BeeRae22

I don't think anyone can answer that question specifically, I'm sure if you're here, than you've already checked this out, but here's a link to info on pandas network http://pandasnetwork.org/understandingpandaspans/treatment/ivig/

Sickness/germ/throwing up/health fears continuing and escalating. more and more hand washing, "what if" questions, vague but frequent complaints of "stomach aches" and "headaches" and "funny taste in my mouth", etc. not improving, but still has a cold too, sneezing, etc and I'm still holding onto hope that this will pass.

In reading through your post(s), these were my "first thoughts" (for whatever they're worth ) Like Maryaw, I would probably consider seeking advice on another board where people may be more knowledgeable of your particular condition, ? It seems like most people on this forum are contending with Pandas and Pans symotoms, and it sounds like you have other issues to address. It sounds like you've exhausted ivig and pex as treatment options, regardless of insurance coverage. Have you tried other treatments? If I were you, and I'd been seeing the same psychiatrist for 10 years without results, I would seriously consider finding another psychiatrist or therapist. But that's me. Maybe you stay because you're comfortable. Perhaps "comfortable" is holding you back? Or "hope" is making you stay? These are just thoughts... I obviously don't know anything about your or your particular situation. "If you keep doing what you're doing, you'll keep getting what you're getting". --now, please know that I say this respectfully. My dd has been on abx for just shy of a year now, and she is still struggling, and I do understand that certain treatments take time-- however, (again, this is my quick assessment of your post(s) ), IMHO, it sounds like you might be in a bit of a rut. Maybe "exercise" isn't the answer, but the ivig, CBT, therapy and pex that you've tried haven't gotten you anywhere-- have you tried alternative methods? Diet, herbs, abx, SSRI's, naturopathy, osteopathy? I'm just asking, I don't know the answer. I'm guessing that there isn't going to be any one thing that's going to BE the answer-- I would try addressing one issue at a time- exhausting each possible treatment one at a time until each thing is addressed? Best of luck to you.... Dealing with Pans with my dd has been the most challenging, frustrating and exhausting experience of my life. I pray every day that it will get better, and it's hard all the time. Keep the faith, you will get through this. I am thankful for the support offered here, and couldn't imagine dealing with this without the Internet! With that said though, I think sometimes there's almost "too much" information. If you have ocd yourself, I would strongly (and respectfully) caution what you're focusing on too-- again, I say this with complete kindness, my dd's ocd is severe, and I am often surprised by the things that "catch her attention". Good luck and God Bless.

I am now catching the cold that is going around, and I mentioned it casually, saying I didn't feel very well, and dd said "can you not touch me then?" --I almost cried. I am envisioning this new fear spinning out of control, and I just can't imagine going there.... What I mean by heading this off, is how do I not enable ocd on this subject, and still keep her as "germ safe" as possible? She is flairing because of the cold she has, and I've mentioned in the past that she needs to be careful about germs because of her immune disorder, but germs/cleanliness/sickness has never been an ocd issue until now. I'll take this over her previous (and not completely resolved) fears of choking and swallowing for sure, but I don't want it to escalate to a point where she doesn't want me touching her either!

My Pans dd is not strep triggered, but I have heard of many on this board saying that their Pandas kids will respond just to exposure to strep without actually having it. In any case, I would have her tested for sure, especially if she's flaring. Does she have a Pandas doc? What do they recommend? Is she being treated for Pandas? If abx helped in the past and you have strep in the house, I would definately get her on board! I haven't heard of Feldenkreiss therapy. I'm going to have to google that! Good luck!

I would go.... I agree with Maryaw, sometimes a change of scenery/environment is just what you need! If it's only 1 night, than its not such a big commitment. Will she typically act out with other people? (My dd usually only lets loose at home). Take a chance. Sounds like there's more to lose by not trying than trying good luck!

Dd9 is currently in a flare that's resulted from a cold that's running though our house (son had it first, then dd, then husband, now I have a sore throat). She hasn't ever really had germ/contamination fears before, since her Pans onset in Oct 2013, her focus has been choking & swallowing, along with high anxiety, raging, skin picking, odd, and I'm sure I'm forgetting some symptoms, but regardless, she's never exhibited fears or obsessions related to germs, etc. before this past week. How to deal with this in the middle of cold & flu season? I try not to make a big deal about anything, but it's important to wash hands, be cautious of germs, keeping hands out if mouth, etc. -- especially for her, because she flares when she has a cold! I feel like I'm walking a thin line whenever I say anything to her, and she's suddenly very touchy about health, sickness, bodily harm coming to her. She was at a roller skating party the other day, and she told me that she "was hungry but that it was really dirty there". Well, I gotta be honest, it really was dirty there! Of course, I brushed the comment off and told her it was fine, but I can't always do that. I don't want to feed her fears, which I fear are escalating at this point, but there is a absolutely a need for caution in public places right now. Any suggestions regarding this type of obsession in general? This is a new one for us. I'm really, really hoping that this will diminish as her cold improves-- but not sure how to handle in the meantime. Thanks!

Dd is still in flare (flair? Flare? I never know how to spell that!) and now she seems to be moving on from mean/selfish behaviors to sad/poor self esteem mode I might prefer mean girl to sad girl

Thanks everyone. Dd is still flaring, and sniffling, sneezing, etc. Had a little episode with the therapist this week (first time with this therapist that she's been seeing for 2 months or so) and is struggling. Hasn't had as much odd/meanness, but we are now moving on to to whole fun, new obsessive fear category, which I will save for a separate post I need to get her better, I'm certain her behaviors will diminish as soon as her illness goes away.

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

If you are feeling this desperate and reaching out on this board for help with suicidal thoughts, I would urge you to seek face-to-face help immediately. You should not try to handle those feelings alone or on the Internet! The National Suicide Hotline is 1-800-273-8255. Call a family member, call the hotline, please contact someone or go to the er.

Sent you a pm thanks! We are taking things one at a time, but I guess I only expected good results this time-- I should've known better by now I guess! But maybe a herx isn't such a bad thing- might mean we're hitting something, right?

I take notes, but haven't needed to chart up until this point. I probably should. Any suggestions for a good charting method? Something easy? I will skip tonight and wait and see. I'm wondering how long I could expect it to take her to process last night's dose? If she's still struggling tomorrow, for instance, would you still attribute that to the glutathione she had last night, or something else? If still struggling tomorrow, would you hold off for another day, or go ahead with the 1/2 dose?

This is the first time we've tried any form of glutathione, so I have nothing to compare it to. She was getting 2 drops per day of Super Liquid Folate, and when we upped to 3 (and accidentally gave her a multivitamin at the same time-- oops!) she had off the wall behaviors the next day when she'd gone months before with virtually no behaviors. We stopped folate all together, and then she had a cold, etc. so we did nothing for awhile (except the antibiotics) and now we're trying the S-Acetyl glutathione to see what that does before trying the folate again. So, what would you do? Reduce dose? Skip a day and try again? Stop completely? Not sure how to proceed.... I'm thinking I'll skip it tonight and go to half a dose tomorrow night maybe? I hate guessing! :/

And is zinc/copper directly related to glutathione in any way? I know it's all connected, but don't know the relation. We also had difficulty "experimenting" with folate as well, but we're holding off on that for now while working on glutathione.

Zinc right at borderline at 41, Copper at reasonable 53. Doesn't seem concerning in that area, right? Or is 53 too high in relation to borderline copper at 41? Any recommendations re: glutathione? I don't know what to do-- keep going with it and try to push through a possible herx? give it a break already? Cut in half? I am so disappointed- I really thought this was going to be the key to the last piece of this I can't afford to do any more testing that wont be covered by insurance right now, but her doc is usually willing to try new treatments based on symptoms. I guess I'll call in Monday and see what he thinks. Anyone have any other thoughts?

Unfortunate update already... Raging this morning Help!!!! a bit of sneezing too, generally not a "sneezer". Flair? Glutathione reaction? Thoughts?

Rowingmom, you said some Pandas/Pans kids have trouble with NAC supplementation? Could that be true for glutathione supplementation as well? If you could, please check out my new post-- thanks!

Dd has been making great strides over the past few months, increasing and steady progress, with 2 minor flares associated with colds (sneezing, coughing) that cleared up rather quickly. The past couple of weeks, her anxiety seems to be up, in an "on and off" fashion, and she has been having brief but intense moments of aggressive/ODD behaviors. For instance, yesterday I was brushing her hair, and it was "hurting" her head, so she got very angry, stomping around, smacking me, etc. -- not full blown raging, just a few minutes of nasty, unreasonable behavior..... This morning, it was her brother interrupting her with a video game she was trying to help him with. She got unreasonably angry, hitting me, saying she hates both of us, etc. For the last month, this has been happening every once in awhile, but it seems like the past week or so it's been happening more frequently. The few months prior to that she really hadn't had any behaviors at all and was making progress with other symptoms too (eating, etc). We just got Spectracell results and some others.... The biggest, glaring result was her antioxidant function which was very low-- her glutathione level was completely tanked-- her Pans doctor said he's only had 2 patients with levels that low ever, and he is the only doc in this area that even does Spectracell from what I understand. So, we started S-Acetyl Glutathione last Monday, it's been 6 days. Question- could this be causing any sort of herx or issues? She's been having more "micro" odd/aggressive episodes in the past week than she has in months. Her doctor said we shouldn't see any issues because of the Acetyl glutathione, so I don't know if she was just heading in this direction anyway, or if it's causing a problem? Other results- positive for one copy of c677T mutation MTHFR (negative for A1298C) C4A level high at 6113, mycoplasma pneumonia IGM finally in range at 639, but IGG still >5. Total antioxidant function- deficient. Thoughts and suggestions appreciated! Lately when she has behaviors, all I can think to myself is that I'm SO SICK OF THIS she was doing so well, and she's still so much better than she was, but it's hard to see her having issues frequently again after such great progress. Hopefully just a minor setback.

We just received Spectracell results and learned that dd's glutathione levels were completely tanked. Her Pans doctor said she was one of 3 patients with the lowest glutathione levels he's ever had tested. Antioxidant function/Spectrox deficient overall. Just started S-Acetyl Glutathione, today was day 4. We have never tried NAC so I don't really know anything about it-- and am just learning about glutathione as well. Why were you trying NAC, and why are you considering glutathione? I am jus curious! From the little information I've read so far, it sounds like glutathione is the "mother of all antioxidants", however, it also sounds like the general consensus is that glutathione supplementation is difficult because the absorption is depleted by digestive processes. I'm very interested in any information anyone can provide! I'll follow up and update later on too.... Not sure what to expect, or what time frame to expect either, but am very hopeful that this is a missing puzzle piece that's been discovered!

My dd (just turned 9 this weekend) has myco p, and myco p is the only "confirmed trigger" we have to go on. (Her specialist suspects Bartonella also, but we haven't found it yet). Nearly a year of abx, and past 5 months has been 3 intracellular abx- Zith, Mino & Bactrim and finally within range for IGM's (in the 600's now) but still high IGG at >5. I don't know how to interpret your numbers, as it's always been presented to me that IGM should be <770 and IGG should be < .90 but I'm sure there are different "measurement methods" for this,... We just fund out through Spectracell testing that dd has quite severe antioxidant/toxin issues, and we're going to start working on those now. She also has 1 mutation of MTHFR, but we have to address toxins first before "messing with folate" again (we've tried this before, and it wasn't pretty!) Dd started school refusal last year (LOVED school previously) but I pushed her through it and managed to get her there, late, but got her there... My little version of ERP I guess, it wasn't easy but I did it. However, separation anxiety wasn't really her bigger issue- she had some, but not as severe as many describe on this board. I think myco is just really time consuming to eradicate. If her symptoms are that severe, I wouldn't expect a drastic change in a short period of time with meds, but if just Zith doesn't seem to bring improvements I would push to add another abx to her protocol. We didn't see any real progress until we added Minocycline, and she's been taking that,along with the others, since June. Zith wasn't enough in our case- doesnt sound like it is for your child either. Just a quick comment re:ocd, because you mentioned "obvious ocd" --ocd manifests in many different forms. It twists and turns, and is particularly difficult to assess in children. It takes so many forms, even throughout the day sometimes. Have you talked with her about it at all? Best wishes for you and your daughter <3 I feel your pain.... This is all so difficult and frustrating for everyone, good luck.

A quick thought I feel the need to express.... Sometimes the wrong therapist an be worse than no therapist at all. Therapists that aren't trained in ERP/CBT can do more harm than good. We learned that the hard way. a therapist that isn't well versed in OCD attempting to give a child with OCD "coping skills" can be frightening, and just teach the child to hide their behaviors better. I would likely recommend against any "counselor" or "therapist" that a teacher or school staff member might recommend. Just my thoughts-- might be a bit jaded because of my personal experiences, I admit. But just thought I'd put that out there-- proceed with caution on that one!

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

The information can be overwhelming, hang in there and keep reading! Like pr40 mentioned, pandas is triggered by strep, pans has other triggers. My daughter never had strep that I am aware of, but did have mycoplasma. ERP is Exposure Response Prevention, which is a form of CBT (Cognitive Behavioral Therapy). In a systematic and specific way, a trained therapist works with the patient with exposure therapy for OCD symptoms. CBT/ERP are well researched forms of treatment. However, I'm sure you could find mixed opinions about it's effectiveness all over this board! there hasn't been much research on ERP for Pandas/Pans kids specifically. From my own experience, I believe that most pandas and pans kids need to treat infection first before therapy can be effective. IMHO. If you're working with a doctor that is pandas/pans literate, and it sounds like you are, I would follow his recommendations. It seems to me that antibiotics are typically the first "test run" for treatment, however, if your son is ticcing (I have zero experience with that) than different treatment protocol may be warranted as opposed to patients that don't have tics. Does your son have any other symptoms? I would be willing to guess that your son's condition probably bothers him a great deal. OCD and anxiety are slimy lying bastards that make their victims lie and cover for them regardless of your son's diagnosis, whatever that may be, if he has anxiety and ocd, don't take no for an answer in regard to treatment. He may hate you for it now, but will thank you later I'm sure. Hang in there! This board is excellent. I've learned so much from it, there are so many caring, knowledgeable and supportive parents on here to connect with. Good luck!

Thanks. I seem to remember reading something abut Zith having anti-inflammatory properties, but dd isn't taking anything specific for inflammation. Currently on Zith, Bactrim & Mino, also Clak detox and Drainage Tone for detox. I will be checking into natural anti inflammatories, particularly as we wean off of abx. I think we were doing the Shoemaker panel. Our next appt with the PANS doc isn't until next month, and the results of last bloodwork are coming in now. The process between appts is a bit frustrating because I get a call from an assistant who probably knows less than I do about all of this, and she just relays info back from the doc, which is not efficient, but I do understand. The results are being mailed to me, so hopefully I'll have a better overall picture once I receive them! PR40- I've heard mixed reviews about 23andme. Quite honestly, I'd love to do it, but I can't really spare the extra $99 right now with everything else I'm shelling out I'm also concerned about getting all wrapped up in the numbers. Still trying to grasp everything I have before me, not sure if I'm ready to take on the results I've heard are obtained through 23andme do you feel strongly that it's significant? And that the results are a useful contribution to treatment?? Thanks for the input! It's appreciated!