BeeRae22

Did you mean CBT? We are doing that, we're 7 sessions in.... No progress yet.

I wasn't going to comment here, because I'm sure that many on this forum wouldn't agree with me but here goes..... I would not be so quick to jump to the conclusion that your daughter has Pandas. For one thing, one of the biggest defining markers is sudden onset. So, "early signs of Pandas"??? I don't know about that. The next thing to consider, is that there is a difference between OCD and Pandas. And don't forget, OCD does tend to run in families. You can have OCD, which can also present with depression, and therefore lethargy, and not have Pandas. Having OCD doesn't mean you have Pandas. Next, kids get sick. Period. Lastly, I would be careful not to project your fears onto your non Pandas children.... I say this with kindness and empathy... I worry about my son, but this is a RARE disease, and kids are very influential-- that's why therapies like CBT and ERP are effective, because our minds are "bendy" -- especially kids!! My son is just finishing kindergarten-- in the beginning of the year he had severe separation anxiety, and I can say, without a doubt, that that was about 90% MY FAULT. I am a stay at home mom, protective, and talked in front of him way too much about how the full day kindergarten (it was always 1/2 day in our town until this year) was going to be too much for him, that it was too long, etc. let me tell you that in looking back, I never should've whispered a WORD of that in front of him. If I hadn't, I'd be willing to bet that is wouldn't have been nearly as bad as it was. We are all learning here, and I struggle every day with decisions regarding my daughter's condition. She hasn't eaten a regular meal in 7 months now, has severe ocd, rages, and a bunch of other symptoms that all came on in October, suddenly. But even with that, I am taking her for CBT with one of Leckman's colleagues, and they are still wanting to table this as "anxiety disorder/OCD" and leave it at that. (Her pandas doc thinks differently, and so do I). In trying to be objective, all I'm saying here really, to sum this up! Is to be careful, in what you say, and what you do. 9 is a VERY impressionable age (my dd is 9) and they DO hear EVERYTHING you're talking about, are easily influenced, etc. and don't forget too, that if you research OCD thoroughly, that almost EVERYONE, OCD or not, has rituals, obsessive thoughts, compulsions, from time to time that do not constitute a disorder or disease of any kind...most often, it's normal. Think back to when you were a kid and some of the silly and weird things you did (step on a crack, break your mother's back! Friday the 13th is an unlucky day!) -- With all of that said, who am I to say your daughter doesn't have it? I hope she doesn't. I'm not saying you should ignore anything, but I would also think twice before you start bringing her for testing, etc. and put something in her head that wasn't there either....and I do think that's possible, Especially after all of the research I've done on OCD and ERP. The brain is plastic, mold-able even. CBT & ERP are just THERAPY Methods, and can reduce symptoms by 60-80% in OCD patients that take to it. These therapies have been found to actually increase serotonin in the brain-- and that's amazing when you think about it. I'm not saying that it's effective for Pandas kids (hasn't worked for us yet!) but just giving you something to think about

Well, she had her first dose about 5 hours ago, and no issues so far. I know that reactions can happen several days in, so here's hoping that it'll be okay. (Especially since she has a big dance rehersal and recital this weekend.... now that im thinking about that, maybe i shouldnt give her any more until Sunday, she would be devastated if her weekend was ruined!) There aren't many pharmacies that do compounding that I can see (in CT) and even if I found one, I'd be willing to bet my insurance wouldn't cover it, and can only imagine the ordeal I'd have to go through to get it! we will try the Bactrim for awhile and see how that goes. The air hunger hasn't been that frequent, but enough to where I've noticed it in the last few days.... Will keep my eye on it, but I try not to say too much to her or ask too many questions unless I think something is wrong-- don't want to put any ideas in her head to dwell on.

She's also been raging again lately, and in the last few days displaying "air hunger" which is new for her..... Anyone?

For those of you who recall, my dd started with pans symptoms in October. Primary symptoms are not eating and ocd. She's been on Zith and Augmentin, and her doctor just prescribed Bactrim because rifampin doesn't come in liquid. Interested in comments, suggestions? Side effects? It makes me so nervous, all if these abx. Anxious at the same time to try something new.

Update- Session #6 CBT. No significant changes. Still on azithromiacin, Augmentin, Cla-K detox and Drainage Tone. No significant behaviors (funny that I just wrote that, and then remembered that she had a somewhat sizeable upset on Mother's Day, which was only 5 days ago!) but underlying agitation most if the time, gets worse when even a tiny bit tired. Or when she has homework. Seems lethargic at times, is often mean. Still not eating, although she is expressing a bit of interest just recently. Still not enjoying school, doesn't want to go. Expresses separation anxiety at times.

Looking for opinions.... How often do you switch meds? At what point do you say, this isn't working, or let's try something new? Dd has been on azithromiacin for 120 days or so.... Augmentin for 7 weeks. Now added Cla-K drops for detox. I don't see any difference. The only other things we've tried have been A-Myco drops, and Drainage Tone. Anyone here that's stopped all abx, etc. to see what happens? I am considering a med free trial in the summer but terrified to do it. Dd seems to have a wax and wane of symptoms, regardless of meds but it's hard to tell. She has elevated myco p, and while she tested negative on western blot, doc (and I) suspect Bartonella.

Hi Maryaw, yes, we are seeing one of the doctors on the list. While I really like him, I can't say that's feel that he's been very aggressive with treatment. Or maybe I'm just growing impatient, I don't know. How often should meds be switched? In 4+ months, we've only tried 2 antibiotics, and herbal drops. I think I may post that as a topic now that I'm thinking about it!

Thanks to all of you for your kind words..... I am still struggling with dd not responding to treatment. Se has been flairing lately and hasn't eaten a regular meal in 6 months, and I haven't, don't want to, and cant, move to a place of acceptance with this, at least not now. I try really, really hard to not let it get me down, but it does. I am feeling like every aspect of my life has been infected with Pans and I don't know what to do about it. My work, my colleges classes, my finances, my house and my family are all suffering with it. It's not helpful to acknowledge that it could be worse-- I'm aware of that. Just wanting to wallow in my grumpiness for now I guess! I haven't been in this place emotionally since this started-- I've been certain to this point that we would figure it out and that she would get better. Now I'm not sure that I believe that any more, and it's a really depressing thought.

I had a depressing thought today.... I am starting to wonder, at 6 months into this journey, am I a complete fool to think that my daughter is going to get better? I want her back. I want our regular lives back so bad. I don't want this new normal. Am I supposed to feel great full that she's still going to school? That she still has friends? Because, maybe next year she won't? Having a bad day

http://www.panslife.com/what-schools-need-to-understan/ I thought this blog was awesome. I fully intend on sending this on to my daughter's teacher for next year, if I need to. (Here's hoping that she'll be better by then though!

yes, sorry-- NC! I knew that! My brain's not working too well today... I am slipping into a bit of a depressed funk myself right now. My daughter's episodes/symptoms of this weekend and refusing school this morning and our impending 1 hour drive to Yale this afternoon when I have a million + 1 other things to do is getting me down. This has "only been" 6 months for us, which I know that compared to many on this forum isn't a long time, but it's been a lifetime's worth for me. I still can't believe all of this is happening sometimes, and I so desperately want it to be over. Anyway, going that far out of state isn't an option for us at this point. Although I should probably start considering it now because I'm sure planning will take months, and if we're in this same boat months from now, I don't know what we'll do.

I was just reading an interesting blog about tracking the Lyme cycle. The person to tracked their symptoms to identify the Lyme disease reproductive cycle within themselves. It was just suggested to me by dd's llmd that her symptoms are mimicking the Lyme cycle (she has not tested positive for Lyme, only myco p so far). Does anyone use a symptom tracker? I would be very interested in finding one, or creating one! I do jot down notes to track her symptoms and meds, but my system is very unorganized and sometimes several days go by and I get too busy to sit down and write, and it's hard to get a grasp on the wax and wane patterns by looking at my notes. Anyone have an effective and user friendly system?

Also.... Duke? As in, California? That unfortunately isn't an option for us at this time.....

Dd was tested as follows: comprehensive metabolic panel, myco p, rickettsia, immunoglobulin g subclasses panel, Epstein Barr virus early antigen D AB & VCA antibody, streptozyme screen, brucellosis AB, bartonella species antibodies, ehrlichia chaffeensis, barbesia microti, anaplasma phagocytophilum antibodies, immunoglobulin M, CBC, Lyme western blot, and e DNase strep tests. All were normal range/negative with the exception of Myco P which was IGG >5 and IGM 887 Specialist keeps saying that symptoms indicate "reproductive Lyme cycle". ?? I am waiting for a call back re: trying a different antibiotic. Meanwhile, my daughter is sitting here, refusing to go to school because she "is in a bad mood" and when I very calmly talked to her about school, she says it's "too hard for her" and she "doesn't like leaving me all day" and "everything at schoo, bothers her". She also had an "episode" after her dance competition this weekend, in front of friends, which isn't typical for her. (Usually saves it up for home) -- she had ODD behaviors, making "THE FACE", refused to sit with us at lunch, nAsty to friend and friend's mother, etc..... Tis isn't HER at ALL. We're at 6 weeks Augmentin now, on top of the Zith. Time to try something new. CBT at Yale today, which I'm not convinced isn't a complete waste of my time. My 8 year old doesn't eat, and is not at school. We really need some help.

Augmentin 200 2x a day.... It says right on the Moleculera site that they don't take Medicaid Interesting about the Pharmanac, I will look into that! But her skin picking isn't my bigger concern. The raging, ODD and most importantly not eating are priority. I want to try doxy, or minocycline and am going to try to push for that when I call tomorrow,... Or at least want an answer why NOT to try those. I think the doc "forgets" that she's not eating, maybe because he's used to treating chronic illness as suggested above, the details of symptoms get "lost" in the shuffle? I am concerned about the long term affects of her living on Boost, especially with taking all of the abx at the same time.

Your daughter started eating just for taking the Zith? My dd is on 200mg/day Zith and 400/day Augmentin. The eating piece did improve for awhile after 2 weeks of Zith, but then she slid backwards again.... I would love to do the Cunningham panel, but have Medicaid and can't really afford $1,000 for a test that could be inconclusive We haven't tested any family members yet. Dd started at 51/52 pounds, dropped to 47 or so, and because of regulated intake of high calorie Boost, she actually is back up now to 51pounds! But she is completely living on the Boost-- she doesn't eat anything at all. I am terrified that she will decide one day to not drink the Boost. She is (rightfully) sick of it, and sometimes refuses now. This isn't a solution, but it's keeping her weight on, and keeping her it of the hospital, which, for someone in her current mental state could be devastating. We need help. I wish I knew where to turn next.

I couldn't open the link....

I had also asked about checking for other viruses as suggested above, and was told by assistant that "she was already tested for everything".... And when she realized that I wasn't accepting/pleased with the responses I was getting re: meds and testing, she suggested that maybe I should make another appt. I was just there 2 1/2 weeks ago for $250. I don't need another appt to know that that my daughter is still having behaviors, and still isn't eating. I need to try something else is what I need. I don't know about these Clak drops, but I don't feel like another herbal detox remedy, in addition to the one we're already trying,.is going to be enough to make any changes. While I do think that SOME of her eating behaviors may be "learned" at this point, I'm nOT convinced that she couldn't improved if treated with the correct antibiotic that would hit on the infection and help her symptoms, especially since it's not as if the eating piece is the only issue. Maybe I don't know anything..l.l maybe the Zith and Augmentin are keeping her on an even keel and she would be a complete mess without them. But I know that they're not enough. And while I think the CBT is going to help, I don't think that's going to be enough either. And I'm not ready for psych meds.... I think she needs medical treatment, not psych meds.

Jenniferg, my daughter had a full GI work up, including an endoscopy and nothing was found that indicated that she had any issues whatsoever in that dept, so I'm pretty sure that's not it. She has an appetitie, it's not that she doesn't WANT to eat, or isn't "hungry", she is terrified to eat, and the texture of food disgusts her. But I do appreciate all input anyway, so thank you Heard back from specialist's office yesterday and am still very frustrated. He wants to keep her on the Zith, and Augmentin, and Drainagetone, and now add Clak? Drops? I haven't had a chance to research these yet, but I am frustrated with keeping going with the meds we're already trying. Dd hasn't eaten a regular meal in 5 months. This isn't working...... I wanted to try one of the tetracyclines (minocycline, or Doxy) and got the response from the assistant that "this is the course of treatment that he thinks is best for her right now".... I really like him, but I don't agree. 100+ days of Zith and 30+ days of Augmentin is enough Of a trial IMO. Next! We don't have time to lose. I'm getting ready to seek out another Pandas doc and pay another consultation fee, but I feel like I shouldn't have to. Already paid almost $1,000 for evaluation, and additional visits. Can't afford to kee throwing money around! Need results....

What is T&A?

Waiting for a response from Dr. M re: testing for viral infections, trying Doxy or something else.... Thanks for the responses so far. Rachael, we are far removed from your experience, my daughter was tiny to start with, and the restricted eating is what began this whole thing, it wasn't a result of it... Her fear of choking/swallowing is far beyond threats of hospital and feeding tube, we've had that conversation many, many times and it doesn't do any good. She is completely living on Boost, Popsicles and ice cream. She wants to eat, and get better, and stay out of the hospital, but is terrified of food. I can't help but to think that there is a med we aren't trying that would help rid her of whatever is causing this and make her better.... I want to try something else. I think 100+ days of Zith is more than enough to determine that it's not working.... But maybe I'm wrong. Maybe she'd be a complete mess, worse than we've experienced without it??? At right around 2 weeks she seemed to "respond to" the Zith, and again around 2 weeks of Augmentin a "positive response". But I question if it was actually the abx, or just a cycle in this infection (or whatever it is!) that would've improved anyway? I don't know.... She also takes Drainage Tone drops, and now it's being recommended that she take Clak drops... Not sure how they differ (waiting for an answer on that too) and wondering if any drops are going to do any good anyway?? My husband wants to take her off of all abx. I'm afraid to do that, at least right now. Maybe in June, when school's almost over. She's currently fine during school which I'm thankful for, not really willing to risk changing that at the moment... Things are hard enough! Back to CBT tomorrow. Still skeptical and hopeful about that. It would be great for her to learn coping skills for the symptoms, but what I really want is for the symptoms to go away. She shouldn't have to just "cope" ! I think that after 6 months the eating piece of this will need to be dealt with regardless of medical treatment, anyone that's restricted themselves to eating only ice cream and occasionally a few bites of grilled cheese soaked in soup broth for months is going to need to learn how to eat again regardless. But the other behaviors?? ODD behaviors, skin picking (has gotten worse again lately), raging, struggling with homework (never a problem before) short term memory loss, attention span, unusual fears, OCD symptoms? Surely, something can be done to treat the infection that's causing all of this? I hope??? I still can't believe this has been going on for 6 months. I never, ever thought we'd be here... Still. It's frustrating and depressing.

Did you mean another pm? I wrote this after I got your message I just realized that maybe you meant the first one!

Some of you may recall my posts about my daughter. We have been dealing with this since October. Seeing specialist since January. Just went to respected OCD clinic for eval and started CBT this morning. Skeptical, but hopeful at the same time. I am so frustrated with everything. Azithromiacin for 100+ days now, Augmentin 33 days. Day 17 Zith saw "improvement" and "response", had a good run for a few weeks, and backpedaled again....behaviors worse than ever. Augmentin 12 days, saw "improvement" and response, good run for 2 weeks or so, and ODD behaviors, skin picking, etc. picking back up again but not spinning out of control like before. Are the antibiotics working? Is it a fluke? Why such severe symptoms, improvement, worse symptoms, improvement again, and now somewhere in between?? Eating piece of the puzzle remains throughout, although we did have a bit of improvement for a few weeks there. We were actually at a well respected OCD clinic today,to begin CBT and I called her specialist to set if we should change antibiotics again. I am so frustrated with this whole thing.... I feel like we're loading up on antibiotics and not sure if I can attribute any changes in behavior to "medication responses" or not. I am really trying to avoid any psych drugs if possible but will consider them if the CBT doesn't work. My daughter is only 8 and never had any of these issues before! It was incredibly frustrating to have the OCD clinicians more or less chalk up her behaviors as an "anxiety disorder". Well, yes.. she has anxiety. But she also doesn't eat, rages, picks her skin, has ODD behaviors, flips out over (getting my hair cut? simple comments? forgetting her jacket?) hates school now when she used to love it, the list goes on and on.... this isn't just "anxiety". no way. She has elevated Myco-P titers, but we haven't found anything else. Yet. I'm not convinced that she doesn't have Lyme. We just haven't found it yet. I don't know what to do anymore. Try quitting the antibiotics? Change them? Keep going? I'm afraid of any decision! We switched her to a high calorie Boost drink, and have actually gotten her weight back up to where it was (she was down 4+ pounds) so we are on track with that for now- but she still doesn't eat. Anything. and the behaviors continue. I can't believe this has been going on for 6 months now. This "new normal" sucks. I'm tired of sugar coating it.... it sucks.

If I have anything to do with it, she's not going to get the tube the thing is, while her ped says "it's not the end of the world", I know it would be too much for her and its not going to FIX anything. I'm staying on it, and pumping her full of as much Boost as I possibly can until I can get her into a program. It's just that this can't go on any longer, or we're going to be out of options. If I can get her in somewhere within a 2 hour drive, than I would do it today. Something's got to happen here. Thanks Pr40, I'm going to email them tonight.