BeeRae22

I haven't read all of the previous posts, so forgive me if this seems out if place, but if I were you, I'd utilize my efforts and energy to seek out a knowledgeable pans/pandas/llmd instead of trying to compose a list of relevant tests and trying to figure out results all myself. It sounds like even if you get this doc, or someone! T run everything, you're still going to be where you are right now if they're not willing to treat (or don't know how). Even knowledgeable docs don't always have a specific treatment plan because a good deal of it is hit or miss Best of luck...

Just a thought (not judging!) but if your daughter is PANDAS/PANS and has strep and is flaring, wouldn't you want to knock it out of her ASAP and use abx vs. trying home remedies? Even non-pandas kiddos are put on abx immediately when strep is confirmed..... Are you detoxing while on abx?

I feel the same right now. Dd10 is raging daily again and we're throwing more abx at her. I'm ready to quit all meds and see what happens. Thing is, she was 100% toward the end of summer until just before Christmas when we had strep in the house- been flaring since and getting worse. What does that mean after 2+ years of abx and treatment? We see a respected Pans/pandas llmd who, like you said, seems to care and I do trust, but he obviously doesn't know the sure answers--so am I making a mistake by keeping my 10 year old on all of these long term abx? And trying different meds and herbals all the time? Maybe the rages are my fault because I'm "letting her get away with things" like my mother and husband suggest lately? Do "normal" kids go into a full-on hitting, kicking, biting, swearing tantrum because they have to watch the tv in the bedroom instead of the living room because their sibling is watching something? Or because their father ate the first cookie out of the batch instead of them? (Granted, she was looking forward to this after her bath tonight, and the rest of us were waiting for her to get out too, but her father didnt know and accidentally ate the first one, and like an idiot, I pointed it out to her- not using my brain! She flipped the f--k out). Is she just "spoiled"? Thing is, she was fine a month ago! Down to 1 abx and NO problems..... How do you go from that, to psychotic over a cookie being eaten?? she threw out the batch, and raged for an hour- and when I finally told her father to get the Xanax, she cried and cooperated when she realized I was serious about making her take it (I've only given it to her once, about a year ago? She didn't like that- it knocked her in her little butt!) -- but what does that mean? That I "scared her straight"? Not trying to high jack your thread- but I am in the same place as you tonight. Within the past 24 hours I've had 2 of my friends and my mother tell me that she "should see a therapist". That it seems "she can control herself". Maybe I'm the one that's crazy, I don't know. But I'm so sick and tired if more appointments, more money, more meds and no real answers. There aren't any decent "therapists" within a 20 mle radius that take our insurance that I've found... And you can't just go once to see someone-- you have to invest.... Time, money, emotions. I'm tired too. And so fed up with all of it.

Dd(10) was basically back to baseline from mid-summer until the week before Christmas when my ds(8) had strep. Dd had been a bit "edgy" since we withdrew Bactim from her protocol maybe about a month or so before this, but was doing just fine. She started flaring- a few more minor rages, skin picking, defiant, oppositinal, mean, restless sleeping. We added amoxicillan and she was on that for 2 weeks and then had diarrhea for 3 1/2 days so i discontinued (the script was due for a refill and she didnt seem to be responding anyway) i thought it was from the amox, but thinking now maybe it was a stomach virus? Then she was complaining of feeling dizzy and headache for 2 or 3 days. This morning, and tonight (not this afternoon) she said her throat hurt..... She is pretty much raging daily now. Again. We haven't had this kind of behavior for a long time- since last spring maybe? At least not consistently like this-- maybe a bad day or 2 here and there, blips on the screen, but she is full-on flaring now I don't know what to do... We added Bactrim again too, it's been about a week. Never removed zith, still taking IMN-r for detox. Giving high doses of Motrin daily as well.... What else can we do? Nothing seems to be helping, and I feel like she's slipping away. And all I keep thinking is "I can't do this again"... And my husband is such an a-s I can't stand it. After 2 + years you would think he would get it, yet he just yells at her at the top of his lungs and threatens to take her iPad away and not let her have friends over ever again. I feel like I'm in an insane asylum and am helpless to do anything about it. I wish I could just run away sometimes, I really do. Bt my kids need me and I can't take them out if here because I'm so broke. Someone please help me understand what I'm supposed to be doing.... I know I should be strong after what we endured these past 2 years, but I'm really starting to lose it. --at least I can vent here. Thank God for the Internet!

Thanks llm- I'll be giving that a try while waiting to hear from the dermatologist! Dd is very self conscious about them,,. She won't wear sleeveless leotards and dresses because she's embarrassed

Dd(10) has had this patch of bumps at the fold of her arm for a long time (a year and a half?). Started with one skin-colored bump, and over time there were more, but just in that area. Finally took her to the pediatrician for a referral to a dermatologist and he said he's fairly sure it's a viral skin infection called mollescum contagiosum. Anyone familiar with this? From what I've read, MC is contagious and one can reinfect themselves on other parts of the body. None of us have it, and with the skin picking she does when she's flaring, I would think she would've reinfected herself already if it was contagious. She has actually gouged a few of them off during flares. I also read that for for those with healthy immune systems, it will usually resolve on its own. For those with compromised immune systems (lucky us!) it won't resolve without treatment. Anyone have any helpful information? Her pans doc looked at them the last time we were there, and he suggested that they may be Bartonella related. I have no idea. We're waiting for an appointment with a dermatologist but thought I'd check here too! Thanks!

You should get him on probiotics ASAP.... They should've been recommended by the doctor prescribing the Augmentin. Just using abx for a few days can cause stomach issues, and if he had surgery & pain meds in addition, ( plus restricted eating!) I'm not surprised that his stomach is hurting. Call the doctor's office ahead of time to discuss it, and when you bring him in have the doctor tell him that he needs to eat "xx amount per day" to help with the cramps. Hearing that from someone other than mom might help

I was also just wondering.... was your son taking pain meds after surgery? That could be causing stomach issues as well.

Is he taking probiotics? (Hopefully?!) if this is a new symptom, I would definitely call the doctor..... You should definitely redirect his thinking about eating causing the cramps. dangerously severely restricted eating was one of my dd's biggest issues, and I would do anything to avoid that line of thinking. Abx could certainly be causing that though, so I would start there. This may sound stupid, but maybe try going and getting some "special bread" (or something like that), and tell him that it's supposed to help make stomach cramps go away.... Again, that may sound dumb, but the power of suggestion can be very convincing, especially for a kid with anxiety/OCD. Good luck

You aren't alone,... After 2 years we were just finally down to 1 abx (zith) and here we are approx 4 weeks later, adding another abx in because dd(10) is flaring again from ds(8)'s strep infection. Ugh. I'm so discouraged. Interestingly though, dd didn't get "colds" for the two years of treatment, not until she was almost back to baseline. This morning started with our 5 pd doggie being sick, ds spitting his food out while eating (OCD), and dd being aggressive and "edgy"..... Trust me, You are not alone. Llm (above) is very knowledgeable.... And I agree with her that your son's pattern kind of sounds like Lyme reproductive cycle. Have you tracked the pattern? Best wishes.....

I should maybe add also that dd never had strep- her trigger was myco p and maybe Bartonella.

So, we have been weaning dd10 off of abx after nearly 2 years of treatment.... She was taking full doses of zith, Bactrim and Minocycline for a long time. We were successful in withdrawing the mino at the beginning of fall with no problems. About 3 1/2 weeks ago we stopped Bactrim. She has been "edgy" since then. The past 7-10 days or so, she's had several "episodes". To make this more confusing, we just confirmed that my ds7 has strep. Now I'm not sure if dd is flaring from stopping Bactrim, or if she's flaring from ds's strep, or both? What would you do? Wait it out and hope it doesn't get worse? Go back on Bactrim to see if that helps? I'm so tired of this roller coaster, I want off! And somehow, even though dd is 100x better than she was during her initial 8-12 month exacerbation, I seem to be almost having a harder time dealing with her now than I did then.... PTSD I guess. I also have a lot of other personal issues to deal with now too, but I just can't stand it sometimes- I really feel like I'm going to snap. My son is exhibiting classic pandas symptoms now too- but thankfully his symptoms have been mild and easier to handle (so far). Please share opinions on what you think about dd's situation. I'm going to call her doc on Monday, and will take his suggestions but ultimately I'll need to decide. I hope everyone had a nice holiday.... I'm so glad the majority of it is over- I really didn't know if I was going to make it through!

And of course, the culture came back positive. Every once in awhile I do know what I'm talking about now dd is flaring.... Ugh. So disgusted that this pediatrician was going to send my son away untreated 2 days before Christmas with strep... Way overdue in finding a new pediatrician!

My PANS dd had/has mycoplasma (and suspected Bart) triggers, so strep is newer for me. I think ds has strep. Sudden sore throat Friday -18th, fitful sleep (crying out, etc. all night) low grade fever over weekend. No congestion or cough. Small rash on neck yesterday morning- red bumps. More significant rash on chest, stomach, back and groin last night. Red patch on roof of mouth, red and inflamed tonsils, white bumps and coating on the back of his tongue. Light rash on cheeks this morning, has faded a bit now. --side note, son had very unusual/atypical anxiety episode this weekend-- please see my other post. regular pediatrician today. Rapid strep was negative and she was ready to send me away, saying "it must just be a virus" and that she couldn't (wouldn't) treat with a negative test. Ds was panicking/anxiety ridden about the swab, and she barely got in his mouth- I have to question the validity of that one. So I pushed and got her to do another swab to be sent out. Again, I don't feel confident that she really got the swab in the back of his throat the second time either. She barely looked at the rash, if at all. (It was light, but it's there-- and now the bumps are raised). So, we're waiting for the culture..... Question- are there viruses that mimic or look like strep???? Because from everything I'm reading, and the images I looked at of scarlet fever from strep, looks a whole lot like strep to me. Should a virus with these symptoms just be ignored? Is a typical diagnosis either strep or a virus that can/should be left untreated? Ds is eating and drinking okay. Has complained of stomach ache tonight several times, but otherwise seems ok. Had low grade temp of 99.4 most of the day. Gave him large dose of Motrin to sleep. Looking for opinions on what I should do if the culture comes back negative as well? Watch and see? Take him to a walk in and see if I can get them to give him something??

When my dd's exacerbation started, and continued, her symptoms were so severe and numerous that her PANS diagnosis didnt leave much room for doubt. But what if OCD/anxiety were the only symptom? Ds is having (2nd?) "flare" of more severe OCD symptoms that have escalated with illness. Would someone with "garden variety OCD" have worsened symptoms with illness and improve with better health, or is that autoimmune talking? Is there such thing as "garden variety OCD"?

I posted not long ago about my non-PANS son. He suddenly started exhibiting OCD behaviors surrounding food (specifically people chewing with their mouths open) and some others- (confessing, checking, etc.)- then came the 4 day fever, and later he showed slow improvement as his health returned. He's still sitting by himself in the cafeteria at school, but is actually eating a little bit, and joining friends when he's done. Still has/had anxiety issues/worries, but nothing unmanageable. This began in October. The (useless) pediatrician did a rapid strep, (negative) but my son squirmed away and pulled back so fast I'm not sure the nurse even swabbed his throat. Well, Friday (18th) ds (just turned 8 last week) woke with a horrible sore throat. What he kept saying was that he couldn't swallow his spit, and didnt really SAY "my throat hurts" so I actually thought at the time that he was having sensory issues. Friday night, he cried complaining about his throat, and tossed ans turned and whimpered ALL night and he's usually a very sound sleeper. Saturday am he cried and complained he couldn't swallow. I gave him a super-sized dose of Motrin, and he was fine the rest of the day. The rest of the weekend, he had an on and off low grade temp, but seemed ok. Yesterday evening, he was lethargic and warm (not sure of temp) but otherwise seemed ok. Said his throat hurt, but not as bad. Might've had a fever though, but I'm not sure because I was giving him "surgical doses" of Motrin through most of the weekend. Here's the bad part. Last night, we went to pick up take out at our local pizza place. The woman owner was there, that we know well. She had her baby with her, and introduced her to us. So we're taking with mom and baby, etc. and the baby seemed to take a liking to ds- she was really smiling at him and reaching out for him, and the mom commented now she never does that, and how she must really like him. Ds didn't say much, he smiled and we left..... Then we got home. As soon as we walked in the door, he became agitated and upset, saying "I know you won't like me saying this, but I want to say that I HATE that baby. She really freaked me out. I NEVER want to see that baby again!". He was a mix of angry and upset, kicking at the rug on the floor. I told him that she just liked him, and thats why she was smiling and reaching for him. He replied "I don't want her to like me, and I don't want anyone in the whole world to like me. I hate that baby and I don't ever want to see it again". He continued to be upset and agitated, then I finally got him to sit and eat. A few minutes later, he came up to me worried, saying he couldn't stop thinking about that baby and he hated it, and was worried that he would think about it all day at school tomorrow. This is so out of character for him. He is a sweet, very agreeable boy ALL THE TIME. Then..... This morning, I noticed a bit of a rash on his neck. Nothing drastic, and I dismissed it quickly. Then this evening, I remembered to look at it again. Light red, bumpy rash on neck, chest, stomach, groin and back. then I remembered my husband saying that last night he'd tried to look at his throat but ds wouldn't let him. Well, he let me look tonight. Dark red patch on back of the roof of his mouth. Red, inflamed tonsils and white bumps on back of his tongue. Whitish coating on tongue. Yep, congrats mommy- I think I've discovered strep with a side of scarlet fever. I am beside myself with panic.....severe PANS Dd (just turned 10 last month) is weaning off of abx after 2 years of treatment, is finally recovered, and she was NASTY yesterday. She's been "edgy" since we took her off the last med a few weeks ago, but nothing really significant. Yesterday? arguing and defiance turned into hitting and kicking. I feel like I'm losing my mind. Took tomorrow off from work so I can be with my son, who is panicking because I told him we have to go to the doctor, and he's asking me to promise that they won't do the "throat thing" again (rapid strep). He has a great deal of anxiety about that from last time. Worse than that though.... As much as I like dd's PANS doc, I can't afford to be bringing another child there. I really can't. $1,000 eval, and $200-$250 per visit after that, plus supplements? But it's plain (for me, not husband) to see that he needs to be seen. What am I going to do? I guess the good thing about strep (vs. dd's mycoplasma) is that the ped will Rx abx (short term though) and I'll get a chance to see how he responds, and strep/PANDAS diagnosis seems a little more definitive than dd's PANS-mycoplasma-and-suspected-bartonella-but-not-confirmed diagnosis. (Although not much). I need help.... Well, my son needs help first, then me. Thanks for listening.

My bigger question is..... Is there such thing as "garden variety OCD"?

Now I'm wondering..... "Garden variety OCD" or PANS? Definite OCD symptoms now- difficulty with others (or thoughts of others) chewing (still sitting alone in cafeteria, but says he's eating "a little") unnecessary confessing, worrying about going to intermediate school next AUGUST (crying about it at night), high anxiety and sensitivity.... And...... no other symptoms???? Not sure what to make of it, but I don't like the direction he's heading in. I keep wondering if he could be made better if treated- but with no other symptoms its hard to justify going down the "medical road".

I'm sorry, just now seeing your post.... Not sure I have much to offer-- fortunately my dd is more or less back to baseline now after such a long road. Definitely sounds like pans/pandas flare though- especially if its after illness. Did your son have strep? Lyme? I'm curious about your reference to ivig being the "big fix"... Have you been successful with it in the past? There was a time when I was wishing we could try it but we couldn't get approval with no positive strep (dd had myco p and suspected Bart, no strep). We did zith/Augmentin combo first, switched to zith/Bactrim, and later when we added Minocycline was when we saw the biggest improvement with eating.... Finally backing off meds after close to 2 years of treatment of full doses abx... Down to just zith and doing great. Is your son taking any meds now?? My first thought is that although you said he'd improved with eating, I'm wondering if he wasn't fully recovered yet-- any other symptoms????

I think I just replied to your question on the fb page hands down, I'd go see Dr. M. I brought my dd to him via referral from "veterans" on this forum and I have no regrets..... Feel free to pm me if you have any questions!

Well, I'm here in Connecticut, and we are definitely in the running for being one of the highest cost of living areas as well. The $1,000 doesn't include lab work, but the insurance does cover that..... The other Pans/Pandas specialists in CT are equally as expensive and I don't know of anyone else that will treat. I may try to seek out someone else though. DS seems to be doing better each day eating at the table, eating breakfast with his sister again- not running away. Still has coughing tic, but not as prevalent. Of course the BIG question is.... what happens when he gets sick again????? I still don't know what to do. This was clearly an exacerbation, no denying that. Will it be the only one???

So the good news is that ds seems to be doing a bit better than before.... At least things aren't escalating at the moment. Fever cleared, seems healthy and not gagging and coughing as much. Even sat at the table to eat with no problems tonight, and ate breakfast with his sister this morning. Here's the downside though- although because of what I know, I can see that he was getting some kind of infection (myco p maybe?) and he suddenly had issues, and now that he's on the mend its getting better... He also doesnt appear to be having any other symptoms. What scares me is that when this started with my daughter, it was primarily with eating at first, food getting "stuck in her throat", etc. and then a few weeks later she was a complete mess- but it really was a few weeks later, she didnt present all at once. But here's the problem--- I REALLY can't afford the $1,000 consult right now. I'm not just crying poor here, I honestly can't afford it. I have state insurance and tried to find a way to get things covered before and finally gave up because I wasn't getting anywhere. I know if ds spirals and declines I'm going to really regret not testing right now, but I'm also still praying that this was just a blip on the screen for him and that he'll continue to improve. I also think that his father is going to tell me "he's fine" (he's in his peaceful place of denial) and tell me that he's not going to help me pay for the visit, and that I'm "overreacting". I don't know what to do- I have 7-8 days to decide.... I wish I could just get some blood work done to see if there's infection first before I "enroll him" as a patient. If his bloodwork is clear, I'm going to regret taking him in right now. Any suggestions?

Son now has full-on coughing tic, and worries about people eating/chewing with mouths open and hearing chewing escalating. Has taken to eating away from his sister, and coughs and gags when he is thinking about it. Not eating any lunch at school, small snacks at snack time only. Worries at home about it too. Also, he had a fever for the past 4 days (finally stopped last night). I took him to his ped a few days ago (day 2 fever) which of course was a waste of time..... They did a rapid strep (I don't think they even swabbed the back of his throat) and it was negative, and they sent us on our way. Daughter never had strep anyway, so I'm not too revved up about getting it done I guess. She had mycoplasma pneumonia. We have an appt on the 12th. $1,000 initial consult that I truly can't afford.

Thanks everyone.... The support here is helping to keep me sane, or at least helps for a moment to feel like I'm not 100% nuts. Ds's teacher emailed me with yesterday's "check in". The lunch para told her that ds ate nothing at lunch at all-- and she told him that he really should eat something, so he took a bite of his fudgecicle (ice cream day at school) and when she walked away (not knowing that she was still watching him) he spit the bite out into his napkin. On the bright side, he did eat his snack of crackers and cookies, in the classroom. So, today when he came home I had a "casual" talk with him about lunch when he told me he hadn't eaten (I asked him what he ate for lunch). He tells me that the kids chewing grosses him out, and that all the "leftovers" gross him out, and that he really tries to not think about it- and that sometimes he can, and usually he can't. He also told me that he's lonely sitting by himself which is heartbreaking to hear. I asked him if he wanted to choose a friend and go somewhere else to eat and he said he doesn't want to do that. I am going to put a call into the school social worker that knows him well and schedule a meeting with her. She worked with him when he had a terrible time transitioning to kindergarten, and she is also Lyme literate- I've had many conversations with her about dd. I'm hoping she can help my sweet little guy to be comfortable somehow so he can eat his lunch. He told me today that he was hungry and wanted to eat but couldn't. Beyond calling the social worker, I don't know what to do. This was all i could think about all day. I might try scheduling some blood work, I don't know. I'm just beside myself and feel sick just thinking about all of this. Thankfully, at least he did eat some dinner and snacks at home. Thanks again everyone. Even just doing this "brain dump" helps, because I know some of you are listening and understand.

right now I feel like if I come out and say that my son needs to be tested or seen, that everyone I know including my husband and some of my relatives and friends are going to say that I am overreacting and over thinking this and creating a problem. How can this even be happening? What are the odds? Something else that terrifies me.... my son is exactly the same age as my daughter was at onset. Her symptoms started Oct 2013 before she turned 8 in November. My son will be 8 this December. I really feel like a psychotic lunatic. I am not kidding. I am trying really hard to be in denial here, I really am. I truly am questioning if I am the only one that needs treatment right now, because this just can't be happening. It just can't.