BeeRae22

We have a rough time breaking the habits that are created during the bad flares. Kiddo adjusts to and begins to expect that I will get everything she "needs"/wants immediately without pause. When she begins to feel better, I start weaning her off the mommy is spelled S E R V A N T idea. Then we butt heads a bit, but she relents quicker each time and eventually starts doing things for herself again.
 
Mine has no sibling, so I do not have that issue *whew*.
 
Oh, maybe this will be worth a chuckle. When kiddo was younger, and I had told her to do something twice, the third time I simply said, "Mary, OBEY"
 
Actual conversation:
 
kiddo: mommy can I have some water?
 
Mommy: yes, go get you some.
 
Kiddo: Mommy will you get it for me?
 
Mommy: No, go get it yourself sweetie.
 
Kiddo: Mommy, help please.
 
Mommy: No, honey, you need to do this yourself.
 
Kiddo: Mommy obey!
 

I just want to chime in and say that I sympathize but I have no easy answers. Early bedtimes do help A LOT but I can't always make them happen over here either.

From a purely selfish point of view (my own), this was the perfect post to see first thing this morning. I think all of us can relate at one time or another. DS, 15, has a cold with severe stuffy nose (no green, all clear), but he is really hard to deal with right now.
 
On the one hand he wants to bury his face in video games or iphone. On the other hand, if you try to engage him, he is so crabby that you wondered why you even tried. I cried for most of the drive into work, today. Ugh...
 
It does get better, we are light years away from where we started, but mood issues have always been a problem for my son. Like you, we try to guide him and correct him but with little success. I feel like a failure many times.
 
Hang in there, we will get to healing.

Oh, I can so relate! Tonight I am crabby mom again.
 
DD16 didn't make it to school again today. She doesn't like to explain details to me about what is going on with her anxiety, OCD, and how she feels in general. So she's in bed most of the day. I get home from work and start working at home. She calls me. I ignore her for a bit. Eventually I wander up. She wants me to re-heat her rice bag. I tell her no. I feel a little guilty and I show her some crabby. She's not happy and neither am I. My "no" to her is really what I need to say more. It is okay. What I need to stop doing is the mumbling I do (kind of hoping she might hear and change, seriously???) as I walk away from her saying things like, "Let me get right on that" and then making a sound like a cracking whip.
 
I remind myself that she is doing better. There were times when a "no" would have made everything escalate. I remind myself that she is still sick. It is OCD that is cracking the whip on me and I can say "no" to OCD. If it's not OCD and is actually DD, I can say "no" to her too.

I totally sympathize with you as I see the same thing with my kids. Everything is a fight either with us or between themselves. HappinessWe have had a hard time dealing with them for a few years - before we knew it was PANDAS, we think we dealt with minor flare. It seemed like they ruled our lives. Doing routine things around the home consumed our time, and didn't get to work on personal goals that "normal" parents enjoyed. Everyone used to tell us parenting is hard, blah blah blah. Now that we understand that this is pathology and realize we have been struggling it helps us to realize that we havent been bad parents but parents dealing with a bad condition.
 
The symptoms of the children are infectious. We parents take on the anxiety, OCD, anger, unhappiness and regression. Often - as in the flare we are going through now - the parents become prisoners in their own house, shackled with caring for the kids and unable to enjoy time with activities, friends and family. I have had to take a leave of absence from work. (Yay, spending more money on health care whilst making less money!) We become further removed from normal life. Our perspective of reality becomes warped.
 
I have found that my parenting skills decline accordingly and I need to be aware of the need to change up my game. I agree that basic carrot and stick discipline doesn't work as well if at all. Thats usually one of the first things we see in a flare - basic life becomes hard and we spend all our time trying to make discipline work. And then the light bulb goes off: they cannot control emotions and their base urges rule their bodies. Its hard to make discipline work when you are competing with violent fears far worse than any consequence you can deliver. In the worst of exacerbations, it makes as much sense trying to make them behave as it makes sense for someone to make an Alzheimer's patient to remember. But there is also there is also the murky middle ground where we don't know what level of responsibility to expect of the kids, as hrosenkrantz states.
 
OK I am writing too much, as this is a subject that consumes a lot of my mind. The only thing that works for my 5 and 7 year olds is
Reduce expecations Control their environment - reduce stressors, give them things can do well, no exposure to violence or crude movies etc Try not to transfer your stress or anger to them Give them lots of love and encouragement Give immediate rewards. Use negative discipline sparingly, try to use "you are working for X so do Y" Risperdal and Valium, lol.

As our DS is now 17 and (crossed fingers) more or less on the "other side" of major PANDAs issues, I can look back and remember a lot of similar moments in our house of the years. And because he seems to be left with some "residual" OCD, as well, we still have moments where we're trying to balance responses and interventions that rightfully suit an intelligent 17-year-old boy versus those that acknowledge he's not 100% OCD-free.
 
I think the best I can offer in terms of chiming in is:
 
- We're all human, so don't be too harsh with yourself when you answer your kid's selfish, bratty behavior with something along the lines of, "Well fine then. See what you get from ME for Christmas!" It's natural to get fed up, and our kids need to know/see that we're human, too . . . that our feelings can get hurt, that we can run out of patience, etc.
- I do think that some limits and accountability being in place, even during exacerbations, is a good way to go. Even if you let a few things slide (i.e., give more warnings, maybe) during the worst of a flare, letting our kids know that the "real world" is still out there and won't always make allowances for their behavior as we tend to do, and that there are lines that aren't to be crossed, no matter how crumby you're feeling, is good practice for when the flares die down. Sort of like keeping some ERP techniques in place to combat OCD, even when there's an exacerbation and it's harder for your kid to comply with the ERP. Just maintaining the consistency and "real world check" alive, I think, helps them in the long run. Especially as they get older and are better able to articulate how they're feeling and manage their behavior even during flares.
 
We know our childrens' true nature so, to the extent we can, if we can help them hold onto more of their "true selves," even during exacerbation, and behave in a more acceptable manner, then like PR40 has said, hopefully, that more acceptable behavior will become the more entrenched habit that seems them through even the tough times.

major issue here too. comes and goes. it is, definitely, a symptom like ocd and you should approach it as such. that is, you will have only minimal direct effect but perhaps can teach her strategies. it is just that she will not see any reason to change her behavior. it is not like she is washing her hands fifty times. so, we devised reward system if she is nice to her brother when it is difficult to be nice, hoping that over time -- over a long period of time -- this would become new behavior.
in general, i find it easier to stop the behavior if I set the rules in advance. anticipate a potential conflict and try to set the rules like no counting sprinkles. we also find that quick time outs help her change her mind set. time outs are times for her to relax, as we explain to her.

Hi Beerae,

I don't know what the answer is, but i think you bring up the question that so many of us struggle with, which how much of this can be addressed through "behavioral' interventions, and how much of this is behavior that is immune to these kinds of interventions? I mean, we don't want to let our kids behave in unacceptable ways, but will they/do they even respond to the kinds of response we would give to a non-sick kid who is exhibiting in appropriate behaviors?

Dd9 diagnosed with Pans symptoms since October 2013 is currently in a flair-- acting like a complete BRAT and it's making me crazy! She's always been spoiled, so I do partially blame myself for her behaviors, but she is unbearable right now! Today was her brother's 7th birthday and from the get-go this morning she has been miserable. "I only got 1 present in the morning, why did he get 2?" "I'm so unlucky, I'm having a terrible day". Her birthday was just 4 weeks ago, and I swear, I think if she'd had sprinkles on her cake (she has food issues, so there weren't any on hers!) I swear that she would've counted every one to make sure that she got at least as many as her brother did! She refused to listen to me, or talk to me, or get ready for school this morning. Made me late for work, and stayed home with Dad until he could bring her to school.
 
When she's flairing, she becomes so selfish, and self centered.... Greedy, miserable. I know it's Pans talking, because when she's not in a flair, she doesn't act this way. (A least not to this extreme) -- but she has had issues like this before, primarily around her birthday compared to brother's birthday. It seems like she cant handle it when its "all about" her brother, and not her. It really bothers me, her brother loves her so much, looks up to her, ans is such a sweet, kind and generous boy, and she really comes across like a spoiled rotten, nasty and miserable little snot. I say this with affection mind you, I love my daughter more than anything, but am really sick and tired of these kinds of behaviors. What to do? Consequences don't work, they only fuel the fire. An earlier bedtime (which really benefits her by the way) isn't always possible. Rewards for good behavior don't work either. But I can't just allow her to be like that, can I?
 
I get so angry myself sometimes- And I find myself inappropriately goading her "fine. If you're so unhappy and miserable, than I'll take away all the presents you got, and you won't get anything from me for Christmas either since you're such a miserable and ungrateful girl." And then comes the guilt. And I try to apologize. And she won't get near me or talk to me... Bad situation made worse:(
 
Anyone else deal with this? Any suggestions? Where do you draw the line between brat and "having troubles". ?

I don't know any of the background history, so I'm not sure how long you've tried other treatments or abx, but here's my initial reaction to your post....
 
"The day following that first night's 500 dose, ds was calmer and while the ocd was still there it seemed somewhat lessened" -- "the next day, the ocd was clearly, clearly worse. It is still worse again today" -- "Patience is not my middle name".
 
When you say ds was calmer, but ocd was still there, and then the ocd was worse, what do you mean by that exactly? Was it worse than ever? Worse than the day before? How about a week before that? Ocd morphs, twists, and transforms all the time. One day it can be focused on one thing, and something different the next. Just looking for clarification on "worse". If you're saying that ds is suddenly raging or exhibiting new behaviors worse than ever before that's different... But generally speaking, I would say that it's honestly difficult to differentiate ocd behaviors in the span of only 3 days, because ocd and anxiety can morph much quicker than that, even throughout 1 day. How long has your son had pandas?
 
With that said, unless something really out of the ordinary is happening, our Pandas/Pans doctor feels that anything less than a 2 week trial for an abx is insufficient. With my daughter, she saw improvement at the 12-14 day mark with each new abx she has tried in the past year. (Unfortunately, her improvements would level off and then she would start declining again...damn myco-P). If your son has significant pandas/pans symptoms, it could take some time for real improvement. Patience is not my middle name either, I get it I really do. Especially when your child is hurting. My 8 yr old dd had stopped eating and was literally starving and disappearing right before my eyes and there was nothing i could do about it. It took about 6 months of different abx combos and trials to bring real changes. I remember that feeling of resistance each day I was giving her more and more meds, trying new ones, the frustration and fears and doubts I had about it.... Here I am, almost a year of abx later- and now I'm afraid to take her off of them. Amazing how your perspective can change when you're on the Pandas/Pans path!
 
MycoP can be really, incredibly difficult to eradicate. It took about 8 or 9 months of various abx for us to see a reduction in myco p... IGM is finally within range, but her IGG are still over 5 (should be <.90)
 
What abx have you tried? Duration? Have I tried combinations, or only one at a time?
 
I am just beginning to explore MTHFR. I suspected dd had methylation issues, and had a bit of a confirmation when I upped a dose of folate on her once.... That one is just like it looks like, it's a MTHFR! From what I can tell. For my dd, I believe it may be a contributing factor, but not the main source of anything. I do think it may be hindering her treatment.
 
I'm sorry that I'm probably not saying anything you want to hear I was so frustrated for so long... We all want our babies to be better NOW. This disease is so hard. Good luck. I'm no expert by any means, but I wouldn't change anything for awhile... If you change too quickly, than you don't know what's causing what. Give each treatment a fair trial (unless something's really gone wrong of course). Take a lot of notes, track everything because you will forget. There are many, many experienced, helpful and understanding members on this board- lean on them, ask lots of questions, read, read, and read some more. And take care of yourself too, you ds needs you at your best best wishes...

Well, still waiting for Spectracell results, but got the c4a and c677T back.
 
C4A is just over 6,000. I was told from the doctor's office that "normal" is typically under 4,000 but from everything I've been reading, it sounds like it should be under 2,500 at least.
Question- would this number be affected by treatment? I'm wondering if antibiotics would've lowered this number? Dd has been an abx since Jan 2014, and this bloodwork was just taken last month. Also from my reading, this seems to be indicative of chronic Lyme. Thoughts? Comments? Dd has been negative so far for Lyme and confections- but we haven't done Igenix testing either, and we suspect Bartonella based on symptoms.
 
C677T is "positive for 1 copy of mutation". I've been reading a bit about this, but if anyone would like to fill me in on their version of what this means really, I'd be interested! (LLM?!?)
 
Regarding the above.... How freaked out should I be about mold based on these numbers? I ask because the roof of our house is full of mold (we will be replacing in the spring) and our basement is damp (I'm sure there's mold there too) and it seems like mold "shows up" in our house frequently. (Grout in the tub, thermoses, etc). Obviously I try to keep it as under control as I can, but could this be such a problem that we shouldn't be living here? That sounds dramatic when I say it- dd is doing really well (although she has a cold right ow, and has been struggling these past few days with that- some behaviors, etc.) she seems to be healing overall.... Wondering what kind of impact this could be having on her?
 
As a side note, the only other thing we've "found" is mycoplasma. IGM is finally negative (was 880 at one point). IGG have been and are still over 5. (Shouldn't these be down by now too?)

My children are still little so I can't speak to the teenage aspect of parenting, but when I was reading your post I was "putting on my anxiety ears" while listening to your reasoning . Try to remind yourself that OCD is an anxiety disorder, and you can't "reason with anxiety". Your daughter is too busy worrying about beer being on a remote to consider thoughts of minimum wage jobs and the cost of Netflix frustrating I know, and I'm sure you know all of this already anyway..... Save those conversations for when she's well. If she can't get there right now, than she will some other time.
Best of luck!

I suppose allergies are possible, but seems viral, especially since 3 of us in the house got sick.... She had a better day yesterday, started to have some oppositional/aggressive behaviors but I was able to divert her quickly and head it off, so maybe she's turning the corner. Was told to give her 400mg 3x a day for 1 week.
 
Wish us luck

I suppose allergies are possible, but seems viral, especially since 3 of us in the house got sick.... She had a better day yesterday, started to have some oppositional/aggressive behaviors but I was able to divert her quickly and head it off, so maybe she's turning the corner. Was told to give her 400mg 3x a day for 1 week.
 
Wish us luck

I'm reading this article now, but one of the things I like about it is the run-through the parents go through with trying to attack this with behavioral interventions (ie trying to be "better parents") and how futile that is when the brain is inflamed. In other words, rewards charts may not be so effective when the child's brain is on fire,

I initially had the same thoughts- that she wasn't feeling well, so I didn't push the activity. But like I said, she hasn't missed a class in 3 years, even through 8 months of severe pans symptoms.... I'm pretty sure now it was ocd talking, not how she felt. because shortly after the class started and she was still home, she was fine ( doing acrobatics in our living room),
 
So far so good today.... No problems. Hoping and praying in was just a 2 day viral blip.

http://stanmed.stanford.edu/2014fall/brain-attack.html
 
Here's a bit:
 
"Children who meet diagnostic criteria for PANS have sudden, severe obsessive-compulsive behavior or anorexia, along with so many other problems that the child can barely function. These may include separation anxiety so powerful the child cannot bear to be more than a few feet from a parent, bizarre inhibitions about food, deterioration in schoolwork, intense insomnia or, as the Nelsons observed in Paul Michael, violent rages when the child’s obsessions cannot be satisfied.
“In some ways, it’s like having your kid suddenly become an Alzheimer’s patient, or like having your child revert back to being a toddler,” says Jennifer Frankovich, MD, clinical assistant professor of pediatric rheumatology at the School of Medicine and one of the clinic’s founders.
“We can’t say how many kids with psychiatric symptoms have an underlying immune or inflammatory component to their disorder, but given the burgeoning research indicating that inflammation drives mood disorders and other psychiatric problems, it’s likely to be a large subset of children and even adults diagnosed with psychiatric illnesses,” says Kiki Chang, MD, professor of psychiatry and behavioral sciences."

I need to brag, and so few people in the "real," non-PANDAS/PANs world will understand . . . so I come to you guys!
 
DS has had quite a road, and he keeps coming into his own, little by little, every year. He's now in his senior year of high school and our big accomplishment this past summer was the three weeks he spent on a college campus, living in a dorm with a roommate, eating at the cafeteria and attending an engineering "camp" designed for rising seniors, with college instructors presiding. That experience wasn't without challenges, but we threw him in the deep end, and he swam! Actually came away from it convinced that, in another year, he will indeed be ready to leave home for the "full-bore" college experience.
 
Still, he started his senior year with some anxiety and return of his nemesis of all OCD behaviors: contamination. No dramatic "flares," really, but just the creep and crawl of that insidious beast.
 
So when his AP Calc teacher called us last night, merely for the purpose of telling us what a joy DS is as a student, how bright he is, how he asks deep, thoughtful, creative questions rare of a math student of his age, how respectful and polite he is in class, how grateful this teacher is to have him to teach . . . I almost cried. DS has enjoyed academic success, yes, particularly once we got him effective PANDAS treatment. But as a 2E kid to begin with, who also has a tendency toward high anxiety, he's rarely appreciated to this extent by his instructors. More often than not, they cut him slack on the one side (keeping up with production requirements, occasionally behavior) because he performs so well on the academic side (particularly testing which, interestingly enough, the anxiety doesn't seem to grab a foothold in). But genuinely appreciate him? Even seem to flat-out like him? That's rare!
 
I guess I'm bragging almost as much on this teacher as I am on DS . . . in my book, they're BOTH keepers!
 
Thanks for listening!

If the chart doesn't work for you, what I did was try to keep it simple. I got a calendar, and each day I would make an arrow for morning and night (arrow up for good, and down for bad mornings and nights) so I had a visual of "ups and downs". I also marked any changes in treatment/meds so I could see the ups and downs after the change.
 
At one point I was trying to make notes each day about behaviors, etc. but it became convoluted to read, (and sometimes I didn't have time or was just too tired!) so now I just jot down anything significant, like a huge rage episode, or I'd just jot down ODD for odd behaviors that day...... I'd also jot down anything else significant, like a trip to the dentist, or doctor, anxiety provoking events like start of school, or a new teacher, death of a pet, etc.
 
It helps to have the visual to see if there's any pattern. I'm sure other people on this board have a more sophisticated way of charting this stuff, but keeping it simple worked best for me

We pay for our healthcare in this country (US).
 
My husband works for the largest US company, we pay a large chunk out of his check every month for PPO coverage, start every year with a new $2,500 cash deductible, which is usually paid by mid-February since everything including prescriptions is full price until $2,500 is paid, AND THEN,
 
we only get 80% of every insurance approved Dr. appointment/hospital stay covered.
80%! Last year it was 90%, now 80%.
 
Took dd9 to a leading neurologist in March, who I spoke to for no more than 15 minutes, who said:
She has PANDAS. I can't help you.
 
He billed our insurance company I don't know what, but I got my 20% bill for around $80.
So, $80. bill, after my monthly fee, $2,500 deductible, for a 15 minute conversation of:
Can't help, bye-bye.
 
So you see Pik, welcome to American healthcare 2014.
It is what it is.

You may feel doctors charges are outrageous and unethical but in this country doctors can charge what they like. In my mind, $400 for an hours service from a doctor who doesn't take insurance and has special training is worth more than paying a pediatrician who takes insurance $150 (less what insurance covers) for 15 minutes and getting nowhere because they have zero knowledge of PANDAS.
 
I understand your frustration but blasting a doctor because you disagree with their charges doesn't get you very far. We do not see Dr T but we do see another doctor locally who does not take insurance. Most of us are in that boat.

I would find a pandas/pans doc and go from there.... If you're someone who needs the tests to feel as though you're on the right path, than it might be good for you. Any doctor who knows what they're doing in regard to pans/pandas is going to order bloodwork anyway. Many of the additional tests that you might consider may not be covered by insurance, and could be inconclusive- leaving you feeling frustrated. I would recommend doing research on any testing that your going to pay for out of pocket.
 
Personally, I have not done any out of pocket testing for my dd. I would honestly love to do Igenix and the Cunningham panel, but my insurance doesn't cover it and I can't afford it right now. Dd's Pans doc tells me that ultimately, her treatment would be the same anyway-- based on her symptoms and response to treatment. Having a positive strep could be helpful in regard to insurance billing and is a routine test that's usually covered anyway, but I'd be willing to bet that even with a positive Lyme test (Igenix for example) you're not going to get very far with treatment with anyone but a llmd or pandas doctor anyway. When i first took my daughter in, Her pediatrician actually said to me "there's no such thing as chronic Lyme" and that because she didn't have strep, she didn't have pandas/pans and tried to send me to psych..... Ugh, what a moron. I think he's the one who needs psych-- boy would I love to see her pans doc face off with him!
 
Like SSS said, try to get a trial run of abx if you can. We did notice an improvement after 2 weeks of azithromiacin, but different and more abx were necessary for greater improvement. (Like your son, my dd had rages, ODD behaviors, severe OCD, etc. we still havent "found Lyme" but we suspect bartonella.). Print out information to bring with you if you're seeing a non pandas doc, and be prepared to meet with a lot of resistance.
 
Good luck and best wishes! Keep researching, asking questions, etc. Everyone's experience is different, but there are many, many knowledgeable parents on this board that have been through it all!

Could it be a Lyme/bartonella reproductive cycle? Just a thought! How long since behaviors before this? You said she's been off abx? so maybe it was your guests exposing her to something too. Hopefully things have settled down since yesterday! My dd just had a "folate flare" that lasted the better part of a day.... Wow, I didn't enjoy that one bit I tell you!

I've been where you are and wish you, your DD and your family the best. I would just let you know that one of the most frustrating things about Pandas/Pans is that you will probably not get "the answer" you're looking for. What I mean by that, is that most of the time, there isn't anyone who's going to be able to give you a definitive answer as to what your daughter "has". Push on, do LOTS of research, read everything! Ask questions, question the answers you get, and try to stay positive. I have brought my daughter to countless professionals, and it wasn't until just recently, 7 months into treatment with a well respected Pans/Lyme doctor, that I feel like we're on the right path... You know your child best, keep an open mind, but also always remember that!
 
Best of luck-- this board is great! Full of knowledgable parents that have been through so much.

100% agree with Rowingmom. A LLMD will put together a protocol that attempts to kill the three known forms of Borrelia and avoid monotherapy which may lead to chronic infection / relapses.
 
Eva Sapi has a nice study here on Doxy's performance:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/