BeeRae22

In response to your questions... 1. "If it's virus and flu related shock and not bacterial can it still be classified as PANDAS?"-- well, PANDAS- Pediatric Auto-immune Neuropsychiatric Disease Associated with Strep is, by definition, an autoimmune disease that is triggered by a strep infection. PANS- Pediatric Acute onset Neuropsychiatric Syndrome, is again an autoimmune disorder with triggers other than strep. So, no. This would technically not be called PANDAS, it would be PANS, but from where most of us sit, that's 6 of 1 and 1/2 dozen of another. Both are really clinical diagnoses. PANDAS is (a little) more accepted in the mainstream medical community than PANS. I stress little. 2. First, I am the first to point out that I am not qualified to give any medical advice, but I've done a LOT of research. I'm going to go out on a limb and guess that the Flu itself was more of an issue than the Tamiflu. I've not done any research on it- hw long does it remain in the system? If you're dealing with a PANDAS/PANS issue and symptoms, than the infection is likely what triggered the immune system- although I have heard of vaccines causing issues, I haven't (yet) heard of post infection medications "triggering" Pans... (Anyone can feel free to jump in here on that one!) --re: gluten free/dairy free diets, etc.... Many have shared great successes with modifications for allergy and anti-inflammatory diets. My dd's onset of PANS began with restricted eating so I've not had the luxury of altering her diet in any way (anything she is willing to eat she is allowed) but again, I'm going to go out on a limb here and guess that this is likely not your dd's main issue (if it's an issue at all), and while it might help some, with everything else you're dealing with I'm not sure I would really focus on it right now- especially since she's not had any allergies or issues with it in the past. I do have a friend who's son developed a gluten allergy at the age of 7, and one interesting thing I did learn from her about that, was that gluten, even the tiniest amount, can stay in the system for WEEKS. So if you're going to attempt experimentation going "gluten free", keep that in mind. 3. "Is patience my best ally? Am I doing enough here? Do I consider homeopathic treatment if I am reluctant to introduce allopathic medications at this point?" Patience is a wonderful ally when applied at the right times. (Crappy answer, I know!) I can't speak to tics because dd never REALLY had them, although she did have some facial grimacing and unusual repetitive movements when things were at their worst. --So, I'm not sure how to respond in regard to the chiropractor's methods, but I do know now that if I were considering this as a treatment plan, I personally would go with an integrative DO and not a chiropractor. Which leads me to your "reluctant" question... I think first you should have your dd tested to see what, if anything, is revealed before ou decide the course you're going to take. Only you can make that choice for your dd regarding her treatment, but my advice would be to keep an open mind especially about the things you're "reluctant" to do. I remember giving my dd her first doses of abx, and how nervous I felt about it. Here I am, a full year later, giving her 3 intracellular abx 2x a day, and I'm now "reluctant" to wean her off of them. Your perspective may change a lot through a journey like this. My dd's integrative DO doesn't "like" prescribing abx, but it's the best course of treatment in my dd's case. "Am I doing enough here?" -- yes. My answer is yes, because you're here on this board, asking questions, learnign, researching, and doing your best to help your child. That's all you can do really. 4. Just a gentle heads up that as a rule, most neurologists, even ones that "acknowledge" Pandas/Pans, unfortunately don't typically prove to be very useful. I haven't heard anything about Riley Children's, so I'm not sure if they're "Pandas friendly" or not? I can tell you that my state's excellent children's hospital proved to be completely useless in this regard, along with another facility that was actually once headed by a leading Pandas researcher I guess what I am trying to say is to be cautious with any "professionals" in the beginning-- most that claim to "know all about" this one probably don't.... This is an incredibly complicated disease. As far as telling your daughter, go with your gut- you know her best. I would give her some amount of explaination but keep it simple like you mentioned. If she's having neck jerking than she's likely aware of that already. You may want to ask her about it in a casual way. "Is your neck bothering you today? Sometimes when you get the flu..." Does she have ocd? Sounds like you're mentioning tendencies already. Most Pandas and Pans kids have had tendencies in the past that become severe during exacerbations. Keep a close eye on her if you suspect. Ocd doesn't always look like what people expect it to (hand washing, neatness, organizing, etc.) when my dd's Pans exacerbation started, she kept saying her throat hurt and she couldn't swallow well. Naturally we thought she had something wrong with her throat. She eventually even had an endoscopy, which of course revealed nothing. Turns out, it was ocd talking, telling her she would choke if she ate anything. This came out if nowhere, and we had no idea. And she didn't express it that way either, she just kept saying her throat hurt (much later she did reveal that she was scared to eat). Ocd is a sneaky, lying, cheating anxiety monster. Be careful of it. Best if luck on the 20th. Keep reading and asking... You're doing the right things.

We've been talking (her specialist and I) about transitioning her from abx to herbals. Very slowly. I am nervous to try this, because I don't want to learn the hard way, but even after a full year of abx I'm still not completely comfortable with it. (Of course, I'm much more comfortable with abx than I am with her raging and starving though). I'm feeling like she's stuck, and I don't know which way to turn right now. Definately not interested in going backward-- weaning probably isn't the way to go, but we're not seeing any progress lately either. What is CSA? I'm fairly new to herbals. Waiting to hear what her myco p and c4a levels are going to be, but just got a call re: WBC which has again dipped down low to 4.3 -- was back in range at 6.6 in September, which was actually the time span that she was doing the "best" since this started. Sigh. Any thoughts on that?

Yes, PANS is basically PANDAS with different triggers. If you research this board you will find that many members are dealing with a wide variety of trigger infections and that have not had anything to do with strep. How old is your son, and what led to his Pandas diagnosis? Best wishes....

No reactions, she is actually still on Bactrim, along with Zith and Mino. She also takes Cla-k and Drainage tone for detox, S-Acetal glutithione and of course probiotics.

It's now been 1 year since dd (just turned 9) has been treated for confirmed myco P and suspected Bart, (we haven't tested positive for it but is symptomatic). So far, Tried just Zith, Zith & Augmentin, Zith & Bactrim, and finally Zith & Bactrim & Minocycline combo. It was the addition of the Mino that finally brought results for her. She's been on this combo since June. Overall great improvement. Minimal behaviors with the exception of recent flare from a cold virus going through our house, but doing well. However, she seems a bit "stuck". Hovering quite a stretch away from baseline, she has "new ocd", and still has underlying anxiety issues and some odd behaviors now and then. What now? I want to take her off some of the abx, but I'm afraid to at the same time. She's still not close enough yet, but a full year on heavy abx is starting to weigh on my mind too. Wean her off? Try something new? I don't know what to do. Waiting for blood work results and will take it from there I guess, but I'm just wondering if I'm overlooking anything. We still have possible methylation issues to investigate (she has 1 MTHFR mutation) but honestly, every time I think about all of that I become overwhelmed-- it just seems so complicated,

So, just thought I'd update because I am still reeling (in a good way!) about dd's blood draw today..... Picked her up from school yesterday and she was in a great mood. All night she's happy, and "normal". The whole time I'm thinking to myself "now I have to tell her that she has this appointment tomorrow" and I'm dreading it..... Finally the time comes. It's getting close to bedtime, and I don't want to spring it on her in the morning. Assuring myself that I have the Xanax on the counter to help with the inevitable situation in the morning (and wishing I had a script for myself!) I grit my teeth and I tell her. "We have a doctor's appt in the morning". I pause, and brace myself for being hit or kicked. She asks me simply, "do I have to do bloodwork?" "I'm not sure, I have to call in the morning" I lie... ready for the storm. "I know I'm going to have to have bloodwork" she says, completely calm. I tell her again that I'm not sure, explain that I have this new medicine that can really help her, etc. And omg. ... Not a single comment. Not a "face", or a tear, or ANYTHING. Continues to be happy the rest of the night.... And this morning? Same thing. Asks me if she can eat and drink, perfectly happy and calm, no faces, no hitting, scratching or kicking, no anything. Gets dressed on time, willingly and happily gets in the car, walks in, sits down, smiles at the nurse, does the draw, asks for an extra bandaid because they're cool ones, gets up and we leave. UNBELIEVABLE. I can't even explain what a miracle this is. I do not exaggerate when I tell you what a complete nightmare this has been every single time. And she continued to be happy for the rest of the day too! Wow! How do you explain that??? (Ps. She seems so incredibly happy for the past 24+ hours, but is continuing her new obsession asking "what if" questions about getting sick, being sick, germs, vomiting, other people vomiting, etc. so ocd still present, and something still brewing/going on, but this today was just amazing!)

Yes, I've been there... Many times. Checking and checking my posts, desperate for suggestions. I wish I had one for you on this one, but can only offer my gift of understanding. My husband and I have also been at odds many times regarding behaviors and consequences, etc. I am actually amazed that we've made it this far in this journey with our family still in tact honestly, because It has come very close to being torn apart a number of times since the onset of dd's symptoms. It took a long time, and many conversations about how this disease works wih my husband (because i am the one that does all the research) and many times of pointing out to him that her behaviors were out of character (which you would think he would recognize but didn't) before he started to really "get" that she was incapable of controlling herself. Even when she isn't at her "worst", she would have times where you could've promised her a trip to Disneyworld if she would get control of herself, and I guarantee you that she still wouldn't have been able to do it. How old is your dd, and does she go to school at all? My dd had school refusal issues through most of last year in 3rd grade. It was awful, my heart goes out to you. At the beginning of this year I told my husband that if she started that again that I was going to take her out of school because I couldn't do it again. (Luckily, she is doing great this year). Each day I would work on her until I could get her to school, even if she was hours late, I brought her as soon as I could get here there. I am glad now that I pushed and didn't quit, but it was so hard on all of us. Best wishes to you and your family. I know how hard it is, but if you can't agree, than see if he'll try to agree to disagree for now.... Lame suggestion, I know good luck.

And yes, please tell us about your appointment. At one time I was hoping to have dd see Kyle Williams at Mass Gen, I believe he is heading the program there?

The only thing my dd has tested positive for so far (it's been 1 year now) is mycoplasma pneumonia. She had "pneumonia" 2 summers before onset, and a history of long lasting and frequent, troublesome coughing, but never strep or anything as far as we're aware. The one time she was actually x-rayed for pneumonia, her pedi told me "her lungs sound clear" but I asked for the X-ray anyway because her cough just seemed too intense to just be a cold. I now wonder how many other times it was actually pneumonia and not just a cold..... Ironically, since Pans onset guess what? No coughing at all for the past year. Her IGG was finally in range approx 7 months into treatment. IGM is still over 5 (should be <.9 ). We suspect Bartonella as well, but haven't seen a positive test.... Yet.

Also wanted to add, for those of you beginning this journey- take notes and chart everything- behaviors, sleep patterns, diet, etc. This information will be very useful down the road.

Since I'm not qualified, I'm not offering "medical advice", but if ibuprofen is helping I would continue it. My dd's recommended dose during a flare is 400mg 3X per day (she just turned 9 and weighs 54 pounds). This seems like a lot, but when you think about it, this is probably a typical "surgical dose". But like I said, I'm not a doctor and my child's bloodwork is also being monitored every 3 months or so because of all her abx. I feel your weary desperation and fear through your posts.... I'm so sorry I've been where you are, and it's not a fun place to be. I can't speak for all of course, but I am guessing that most of us here, reading your post and description of symptoms, are feeling like we've heard this story quite a few times before, and the answers to a lot of the questions you're asking (re: returning to 100% baseline, "getting better on his own") aren't going to be the answers that you really want to hear. I'm sorry. It's not hopeless, your child can get better, and possibly even recover 100%. If you're one of the lucky ones. Accepting the possibly very long road to recovery is one of the hardest parts of this I think. As parents, when something is wrong with one of our children, we want it fixed NOW. This isn't usually one of those things that has a "quick fix" though, or even a projected amount of recovery time. I never would've thought that I would still be on this board a year later, looking for answers, researching, etc. yet here I am. I hope your journey, and your son's, is shorter. With that said-- my thoughts? take him to a Pandas/Pans doctor. Don't waste time messing around with others who aren't, or worrying about insurance, or even traveling if you have to. Start recording and charting everything-- behaviors, sleep, diet, etc. (meds if you give him any)-- you think you will remember everything but you won't. These notes will be incredibly useful when you get to the Pans doc. When you have him seen, I would have him tested as extensively as possible. There are several tests I wish now that we'd done initially so that I had them for comparison. Read, research, ask questions. Write notes and questions down. Last, and probably most important though, pace yourself. Take care of yourself. Your son needs you. This may be a marathon, not a sprint you're running. If you're exhausted from researching all night, it may be that much harder to deal with in the morning. God bless. I hope to help, not to draw a depressing picture.... Like I said, I've been where you are, and my heart goes out to you. This has been the hardest year of my life. Nothing hurts worse than having your child hurting keep us posted, I wish you and your family well.

I wish I had an answer re: rages while they are fewer and further between now (thank God) my dd still has them. I attempt to set limits for that too. With everything I've got, I keep myself in control, and my voice down. If she starts hitting me, I tell her that it's okay to be angry, but that I can't allow her to hurt me. If she continues, I bring her (drag her ) into her room. I tell her again, "if you keep hitting me, I'm going to shut the door. Do you want me to shut you in here?" She will usually, very angrily tell me "you stay here" with the meanest I'll-rip-your-head-off look. Then it's on her-- she stops hitting, or I shut her in her room. I have to hold the door closed to do this. Because this has become so routine in our sea of chaos, she will now usually go in another room and "stay away" from me once this "conversation" starts, which is fine-- she'll eventually settle (after many angry words, etc.) but as long as I end the hitting part (which lets face it, can only be tolerated to a point before you lose control yourself and that doesn't do anyone any good) than I feel like I've gotten somewhere I guess. Dd doesn't like feeling trapped either, (scares her too) which is why I give her the choice. "You can either stop hitting me or I'm going to shut the door". She can't usually "reason" or take control of herself, but I've found that by making this the routine response, it's made it a little bit (stress the word little) easier. I've been trying to find some stress relieving techniques, but when dd is raging or flaring, you can't even approach her with anything like that-- she doesn't care. I wish I could try some massage or something on her! How do you try that when raging???

In theory, yes- they would "grow out of it" but that doesn't always seem to be the case. It's all very individual. Initial visits/evaluations seem to run $1000 +/- depends on the doc. My follow up visits are between $200-$250., and we have to go every 2-3 months depending on what's going on. (Initially we went more often). We also went to CBT/ERP for many months, but I was among the lucky that got insurance to cover that. Herbals are out of pocket of course.

I know this isn't what anyone wants to hear, but unfortunately most Pandas/Pans doctors don't take insurance Because this disease is so complicated, you need the time and attention of someone knowledgeable to treat, and insurance companies won't pay out enough time per visit required for these doctors to give the patient effective treatment. Here in CT there is a very well known Pandas doc that actually takes some insurance, but because of that he has about a 6 month waiting list, and I hear that even when you finally get an appointment, you get about 20 minutes with the actual doctor. I am telling you this with empathy.... I am completely broke, and point blank can't afford my daughter's specialist, but I have no alternative. I have been paying out of pocket for a year now, and it's not getting any cheaper. You should however, be able to get most labs covered, and scripts if you have coverage for that.

There are many people more well-versed in this disease than I, but I've been on this board for a year now, and have done a lot of research. If it were me, I'd bring your son to a Pandas/Pans doctor ASAP for evaluation. Having been though what we've been through in the past year, I wouldn't mess around. You might get lucky with your pedi, but not at all likely. Main stream medicine has proven to be pretty useless in this regard. There is a directory at the top of this site for resources. The child doesn't have to have had strep.... When this is triggered by infections other than strep, it's called Pans. My daughter never had strep as far as we know. Consider yourself lucky to have discovered this site so early. The sooner you treat, the more likely you will have quick recovery. Since this is an immune response it's all very individual and unique to each child. Keep reading, asking questions and seek treatment. Best wishes!

I agree Quannie, when my dd is in a flare and out of control, nothing I offer as reward or threaten as consequence will make a bit of difference, so I stopped doing that some time ago. But I do agree with setting limits as Pr40 suggested. There is a difference between limits and reward/consequence. Compromise is okay. However, I would keep in mind that the more you give in to, and support, obsessions of a person with ocd, the stronger and more demanding they become, as trinityibella is surely experiencing. It's a vicious circle..... Take her to Wal-mart, she feels satisfied for a minute, next she's asking to go to Target, get home from there, she's asking to do something else. The hardest thing to do is going to be your best bet-- suffer through the consequences of saying no, at least to a small part of it at first, or you'll find ourself spiraling right along with her. And address the cause too-- if that's the abx than if it were me, I'd decrease regardless of doc's recommendation-- you can't go on like you are with no relief. That's not treatment. How long has this been going on?

I agree with putting together the piece, sounds like a die off reaction. I am not judging so please don't take this that way, but when I read your post my first thoughts were "omg! Stop!" It sounds like ocd is not only running your daughter's life, but it's running yours too again, please understand I also have a child with severe ocd, and at times severe odd behaviors, and I know that sometimes saying NO just isn't worth it. Maybe start slow, and start saying no to some little things.... "I'll take you to the mall, but we're only staying for an hour, and were not buying anything today" -- I don't know the answer obviously, but I doubt that giving in to all of her obsessive thoughts is helping her anxiety anyway....When my dd is flaring or in exacerbation, if its not one thing, its going to be another that she's focusing on or obsessing about, so I've learned to give in only when it's at least somewhat convenient for me. Shopping for and buying clothes that she won't even wear isn't helping anyone! Give her a little ERP-- "I'll take you tomorrow, but not right now". People with ocd feel better when they have more control too. Instead of saying no, give her some options- I don't know what she feels "fills her time", but I would find a few things that don't include running around and spending money, and offer her those choices or nothing at all. You have to start somewhere, no one can live with what you're doing right now.... Is your dd in therapy/CBT? I would also talk to her doctor about her behaviors and back off some of the abx, or decrease dosage. It may be that her body can't dump the toxins fast enough. I just fund out that my dd's antioxidant function is tanked, so even with the abx working, they're causing problems at the same time Good luck-- I feel for you, I really do. You have to stay strong..... One of you has to stand up to the ocd monster.

First, If your neurologist will only acknowledge Pandas/Pans as "theory", I would recommend moving on immediately. You've probably already reached the end point with them. The "deviation in literature" you're finding regarding treatment is easily explained by the nature of this disease itself. There are different triggers and varied immune responses so it is all very individual. No one responds the same to treatments. What works for one person doesn't work for another. However, depending on the trigger infection, there are favored treatment protocols. IVIG seems to work for some and not so much for others. I would've tried it with my daughter when her condition nearly hospitalized her last year if I could've gotten insurance to cover it, but without a positive strep minimum, that wasn't going to happen. Even with a positive strep it would've been difficult. Mixed reviews on CBT. Some rave about it, but most seem to feel that it's not very effective for Pandas/Pans kids, especially during exacerbations. My daughter has done CBT for 8+ months straight. Did it help? Hard to say really. Not when she was in the thick of it. Maybe a little as she's been improving anyway.... I actually wrote a whole research paper on it for a college course I'm taking, trying to answer the "effectiveness" question, and I had a "live" subject! I still can't answer that one! To answer your questions.... We started treatment for dd about 2 1/2 months from onset. She's never had strep that we're aware of. The only thing we've "found" is mycoplasma pneumonia, although we suspect Bartonella as well. Her C4A level is 6,000+ after almost a year of abx, (should be < 2,800) so we know she is fighting something-- assumably chronic Lyme. Her myco p IGM is finally within range but her IGG is still really high. Still on intracellular abx combo- Azithromiacin, Bactrim and minocycline. Also herbals for detox, and supplementing S-Acetal Glutathione (based on Spectracell results), and of course probiotics. "How was your success in eliminating symptoms?" "To what extent did your child return to normal?" -- these are huge questions for parents of Pandas/Pans kids. I don't really like to think about them honestly but I'll try my best to answer.... After about 8 months of emotional , my dd started eating again (a little) and became less aggressive, most of the raging stopped, and we finally saw an overall improvement. Now at 14 months of this, dd is doing much, much better. However, she is currently in an flair, and is having some ODD behaviors, her ocd has kicked up again (with a whole new "germ/sickness" focus that she's never had before), and she's fatigued and scared and angry a lot of the time I would say that prior to this flair though, she was probably 90% back to baseline? (I can't use the word "normal" anymore-- we've passed that point of return I think, as hard as that is to accept). Even if your child's symptoms have "leveled off", I would urge you to find a competent Pandas/Pans doctor and start treatment right away. Most victims of this disease experience waves of symptoms in waxing and waning patterns. I hope for your sake that you're one of the lucky ones and this doesn't happen for you. My dd's exacerbation took about 2-3 weeks to really rev up, and then it roller coasted severly for the next 8 months. I definitely would've started treatment earlier if I'd known what was happening. This board is a really great resource. Keep asking questions. Do your research. Only your can decide the best course for your child. It can be difficult to assume that responsibility when it comes to medical issues, but most here have found that they have to "create" their own team of doctors, therapists, specialists, etc. to help their child. Best wishes to you and your family.... And Happy New Year!

One year ago tonight, on New Year's Eve, I was sitting in this exact same spot, in my bed with the lights off and the silent tv on.... A desperate mother scouring the Internet trying to figure out what was happening to my daughter. She had been fine, until mid October. Then she stopped eating. She began raging. Hitting, scratching, kicking. She hated school. She was depressed. She picked her skin raw. She cried out in her sleep. She was afraid all the time. She was starving. I was terrified. Some time after midnight I came across some information about Pandas. A big, bright lightbulb went off. This was it!!! I knew instantly. We've come a long way since then. Dd is finally eating again. She is flairing this month from a cold, but I now know that she'll get through it. We're haven't reached the end of this road, but we will.... One day. I am not sad to see 2014 go. This has been the most challenging, difficult and heartbreaking years of my life. My heart goes out to anyone who might be reading this, because that means that you've been touched by this awful disease in some way. May your new year bring progress, health, love and peace to you and your families. Thank you for being there. God Bless.

Well, I am definitely open to rewarding/bribing- anything you want to call it and I've tried that in the past, but as soon as she gets wound up, it seems there's no changing it. it may be a good idea to discuss it with her, but there never seems to be a good time to do that-- just the mention of bloodwork immediately gets her going. I'm considering giving her the sedative before even telling her about it this time. We've never tried sedatives before, so is is an experiment. Dd has been on abx for almost a year now, so she's had to have blood draws every 3-4 months or so. I haven't figured anything out yet to make it easier,and the last few times I think I just suffered through it and didn't bother attempting any strategies because I feel like nothing has worked. I like your "challenge chart" idea. I always struggle with choosing suitable rewards for those kinds of charts though. But we did make morning routine charts this school year, and my kids both really liked the idea and responded to it (for awhile). This might be a good time to start a new one.... Just in time for the new year too. Maybe I should come up the new chart ASAP, and the blood draw will be an opportunity for her to earn extra "checks" on her chart. This could be helpful (hopefully along with that sedative! )

We use the cream too, but like you said it's not so much the actual pain as it is the IDEA of it is Klonopin a sedative? I'm not even sure yet which sedative her doctor prescribed- I just know she needs something to get her through! Too bad I couldn't give her a shot and a beer usually works for me!

911m- I really liked your idea of taking a moment to really evaluate and set goals. I think it would be helpful to dd to know what we are working on, and what the plan is in general. We have just been going and going, and it seems endless! Although our primary focus has been food and eating regularly again, we've now made substantial progress with that so we were moving on to behaviors, skin picking, etc. I think I would like to talk to my daughter about it. Sometimes it's easy to forget that although she's only just turned 9, that this should be about her goals as well. What can we do to help her, in her opinion? Maybe if she's more involved in the decision making about therapy it would be easier for her. And also knowing that we are going to do X amount of sessions to work on X. Interesting. Right now, the flair isn't helping, and she's wound up about going back and talking about skin picking again. I do want that issue worked on, but not at the expense of the anxiety she has about taking about it again right now, if that makes sense? The anxiety about it is worse than the actual condition. During her worst initial exacerbation it was really bad and concerning, but it really isn't so much right now anyway.... I also agree searching_for_help, that continual therapy may be making her feel hopeless at this point too.... Maybe just telling her that she's doing really great and doesn't need to go anymore for awhile might be helpful, right? Power of positive thinking??? Thanks for the responses everyone! I appreciate it!

Dd has an appointment for a blood draw coming up soon. As many times as she's done this, it's still horrific every time, She goes into fight or flight mode, panics, has odd behaviors, kicks, scratches, and it takes the better part of a day to get her there, and get her to a point where she'll finally wear down and let them do it. I will have to take a whole day off from work to go which i cant afford. dh is useless when it comes to this kind of thing because her can't handle it. It's just terrible. I can't be angry with her, she's a little girl who's terrified of having a needle jabbed in her and having blood drawn, it's not fair. I've asked for a sedative to give her this time I hope it works. Anyone have any helpful suggestions? What do you do to make it easier?

I had a thought today that I haven't really had before..... Maybe a deliberate break from therapy would be beneficial? Dd9 has had Pans since mid Oct 2013. We didn't know what was happening initially, but did take her to a therapist to help with what she could. That first therapist openly admitted that she was not well versed in whatever was happening with our daughter at the time. But my daughter liked her, and she was in our hometown and it was a "positive appointment" each week for her. In March, I finally got her in to see an evaluation team at Yale child studies. I was ecstatic, I really believed this was going to be great. We hauled ourselves over to New Haven 2x each week for about 5 months for CBT/ERP which was quite an ordeal because just the drive alone, not inc, parking, walking, picking her up at school, etc., was a full hour each way- so this was a minimum 1/2 day commitment each time. This turned out to be a huge disappointment. (I could elaborate extensively on that point, but not entirely relevant to this post!) we stopped going to Yale in August. In late September/early October, I again came in contact with another therapist that seemed very promising earlier in this journey but had been unable to take on new patients due to personal reasons. Once again, I was very excited about this therapy, she seems very knowledgeable about ocd and anxiety disorders, acknowledges Pandas and Pans, and utterly crazy herself, but wonderful. I've been bringing dd to her 1x each week, and it's a reasonable drive. Here's the thing though. Dd was doing GREAT until a few weeks ago when she started flairing-- everyone in our house, including her,has a cold. Her most severe issue has always been fear of choking and swallowing, and she's made tremendous progress with this in the past 6 months. For the first time, this flair is bringing with it new fears of germs/sickness/vomiting/health. During her last visit to the therapist, the therapist tried to address skin picking with dd, (a mild but concerning and ongoing issue) and apparently made a comment about it being "unhealthy". Well, that sent dd right over the edge, and for the first time, she completely shut down with this therapist, Laid on the floor, wouldn't talk to her, etc. This happens. I realize this is part of therapy, But the therapist wants to keep pushing her, and i dont know that i agree with pushing her while shes flairing. ? and dd now doesn't want to go back, Well, part of her does. She actually really likes her, and picked out a gift for her the other day. But I was giving her (and me!) a real break on this holiday vacation time, a break from therapists and doctors anyway, so we haven't been back yet. (This happened right before Christmas). Taking this break has me thinking though..... Is all this therapy worth it? The picking up from school, cutting into our already limited evening time at home? Is it even helping??? Is going every week causing more stress by focusing on anxiety and worries instead of just trying to live a normal life? I wonder.... I'm wondering how many of you bring your children to therapy? How often? At what point do you say enough is enough already? Do you go every week, year after year? Dd certainly still as a lot to work on. And I do think therapy has been helpful, so I'm not knocking it completely! I'm just wondering if you can reach a point where even if you still have issues, that it can be counter productive? Too much? And how do you determine if its the therapy helping, or the meds and treatment? I think I am going to try cutting back to every other week and see how that feels. We can always pick up again I suppose. I'm curious to hear other's thoughts on this subject though. Is it worth it?

Funny that you should post this , because I was just considering having another talk with my daughter about everything that's one on in the past year, including her Pans diagnosis. My dd's symptoms started just before she turned 8, and she started treatment 3 months in. As time went on, explanations have been necessary, because for my dd at least, not knowing (and her imagination) can be worse than the truth, She's on 3 different abx, and has routine bloodwork (that's never gotten easier) and numerous visits to her Pans doc and CBT therapists, so she needed to understand "why". I don't tell her that her brain isn't functioning properly, but she is aware of basic facts: she has an autoimmune disease (I've explained in simple terms how that works), and that her feelings and emotions are sometimes affected by the disease, and cause ocd and worries that aren't real. She knows that she wasn't like this before, and that hopefully with treatment she will get better. I was thinking that another talk with my dd might be helpful because she's been flairing again from a cold, and I think she experiences feelings of guilt after she's lost control of herself and her behaviors. I think a gentle reminder to her that I understand that it isn't "her" acting that way would be beneficial. She doesn't want this to be happening any more than I do, and I think it helps her to "feel better about feeling bad", if that makes sense. With that said, you know our daughter better than anyone, so you should do what you think is right for her. It may depend on where you are in this journey too, timing is always a factor here Best of luck....