HT's Mom

Sharon, I will PM you, sorry I just saw this.

Arial95, I am so happy to read this from you!! I have been so curious about the tonsils issue lately. It was never on my radar until recently, but I keep hearing success stories, and reading articles about it helping Pandas, so it is great to hear this from you, at least so far!

Dedee, If as you say insurance will pay for IVIG, and you are already familiar with it with your daughter (BTW, did they help her??), I would definitely look to have the treatment for your son. It is so low risk, and if it helps, which it should since it sounds like you don't have a lyme issue, you have treated him young before he suffers more over time and gets worse. CBT will not help tremendously without clearing the autoimmune problem. And you can always try the CBT therapy afterward if necessary. Do the IVIG first and see where you are. IMHO, of course...

Melanie, First of all, it's only been one day or so, right? I know how frustrating and scary it is to see him like this after all you have been through (watching my son freak out over stupid things like the ipod is maddening, I know!) but try not to panic yet. It takes time to heal. But also, did you mean that you are doing IV tomorrow or IVIG? I can't remember what your plan was from the other posts. If you meant you are doing IVIG next, it will probably help the whole process, but even that can take some time to see improvement. Try to hang in there - you have been so patient and brave, updating us all every step of the way of his pex treatment. We are praying for you.

Hi everyone, I haven't posted in a while but have been following the forum. We had a few months of wavering on what to do next with our DS16, and finally went ahead with his second IVIG. I will give a quick recap: One of my identical twin boys, now 16 years old, is a PANDAS kid. Earliest episodes were probably around five or six years old, but they went unnoticed by us as anything but behavioral weirdness. At age 11, major PANDAS episode that escalated over about six months from minor tics to full on OCD and vocal repetition. We were terrified and did all the doctors, unsuccessfully, until we discovered PANDAS, finally. Treated with two weeks of penicillin and everything disappeared. He was 90% + for the next four years. Then last winter, OCD and tics started up again, and progressed pretty quickly. It was different that time, more internal intrusive thoughts, total ADD, anxiety, lack of motivation, severe tics. We ran all the strep titer, lyme, myco p, cultures, immune system tests. Nothing! Negative or normal for all. But ds was probably exposed to strep over the holidays last year, and had his wisdom teeth out just prior to that. We did IVIG with Dr. K in May. DS had a pretty severe vomiting and migraine episode afterward, but was completely fine within 48 hours. Over the rest of the school year and summer he improved tremendously, as far as DH and I could tell. Tics decreased almost completely, and his overall mood, focus, etc was much better. But he continued to say that thoughts were bothering him and as school stresses started we saw him backslide into less and less focus, severe anxiety, etc. He has been on Augmentin xr ever since the IVIG, 500/day, with one episode where we increased it due to a severe symptom flare. That worked at the time, but I woke up one night about a month ago and said to myself, Ok, we can't just let it go and hope for the best. He deserves every chance to get to 100%. So after a few email exchanges with Dr. K, he scheduled him in, and we went back to Chicago from VA last week. Everything went smoothly. They gave him additional tylenol, benedryl and IV steroids to ward off the bad reaction, which worked until about 4 am Sunday night when he started vomiting and the migraine started again. Thank goodness we were home by then, and not at OHare! Anyway, he is fine now, Monday night. Now wait and see. Pray! Dr. K and I sat at Starbucks next to the surgical center for an hour or so on Friday while the IVIG was going on. I picked his brain a bit about a lot of things. PANDAS in general, Dr. Swedo's study, the TX conference, why antibiotics work even tho kids don't have active infections, insurance issues, Lyme and co-infections, fish oil, SSRI's. I tried to ask him about various things that are often debated on this forum, just to get his viewpoint. I realize other doctors have their protocol, and not all parents here agree with Dr. K's approach to some things. If anyone is interested in what he said on some of these things, you can PM me. I don't want to put words in his mouth on the forum. In general though, he is definitely an advocate of IVIG, and believes that most patients will need it eventually to stop the bad autoimmune response. I think what is interesting is that he has treated OVER 500 patients over twelve years! And from all over the world. That is more and longer than any other researcher or doctor. So, much of his approach and advice may seem standard and the same for most patients, but I believe he bases his protocol on his cumulative experience of what he has come across and what has worked over time for the majority of so many cases. Anyway, I'm very hopeful that this second treatment helps my son. I am certainly aware that at 16 it may be tougher, and if it doesn't, I will seek appointments with another PANDAS doctor for further input and care, although I can't imagine what else we can do other than further IVIG's. Ds will be on Augmentin xr, 1000 fish oil, C, E, folic acid for the next year. And a refrigerated probiotic. All dr. K's protocol. I add in D. Thank you to everyone here for the advice you have given to me, even when you don't know it, and for all the support you provide each other, especially the newbies. I don't know where I'd be without that. Sorry this is so long....

What really strikes me is that this all happened LAST THURSDAY! My god, the fact that you found this forum and know about PANDAS in that amount of time is a miraculous tribute to the internet. Just a few years ago there was so little information, it took many of us years to realize what was happening to our kids. So, congratulations, and I have high hopes for your child because the sooner the underlying problem is found and treated the better. I certainly hope it isn't lyme or PANDAs but your story sounds right - find a PANDAS doctor fast and get the right treatments early. Good luck and let us know what happens!

Yes that's right. I don't think Dr. K's codes that were submitted were PANDAS specific. So they were for encephalitas or an immune problem.

We have Anthem BC/BS in Virginia. I had feared there would be no coverage, as i had seen a number of posts that Anthem did not cover other members' IVIG's, or they had to fight hard, etc. But amazingly after having IVIG with Dr. K in May 2011, and paying for everything up front, we did get almost full reimbursement of the hospital portion of the bill. Dr. K's fee was only reimbursed a few hundred $. Turns out he is "in-network" with Anthem so they only paid back the allowable charges. But Anthem paid the hospital a lot more than we had paid up front. All very confusing and suspicious, but we were grateful for what we got!

Lately, I can't stop thinking of that phrase "You're only as happy as your saddest child." And I am sad right now too, so I hear your pain. Do try to get some help, and do check the whole family for infections. Will be thinking of you.

I think it is not uncommon to have a worsening of symptoms before things get better post IVIG. Ten days is not long enough to tell. Our doctor does not measure anything in terms of "did it work" until at least 3 months out. I would contact his PANDAS doctor about the cold and fever symptoms, but hang in there and be patient waiting for improvement.

Have you considered IVIG and if not what is your thinking on this? Have you been to any of the various PaNDAS specialists referenced on this site? Just curious to get an idea of where you are at in the process.

Yes, i just haven't had time to post, and don't right now. Will update you all tomorrow!

Oh, my goodness, you poor thing. You and your son have been through so much. I can't comment on all of the medical things you have been through or tried, but I would suggest that you try to get a conference call or email with Dr. B to give this recent information and see what he says about doing the high dose IVIG now or waiting until the strep is more directly treated. Also, ten days only of Clindoymcin does not seem long enough to completely clear this long term strep infection. Many of us do not see PANDAS neuropsychic behaviors improve before at least ten days, especially older kids with long term symptoms. Thirty days minimum is where most start as an initial treatment. (Perhaps different with Clindoymcin vs. augmentin or other abx?) I would also say that high dose IVIG could make all the difference vs. low dose for the immune issues. My own son is 16, had high dose IVIG in May with dr. k in Chicago. He is much much better than before the treatment, but age does make it harder to clear apparently and we are likely going to seek a second because of some residual behaviors/obsessive thoughts. But ds has his life back for the most part. Dr. K virtually always treats PANDAS with high dose. Good luck, I hope your son gets relief soon.

Thank you...I guess from what I am being told we should continue the abx and see what happens.... You mentioned diarrhea in another post - are you also giving your son probiotics? This is important to keep his stomach's good bacteria working well. Give at least four hours apart from the antibiotic.

"Also just so u know exactly what's goin on insist on seeing all medical letters sent by ur specialist to ur pediatrician, these are more "telling" of what they are thinking and planning on doing. Plus u will get to see what they write about u, and all ur papers and prediagnosing ur child. I may be skeptical but..." So true!! Years after seeing a neurologist about our then 11 yr old Ds and his first major, pre-diagnosis episode, I got hold of the letter he sent to our pediatrician. In his office, he was kind and understanding, and supposedly listening to us. The letter itself called me and dh the OCD neurotic ones, not our son, and stated PANDAS was not likely, even though he met all the criteria, etc.

I will ask her all these questions and see if she will sign on to tell more! She had actually approached me when we moved into the neighborhood, because she had heard about my ds through a mutual friend. So she was helpful to me in the beginning of our second round of PANDAS craziness last winter in terms of what antibiotics and local doctors would be helpful. I don't think they ever did IVIG, although we did. I'll find out more about why not, etc. and let you all know!

I see that the article in the Washington Post has been a topic in several threads, and I thought I'd put it out there that I know this mom. Their family lives in our neighborhood, and the mom and i are planning to get together next week. I had not been aware she was talking to the paper, but after it was published we communicated about it and I'm hoping to ask her more questions, update her on my ds, etc. I'm not sure if she's on the forum much, so if any of you have additional questions about their child's PANDAS, treatment, etc, let me know and I will talk to her and post a followup if she says she is comfortable with that.

I don't have anything new to add to all this fantastic advice - I just want to say that I think one of you who knows how to tag or bookmark this thread should do so so, so it can bet cut and pasted or referenced in the replies to future newbies's posts. This is one of the most thorough, say-it-like-it-is threads I've seen yet in terms of really making sure this mom knows what to do and how urgent it is to do it quickly. I'm right there with you all when I think of all the time wasted in treating my ds. Eclairuse, you were so thorough in your initial post about what was happening with your son that it really made us all feel for you and recognize the urgency of your situation. Good luck and I will be looking for your updates.

Some of you may already get the emailed PandasNetwork.org newsletter, and If this was already posted or information about this book was already put out on the site I apologize for duplication. But I had not seen it yet, and just had this emailed to me and thought everyone here would be excited to see this publication information. The link is to the PandasNetwork.org newsletter, which references this new book for physicians The book is the "Handbook of Childhood and Adolescent Anxiety Disorders," and features PANDAS in one of the chapters written by Drs. Murphy. and Yokum. BRIEF SUMMARY OF THE PANDAS/OCD CHAPTER: Drs. Tanya Murphy and Kelley Yokum - courageously lay out in easy-to-read fashion the pandas debate. They push the physician reader to think more deeply about the complexities for EACH child and warn the physician that with inaction, the consequences (at times) can be profound for a child's longterm outcome. Link to the newsletter below. There is a link in the newsletter to the actual chapter of the book. My link

Yes, I think that is what Dr. K believes, which I know sounds scary, especially to those parents with young children. I can only speak to my child, who is now 16, and, importantly, did not test positive for any other co-infections. But he was treated successfully for PANDAS symptoms with antibiotics at age 11 (and we think "accidentally aw well at younger ages of 5, 6, 7 range), and we thought that was the end of it. But his symptoms returned big time at 15 1/2. The hard thing is knowing now that treating older children with IVIG is not often as successful or as quickly successful as with young kids. I sort of wish now that we had known to do it when he was younger, but could I have made that decision then when he got so much better with just abx? Probably not. So, for us, Dr. K is right, that it came back. We did do IVIG in May, and so far DS seems to be responding well. BTW, and I don't know if this is relevant to the decision, as clearly it has to be the proper treatment decision when you and your child are ready. But just something to keep in mind if you are thinking about finances. The cost of IVIG is largely based on the sheer volume of immunoglobulin needed. So a 6'1" tall, 160 lb boy requires a whole lot more than a 7 year old, etc. It cost us nearly $14,000, plus doctor's fees. Meanwhile, i will also add that IVIG itself is a lot less scary than it sounds.

I remember seeing this video a couple weeks ago, when someone posted it on the forum. It involves a family in BC, so maybe you can find them somehow and find out what doctors finally helped them. It does sound like PANDAS to me. Having strep and bad colds last winter just when this started is unlikely to be a coincidence. http://www.ctvbc.ctv.ca/servlet/an/local/CTVNews/20110809/bc_pandas_therapy_110809/20110809/?hub=BritishColumbiaHome A PANDAS expert is the right course, but there is lots of information on this forum for the proper testing and information to give to your local doctors, so they can help support the treatment/efforts of your PANDAS doctor.

I'm certainly no expert but it is my understanding and our experience that kids with OCD and/or TS are able to suppress their compulsions or tics in public to a large extent. It takes a tremendous amount of energy to do so, (the compulsion is still there) and the behaviors almost build up and have to be let out once the child is in a safe place. We have had the same thing - none of ds's friends would know he has a problem, and my friends or family all say "he seems fine," even when I'm describing how bad he is.

You did not mention in your email what if any treatment for PANDAS your son has had. For example, is he on a prophylactic antibiotic? Here is why i ask: Your post caught my eye because of the mention of school and anxiety. My 16 year old son had been going along fine all summer, improving a lot after IVIG in May, and then a few days before school started he started having a dramatic increase in tics and general anxiety. We both thought it was stress related to the upcoming school work load, etc. But we had a conference with Dr. K, and he advised increasing his antibiotic dosage substantially for seven days, just as a matter of protocol, assuming that the flare in symptoms might be due to an actual infection or strep exposure of some sort, even if DS wasn't feeling sick. Well, after three days of the increased dosage, ds is MUCH better. Almost all ticking and anxiety seem to be gone. So, I'm thinking that rather than anxiety medication, perhaps your son needs PANDAS treatment, i.e. antibiotics. As to your questions and analysis of OCD in a six year old, I think you are right on. Although we did not diagnose PANDAS until he was 11, many of the behaviors you describe are similar to what we experienced when our son was a small child.

Sounds like PANDAS to me. All you have described sounds like classic PANDAS, and very similar to my own son's childhood, altho he is 16 now. Our doctor is Dr. K in Chicago and he says sleep difficulties are very common for Pandas kids. Always asks extensive questions of d.s. about his sleep habits. Also that these symptoms start showing between 2 and 5 years of age, even if not recognized until later. You will find many different experiences on this site, but yours sounds like the "normal" pandas kid to me. Good luck next week. It is great you are finding this now at a young age.

Yes, the twin thing has always been one of the weird parts of this in my mind. It wass one of the reasons I kept pursuing an answer when DS was first diagnosed with Tourettes, before PANDAS. I kept reading that TS was genetic, but his identical twin was showing nothing. There are still questions, tho, like the few VERY minor tics the twin has from time to time, and both of them being ADHD to some extent. And some on this board have said that PANDAS is genetic after all. But twin brother has never had OCD, multiple tics, or a PANDAS episode at all. So, like so much of this syndrome, hard to know. And wouldn't musical ability be somewhat similar in genetically identical twins? DS and I had a conference with DR. K today, to talk about where he is at now, 12 weeks post IVIG. With the obsessive piano playing, he's been ticking like crazy for two or three days, which seems connected to school anxiety. Dr. K recommended going to 1000 mg 2x day from 500 1x (Augmentin) for a week, just in case this is an infection based flare. Hope that does the trick. If not, and it really is anxiety/stress causing the flare, how is that explained by PANDAS that has been treated by IVIG? Any thoughts?