Megs_Mom

I think our dd has mild sensory sensitivity - always. But when she gets PANDAS, it turns into a disorder, that can be diagnosed as SPD. We ended up in OT therapy for over a year, along with everything else. It was fun & did help - but it went away or back down to normal level after antibiotic treatments. She was SO sensitive to being "yelled" at, that we developed a new term "is that regular yelling, or Megan yelling" - we'd ask her that all the time. She would literally have panic attacks about loud noise. We had to leave movies, avoid alarms, etc. Noise and light were issues, and clothing went off the chart. During times of crisis, we always had great tools through ERP and OT to help her deal with things - but literally everything about how we managed a day would completely change. I was incredibly organized in those times due to necessity. Afterwards, I can never believe we made it through. My husband is also hyper sensitive to noise (maybe I need to slip him some antibiotics ). I hate traveling with him, as I can't eat anything like a pretzel, apple, type on my computer, etc - I can see him physically react. Drives me nutty, as I really don't think my chewing or typing is that offensive! He is also always telling kids to be quiet, calm down, etc. When my daughter was a baby, you could see her screams go righ through him - annoying to me, nearly intolerable to him. He also talks in a way that I often struggle to hear him - I actually had my hearing checked, early in our relationship, as I thought I might be going deaf, and was tired of saying "what, what?" all the time. My hearing, by the way, is fine. My singing voice - well, let's just say that I think we have identified a clear connection here!

There are some workbooks that can be good starting places even before therapy - they may be too young for him, but in general they have been well received up until around the age of 13. You can check them out on Amazon to see what you think. for General Anxiety: http://www.amazon.com/What-When-You-Worry-...5520&sr=8-1 for OCD/Anxiety: http://www.amazon.com/What-When-Brain-Stuc...5644&sr=8-1 I have a much younger child, but we have 2 friends with pre-teens, and they have done very well with therapy, although they were not happy to go at first! I think they try to keep it pretty matter of fact.

If you do have strep, then the return to square one may be a result of exposure to your strep.

Hey - I was thinking about you last night as your post made me feel so sad. I know how hard it is just to communicate with a doctor about what has happened - I often felt like they'd make a decision early on in the appt, and then just listen for the confirming info, especially once we started therapy. I tried so hard not to sound like "the nutty mom" - but found it hard to convey both urgency of the crisis and the logical information at the same time. So we did a spreadsheet for our daugher, that covered 5 years and laid out the medical challenges, medications and the neurological/psychological issues along side. Once we did this, I was able to stop talking so much in an appt, and just let the doctors see a summary of the 12 inch thick file, and then just answer questions. This helped a ton, and also seemed to make doctors take us very seriously and stop condescending. I saw Dr. T's file, and it is similar to what we did (different format). If you'd like a copy of ours, PM me & I'll take the identifying stuff off it & forward to you. We also wrote up a 1-2 page summary and attached that to the spreadsheet.

Wow, I am impressed too! That's actually kind of shocking from a psychologist. We use a gummy Omega 3, from Nordic Naturals. Not fab tasting, but not bad. We built up to 4 per day, 2 in am, 2 at night. We also use a Gummy multi & a gummy D. It's like a candy store in our vitamin cabinet

I just wanted to wish you well, where ever this search may take you. I think second opinions are always wise - and I also think that exploring both paths might be wise as well. Any of the options will be difficult and sometimes heartbreaking. I'll just pray for you that you find the right answers for your son, and that I so admire you for your advocacy for your child. Seizures and Lyme are both really serious, and ruling them out as contributors is important. Sounds like you have a lot to process. Whatever you learn, you'll still be a part of this community & I hope you will still come here to share your story & to get support during your search. We'd love to hear what you do next, and many of us may learn from your decisions.

We found that ERP was a very helpful tool (not a cure) at different levels both in an exacerbation and when she was in remission. She sheds OCD pretty easily once the antibiotics are working. What part of CT are you in? Or what are the 2 closest cities? I'll see if I can get a good recommendation fo someone good with kids. Our daugher is 8 and can understand and process ERP when not in a panic. It was also a very good tool for us as parents, so we knew how to better understand & communicate with her. I think a great starting place is the book on the other thread "What to do when your brain gets stuck". It's a workbook for kids and it's very well written. My daughter loved it.

The book I mentioned was about Streptococcus itself. I'm sad to say there is no medical textbook on PANDAS, something written by doctors for doctors. I want to write or edit one. Long overdue. Does anyone want to help me? Work in the publishing field? Dr. T The strep book is nervewrackingly dense! It is likely great if you have a medical background, just as a warning for laymen like me. I ordered it (found a used one) and am SLOWLY starting to read it. I agree, a book would be wonderful - more focused on the medical side of PANDAS rather than the antidotal story. I have to say that while "Against Medical Advice" is a great read, it is heartbreaking to a PANDAS parent. You want to scream "PANDAS, PANDAS" the entire time. Maybe not, but that poor kid was born at the wrong time. On the positive side, he is doing very well today. But what a way to get there. PANDAS is not mentioned or considered for this child - but it started before Swedo began the miracle of diagnostic criteria. Be sure you are ready to cry and rage when you read this one. It will completely enrage you about the levels of medications that he is given that clearly hurt him even more. A couple of scenes gave me cold chills.

Does it actually look like a cat scratched him? There have been a lot of posts lately about Lyme disease - I'm not an expert, but maybe PM Lymemom. I googled it to see what it looked like the other night. Very odd looking rash - really like cat scratches. Maybe you mean literally HE is scratching so much it looks like this, but thought I'd mention.

Have you been to the PANDAS forum? This sounds like a compulsion, given that he is upset when he cannot get feedback from the "tic" happening. Perhaps you are having an OCD exacerbation caused by PANDAS (or Lyme, Lupus, etc)? Might be worth checking this. Also, have you done ERP therapy for his OCD? I'm so sorry this is such a difficult time.

My daughter cannot spell in an exacerbation. I kind of ignored this at the time, but it has now vanished, and at age 8, I am finding that she is an astonishing speller! Her handwriting is now completely back as well - and she has quite nice printing. She had her review at school today, and I learned that she is at the top of the class in spelling. Very odd to realize! Honestly, the least of my concerns were spelling & handwriting at the time. But its a very nice side benefit for her.

Great job Melanie - you have fought so hard for this!

Through our elementary school experience, middle school experience and now high school experience we've been through many different psychs, all well respected among their peers. We tried all manner of learned coping mechanisms and tricks to disassemble his ocd/anx. Nothing worked...nothing. However, once he was in a recovery phase at the tail end of the middle school exacerbation, I would apply some of the therapies that Tamar Chansky wrote about in Freeing Your Child From Anxiety. Only then did they make a dent and I know it was because his brain was functioning, physically, closer to normal. Again, I can only speak for my child, but he continually is aware that when an exacerbation happen the way he thinks changes. He's aware that a few weeks ago his thoughts were different and not stressful. Since we've been historically blessed with nice long remissions, I can tell you when the exacerbation ends, we have a kid with zero residual damage both physically and emotionally. I think that is what separates PANDAS driven ocd from other typical ocd and why psychological treatment, in our case, needed to differ. Sadly, we never found the psych that could understand that. My approach is to fix the physical impairment while offering all of the comfort measures of psychological support that I can think of because when the physical problem abates, he processes information normally and flourishes. As with every aspect of PANDAS, I think it is important to list the tools and acknowledge that they work differently depending on the severity and stage of the child. We were blessed with great psychological support & were able to use ERP very effectively. But NOT as a cure - as a tool to get through the days. To get to a party, or to touch the playground, or to stop washing till she bled. Or to eat. Just getting through an otherwise impossible day. Once we FINALLY became blessed with Medical help, then we did find that shedding residual OCD was really easy using ERP tools as a support. Maybe she would have shed as quickly - maybe not. She is really good at them now, and during the 2 minor blips, those tools have served her very well. We actually use a version of CBT to deal with all kinds of childhood "woes" now, and it helps her think through a lot of situations. The workbook we used at home to help her understand what was happening to her (which was a huge relief to her) is called "What to do when Your Brain Gets Stuck".

Edit - ok, it took me a few hours to get this posted while working (who me?) and I see that you have answered this. Thanks! Hey Alex - can I ask about the comment from Dr. K - because that is something that I worry about a lot, and yet struggle to justify. I am referring to the "no cure without IVIG". We have clinical diagnosis of PANDAS, classic signs, but no positive ASO/strep, onset with ear infection each time, positive CamKinII, high ANA that goes down with antibiotic treatment. Almost subclinical on Pred Burst, subclinical with antibiotics (Azith). 2 Mild episode completely treated with Azith increase (one for 8 days, as I waited for 3 days, then next for only 2 days, as I treated IMMEDIATELY as the mom suspected strep coincidental to very mild uptick in compulsions). We are only 5 months in remission. So, I can't see justifying IVIG when we are at 99% - and we don't qualify for insurance (at this point) as there are no underlying immunilogical challenges that we can find. And yet are we giving her the best possible chance - always the question. We are frankly very afraid of taking her off antibiotics. We are currently doing daily tracking to see if the mild episode trend is related to the amount of Azith she is taking, as I suspect it is. If so, that would seem to indicate that we are treating her with anti-inflamatories. I hesitate to post about this, as it is completely just a suspicion on my part at this point. We are debating the correct amount for her - if preventative only, then her low dose is right. If treating something, then she needs more - and then I would have a different thought process about IVIG and the investment needed. It's a hard thing to test without taking her off - I am just not willing to do that! So we are probably 3 months out from proving a point... If I understand correctly, he would say that IVIG is still needed, right? Do you understand about his basis for thinking this? Thanks SO much for posting!

PM Buster, in case he is off-line for a few days. He knows everything!

She's really doing pretty good right now, better than all of 2009! I think the getting aggressive with abx at the end of the year and upping the prophylaxis has helped a lot. She's stabilizing into a PANDAS lite. (I know that's all relative). We've just seen a couple of bouts of aggression a day, and those are short lived and brought under control pretty easily. She's just so much happier and less anxious. I'm wondering if I can find a way to adapt ERP for a child who cannot supply much feedback. She seems to understand, just unable to communicate back very well, and I don't even know where to find a therapist who could work with that. That is so great to hear! What sort of "level" is she on, in terms of processing information when she is healthy (limited PANDAS)? We've done ERP for so many ages now, and have a few contacts/books that we might be able to recommend, depending on how you normally teach her. I know she is a teen, but am not sure if I have a sense from your prior posts about what kind of processing she handles best. Given her situation, maybe having a great teacher who is qualified to use tools that already work for learning with her, combined with a consult with an ERP therapist might make the most sense for her? When we worked at different ages, the strategy I found to work well, was to have a good ERP therapist, and then sort of adapt the tools into age appropriate games, stories, work, etc. We usually went backwards about 2 years from Meg's actual processing level when we were doing ERP as the severe OCD seemed to cause her to regress emotionally by about 2-3 years each time. So when doing anxiety/OCD work, we often went backwards a little developmentally, so that she could better handle it.

I find this chart very helpful when thinking about what to try next and what kind of time frame to give a trial: http://www.latitudes.org/forums/index.php?...amp;#entry52997

You and your son are on my list of personal heroes. Congratulations, I could not be happier for you. Thanks for the wonderful update. Meg was a 28 at her worst - and the idea of anything higher than that was very frightening. She is now subclinical as well, and we pray to stay there. Using the Y-Boc scale was a very helpful tool to convince doctors that something other than regular OCD was going on, as her score would change by 18+ points overnight. That is a clinical definition of PANDAS, not the waxing and waning that some talk about with regular OCD, which can be a 5-10 point swing

That is good advice. Also, we spent a LOT of our time focused on what "we want to do" as opposed to "what we don't want to do" (OCD related things). OCD "work" was only 30-45 minutes of a day - and then a lot of time spent exploring the positives that we could have if we were not fighting OCD all the time. We also did homework listing things that she wanted to do - we'd work on that everyday, and then try everyday to do something - at least a simple one - on the list. If OCD is a huge part of your life, then learning to live again can be challenging. What will you do with all that time that is now available! They may need to be taught how to live "normally" again, especially if they gave up a lot of passions over a few years. Joining a club at school or trying a low level sport, simply going to libraries, concerts, eating a new food, watching a fun or scary movie, going to the park, getting a dog (yep, I am that mom!!!) - all of those kinds of things can be helpful when treatment is working to give them something new to focus on. Congratulations on finding a treatment that is helping your child shed OCD - life really does get better!

YES! And I am so glad you are showing early positive signs! Give it another 3 days & then call it a sucessful intervention. And by the way, 5 weeks is EARLY! I am embarrassed by all you guys that are "on it" so early in the disease. That's what antibiotics did for us - stopping the "slam against the back of the head anxiety" and turned it into stuff that could be dealt with. Hope to hear this continues.

Just wanted to add my heartfelt sympathy. I follow your story closely, and was afraid this would be the result. I admire your determination to get to the bottom of this, but I know how hard it must be to find that all three kids are testing high. Thinking of you.

This is such a great question - something we think about a lot. We did not use SSRI's because of this question. If the typical PANDAS episode is 6-12 weeks, and it takes 4-8 weeks for the SSRI to work, then you could just be seeing the PANDAS waning from an exacerbation vs the SSRI actually working. And then if you keep giving it, even though the underlying issue is there, then what will the SSRI cause? I have been looking for research studies on the effect of SSRI's on kids who do not have anxiety disorders, so that I could better understand what you could expect to see. This is beyond the question of activation, of course. Look forward to seeing what answers you get on this.

So long as he advised appropriate treatment, I would take PAND!!! Ill be there with a big sign ,,You know what bothers me is the TS society is hosting this. Melanie

I AGREE!!!! OCD IS A SYMPTOM!!! Yes! Ok, now that I have calmed down OCD is a fairly common neurological indicator of auto-immune illnesses - I would guess that tics are as well, although most of my time is spent in the OCD research world. I really think if Sudden Onset OCD occurs, there will always be a medical reason - you just might have to search for it. While we were strugging to figure out if Meg had PANDAS, I obsessively (wonder where she gets it!) researched autoimmune illnesses because this felt so medical. Anxiety disorders are one of the top symptoms of autoimmune illness. Parents and practioners should be looking at Lyme, Lupus, Thyroid, Celiac, Wilson's, etc. We only fully accepted PANDAS after everything else had been ruled out as possible additional issues. And even with a PANDAS diagnosis, we are all (docs, parents) concerned that this was an early wake up call for possible Lupus due to high ANA levels. We are not freaking out - but we will test this marker every year to be sure we are not missing anything. What is frightening to me, is that not a single doctor, for years, despite clear medical records, ever used sudden onset OCD as a indicator that simple medical tests should be run. We had to figure that out on our own - and then one clue finally sent us to a good Neurologist. Someday, I hope that sudden onset OCD is like a bad rash - a sign that doctors will then explore for cause.

I just registered - thanks for the heads-up.