BeeRae22

ps. It may not happen immediately either. If it is Pandas/Pans, it could take a few weeks of abx to see any improvement of symptoms. I would consult a Pandas doctor.

It might Maybe, possibly, probably, likely...... ugh! Terrible, yet incredibly frequent words related to Pandas & Pans! We never really get a "definitely", and when we do, we're super excited- "positive for Lyme", "definitely strep". No one but a Pandas/Pans parent could understand that Overall, I would say yes. It would confirm something, wouldn't it??? If you take antibiotics, and your symptom goes away, than the antibiotic took care of something.... right?!

couple of things..... --having a tic doesn't necessarily mean Pandas, but if you have strep in your recent history and the pediatrician is willing to give you antibiotics, than I would definately use them-- couldn't hurt. --Pandas and Pans is usually marked by a sudden onset of symptoms- does he have any other symptoms? I wouldn't say that a meltdown about bloodwork from a 4 yr old means anything if it hasn't happened otherwise. But I would keep my eye out for anything unusual. --your ped is wrong. He could absolutely respond to the antibiotics in regard to tics if he has pandas. Happens all the time! If he doesn't respond and has no other symptoms, it may not be pandas! (hopefully for you!) .. best wishes to you and your son!

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

My daughter was raging regularly for months.... now it only happens when she becomes very anxious about something (like talking about going to the dentist) but that doesn't happen very often at all any more. She had/has ODD behaviors also (mostly resolved now). I'm not really sure what you mean re: "range of aggressive rages"? My dd would hit, kick, scratch, try to bite, kick holes in the door, throw things, write mean notes/letters, stomp around, tell us she hates us, etc. when raging. And then there were the ordinary, oh-so-fun ODD behaviors that would pop up between the rages Bartonella is suspected when raging happens. We haven't found it yet, but my dd's pans doc still thinks it's there. Raging usually indicates fear from/of something. Without enabling ocd behaviors (which isn't helpful to get in the habit of doing) see if you can reveal the source of his anxiety and try to talk to him about it when the rage is over. My daughter is only 8, so it's a bit harder to get her to express her feelings, but if your son is a teenager you might have some success in dealing with it if you can work on some ERP with him.

I agree with sf_mom. When was the last time that you changed treatment protocol and meds? If his symptoms are that severe that he can't attend school, I would think that Biaxin and Mino aren't enough. My daughter had school refusal last year, but not as severe as your son. I would try to get permission for something like what trinitybella suggested- maybe he could go to the specials classes each day (art, gym, etc.) to get him going? Is he going to CBT/ERP? Maybe try doing a little of your own ERP? Can you get him to just go to the school, even if he won't walk in? Then get him to walk in, then stay just a few minutes, etc.? What are his fears about school? Is there something you can do to work around them? I'm so sorry you're going through this. I've been where you are emotionally.... keep researching. Push your pandas/lyme docs to try different treatments if it's not working. Keep calling, posting, and asking questions. Hang in there.

Hi, before I say anything, I'll let you know that any advice I have to offer is born only from my limited experience with my daughter, and from following this site. There are many people on this site that are much more well versed and researched in this than I, But for what it's worth: - the trial run of abx is great, but unfortunately a 14 day trial is probably not going to be enough. Many people don't see improvement of symptoms until 12-14 days. My daughter has been on abx since January. It wasn't until we added the 3rd abx in June that we saw huge improvement. Now, 2 months later, her pandas doc recommends still continuing abx through the fall... Time is key, she has myco p and suspected bartonella-- 14 days of abx wouldn't have done anything for her long term. - what have you tested for? Are you positive for strep? - I wouldn't wait to seek treatment for any illness, mental or physical, for any reason. Doing nothing is definately not going to get you anywhere! - do you have health insurance? - what have you tried? What are your symptoms? How long has this been going on? - in regard to your parents, have you given them the Pandas information? If you find that they're not open to discussing it or learning about it, than I would focus your efforts on treatment and health, not trying to change them. Even the most educated people can sometimes be ignorant to new concepts or ideas that they don't understand. I find that many people don't want to take the time to understand my daughter's condition, so I've stopped trying with most of them. I'm sure it's hard to have parents that aren't listening, but you maybe you should just move on for now if you're not getting anywhere. -educate yourself. I can't stress this enough! Read this site, read posts that don't even seem to relate to you initially-- I've picked up bits and pieces of info that were really helpful, even when the topic wasn't directly related to my daughter's condition. Read all the info on the Pandas network site, go on other sites that are linked to it. Find out everything you can, and you'll eventually find your way through this. Don't give up.... You can get better! Best of luck to you! Stay strong

It's not going to be possible to avoid sedation, she's just not going to let them do it without it. I have let it go for almost a year because she was in such a bad place for so long, but she's doing really well now and it needs to be done. Not only have her teeth not been cleaned, but she more or less didn't eat for 8 months, which made her teeth even worse. She is only 8, and doesn't brush very well to start with, and won't let anyone get anywhere near her to help her with it I will ask what's going to be used, and talk to her pans doc about it. She's currently on full doses of Zith, minocycline and Bactrim-- do you really think she'll need additional abx??

Thanks LLM, I think I will pursue the 23andme testing. When i get the results, I'll be messaging you!! Just curious, why the ride to Hamden if covered by insurance? I've been driving to New Haven for CBT regularly for months which is hour drive for me each way, so it's not a big deal! But just curious, can it not be sent out? And would this be a seperate blood draw? Dd is due for lab work soon anyway, which I really should take care of this week before school starts anything else I should have added in, while we're at it? Dd gets very upset about bloodwork-- I really dread taking her each time. Thanks!

Dd desperately needs to have her teeth cleaned, since she freaked out and wouldn't let the dentist do it at her last appt which was months ago. She is doing better now, but you still can't even MENTION the dentist to her without her having a panic attack. Just telling her that she needed to get it done soon send her off the edge I made an appointment for a consultation with a ped dentist that can sedate her. I made the appt for the end of September, I wanted her to have time to adjust to school first before I break the news to her again. I am nt kidding when I tell you that I think I may need to give her something just to get her to the consultation. Anyone else that's had this issue? Any advice?

I would offer the information to your brother for him to look at and let him decide. How old are you, and how old is your brother? Are his symptoms similar to yours? Maybe you could introduce him to the Pandas network site, and this one. Best wishes to you both!

Anyone have any advice on explaining PANS to dd's new teacher?? I find it difficult to explain it simply... I don't want to overwhelm him with information, but I feel it's important for him to understand it-- at least a little bit!

Well, dd is doing well.... Still eating (2 months now!) and behaviors nearly gone. Nearly. Still on full abx treatment which will continue through the fall. But, something is still off. There is something beneath the surface, something not quite right-- another piece missing from this puzzle. Mold issue? Folate?? We're doing good- not the 100% that I'm hoping for, but I'm not complaining, but the ocd is still present. She still has a LOT of hangups about different foods, still has "checking" behaviors, and other little things here and there that aren't coming immediately to mind... I would say she's 80-85%. I am not confident that we won't see a big setback in the fall with anxiety and being exposed to all the great viruses/illnesses that school will bring. I recently posted about a folate issue we had-- I'd given dd a multivitamin (not thinking) and increased folate drops at the same time, and she had an episode the next morning... I waited a few days, have her 1 drop, and again the behaviors happened. Now I'm afraid to give her any of the drops, so I haven't. I'd like to have her tested for mold, and learn more about it, and also about folate. I can't explain why, but I really think that one or both of these may be playing a part. Where should I begin? I don't have a whole lot of time to devote to researching these things,I wish I did. Now that dd is mostly out of the woods, I can't let pans rule my life like it was-- but I don't want to overlook these either. I really have a hunch that I may discover something helpful there! Any guidance in this area would be appreciated! LLM? also, would a naturopath be helpful with this? Or any other professional??

Undoubtedly, my daughter is doing much, much better than she was 2 months ago.... She is eating again after 8 months of severely restricted/not eating which is HUGE, odd behaviors have stopped, she hasn't raged in a long time and is overall happier and well. We had a little folate mishap (at least that's what I think it was) about a week ago-- I had increased folate drops from 2 to 3, for 2 days and not thinking, had also given her a multivitamin (more folate!) and she had a few episodes over the course of the following 6 days or so. The day of the last episode she was also very tired from a sleepover which definately didn't help. Here's the thing though.... I was thinking about the last "episode" and the fact that she was incredibly tired, and I'm starting to question (and worry!) if she is actually doing as well as I sometimes think she is, or is the summer schedule, sleeping in, doing what she wants, etc. just "accommodating" her stressers? When school starts in the fall, is the anxiety (and therefore, the odd behaviors, etc) going to all start back up again when she's tired and "scheduled"? I'm trying my best to stay positive that this school year is going to be much better than last, but aside from her eating, what if the rest of it is just "on summer vacation"? We had started minocycline at the beginning of June, and it was 12 days later that she started eating again.... The rest of the behaviors also improved/diminished for the most part, with only very few and very brief flashes of odd "moments". .... But also, this was the end of the school year too! I wish there was a way to clarify or measure her improvement. The eating piece is a huge indicator, and I'm not dismissing that, but she still has a LOT of hangups about foods, and still doesn't eat many of the things she used to enjoy. I want to have a plan for the fall, in the event that the raging and school refusal, etc. returns, but I'm not sure what that plan should be. I want to be optimistic, but also realistic. Last school year was horrendous-- a complete nightmare. It nearly tore our family apart, and I honestly don't think that my relationship with my husband could survive "another round". I also don't want her younger brother to be subjected to all if that again-- I can't believe he did as well as he did and we may not be that lucky next time. But we're already in disagreement about how to handle it. I feel like I am fully prepared to pull her out of school should things become really bad again, he doesn't think that's an option, and doesn't want to talk about that right now. I feel that we should discuss it and make a plan. I am at a loss, and am really beginning to dread school! And if course, I am the one that primarily has to handle it all..... Anyone have any thoughts on any if this? Maybe I'm just looking for some encouragement

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 agree with above-- you should take her to be seen immediately- especially if it's happened more than 1x with blood in the stool. That can indicate a very serious condition in anyone, especially a child. That is not anything to mess around with. Best wishes.....

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.

Thanks all.... I know. People just don't get it. Funny thing though, is one of my friends that made a comment recently is one of those people that will post things on fb about how you shouldnt do April Fools jokes, etc. about being pregnant, because it's so hurtful to those that have had miscarriages, can't have children, etc and other things like that, so I was tempted to say something to her, because honestly I don't find anything amusing at all about a condition that nearly had my daughter hospitalized because she was afraid to eat, and that tears apart the lives of so many children and their families, and nearly destroyed ours. I'm sure I'll never say anything. I thank God for this board and having the ability to communicate with people tha get it. I can't imagine going through this without the Internet!

OCD is not an amusing personality trait that describes a person who likes things clean opand orderly!!! I know I don't need to say that to anyone here, but how to handle the grating and irritating feeling in the core of my soul that happens when someone close to me describes themselves, or someone else, as having or "being" OCD?? I never thought I'd be one of those overly sensitive people that would take offense by comments like that, but in the past 2 weeks I've had 3 people that are close to me (and should know or understand better, but don't!) that this is insulting! I admit that I dont often talk about the OCD behaviors as much as i talk about the RESULT of OCD itself, but I still wish that people could be a little more thoughtful before they speak! Any good come backs that don't cause a problem? I don't want to make a if deal about it, but I can't stand it anymore!!! Sorry for the rant!

I just had this conversation with my dd's PANS doc last week, who is primarily a Lyme specialist. We don't even have a positive Lyme, (yet!) but suspect bartonella, and he has her on 3 abx to cover all bases and forms.... (dd does have MycoP, which has similar biofilms and habits as tick borne illnesses). so, with that said-- IMHO, if your son's symptoms are severe enough that you're considering traveling, not only would I have him take the doxy, but I'd try to get Zith and Rifampin or Bactrim on board, if you can get it, and something for detox. Best wishes....

Yikes- I can't speak to any of what you just asked! Except that, no, she has not been tested for MTHFR. Her doctor suggested that the 23andme testing could be something to check in to, if we wanted to explore that avenue, but we haven't done it yet. So, with that said-- any new thoughts? I have not changed a thing, other than the one drop of the Super Liquid Folate, and the one multi vitamin. (Because of dd's eating/choking fears, she had not had any vitamins in a very long time, and she's still not at 100% in gard to eating, so her diet isn't great. Improving every day though!) She has not had behaviors like that in 2 months??

LLM, so.... Don't give her any for a few days? She is taking "Super Liquid Folate"- by Designs for Health Now you've reminded me, that is was also either yesterday or the day before that she had a multivitamin too! ugh! I feel so dumb with all of this all the time!! I'm learning, but I'm a bit slow! I will try the niacin she seems to be doing better as the day goes on, but still not where she was yesterday. thanks for your input!

We started the folate drops before the big improvement came (before Mino, and before the resumed eating happened). We did o low and slow, it was recommended to start by her doctor. We did one drop a day for weeks, and then 2 drops for a long time. It was just last night that we went to 3. Admittedly, I don't know much, if anything! About methylation. I started the folate because it was recommended. I increased slowly, again recommended. He told me I could try to increase again, and it could cause behaviors, etc. if I "crossed the line". Apparently, 3 drops crossed her line!

Great response. I second what LLM said! My daughter is NOT herself while in a PANS flare, and PANS doesn't define her! I would tell them to listen to the parents first and foremost. The parents know more about what's going on with their children than anyone else at any given time. Dont assume that you know about a child because you have information about their condition-- we are all unique (especially Pandas and Pans kids!) Keep an open mind.... Without open minded parents, special needs children wouldn't get half as far as they do! Love our children, and treat them as your own while they're in school. We're putting them in your care for more waking hours each day than we have them. They need to be engaged, inspired and encouraged.... Even when that encouragement has to come by a different means that the rest of the class receives. Most of all though, they want to be like all the other kids. They don't want to feel different. Do your best to make THAT happen for them. They are already painfully aware of their differences. You don't need to remind them. And Communicate with their parents! We can help some times-- really!! Good luck!