BeeRae22

I was told that the behaviors could flare up almost immediately from too much folate (they did!) and then would dissipate just as quickly (hopefully?) when you reduce the drops back down. Anyone have experience with this?

So, DD (8) has been doing GREAT. Eating (finally!) and behaviors practically gone (with the exception of very, very brief ODD when tires or stressed, and it doesn't last past a quick mean comment or face and then it's over). We went to her PANS doc the other day, and he said to keep everything the same. Right now she is on Zith, Bactrim and Minocycline, and Drainage Tone 3 drops 2x a day, 3 Clak drops 2x a day, and has been on 2 drops a day of super liquid folate. We've talked about MTHFR and "playing around" with the folate drops, and that that would be the only thing I could alter at this point. So, last night I gave her 3 drops.... Holy sudden ODD behaviors this morning batman! :/ Doc told me that this could happen, but hard to believe that one drop could make such a difference?! She hasn't acted like that in weeks and weeks! Actually flicked me in the face because she was losing a card game! Defiant, stomping, mean words, etc. I remember briefly discussing this with her doctor before, and I know it's correlated to the MTHFR gene, can someone (LLM?) give me advice or information on this going forward? (LLM-- I'm not positive, but I actually think it may be you that her doc refers to when taking about possibly connecting me with "a parent that is really involved in this area"?!) what does this mean? I've been tempted to do the 23andme testing but haven't gotten there yet. Honestly, I've been on a break since school let out and behaviors have improved... I feel like I've been through a war these past 9 months. I'm nervous to give her ANY folate right now!! What do I do tonight? G back to 2 drops, just do 1, or none? Should I try this again later for experimental purposes? (I don't want to! but summer is better than during the school year I guess!) Any help, info or suggestions appreciated! Wow, how soon we forget really, how bad those behaviors feel, and how disruptive they are. I hope she doesn't flare in the fall. I honestly don't know if I can go through all of that again

My dd (8) has had PANS symptoms since October 2013. Last month, on June 15th (day 12 minocycline) we finally saw a significant improvement in symptoms and she's been doing great. This entire time, she has not ever had a cold, cough, stomach bug going around in school, nothing. hardly even ever an occasional sneeze! About a week and a half ago, her younger brother developed a nasty cold/cough. For the first time since last September, she has a cough and stuffy/runny nose (today is day 2). I always imagined her behaviors and symptoms becoming worse (or returning) should she come down sick? That doesn't seem to be the case as of yet. I'm curious about others experiences and opinions on Pans/Pandas kids catching a cold? Could this possibly indicate that she's "better"?? I've always taken extra precautions with her (additional hand washing, things like that)-- especially in the fall when she was so frail and her health was so compromised from not eating, and everyone around her being sick. (Including others in our house!) Thoughts?

You're so right, and I have done the same thing with my dd.... Nothing wrong with rewards or treats for changing behaviors IMHO! Like your son, if my dd was having a pandas "moment" you could offer her a trip to Disney World and she couldn't help herself or her behaviors.... Same thing with punishments or taking things away, she just wouldn't care. She would just get even more angry, and would even seem to get mad about the offers of rewards.

Our doctor doesn't take any insurance, of any kind I have been able to get lab testing covered, abx and therapy, but not actual doctor visits.

Perhaps an herbal remedy as mentioned by chubbermommy might be in order

I'm very, painfully aware of the seriousness of Lyme and Pandas, and many will not agree with me, but a tick bite doesn't necessarily equate to Lyme disease, and definately doesn't equate to pandas. Early diagnosis of either is obviously important, but IMHO a tick bite doesn't necessitate the need for abx.... Just my opinion

Call or email Dr. Thomas Moorcroft, Berlin CT. He is a fantastic Lyme doc!

I have Medicaid, and have not had any luck getting coverage for my dd. I don't know where you are in the pandas path with your child, but you can get certain things covered if you go through the right channels. For instance, you can likely get some lab work done, antibiotics covered, CBT and other types of therapy, etc. My daughter was on a basically liquid diet and living on a protein drink (because of severe ocd and fear of choking) and I did (after many frustrating phone calls and visits!) get the protein drink covered. We pay her doctor out of pocket though.... He is excellent, but sure doesn't come cheap.

My dd (8) has had odd behaviors on and off since her PANS symptoms started in October... It's taken this long for me to determine the difference between ODD issues and normal "bratty kid" behavior and even now, it can be had to tell sometimes! If your son didn't have these behaviors prior to pandas/pans symptoms than it's easier to tell I think. If in the past you were able to talk to him or reason with him in a certain situation, but you can't now, I would call it odd. Now that my dd is seeing improvement from her new abx, most of her odd behaviors have dissipated, but she does have them when stressed or tired. It's different than normal "kid stuff"-- my dd can be incredibly nasty-- hitting, scratching, running away, mean words and faces. In the moment it can be hard to make the sane and rational differentiation, and many times I find myself in a power struggle with her (and an argument!) that I later realize was beyond her control to reason out. (And beyond my control as well!! But even moms are human, and even moms of healthy kids can make the wrong judgements about behaviors and handling them, so I (try!) to not be too had on myself when it comes to dealing with it. ODD is hard. It "looks like" and "starts as" bratty-pants behavior and very quickly turns into something very different. I guess even those very experienced with this still struggle with it at times, because even the most patient and understanding and loving parents can underestimate the level of frustration that can build on both sides of ODD. The good news with PANDAS/PANS though, IMHO is that when you (finally) hit on the right treatment plan, ODD can eventually be resolved and become a thing of the past

My dd (8) has finally seen a big improvement since starting minocycline.... Improved behaviors, and began eating after 8+ months of restricted eating due to severe ocd related fear of choking and swallowing. I thought she was at about 90%, but realize now that she's really about 80% I think steroids may be the next step, but I haven't done much research yet. What's been your experience? Something about steroids for an 8 yr old makes me nervous, but I guess daily abx used to make me feel the same way, and it's been 7 months now! Just wondering what benefits and improvements people have seen, and any serious or harmful side effects experienced?

When she was diagnosed with Bartonella, Dr. B put her on a daily combo of Zithromax and Bactrim. Dr. J. continued with that. When Dr. J suspected she also had Lyme in spite of the negative test results. So he added a Cyst buster, Tindamax, on weekends. That is when she was able to start pushing through the last 5% (and after adding that, her Lyme tests eventually came back positive). I am VERY interested in this comment!!! We (and doctor) suspect Bartonella in my dd (8) but have had all negative test results so far.... In fact, all we've come up with is elevated myco-p to date. She had such severe ocd that resulted in extreme fear of choking/swallowing that she basically didn't eat for the past 8 months. We finally added minocycline to her protocol of azithromiacin and bactrim, and on day 12 she started eating! Most of her behaviors have diminished, but she still has the "5%" or so residual effects... What is "cyst buster"?!?!? And "tindamax"?!?!? And how did you finaly find Lyme???? Igenix? We haven't done the igenix testing yet... Our insurance doesn't cover it, and I can't afford it right now.... But I would REALLY like to pursue this path with complete confidence (although I know she has PANS, and so does her doc!). Thanks for your post! I'm so happy to hear good news. This disease an be so bleak at times....

Dd's issue was extreme ocd/fear of choking and swallowing.... Her appetite was definately decreased, but primarily because she was completely disgusted and turned off by food- the taste, smell, texture, etc. She did express hunger, but wouldn't and couldn't eat. We're still not honestly sure what her trigger infection is/was. She had elevated IGG & IGM for mycoplasma pneumonia, and we suspect bartonella based on her symptoms, but haven't found it yet. On Day 12 of minocycline it was like a switch went off.... She is eating again, and is still going-- it's been 1 week now! She still has hang ups about certain foods, but she tries new things almost every day and is doing great. I've heard other people that minocycline worked for, but for ocd related food issues, not necessarily appetite issues. I know this probably doesn't help, I'm sorry

Sorry, I just saw that he's still on abx and anti-v's, but what were his other symptoms? And have the other symptoms all resolved?

Just curious... Did the raging, etc. ever stop while in meds? I'm wondering how long your son's treatment lasted, and why he's off meds if he's still having symptoms?

Just my opinion, but I would say that your son is still "having symptoms".....not had a personality change. My dd was never what one might consider "sweet and caring" (always a bit spoiled admittedly!) but she was never mean or unkind either. Her symptoms started in October and she became aggressive, aggitated, raging, ODD behaviors, mean and just plain old NOT NICE most of the time! During all this time she also had severly restricted eating due to extreme ocd. I mention the eating because we finally hit on the right antibiotic, and she suddenly started eating again-- so we know that she's in "recovery".... And since the recovery started, so has the improvement in behaviors. While she's not 100%, the raging has stopped, and even when she does get angry or upset, it isn't anywhere near as intense as it was before. Her general attitude has changed back for the better, and when she does or says something mean now, you can tell that she feels bad about it- where before, she just seemed to downright hate us at times! I remember thinking that it was so sad that she was "mean girl" now, and what a lonely and miserable life she was going to have if she stayed that way. I can say with (a bit of) confidence now, that her personality didn't change, she was just still flairing with PANS. If your son didn't have these issues before, I'd be willing to bet that it's PANDAS being mean, it isn't your son! If he never used to rage before and is raging now, keep pushing for additional/different treatment. What kind of test results has he had?? Other symptoms?.. My daughter's doc has mentioned a number of times that raging, in particular, is a symptom of Bartonella. While we don't have any positive Lyme results yet (I stress yet!) we suspect Bartonella in my daughter and we are treating as such..... Keep reaching out on this board! It's been extremely helpful for me and my girl list your symptoms, treatment, etc. and someone may suggest something that could help!

It is my understanding that there are different types of mycoplasma, and that mycoplasma pneumonia is not the same as Lyme related mycoplasma. My dd has mycoplasma pneumonia and has not tested positive for Lyme yet. I say yet, because we do suspect bartonella but haven't "found it" yet. Mycoplasma pneumonia is very prevalent in public places (particularly in schools) but most children don't contract it, or at least don't have enough of an infection to be be noticed (maybe a 1 day fever, a cough for a few days, but usually passed off as a cold).

Thanks everyone... This is still so exciting!!! Yesterday she ate a kid's Subway sandwich and almost ate the whole thing!!! And then I took her to the store (to get more if the chocolate cake!) and you should've seen her.... "I want this" "I want to try that" -- I had to drag her out of there!!!! What music to my tired ears! <3 I was really starting to think this was never going to happen.... I was truly losing hope. In fact, Friday night I had a bit if a breakdown Keep the faith everyone. I know it's hard-- believe me. I am so thankful to everyone on this board

I don't want to push her too much right now, I'm just happy she's eating! Not as much as she did Sunday night, but she's eaten a little something morning and night so far, and that's huge!! Rachael, this is the first run of minocycline. She's also on azithromiacin and Bactrim, and Clak & drainage tone for detox. We suspect bartonella, and that's the reasoning behind the Mino. And true to her pattern, dd showed improvement at right around 2 weeks of new antibiotic-- although this is the first time eating has happened!! Pr40- I spoke to Dr. L but he's not the one treating her... She sees one of his colleagues for CBT. He knows her Pans doc, and sits on the pandas advisory board with him. I am sitting in the waiting area of his offices right now, in fact! If I see him walk by, I'll share the good news 8 months was such a long time to go without her eating willingly.... She's sticking to pizza and choc cake for now and I'm okay with that. Hopefully she'll branch out and be on the road to health. I'm praying that her recovery continues.

I can't imagine how you're feeling.... My dd started symptoms in October, and all we have to goon right now is elevated myco p. We suspect Lyme, but tests have come back negative so far.... I'm waiting for the retested results at the end of this week! It's good to know which direction to head in.... This is all so difficult, and even more so when you don't know what you're dealing with!

Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!! I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic! Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!

Yes, they do ERP (Exposure Response Prevention)

Ps. She loves the therapist, and "engages" in therapy-- eager to please the therapist, etc.

Yes, she is doing ERP.... And we get home, and dd doesn't want anything to do with eating. And still hates school. And still picks her skin. And still rages when upset, and has ODD behaviors when tired, or upset, or stressed.

I agree that more aggressive treatment is needed.... but what does that mean? Her last appointment was about 2 weeks ago, and finally her doc does (finally) seem to be willing to get more aggressive. The plan is to have her on a trial of Minocycline, and then move onto steroids. He talked about ivig, but without a positive strep on file, he said it would be incredibly difficult, if not impossible, to get it covered by insurance. The Yale OCD/Turret's Clinic was once headed by Dr. Leckman, (he is still in those offices) and I can only assume that anyone in that office is well qualified and trained in treating OCD. Is Rothman a Pandas/Pans treatment facility, or is it just an OCD clinic? Again, in regard to OCD therapy, I can't imagine that Yale Child Studies would be inferior to any other facility-- maybe I'm wrong?? I guess where I'm heading with this, is that imho, no amount of therapy is going to fix anything until we resolve the underlying medical issue. Not to say that it won't help at all, but I think she needs treatment first, and therapy second. I am open to taking her somewhere, if I can gain a sense of confidence that it's going to help. We have been through a lot, and I'm trying really hard to make the right decisions to move forward. Thanks to all of you for your input! I really do appreciate it. I would feel so lost and alone without all of you!