, we saw some worse before better, but not anymore. Actually, because Dr. B uses the 6 days of prednisone at the time of IVIG, we see her 100% immediately following ivig. I think (my opinion) it is the combination of IVIG mopping up the mess and the steroids temporarily turning off the immune faucet. She has never done the steroid taper that lasts weeks and I think she was too sick for that to work when she first began treatment. This time (next week), we are pursuing IV steroids with IVIG and then I will speak to Dr. B about tapering the steroids from there. So while we can get her "in remission", we have not yet been able to get her to a point where she is not reacting to immune challenges and she still slides back to 90% and stays there after a couple weeks (which is why I think 100% is tied to steroids.) That said her reactions are not nearly what they used to be. But I can see, particularly this time of year, the succession of challenges (albeit different sources-strep, viral, teeth), the succession is BAD bcs the reaction to the last challenge in the series was more than the first. I think succession is bad (my opinion again.) If we can get her to a point where she is 95-100% symptom free, but needs a 'clean-up' treatment after back-to-back immune challenges, I could live with that. Hopefully, that sets the stage for her immune system to "outgrow" that over-reaction and her brain to replace undesirable cognitive or muscle memories that were learned when sick. Jill

Take this for what it's worth, my opinion/observation, but I have found this time of year to be worst. Actually mid August through mid October is when my dd's get exposed to strep and then a few viruses in succession, at least for the past two years. They are older than your little guy. The little ones do seem to be sick all winter long. We have three little cousins that are in the 3-5 y o range and I call them the germ factory. If you are of the philosophy that your goal is remission rather than cure (maybe goal isn't the right word, but that it is what it is) some periodic treatment clean-up is what I think my girls need mid to late Oct. For my kids, not big allergy girls, these months are the hardest of the whole year. I'm glad your phone consults are valuable. We see the same doc and I conference with him after my older dd's treatment next week. My dh and I take turn taking off work to take her to CT, so I haven't spoken to him directly since June. Best wishes and fingers crossed on continued health.

Oh great! Now Nancy is singing to Philly's dolls. Thanks for the funny.

Spreading the Halloween wealth around does help over-indulging. There are collections for hard candies and taffy for the troops, ect. So, Philly, if you give each of your dolls a piece it won't have such an impact on your waistline.

Jtsmama, My goodness, my heart goes out to you and your family. His certainly sounds like it would qualify as a debilitating case. Hopefully, Dr T can get you into CHOP for PEX and HD ivig ASAP. Kiddos can react differently to treatment. My dd11 had the restrictive eating thing when she was really sick. She never had PEX, but her first ivig was in 5/2010. She was 4'10" and 85lbs. 17 months later, she is about 5'6" and 135. The restricted eating stopped immediately for her, if fact the ivig procedure itself had her eating like I hadn't seen in a long time. So he has a surgically placed feeding tube rather than the one that goes up the nose? Has he had a modified barium swallowing study done? Wow, this definitely sounds like one of the top cases in terms of severity. I'm sure Dr T is doing all he can to move your DS through the evaluative process quickly. You're in my prayers. Do you have support? This is so much to handle. How are you doing it? Jill

Ditto, no food reactions either. And I gave examining different diets a good try years ago, but no difference. Just try to model and teach them balanced, healthy diet principles.

I'm not sure what a ped would prescribe for poison ivy, but you are looking to be convinced and to convince your hubby. Dr. K does a 5 day steroid burst that is low dose; he looks for any change in symptoms, possibly worse first/ hyper, then some improvement. The amount of improvement doesn't matter. You're looking for confirmation of autoimmunity. I know it's hard to get over the expert in your own back yard not being your knight in shining armor. I'm in Philadelphia. It was hard for me to read Beesknees praises of Elia and CHOP when she helped us with diagnosis, but unhelpful for treatment bcs my dd had already been sick "too long." But I was way more desperate than you are now. Once I got the vibe Elia was dragging her feet on treatment, I already had appts lined up with doc #2, then doc #3, and now I'm on doc # 4. Call it the pandas walk of shame if you want I was a momma on a mission. PS- Bees, I'm over it, btw. Just trying to illustrate a point. I'm very happy for your child's health!

We have this weed that loves our shrubs, a thistle weed I think. Prickly little sucker. Everytime my dh pulls them, he gets a bad allergic reaction; all hives and swollen. He has to take a prednisone course that tapers. My less than 10 lb cat broke his toe when his nail got caught in the carpet and he went to dart.... He had to take 150 mg of prednisone over 3 weeks. Now, I'm not suggesting breaking your dd's toes, but maybe have her walk in poison ivy and the ped will prescribe prednisone for something "mainstream" enough for your dh. Then you could see what happens. Kinda like getting "long term" abx for acne rather than pandas? More than one way to skin that cat! Hang in there!

eljomom, hi I recall you are nervous about steroids, but I wanted to share... My girl was sick for most of her life with that drifting baseline you reference, until March 2007 (something really, really nasty must have been going around this area then, bcs it's the same city, month and year as PhillyPA) when the WHAM, no turning back chronic episode occurred. My dd was very very very sick by the time (late 09) we stumbled on pandas at CHOP. You talk about only one documented episode of strep; we have none in either girls' records yet their ASOs and anti-DNAse B's were off the charts, like top 1% measured....so they must have had strep but are asymptomatic. We have taken the multiple IVIG route and my dd is 90% symptomless most of the time. But immediately follwing IVIG AND STEROIDS, she is 100%-you know it when you see it! My girl has never taken more than the 6 days Dr. B prescribes with IVIG, but the past two IVIGs, immediately following the steroids, she is completely normal which is nothing short of a miracle for a kid who was so sick for so long. I must admit, when I read Tpotter's post about the TX conference, I felt a wave of sadness when I read what she wrote about immediate treatment being key, critical, fatal. I know this is hard for her to write too as her boys have been sick many years as well. I'm afraid those of us with older, "chronic" kids are our own conundrum, separate from those the pioneers are trying to reach now and save via early intervention. But have hope and faith, never give up, embrace your tenacity within. Our kids can get there too. I know some great moms like Philly, dcmom, Kayanne and others have been tauting the glories of steroids and based on observations of my dd's last two procedures, I am starting to pursue this for my dd more vigorously as well. In the typical hierachy of pandas treatment, steroids are given a good run prior to IVIG. My girl may have been too sick for that. The IVIG mops up the mess and my girl had years of mess to mop up. But now that she's so close to being symptomless and I see the steroids get her all the way there, her doctor and I will have to explore this more thoroughly. I'm not sure if orally or via IV with IVIG, but those are my pressing questions prior to her IVIG next week. I know you are not sure which way to turn with steroids and I totally respect that. I remember the discussion about your dd being happy and what did that mean. When my dd was at her worst, she wasn't unhappy because she was so out of it, giddy, goofy, immature, silly like my child was non-stop drunk, but she was a happy drunk. She became further and further separated from her peers socially and academically, as they grew up and she regressed. I remember how I felt about her in K and the first half of first grade; we were managing, we were holding on, she was bright and learning despite her symptoms, that baseline drifted until that 3/07 WHAM! I don't know exactly what that bug or bug combo was back then, but I hope nothing comes along like that that makes your decision so much easier to pursue everything and anything that might work. Every single one of us has our tonsils out in my family and my dh's. As far as my girls go, I don't think it made it go away, but it didn't make them worse either. What I don't know, and how could anybody, is if they would have been worse had the T & As not been removed. I personally don't think ANY of our kids are hopeless or limited in the healing they can achieve. I think there are several different ways to get there, or get back there if slippage happens. "Mental illness" is out and "Brain Biology" is in. New treatment avenues are being explored at an excelerated rate. I do think you need a new doctor. Not because I know anything about her outside of what I've read here, but because your doubts are so strong, the relationship is no longer productive. It's just time to cut bait and move on. There isn't one doctor discussed here who has 100% kudos from every posting patient family. Well....maybe Dr. Cunningham , I should have said treating doc. I hope you find some peace and direction you can believe in soon. Time goes by too slowly when they are sufferring and too quickly as their childhood marches on. In the past month, my dd has met her womanly friend, started shaving her legs and tomorrow is being Confirmed (so this trip down memory lane is as therapeutic for me as it is intended for your benefit!) Jill

Mc/fry/coke- I don't know if this helps any, but for what it's worth..... My dd11 tried many SSRIs prior to PANDAS dx and tx. ALL resulted in behavioral activation EXCEPT prozac. But prozac didn't help her either. I just thought it was interesting it didn't activate her when even St John's Wart did. I'm sure there is a biochemical reason for this tendency, but I don't know what that is.

I'm really surprised by Swedo's comments about dysphagia. Fear of choking and moving the bolus posteriorly for the oropharyngeal phase is different from pooling liquids and aspiration pneumonia. Did she say these kids were exhibiting overt s/s like coughing? Most kids have a fairly healthy, productive cough if they aspirate. She really recommended modified barium swallowing studies for kiddos with pandas related anorexia? Does she think that's another source of ongoing infection?

Good, glad to hear it. And I'm sorry, I wasn't saying you were branding this board as anti-lyme. But I'm sure you have recently read that others feel it is.....Maybe people don't feel we are anti-lyme, just not pro-lyme to the extent they would like us to be. I still feel the general sentiment on this board goes beyond mere tolerance and that we are a fair-minded group.

This is exactly where I was coming from. And Bees, when I commented about the comfort zone of sharing 'I thought it was just pandas until we found lyme', my point was that that was not my objection-sharing personal stories. So, absolutely, folks should feel comfortable sharing their own experiences as they see that they fit the specific venue. We all have to be pragmatically mindful of our likely audience. This is an evolving process. I know I've made mistakes like posting as if we are only a group of moms here and forgetting that there are dads and adult/teen patients (who know way more than I do) who have been offended because I did not consider them when making remarks. I acknowledged, apologized, learned from my mistake and moved on. The frustration/tension remains because the sentiments dcmom articulates have been expressed by various pandas parents over time initially in a polite manner, then firmly and sadly now with confrontational tone..... yet appear to fall on deaf ears. Hopefully, this has changed. I read your other post about steroids. There used to be a time last year when an new family would post their story and Chemar would always post a gentle, respectful warning about steroids with possible TS. She would clearly state her child was not pandas, but has TS. Well, it got to the point that other pandas parents who greeted new families would proactively include Chemar's advice and now she doesn't really feel the need to do that much anymore. I think the "pandas only" folks who mostly post here have done that for Lyme et al when they've been given a chance. Repeatedly, I have seen pandas parents who have ruled out Lyme recommend complete and thorough testing including lyme/co upon initial consultation if the Lyme families don't beat them to it. I think it is more than merely tolerated. They may not recommend testing to the extent that some lyme/co families feel is necessary, but to brand this group as anti-lyme is not honest or fair.

I was talking in the context of Lyme. Not PANDAS. Why would this upset you? You are having success with PANDAS treatment? You believe in your choice of treatment? My post was not intended for you. I like to request the thread be locked. This discussion is no longer helpful to the forum and it makes us ALL look bad. -Wendy It was shoe-horned in the thread to scare people who you deem not to take Lyme seriously enough. It was random, irrelevant and so far removed it is at best gossip. It bothers me because it shouldn't be done. Why do you find it necessary to post these collections of Lyme stories on the PANDAS forum but none of the other boards?

It is absolutely implied, no question, by some. I have seen several posts on the Lyme board about those of us still living in the world of "so-called 'pandas'" I don't have the time or desire to make confronting that notion on the Lyme board my crusade. But, I do think us PANDAS parents should be able to have a place to work our problems w/o the overt and covert insults about our kids' choices and treatments. And that post about multiple ivig's by SF mom was outrageous and completely outside the realm of this topic. ****Well, I felt like Momof3girls, that the Lyme testing, diagnosis, and treating Dr.s are ripped apart unfairly, too, I guess that is why I posted on here, that has not been our experience. I usually do stay over on the Lyme board now, but cross over sometimes, like you do, too? That's wrong too and you should stand up to folks that do that. I mean, if someone is going to go on the Lyme forum whenever PANDAS is mention and go on about how all lyme is really pandas and how the way you are treating your children is going to cause permanent, life threatening harm, and LLMDs are quacks who just don't know, yadda, yadda, yadda....by all means, you should stand up to them and say "This is where we come to discuss Lyme. If you don't value and validate that as a legitimate topic on its own merit, this forum will unlikely be valuable to you." There have been folks on this board who have pontificated that perhaps there is no "true OCD or TS" and it's all pandas or infectious-based. I don't think those folks are going on the TS and OCD board continuously talking about pandas in an extreme and relentless manner; that would be rude and likely unwelcomed. There needs to be some understood respect that when you are in someone's house (or forum) you don't constantly criticize or you're likely not to be invited again. We are all guests here, but you get the analogy. If that doesn't seem reasonable, I ask you again, why don't you feel compelled to spread the word across all 6 boards and only compelled on this one?

Many of theses posts are absolutely ani-Lyme testing and anti -Lyme doctors. You can re-read them yourself. These posts continuously try to rip apart Lyme testing and the doctors that treat. Pandas is a clinical diagnosis given all the time and I respect the doctors treat for it but it has failed many of us. I have more evidence to treat for Lyme than strep and it has nothing to do with some cross-reactive antibody from strep to Lyme. I'll speak for me and you speak for you. I sent a tick to Igenex in 2006, years before I knew what pandas was and before Lyme was a hot topic. I've spent serious coin and tested four times. Does that sound like someone who doesn't take Lyme seriously? I stand by what I wrote, my post was not anti-Lyme. It wasn't pro-Lyme either. It was fair without an agenda.

It is absolutely implied, no question, by some. I have seen several posts on the Lyme board about those of us still living in the world of "so-called 'pandas'" I don't have the time or desire to make confronting that notion on the Lyme board my crusade. But, I do think us PANDAS parents should be able to have a place to work our problems w/o the overt and covert insults about our kids' choices and treatments. And that post about multiple ivig's by SF mom was outrageous and completely outside the realm of this topic.

WRONG ladies. Again the conversation is derailed to the comfort zone of " I thought it was pandas until I figured out it was Lyme." Not the topic here. This thread is the opposite to that point. Who was negative for Lyme and just pandas, so that would not be any of you who are having success with Lyme treatment, right? You must have Lyme/co., so that is why the original author specifically said they didn't post on the Lyme board!!! It is soliciting response from those who deduced Lyme was NOT an issue for their pandas kids, by whatever means they choose to reveal here. These are not "anti-Lyme" posts!!! Mine is not anti-lyme, go read it. These are pro-pandas posts. Again, I would ask....if it is such a problem to have a pro-pandas thread, why are you all not compelled to adamently share similar information with similar vigor on the TS, OCD, ADHD, ASD, and LD forums? Why is this just something that has to be tolerated without a word said or your branded "anti-Lyme" on the pandas forum??? Somebody please answer that.

No, I don't think I will move on. YOU have an ax to grind on this board. YOU have an agenda. You are only concerned about misdiagnosed Lyme as PANDAS? Why don't you share your story and philosophy with the clinical symptoms presented on the OCD, TS, ASD, ADHD and LD forums too??? Aren't those all clinical symptoms of Lyme? Don't you care about those children??? I find these posts of yours disingenuous and frankly, undermine the legitimacy of Lyme Disease by your extreme and relentless posting of this nature. But if that's your goal, by all means, keep it up.

You need to read more carefully. No apology nor etiquette lessons are warranted from anyone here. Neither Pandas16, PMom nor I were referring to your post about your family that you since deleted. We were refferring to the utter nonsense you chose to insert in this thread that you "got in a PM from someone else who spoke to some mystery doc about someone else's kid" AND was completely off-topic to boot. Your choice to insert that misinformation about a common PANDAS treatment on this forum on this thread was passive-aggressive and the cause of the thread's "turn for the worse." You state the disclaimer in many of your posts you do not think it is all Lyme/Co, but what you post afterward implies it is....over and over and over. If that is not your intention, then there is nothing I can say to help you avoid doing the same thing in future posts.

This is complete 3rd hand rubbish and off-topic. Members should post their own stories about their pandas child who does NOT have Lyme, which is the topic here.

The problem with Igenex (or other) Lyme et al testing is that for some, you can never "rule out" lyme to a concensus' satisfaction as long as you present with any clinical symptoms.....and let's face it, you wouldn't be here if you were absent all clinical neuro-psych symptoms. If you take an "Igenex negative result" to the Lyme forum, and report some IND bands or only band 41 positive, you could hear that result could really be positive and to keep testing with urine and dots/blots and so on or to see an llmd for treatment. Your child's results will come back and then there are sometimes choices: Your child is CDC and Igenex positive and no doubt has Lyme/Co's Your child is CDC negative but Igenex positive.... Your child is both CDC and Igenex negative, but there is that pesky band 41 or an IND band here or there Your child comes back clean as a whistle, no INDs, no positives at all (my younger dd actually had this result) For my older dd, I've spent $1200 on Igenex testing; the full boat the first time and a WB re-run. For my once very symptomatic, currently 90% dd11, I have: a negaitve tick test from 2006 (actually sent the little creep), a 2010 negative WB via Quest w/band 41+, an Igenex and CDC neg WB from later 2010 still band 41+ IgG, 31 IND with questionable Bartonella, and a repeat Igenex and CDC neg WB from 2011 still with band 41+, 31 neg. My dd had a backslide and her doc started treating her for the questionable Bart with Batrim which caused sky-high AST and ALT liver emzymes, but no behavioral changes. We stopped, doc looked at results from repeat WB, pulled her off Bactrim and said no LDs. My advice would be to examine your child's results with an open mind. I feel I have taken Lyme disease seriously through the multiple tests over years and Bactrim trial. But at a certain point, I was convinced in my child's case, Lyme/Co's is not an issue. Am I going to continue testing with urine and dots and so on; no. I'm satisfied with my Generation X skeptical and independent nature that I have come to the right conclusion for my girls. I am not going to keep testing to prove this to anyone else. Your child's results and history may lead you in a very different direction. If that's the case, there are some really knowledgeable folks on the Lyme forum to give you advise should you seek it. But if you are asking on the PANDAS forum if there are PANDAS kids who are negative for Lyme, I would say to the satisfaction of their parents and physicians, yes. If you determine Lyme is not an issue for your child, you will still have a place to work the problem as you see it. BTW-my 90% kid (who was so incredibly, severely symptomatic for 7 years) gets to 100% with steroids; I'm still working the problem too. Good luck and know whatever the results and your gut interpretation, there are lots of really smart folks on these boards to help you out.