BeeRae22

Here's my two cents. It does not go away on its own. Each time it comes back, it's worse(if you don't treat). If allowed to go on, untreated, it can become permanent. That's what Swedo said at ground rounds. If you have symptoms, it hasn't all gone away. It's taken me five years of treatment to get to near symptomless for my son. The most important part of treatment was discovering exactly what was causing continued behaviors and that was undiagnosed lyme.

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.

Oh momslove,
I am so sorry. I too struggle with a similar situation. Such strain on the marriage. My husband understands only to a certain extent but then holds Ds up to standards he can't possibly fulfill. I am happy at times that our child showers and brushes teeth or joins us for dinner. I see that he is trying and suffering to just survive sometimes. This causes serious mental struggles. My H just wants everything back to normal and wants to push things to get there. Its counter productive for sure. I do the best I can to educate and keep him apprised our Ds illness and that is all I can do. It's all so complicated that even many doctors don't get it!!!! This will get better so we must all just hang in there and be strong for our beautiful afflicted children. Who could possibly understand this world we are in. Persevere!

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.

Thanks.
 
Tonight is better.
 
DH and I are talking about other important matters that we agree about tonight.
 
DD16 slept until about 4:30 pm today... She got up and put on some clean clothes and pulled her hair up because I told her that a friend of hers had told me today at school (where I work) that she might stop over tonight. Then she sat down and did some online biology.
 
DH told her he was glad she did 30 minutes of biology today. He told us both he expects her to do more tomorrow and I don't disagree.
 
Most of the time DH and I agree or accept our differences. The times when we don't are hard. Most of the time we do ok with DD and PANS/OCD issues, but when one of us "breaks" for a bit, we need a whole new set of skills for patience and communication.
 
Thanks for being a safe place for me to share and receive support.

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.

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.

I'm sorry this has happened to your child, but you're are in the right place. In most children there are underlying infections that cause the immune system to go haywire, and the trigger infection - in your case the flu - is just the tip of the iceberg. For example, our son developed PANS after a bout with pneumonia 5 1/2 years ago, but we had to uncover and treat Lyme, Bartonella, Babesia, and chronic viruses in order to get him back. We have also had to treat for mold toxicity, change his diet and support his body with vitamin/mineral supplements and glutathione. We are still treating and he is still improving, inch by inch, but we believe he has congenital Lyme (caught it from me in utero) and has had health/behavior issues since birth.
 
My advice would be to test for underlying infections and immune function asap and educate yourself on topics such as mold toxicity, methylation and special diets. It will take time, but I'm sorry to say that in most cases, this is a marathon not a sprint. Some infections to test for are strep (it can be asymptomatic), Lyme, Bartonella, Babesia, mycoplasma, Epstein Barr, and HHV-6. Others can chime in with other infections to test for, but if you find the right doctor, they will know what to look for and the best labs to use. Pediatric Lyme doctors are seeing PANDAS/PANS frequently, so that can be a good place to start for testing.
 
The one case I know of where a child has recovered completely in a relatively short time is our family friend's son. He developed intrusive thoughts shortly after a strep infection at age 8 and they called us immediately when their pediatrician mentioned PANDAS because we had been dealing with it for two years. I told them to go straight to our Lyme doctor and he tested their son for a number of infections. He had Lyme, Bartonella and Babesia. The doctor put him on a gluten/dairy-free diet and treated him with antibiotics and herbs for about a year. He is well and never relapsed. I think the fact that he'd only contracted Lyme a year prior (he had a known tick bite but they'd never had him tested) and they jumped on it so quickly when he developed PANS accounts for his quick recovery.
 
Ibuprofen and other Nsaids are stressful on the gut and liver, so I would only use them as needed. If they've helped, it tells you that inflammation is causing the OCD and behavior, but they are only symptom treatment and come at a cost. I would also stay away from Tylenol completely as it depletes glutathione, which is crucial for detoxing and immune function and often already low in these kids.

"is it possible to return to 100% without future flareups?"
 
perhaps. only time will tell. I would want to say unlikely since you are witnessing an autoimmune response. the fact that ibuprofen does wonders is an indication. autoimmuninity is more like a condition than like a one time thing or state.
 
by the way, how do you know this is a flu?
in your place, I would have a plan B in case exacerbation returns. i would do all blood tests etc, contact a Pandas/Pans dr, and, in general, begin educating yourself what this condition is.

Keep in mind that if this is Pandas related, your child has lost her ability to be reasoned with. She has lost cognitive assessibility. When my child was in the thickest grips of a flare, there was NOTHING I could do. Nothing.
 
I switched my goal from trying extract reason or desired behavior to "anti-stress" therapy. Many times this worked.
 
Joint compression therapy worked well: Just below each joint, for example the knee, slightly push the joint in and out over and over, about 10 times. Move onto the wrists, each finger, ankle. I also would gently pull on each finger to create a stretching feel. I would do this with his arms and legs: holding at the ankle (imagine the stretch going all the way up to the hip) With the arms: create a stretching feel by holding onto the wrist and pulling with constant tension. They should feel the pull all the way up to their shoulder. Do this whole body therapy for ten minute increments. Sometimes I would have to do it 3 times in a row....
 
I also did back massages with aroma therapy. Hot baths. Think DESTRESS.
 
With my son, I believe that the dopamine surge was sending him into a fight/flight mode and these kinds of things helped. It would often result in him feeling drowsy from the relief....

theolis and sriramcs---------------I REALLY WANT TO ENCOURAGE YOU.....Your kiddos can and will get better. You just need the right approach for your kiddos individual needs. You really need to get to an Integrative Pedi from this website below. I found our doc from Gahanna,OH that is now a "Leading Physician." I cannot say enough good thinks about him. I am glad we found him back then....3-4 years ago before he was considered well known.
 
http://pandasnetwork.org/researchandresources/find-help/usproviders/
 
It is a very comprehensive approach. Summation follows:
 
1) Debulk any infections(viral, bacterial, fungal and parasitic) It could be a combo of more than one. Many times it is multifactoral from infection(s) or cascade of multiple infections.
2) Cool or chill the immune response and control inflammation caused by above issues in #1.
3) Targeted nutrient therapy to give the body the high octane fuel it needs to balance what is going on, heal and function properly and efficiently.
4) Eliminate allergy triggers (foods,pets, etc) to again give the immune response a chance to chill out.
5) Finally implement a plan for dealing with future bacterial and viral infections to prevent the infection cascade that many times happens as a part of #1 that started the whole thing. I cannot say enough about Zinc, vit c and vit a as a sick protocol.
 
I, again want to say....Stay encouraged, get information, research and advocate for your kiddos. I will say don't waste time trying to chase or convice main stream medicine about Pandas or Pans. They just can't or won't deal with it. Still trying to figure out why.
 
Here are some other links that really helped us on our journey. Good luck and God Bless. Any thing you need just PM me. I hope this info helps.
 
http://www.bing.com/videos/search?q=dr+nancy+ohara&FORM=HDRSC3#view=detail&mid=B8315FFF5F842E135A81B8315FFF5F842E135A81
 
 
5-6 part series worth watching....Think about your family history when watching it. It kinda comes down to methylation as a possible link to many disease process as they relate to Neuro-Immune Syndromes.
 
http://www.bing.com/videos/search?q=dr%20kendall%20stewart&qs=ds&form=QBVR#view=detail&mid=2B4C4D2EB859CA78F0912B4C4D2EB859CA78F091

I try to answer you questions.
How long from the initial acute onset of the symptoms of PANDAS, PANS, PITAND, or CANS did you start treatment? Did the treatment include antibiotics? How was your success in eliminating the symptoms? To what extent did your child return to normal? What time frame did this take?
1. sooner the better. with dd 12 months later, with ds right away. guess which one is doing better?
2. yes. dd and ds were bad but not sever cases. so abx was the treatment of choice. ds also had steroid burst. both are on 2 diff abx
3. gradual, very gradual. exacerbations are milder and shorter. more and more normal days, after 1 year on abx
4. we changed our idea of normal. these are auto-immune conditions. with them you are never normal. sometimes, when one symptom stops, another begins and you may not really know
5. maintaining good quality of life is our goal. it requires work, special diet, supplements. etc. i'd be surprised if all that can go away and we can just be "normal".

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.

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.

In reading through your post(s), these were my "first thoughts" (for whatever they're worth )
 
Like Maryaw, I would probably consider seeking advice on another board where people may be more knowledgeable of your particular condition, ? It seems like most people on this forum are contending with Pandas and Pans symotoms, and it sounds like you have other issues to address.
 
It sounds like you've exhausted ivig and pex as treatment options, regardless of insurance coverage. Have you tried other treatments?
 
If I were you, and I'd been seeing the same psychiatrist for 10 years without results, I would seriously consider finding another psychiatrist or therapist. But that's me. Maybe you stay because you're comfortable. Perhaps "comfortable" is holding you back? Or "hope" is making you stay? These are just thoughts... I obviously don't know anything about your or your particular situation.
 
"If you keep doing what you're doing, you'll keep getting what you're getting". --now, please know that I say this respectfully. My dd has been on abx for just shy of a year now, and she is still struggling, and I do understand that certain treatments take time-- however, (again, this is my quick assessment of your post(s) ), IMHO, it sounds like you might be in a bit of a rut. Maybe "exercise" isn't the answer, but the ivig, CBT, therapy and pex that you've tried haven't gotten you anywhere-- have you tried alternative methods? Diet, herbs, abx, SSRI's, naturopathy, osteopathy? I'm just asking, I don't know the answer. I'm guessing that there isn't going to be any one thing that's going to BE the answer-- I would try addressing one issue at a time- exhausting each possible treatment one at a time until each thing is addressed?
 
Best of luck to you.... Dealing with Pans with my dd has been the most challenging, frustrating and exhausting experience of my life. I pray every day that it will get better, and it's hard all the time. Keep the faith, you will get through this. I am thankful for the support offered here, and couldn't imagine dealing with this without the Internet! With that said though, I think sometimes there's almost "too much" information. If you have ocd yourself, I would strongly (and respectfully) caution what you're focusing on too-- again, I say this with complete kindness, my dd's ocd is severe, and I am often surprised by the things that "catch her attention".
 
Good luck and God Bless.

Our dd did therapy with different therapists for YEARS. Never helped. Actually dredging everything up made her feel worse, and it was obvious to her that none of them understood what she was going through - some even seemed baffled by it.
 
Lots of money, time wasted. It actually made her feel like she must be a "hopeless case".
 
I know some on here have had success with therapy, but I personally don't feel a PANDAS/PANS person can be helped much during a flare. When things calm down for them, I'm sure some could benefit, but there was never a time it was affective for our dd.

I believe that in conditions such as PANS or any other chronic illness/state that it is OK to take a break. Sometimes it is just necesary to take a breather from the hustle and bustle and take stock in where you are, what have you achieved and where you are going. An evaluation period of sorts. I believe you answered your own question...cut back to every other week. Go from there...if better, then stay at that. You say therapy has been useful but you all sound tired. This journey a marathon not a sprint. It is OK to slow down and walk... not run for awhile.
 
My DS14 has had "issues" since age 4. 10 years is a long time. I go through periods of doing nothing and then periods of doing alot. He has to be ripe for certain situations and the things we do. Sometimes just a tincture of time is the right thing that progresses us to the next level.

this is what we did: we started CBT and went for several months. Decided to stop then because we did not see improvement, was too expensive and difficult to get to and, MOST IMPORTANTLY, because we figured out how we could incorporate CBT into what we do at home. The idea was to give dd strategies to cope when she is able to do that. For us that strategy is quite simple since you dd gets fixated on things and "stuck". Getting unstack requires changing her mind set, which she has learned to do by taking a moment to relax and breath deeply, by us giving her a time out and compelling her to take a moment. We also try to literally stop her actions when she gets, for the lack of a better word, hysterical.
So, try to identify if there is one thing that defines your child's exacerbations.
With skin picking, I am not sure what to suggest. it could be just one of the repetitive behaviors that will pass. Our dd goes back to picking her leap whenever she is in an exacerbation. when she is fine, the habit disappears. Ibuprofen 3x a day helps with this most of the time

We are currently in a therapy break. My understanding with CBT is there should be a start and stop schedule from the beginning with extra sessions if needed (?). When DS was 9 yo PANDAS/OCD hit. We started therapy about 6 months later - he was healing but not completely healed. We had previously purchased the book "What to do when your brain gets stuck" and he had been working with that prior to starting therapy. We went weekly for approximately 5 sessions when she referred us to someone that was a great fit for him. The new therapist was a good 40 min. away and didn't accept insurance. He did specialize more in CBT and I believe was more effective for our DS. We had a set 10 sessions with predetermined goals set in the beginning. We did deviate slightly based on progress and needs. The first few weeks we met weekly, then biweekly, the last few session being 3 weeks apart. We did have a flare in the middle of therapy and there was no amount of therapy that could have changed that - but the therapist was able to reassure him that this would happen, use his strategies as best as possible and wait for it to pass (it was reassuring and comforting to DS that if it was uncontrollable it was ok, just know it would pass as a medical illness was the cause). His OCD and PANDAS symptoms remain mild but present. We will follow up with the therapist as needed from here out. The therapist was helpful to DS and our entire family, but not sure I believe unending therapy weekly would have been helpful though.

Beerae-
 
I completely agree w/ you.
 
We have had two types of therapy.
 
1- we have tried several local therapists over the years. Meet w/ them once a week and talk. Usually somewhat helpful/ supportive- but after a few sessions more anxiety and depression causing than helpful.
 
2- intense therapy at USF- meet daily for 45 min- for 5 to 15 days. Not as warm as local therapists maybe- but less "talking"- mostly in session exposures- with MAJOR tangible and lasting results!

Just when I thought my 12 ds was out of the woods he started with some strange behaviors and anxiety. No strep, no infections that I could detect. Then, boom! Stomachache that gets worse and Turns out he has appendicitis. They blast him with antibiotics, they operate him and he is back to his cool self 2 days after. This Condition will never stop to amaze me. The good news is that everyone in the hospital was knew what pandas was (NYU) and were curious but matter of fact. What a difference a couple of years make!

In reading through your post(s), these were my "first thoughts" (for whatever they're worth )
 
Like Maryaw, I would probably consider seeking advice on another board where people may be more knowledgeable of your particular condition, ? It seems like most people on this forum are contending with Pandas and Pans symotoms, and it sounds like you have other issues to address.
 
It sounds like you've exhausted ivig and pex as treatment options, regardless of insurance coverage. Have you tried other treatments?
 
If I were you, and I'd been seeing the same psychiatrist for 10 years without results, I would seriously consider finding another psychiatrist or therapist. But that's me. Maybe you stay because you're comfortable. Perhaps "comfortable" is holding you back? Or "hope" is making you stay? These are just thoughts... I obviously don't know anything about your or your particular situation.
 
"If you keep doing what you're doing, you'll keep getting what you're getting". --now, please know that I say this respectfully. My dd has been on abx for just shy of a year now, and she is still struggling, and I do understand that certain treatments take time-- however, (again, this is my quick assessment of your post(s) ), IMHO, it sounds like you might be in a bit of a rut. Maybe "exercise" isn't the answer, but the ivig, CBT, therapy and pex that you've tried haven't gotten you anywhere-- have you tried alternative methods? Diet, herbs, abx, SSRI's, naturopathy, osteopathy? I'm just asking, I don't know the answer. I'm guessing that there isn't going to be any one thing that's going to BE the answer-- I would try addressing one issue at a time- exhausting each possible treatment one at a time until each thing is addressed?
 
Best of luck to you.... Dealing with Pans with my dd has been the most challenging, frustrating and exhausting experience of my life. I pray every day that it will get better, and it's hard all the time. Keep the faith, you will get through this. I am thankful for the support offered here, and couldn't imagine dealing with this without the Internet! With that said though, I think sometimes there's almost "too much" information. If you have ocd yourself, I would strongly (and respectfully) caution what you're focusing on too-- again, I say this with complete kindness, my dd's ocd is severe, and I am often surprised by the things that "catch her attention".
 
Good luck and God Bless.

dasu, best response I've read.
 
Setting limits and accountability do not work during a flare/reaction. DD already knows her limits and accountability. How do I know? Because when she is not flaring, she behaves with a recognition of her limits and accountability ... and is actually quite well-behaved. At those times, I feel like a great parent. But when the switch flips, all of that changes. She becomes almost animalistic and, although I know what is happening, I still cannot help feeling like the lousiest parent.
 
Still, the rest of the world does not deserve to be subject to her selfish whims and demands. So, something has to be done. The result often ends up being social and emotional isolation, not just for her but for the rest of the family. And then any explanation that her behavior causes certain consequences is met with "what did I do???" "I don't understand what I did????" etc. etc. -- within minutes of being completely obnoxious, selfish and unbearable. How can she not know what she is doing? Yet at that moment, I see her tears, and I dare to consider that she really really does not comprehend how bad she is being. Then I feel sorry for her, but at the same time, you cannot just let this stuff slide all the time.
 
There is also the consideration of her own social relationships. When she was younger, you could see that people just excused her behavior as typical childhood tantrums. But as she gets older, people tend to expect more. They expect age-appropriate behavior. And when they see very age-INappropriate behavior, their first thought is never ever, "Oh, she must be suffering from brain encephalitis." It's usually something along the lines of her being selfish, a brat, spoiled, lacking discipline, and above all, the result of bad parenting (of course). "If MY kid did that, I tell you what I would do...." is one of my favorites.
 
We don't feel the necessity to try to explain what we are dealing with to other people who really have no business knowing, however at the same time, them NOT knowing means that we as a family are often judged unfairly. If she had some physical ramifications of her issues, it would be easier for people to have compassion. But because what she deals with is "invisible", it creates a false sense of reality. And sadly, human tendency is not to extend extra kindness. (Heck, why should they? When I often have a hard time with it myself, and she's my kid.)
 
When she is not flaring, she is the best kid in the world. She is sensitive to others' feelings, she is compassionate and thoughtful and always, always sticks up for the bullied kids at school. I am so proud of those moments. I try to remember that --- and we really really try to remind ourselves that that is the real kid, not the one that we see during the bad times. It's hard, but we know that she is in there somewhere, and probably trying really hard to come out.
 
One night, while she was "normal", we talked for a long time about her issues. I asked her why she acts like she does sometimes, and she just says, "I don't know." She says she knows it is wrong, but at the time, she wants to do it. One night she said, "Don't give up on me." It was a heavy statement from an 8yo, and I will never forget it.
 
I try to put a twist on things, and tell her that what she is going through will help her so much when she is a grown-up. She will have so much compassion and understanding for people going through hard times. And when she sees a kid acting like she does sometimes, she will be able to really reach out to them and give them the compassion they need.
 
Despite everything, dealing with what we deal with has added another dimension to my personality. Before having children, I really thought I would be the best parent . I had it all figured out. But parenting teaches humility, and especially so for children like these.
 
I read somewhere that the child who seems not to deserve love, is the one who needs it the most. Although it is hard to put into practice sometimes, I believe that is true.