BeeRae22

It's been quite awhile since I've even been on this forum, which is a good thing after an incredibly horrible 2 year struggle with this disorder my dd(9) is finally back to baseline now with only a few bumps in the road here and there. This time, I'm here re: my ds(7). I hope that I am wasting my time by posting this. I hope that I am wrong about what I see happening with him. To be brutally honest, I have always been very skeptical about those who say that they have multiple children with pans/pandas. Maybe it's unthinkable for me to consider my son having it too. Maybe it's denial, I don't know. But I just never wanted to accept that this happens to more than 1 child in a family. Even after all we've been through, this whole think just seems completely crazy sometimes..... Anyway, my son had been exhibiting some..... errrrr.... different behaviors. He isn't sick, he doesn't have a cold, or strep or anything. (When my daughter's onset happened, she had been sick with a cold.) Some background on my son- he's exhibited minor anxiety and a few "quirky" personality traits, but overall hasn't had any problems. Last year though, he started this thing at school during lunchtime. He would often sit by himself. When I asked him if he always sat by himself, he would reply "if I can". Now, he didn't seem upset by anything really, he just mentioned that some of the kids chewed with their mouths open and he didn't like it. He just seemed to prefer eating alone, which, well- isn't exactly "normal" but he was fine otherwise and it just seemed like a quirky kid thing. Fast forward to this school year, and at the beginning of the year he went to his teacher and told her very matter-of-factly that he couldn't eat his lunch, because people chew with their mouths open and it was going to make him sick. Now, this started mid-year last year, and again he was fine otherwise. So I didn't think much of it when his teacher mentioned it. But now, suddenly this whole thing seems to be escalating. The other day he was all worked up because he was going on a field trip the next day and he was concerned about how he was going to eat his lunch. He talked about it all night, asking a million questions and was very worried. So I emailed his teacher, and let her know. She told me at the end of the day that she'd asked him if he'd like to sit with just her at lunch, which he did. But he didn't eat-- at all. He complained of a stomach ache as soon as lunch time came (I'm assuming anxiety) and drank a juice and that's it. When they got back to class, they could have snack and he didn't eat that either... The next day, he was deleting videos off his ipod to make room for a new game. You are not even going to believe this, I can't even believe it myself. While he was going through the videos, he came across a video of this kid that had been playing around with the ipod, literally almost a year ago, and had made of video of himself CHEWING WITH HIS MOUTH OPEN. How in the world is this even possible????? This was around bedtime. My son goes to sleep laying next to me. He was literally crying and whimpering, saying that he couldn't stop thinking about the video, and was afraid he was going to throw up, and that it made him feel sick.... He's brought it up here and there many times in the past few days since he saw it. There have also been many other little things regarding food and smells that he's been bothered by. My dd was eating a pizza lunchable (which granted, is pretty gross! in the car, and he was hiding and whimpering and complaining about the smell, and how he couldn't stand it-- and he meant it. He's also been "coughing" when he has these thoughts about the open mouth chewing and foods he doesn't like, and he will say that thinking about them makes him cough. I want to continue to be in denial that all of these little things may be adding up to something, but I'm terrified. One of my dd's most extreme symptoms was severely restricted eating. She feared choking and swallowing. She was nearly hospitalized for a tube until I basically forced her to drink a protein drink several times a day to keep her out of the hospital. She lost about 10% of her body weight and was a peanut to start with. She would go weeks at a time without putting a single bite of food in her mouth. It was a nightmare. This was in addition to the raging, OCD, ODD, school refusal, depression, skin picking, sensory issues, cognitive issues, short term memory loss, emotional lability, etc. etc. I think I still have PTSD really- and I hope I'm reading too much into my son's "quirks" but I am really nervous about the direction that I see this going in. He was worried about going to his cousin's birthday party yesterday because "people might be chewing with their mouths open".... this isn't good. What am I supposed to do? My husband refuses to acknowledge that something is wrong. He wants to chalk it up to him "just being a kid". I told him what was going on, and he responded "I'm not worried about him, you're making a big deal about nothing". Of course, he did NO research or handling of our daughter's treatment, and only half-accepts the things I've tried to explain to him over the past 2 years. I feel like I am completely out of my mind..... I really don't know what I am going to do or how I am going to handle this if it is something. I pray that it isn't, that I am wrong and my husband is right. I pray that it passes, and just resolves itself. But he is having these worries more and more every day and I don't know how to help him. He's not sick, so there's no way that I can justify having him tested, or bringing to his attention that something might "be wrong", because I think at this point that could just make things worse too. At what point do you decide that something needs to be done? How far is too far? Do I wait until he stops eating? Can this actually be happening? At the same time that I know that I will do everything I can to hold it together to take care of my son, I'm not so sure that I can handle it at all. Somebody please offer a suggestion. I need someone to tell me what to do.

Dd(9) has been having rage episodes. Again. Somehow it seems almost harder now than when we were in the thick of things and it was happening everyday.... Or maybe it was just as hard then, but those feelings all come rushing back when it happens now, along with PTSD from what we've been through in the past 2 years. How do you handle rages? Dd was hitting me (and it hurts! She's gotten stronger and stronger in the past 2 years!) and kicking me, and was relentless. She's even been putting her teeth on me the past few rages (which she never did before) although she hasn't actually bitten me yet. I put her in her room, which seems to fuel her fire, but there's no way to keep her in there aside from standing there holding the door closed, and I don't feel right locking her in (although I've considered it many times). She's kicked numerous holes THROUGH the door with her bare feet- I've worried (many times) that she's going to end up injuring herself doing this. What other options are there? The past few times I've mostly held her back (with a lot of effort) and we go back and forth-- I put her in her room, hold the door shut for a few minutes, try letting her out, put her back in there, wait a few minutes, open the door, and so on. as you can imagine that's a real fun hour and a half! I need to come up with something else. Consequences, rewards, etc. are a waste of breath..... Anyone have any ideas???

Dd9 is flairing- had full blown rage episode last night. We have never tried SSRI's or any psych meds of any kind- my husband and I have both agreed all along that we do not want to go down that road. But last night, I was seriously considering slipping her some Xanax. Does anyone do that? On an irregular basis I mean? I have a script for her (filled) from her PANS doc to use if needed for having her blood drawn (which used to be a HUGE ordeal for her) - but we never used it. Would something like Xanax help during a rage? She was horrendous all night last night- even when she calmed down a little.... Still boiling under the surface this morning too. Any reasons why or why not to try it? I definitely wouldn't fall into the habit of giving it to her all the time or anything, but wondering if I'm missing out on some "occasional relief" that might be available right there in my cabinet??

Dd9 is flairing.... 18 months into treatment, and it's not unusual for her to have a flair, but there doesn't seem to be anything causing it this time? No one is sick, it's summer, so we're pretty stress free, she's getting plenty of rest, play and sleep. She has been a bit aggressive and mean over the pad few days--- tonight, a long, drawn out rage episode. what am I missing here? - so tired of this! We were going to start weaning her off of abx this month too....

I've heard this story before, except I was the one telling it. my daughter's rages don't really have anything to do with what she says they're about, and unless something else happened to cause your dd to have hard feelings about being adopted, I doubt the presentation is what "caused" her rages either.... My dd had sudden onset PANS just before she turned 8. She stopped eating, and went to an almost completely liquid diet in under 2 months. She suddenly had sensory issues, OCD, extreme anxiety, extreme fear of choking/swallowing just about everything, school refusal, short term memory loss, cognitive issues, difficulty with math, ODD, rages, fatigue, skin picking, feared being alone, depression, social anxiety, emotional lability, decreased handwriting skills, etc. BUT, she DID NOT exhibit these behaviors in school- With the exception of restricted eating. Is your dd eating again? I found this to be a less common symptom than most-- as terrible as all of the other symptoms were, I think this was one of the hardest to endure. (I say this having been through daily raging episodes for months as well) My tiny girl lost about 5 pounds and it was terrifying. It took a long time to resolve her restricted eating. FYI- my dd never had strep (as far as we know). Her mycoplasma levels were very high, and her doctor suspects Bartonella as well, based on her symptoms. I would seek out a Pandas/Pans doctor or an LLMD immediately. The symptoms that you're describing don't "just happen" for no reason, or because another student gave a presentation. You will find that most general practitioners and pediatricians either don't know anything about Pans or aren't qualified to treat it. Find a specialist, and follow your gut- you know your child! Best wishes... You are not alone! Keep asking questions and researching.

My dd is much younger than your son, but as far as school goes if his disorder is affecting him academically than I would push for an IEP. If school were in session than a 504 would get him accommodations faster, but you have time to have an IEP in place before the new school year begins. This should include any work that would need to be done over the summer so he doesn't fall behind. Research IEP's and 504's online, there is probably a child advocate in your area too if you need help- learn your rights and then tell the school what he needs. You will need to have all of your information together- have your son's doctor write up a diagnosis and statement that he's being treated in his office, etc. As far as having him do math at home, I would keep it light, not push, but give it a try- with zero pressure. He's old enough- let him have most of the control over how to approach it. Try to talk to him about it when he's having a good moment- see what he has to say. Don't threaten having to repeat the class- that would probably just cause more anxiety. Just tell him that since he missed some school that you need to see if he can make up some of the work, but if he can't than he can get to it later on after school starts..... I had a lot of homework issues with my dd when she was in exacerbation... I learned that calm and relaxed is the best way to go- if he can't do it than there's no point in pushing- he'll get there eventually. Best wishes

Last week, June 21-24 I couldn't get dd's zith filled because the idiots at the pharmacy don't know what they're doing.... This week, dd is flairing..... Opinions on whether this is a direct result of those missed doses? Still took regular doses of Minocycline & Bactrim, and herbals for detox. We've been in treatment for 18 months now, and have had ups and downs with symptom severity since her pretty-close-to-baseline recovery period late last summer, but all in all she has improved significantly. She has an appointment soon and we were considering trying to wean her off of some of the abx to see how she does.... I've had reservations about doing this, but she really has been doing pretty well, maybe even plateaued. I've also been very curious to see what would happen if she stopped taking them. But curiosity killed the cat they say, and if this is any indication of how that's going to go, than I might reconsider! she's currently aggressive & anxious with minor raging episodes. We've seen this a bit on and off since recovery, but nothing lasting.... The past few days have been increasingly bad Any thoughts? Did missing a few doses last week bring this behavior about this week? Or is it coincidence? We've been staying up late lately (summer vacation!) but been sleeping in late every morning too

I have mixed feelings about ERP. My dd(9) did 5 months of CBT/ERP at a respected institution with little success. Her diagnosis sounds similar to yours minus the strep- she never had it. High myco p and suspected bartonella. I will say though, that my dd was in a severe exacerbation that lasted about 8 months when she went to therapy- in all honesty, I think it would be more beneficial to her now than it was at the time we did it, but now I'm burnt out on therapy and won't be returning any time soon. Like worrieddadnmom suggested, I would go with your gut. How severe are the symptoms, and how long has she been "better"? Are you going to be kicking yourself for not going when the appointment date goes by and she's in a flare again? I am sitting here at this very moment with dd in a bit of a raging episode, 18 months into treatment, wishing there was more I could do or try..... I've explored every avenue reasonably available to us (and some unreasonable!) so I know I've done what I can to make this different. I don't know how severe your dd's OCD is, or where your path has taken you so far.... You should do what you think is right. Best wishes <3

My dd's doctor thought ivig might be a good choice for her when she was in crisis/exacerbation, but felt that without a positive strep there was zero to no chance that we could get it covered by insurance..... He even joked (in a compassionate way) that we should find a kid with step in her school to give it to her so we could get a + strep. Although she is now fairly close to baseline (depending on the day) I still wish we could've tried ivig. I have to wonder if it would've been more effective and/or beneficial for her than abx alone. -- or if it would get her closer to baseline than she is now. Good luck.

Ps. Regarding the part of your question re: non-Pans kids being treated for their "malfunctions" or symptoms- I think that you would probably find that most Pans specialists (like my dd's) come from the camp that most neuropsychological issues/disorders are likely physiologically based. I am obviously far from being a doctor or researcher, but from all of the reading and research I have done since my daughter's onset in 2013, I'm beginning to question if there are such things as "garden variety" OCD or anxiety disorders? I just don't know.... But either way, there is a distinct difference between Pans and that anyway...

I think that the distinct marker of PANS vs "garden variety" disorders (OCD, ADHD, etc) is the sudden onset of symptoms that cannot be explained by other diagnosis. Take my dd9 for example- September 2013- perfectly fine. Happy, social, normal child. Yes, she had "OCD tendencies" like her father, and was a bit nervous/anxious, but overall she was just fine. Mid October- upper respiratory infection followed by sudden refusal and rejection of many foods previously enjoyed..... By November, down to 2-3 foods only, raging episodes, school refusal, extreme anxiety, depression, aggression, sensory issues, skin-picking, etc., etc. it wasn't until January that I figured out what was happening to her.... She began treatment... In March I got her into Yale Child Studies. They tried to tell me that she "just had OCD".... Seriously???!!!??? A 7 year old (just before she turned 8) who loved school so much shed wished there was no such thing as summer vacation, suddenly refusing to go to school? Going into a 2 hour rage because she didn't like my haircut? Suddenly Completely restricting food to the point where she literally didn't put a single bite of food in her mouth for TWO WEEKS? (And continued not eating for 8 months) picking the skin on her fingers until they were raw, screaming that she hated me because I asked her to turn the tv down? All of this when not a single thing had changed in her life, other than her? No way.... I knew something had happened to her. Most Pandas/Pans kids have been brought to numerous doctors and specialists because something "happened" to them- in other words, it's not a build up to something, it's a marked change in the child that you didn't see coming.... Like I said, my dd had exhibited anxiety and nervous behaviors prior to her PANS exacerbation, but when the exacerbation started, it was different.... She was different. Specialists may not be able to diagnose that difference, but parents usually can it's not part of who they are, it's something that's happened to them, if that makes sense. -- just my thoughts on your question.

Coming from a mom of a 9 yr old who had severely restricted eating for nearly a year (when she was 8) to the point of being on the brink of being hospitalized for a tube, I would suggest treating for bartonella regardless of testing to see if she improves. Our pans doctor is treating based on symptoms, not tests. I couldn't afford Igenix testing, and Quest was negative- but if it looks like a duck, and quacks like a duck-- well, you get the idea 16 months into treatment now and dd is doing so much better- still struggling with flares, but eating is almost back to baseline Best wishes...

As of a few weeks ago, my 9yr old PANS dd suddenly has body odor. I guess at the time that i noticed it I kind of chalked it up to growing up, thinking that its really early for that but that it just must be normal. Then I just started thinking.... Duh! This could be indicating a problem and a pans mom should know better!! my dd has never had body odor and is nowhere near puberty.... In fact, she would do hours of dance classes and gymnastics, not shower for days and still not smell. Now all of a sudden, body odor? She is flairing a bit now also-- seems to be struggling with a cold/allergies. Anyone else have this happen? I did a quick search and saw some info re: metabolic issues and also heavy metal issues?

It's hard to imagine a doc that's willing to diagnose Pandas/Pans won't do any bloodwork! I would try to find someone more experienced. While it's a clinical diagnosis, at a minimum they should still be running some labs! Penn isn't really standard treatment either, especially a prophylactic dose. You might want to consider trying Motrin around the clock in the meantime-- see if that helps. Good luck....

Just wanted to share with those that can appreciate my excitement over something like this My SIL, who works at one of the offices for CT Children's Medical Center just told me that they are having a STATE MANDATED PANDAS/PANS lecture from Susan Swedo this month! With purpose to diagnose! While I did not have ANY luck there with treatment or help for my dd a year and a half ago I can only hope that they will educate themselves so that other parents won't have to go through the that we did with trying to find help for our child. I was told by the gastro surgeon there that performed the endoscopy on my dd that "these things just happen sometimes" (about her severely restricted eating) and their entire feeding team was completely useless for us, and their OT was a waste of time too. No help, whatsoever. Everyone there kept trying to send us to psych. They even gave me a referral to a psychiatrist, and when i called (in desperation) the psychiatrist wouldn't even see her because she didn't treat kids that young! (Of course not, because 8 year olds don't really have garden variety eating disorders!) That's what I got from CCMC, the leading children's hospital in the area, 18 months ago- an ultrasound, an endoscopy, a barium swallow, wastedt time (ours and theirs!) with the feeding team and OT visits, and a bad refferal for a shrink. So you see, this lecture for me is a glimmer of light in the darkness of this disorder-- I hope they will be more open to helping other children. I hope to never be where we were then, and my heart goes out to anyone who's there now. I think one of the hardest parts in the beginning was feeling so helpless and not being able to find anyone to help! It would be so wonderful if more doctors could learn about this awful disorder. It's difficult enough to have a sick child, and it's 100x worse when you can't even do anything about it! Here's the link I found.... Think I can pose as a doctor and sneak in???? I'd love to hear the lecture!!!! http://ct-aap.org/files/2015%20homepage/2015%20April%20CME%20NEWSLETTER.pdf

I agree with Melmix.... Have you seen a pandas doctor? What tests have you had? Maybe not Pandas, but Pans and/or Lyme? You've written a lot about your symptoms, but not that much about treatment. I'm just wondering if you've tried abx, steroids, etc. if you're convinced that this is Pandas, than you should see someone knowledgeable. Best wishes.

IGM refers to a current or recent infection. Those numbers are still really high. We've been treating my daughter for 14 months for myco alone. She has been on Zith the entire time, and has been on 2 other abx for most of the time too.... Most importantly though, if your dd is still having symptoms, than you need to continue, and possibly add other intracellular abx. What are the IGG's? >5 I would assume.

So, dd's WBC just fell again. Last winter/spring is was borderline low at 4.1-4.3 most of the time. When she saw the greatest recovery/progress, WBC went into range at around 6. Now, early January she dipped down to 4.1 again. Just got retest results and shes down to a concerning 3.0 We are having another CBC drawn to see where she is now. If she's still low, I was told her abx protocol will be changed. Questions- 1. She is on full doses of Zith, Mino and Bactrim. Drainage Tone and IMN-R for detox, and probiotic. On Zith for a little over a year. Mino and Bactrim since late spring. Is the WBC a result of abx? (from what I'm reading, Mino could be the culprit). If so, what does this mean exactly? Will changing to a different abx make a difference? or will she need to be weaned off? Are there physical consequences of low WBC as a result of abx? 2. She seems to be in a bit of a flare right now. I am terrified of taking her off any of the abx. She was doing so great up until about a week ago. I guess this isn't a quesion after all... but what would you do? 3. Could her current flare be a result of low WBC? If so, what do you do about that? 4. Could the low WBC be resulted from something other than the abx? 5. If we change her abx and she backslides, then what? feeling scared. I thought we were doing so well here (aside from the minor recent flare), and suddenly I'm not feeling very confident at all. Thinking about what we went through last year just makes me want to run and hide. This spring holds so much promise for many little reasons, and I'm worried that they're all about to be crushed by PANS.

funny you should post this, because my dd is in a flair, and our dog has been cowering and hiding in the crate just recently when she's having behaviors, which he never did before, even when things were really bad last year..... (what she's going through now is nothing compared to last year, and this is new for the dog!) hang in there-- it will get better. I was in tears almost every day last year. I sometimes tear up now just thinking about how awful it was.....but sometimes I almost forget too be strong and go hide with your pup for a few minutes if you need to- it's okay, I do it sometimes myself.

Dd(9) has been doing great for the past few months. In fact, I was just thinking last night how close to baseline she (finally) is-- it's been over a year since treatment started. No episodes, no odd, ocd barely detectable. Eating again, sleeping fine, pleasant, social again. No real issues to speak of. Then bam..... Raging/odd this morning over being told that she wouldn't be brought to Wendy's after school for a snack. And again, raging/odd behaviors after school about the same thing. Dh thinks "just bad behaviors". I think no way. She hasn't acted this way in quite some time, especially over something like that. I'm so sad and frustrated.... Just when I'm gaining confidence that she's so close to baseline, we get slapped down again. I'll be going out to get some Motrin this evening, and hoping this passes quickly. I was hoping it was just a bad morning, but it's not looking that way. Will this ever be over???? I was so hopeful. PTSD kicking in here. I even forgot to get my son off the bus because I was too busy trying to calm her to hear the driver honking the horn outside. This disease sucks.

Did you have any blood testing done? Regardless of how you decide to go forward, I wouldn't stop until you had blood work done. If nothing shows up and her symptoms and/or tics don't worsen, then great- do what you think is best and follow up later. But if something does show up, it will give you a direction to go in. If she has issues later and you didn't at least get a work up, I think you'll regret not pursuing it. I would also keep a close eye on her. OCD can be sneaky, and often times its victims are afraid or ashamed to "tell" their thoughts or fears. Hopefully she doesn't have any though! does she seem to be improving as time goes on?

Although my opinion may be swayed by my dd's severely restricted eating as a results of Pans, even prior to that I don't think I would've ever considered having a child deliberately fast. Children are growing and need consistent nutrition- they aren't just "adults in miniature bodies". I think that not only would it pose a risk physically, but considering that most children with Pandas/Pans have OCD, having a child fast unnecessarily could send an unhealthy, or even dangerous message to someone with a compromised and impressionable mental state. Just my thoughts of course, everyone has a different take on treatment methods, but IMHO this shouldn't be on anyone's list for "treatment trials" for children.

Here is a link that may help http://www.latitudes.org/forums/index.php?showtopic=5023 this is from this forum under the "useful links" topic I didn't have any luck getting in to see Dr. Bouboulis myself, even when dd was in crisis. I've heard great things re: Nancy O'Hara in Wilton, CT but have no personal experiences myself. Took my dd to Yale for 5+ months and wish I hadn't wasted my time. Not sure which "specialist" Melmix is referring to, but if it's Dr. Leckman than move on.... While he seems to be a super nice guy, caring, etc. he hasn't been seeing patients as far as I'm aware, and his research has gone in other directions since his days of doing ivig trials. You might want to try Dr Tom Moorcroft in Berlin, CT if you can get in. He is fantastic. Good luck!

Following..... My dd(9) has myco p triggered Pans. She's been on combo intracellular abx for 1 year now- it wasn't until 8 months and the introduction of Mino that we saw her myco p levels finally in range. We are now considering very slowly transitioning to herbals and addressing her 1 MTHFR mutation. I would also like to hear recommendations, etc. related to myco p.

I don't know that she's ever been tested for yeast. What is the yeast test called? We will definitely wean slowly while introducing herbs at the same time. Before this flare she was doing really great, and that's when the "weaning talk" began, but she's taking longer to recover from this one than I expected probably going to have to wait to do anything now anyway.