BeeRae22

I would keep the appointment. Even if you just have basic testing done, you'll have something to look back on in the event that he has any issues later on. There are tests that I wish I had done a year ago on my dd when this started, but I didn't know a whole lot about pandas or pans then-- except that I was pretty sure that my daughter had it!

I am waiting for Spectracell results. I was told that it's typically more expensive, but that my doctor is able to order it directly (his office took the blood themselves) and the cost to me was $80. (No insurance involved). To be honest, I don't know a whole lot about what to expect from the results as far as how useful they will be dd's Pans started October 2013, so I'm only one year into this and still learning. http://www.spectracell.com/faq/

What about C4A? Any input?

Well, still waiting for Spectracell results, but got the c4a and c677T back. C4A is just over 6,000. I was told from the doctor's office that "normal" is typically under 4,000 but from everything I've been reading, it sounds like it should be under 2,500 at least. Question- would this number be affected by treatment? I'm wondering if antibiotics would've lowered this number? Dd has been an abx since Jan 2014, and this bloodwork was just taken last month. Also from my reading, this seems to be indicative of chronic Lyme. Thoughts? Comments? Dd has been negative so far for Lyme and confections- but we haven't done Igenix testing either, and we suspect Bartonella based on symptoms. C677T is "positive for 1 copy of mutation". I've been reading a bit about this, but if anyone would like to fill me in on their version of what this means really, I'd be interested! (LLM?!?) Regarding the above.... How freaked out should I be about mold based on these numbers? I ask because the roof of our house is full of mold (we will be replacing in the spring) and our basement is damp (I'm sure there's mold there too) and it seems like mold "shows up" in our house frequently. (Grout in the tub, thermoses, etc). Obviously I try to keep it as under control as I can, but could this be such a problem that we shouldn't be living here? That sounds dramatic when I say it- dd is doing really well (although she has a cold right ow, and has been struggling these past few days with that- some behaviors, etc.) she seems to be healing overall.... Wondering what kind of impact this could be having on her? As a side note, the only other thing we've "found" is mycoplasma. IGM is finally negative (was 880 at one point). IGG have been and are still over 5. (Shouldn't these be down by now too?)

This has nothing to do with Pandas/Pans directly, but I know that many of our kiddos have mold sensitivity issues, so I had to share. One of the chambers in ur Select Comfort bed has been deflating and losing too much air for a long time. I finally got around to replacing the air chamber today, and I took the mattress apart to do it, and I could NOT BELIEVE what I found-- the entire bottom of the eggshell foam inside the mattress was full of mold. I am so disgusted! There was no indication of any issues from looking at the outside if the mattress, and I keep not one, but TWO mattress covers on my bed. Apparently, Select Comfort beds (mostly made before 2004/2005) were made with foam that is not anti microbial. This was a $1200 mattress! We have another Select Comfort mattress (our daughter's) and we checked it, and it's fine- hers is a few years newer than ours. If you own a Select Comfort mattress, take it apart and CHECK FOR MOLD!!! My dd and I (she sleeps with me) have been sleeping on mold all this time, and had NO IDEA!!! I looked it up, and apparently there was a class action suit against SC for this issue!

My children are still little so I can't speak to the teenage aspect of parenting, but when I was reading your post I was "putting on my anxiety ears" while listening to your reasoning . Try to remind yourself that OCD is an anxiety disorder, and you can't "reason with anxiety". Your daughter is too busy worrying about beer being on a remote to consider thoughts of minimum wage jobs and the cost of Netflix frustrating I know, and I'm sure you know all of this already anyway..... Save those conversations for when she's well. If she can't get there right now, than she will some other time. Best of luck!

I think this is a very common scenario with families of Pandas & Pans children. Our family was nearly torn apart by pans. Our dd's symptoms began last October and she was in severe distress for about 8 months. One of the hardest things to distinguish is behaviors vs. symptoms, at least until you've lived with it long enough to know- if that makes sense! My daughter "held it together" all day at school, and when playing with friends (although she did have a few episodes with close friends at home a few times when things were really bad) but as soon as she got home from school it was a complete nightmare. When you have that amount of anxiety, your behaviors are completely reliant on how you're feeling at that moment-- so it often appears as if the child is only okay when they're "getting their way". My husband would constantly say that "this was behavioral" and that "she could control it", which was very frustrating. If you can get your husband to read as much as he can about this (%]{%<|{^>-ing!) disease, I would encourage that most of all.... If you can understand how it works, than you can "see" what's happening more clearly. Our daughter had a great few months, virtually no behaviors and no raging at all, and then about 3 weeks ago she came down sick with a cough and congestion. Along with the cough immediately came oppositional behaviors and full blown raging. As soon as her illness cleared up, so did her behaviors. No doubt about it, her brain was under attack. This episode showed even my (stubborn) husband very clearly how this works. Try your best to explain to your husband that your son is incapable of controlling his fears. I'm sorry to say that a lot of times men just don't get it. I wish my husband had been more willing to research the disease like I have, than maybe he would understand. I wish I had some advise to offer, but maybe it helps just knowing that your situation sounds really familiar. I can imagine that many families are torn apart by this disease.... The stress is overwhelming sometimes. But the good news is, it will get better. Maybe not today, or tomorrow, but your son will get there eventually. Wishing you and your family the best.

I suppose allergies are possible, but seems viral, especially since 3 of us in the house got sick.... She had a better day yesterday, started to have some oppositional/aggressive behaviors but I was able to divert her quickly and head it off, so maybe she's turning the corner. Was told to give her 400mg 3x a day for 1 week. Wish us luck

Dr. M is excellent- I would continue to follow his recommendations. Be sure to update his office frequently though very busy office and I think sometimes things get by them if you don't speak up. Good luck!

Another episode this afternoon gave her another dose of Motrin tonight and left message for doctor for the morning.

I initially had the same thoughts- that she wasn't feeling well, so I didn't push the activity. But like I said, she hasn't missed a class in 3 years, even through 8 months of severe pans symptoms.... I'm pretty sure now it was ocd talking, not how she felt. because shortly after the class started and she was still home, she was fine ( doing acrobatics in our living room), So far so good today.... No problems. Hoping and praying in was just a 2 day viral blip.

I can't speak for everyone of course, but generally speaking it sounds like most people on this forum find that most practitioners that are well versed in Pandas, Pans and/or Lyme do not take any insurance at all, mainly due to the fact that they can't be compensated for the amount of time that is required to treat these patients through most insurance companies. The doctor we use will provide a "super bill" that you can use to attempt to send in the claim yourself. I haven't had any luck so far getting any visits covered, but 95% of lab work has been covered. Best of luck!

We've never tried steroids... Bythe time we got around to considering trying them she was improving and we didn't want to disrupt that since it was going in the right direction. I'm frustrated, especially since she was getting so close to being back to herself. She's been adding new food items and has really connected with her new therapist (who, of course, is taking this coming week off). It's the same exact time of year that this began too, which for some reason makes it worse in my mind. The good news is that she doesn't seem to be pulling back on eating through this flare, but it really bothers me that she didn't go to her dance class last night. I should've made her go. I hate hindsight!!! I managed to get her to go on the Girl Scout hike, and she seemed to enjoy it, although she did get tired. Shortly after we got home the raging started (over a video game with her brother) and spun out of control- hitting, kicking, scratching, the works. It was really depressing. I sure hope she snaps out of this quickly. I gave her a dose of Motrin tonight, figured it couldn't hurt. Any other suggestions?

Ps. Thanks for sharing the article! (In my devastated state, I forgot to mention that!) I'll be reading the full thing tonight

Im, my dd proved that point today. Been good for months, improving every day. Came down sick with nasty congested cough Thursday night, sudden odd behaviors Friday night and full blown raging today. Coincidence? No.

Full blown raging this afternoon I'm devastated. I thought we were past this finally. It's been months since this has happened.

Thanks for the reply.... She still has many food issues, so I know I won't have any luck trying to supplement she won't take vitamins. Odd/mean/anxiety behaviors again first thing this morning. I am trying to keep it together, but this isn't good. Last night it was not wanting to go to dance, today it's suddenly not liking Girl Scouts. ( she loved it last week) I'll definitely be calling Monday if this doesn't subside before then ( I still have a little hope anyway).

Things have been going great. Eating again, responding to CBT with new therapist, no behaviors to speak of. Last night dd came down with a nasty thick sounding cough. Stayed home from school today. This afternoon, she was here with my mother, and when I came home I asked her (dd) if she still wanted to go to her acrobatics class. This class is her competition class, very important to her. She started whining, saying she didn't feel good, her stomach hurt, etc. My mother to,d me that she had been fine until then. Now, she sounds like she has heavy chest congestion, and undoubtedly she doesn't feel great. But this is the same girl who, even through the past year with PANS, and 8 months of virtually not eating, etc. she has not missed a single dance class (and she dances 3 nights a week) in probably 3 years. Even when she's been sick in the past, she still went to dance. She hasn't been "sick", with the exception of a few days of sniffles/sneezing/light cough for a quick couple of days in July since this started a year ago. Not only did she not go to dance, but tonight she had some odd behaviors, ran away from me/wouldn't talk to me, was being "mean girl" to her brother, etc. she hasn't been this way in quite some time now. I don't know what to do. She's on full doses of Zith, Mino & Bactrim, Cla-k detox and Drainage Tone. Awaiting results for spectracell, mold, Cunningham. MTHFR. I felt an immediate wave of anxiety myself when she started acting this way... I think I'm still struggling with PTSD from last year. I can't go through this again, I just can't. I'm trying to remind myself that it's only one night, maybe she just wasn't feeling good and that's that. I also feel like I should've made her go to school, and then dance to keep her routine. She told me later that she "was worried that she would get sick at dance". Legitimate concern, or OCD? Now I'm wondering if I enabled that rotten ocd monster :/ I feel like I can't subject her to any more bloodwork right now, since we just had so much done, but any recommendations/things to do or watch for (other than usual) ? I'm praying this was just a fluke, and tomorrow we'll be back on track. Please, please let that be it!

Thanks for posting! I hadn't seen this either, and I'm also searching for info all the time!

Mayzoo, Dr L is a knowledgeable and nice man, but unfortunately isn't very helpful in regard to treatment he is currently involved in research projects but doesn't see patients himself as far as I know, unless he's involved in a clinical trial. Also, his colleagues at Yale are not open to discussions on Pandas and Pans. They told me that they wouldn't dispute it, but wouldn't acknowledge it or treat it either. They told me that my daughter had an "anxiety disorder and ocd" and had no explanation to offer in regard to the fact that prior to mid October 2013 she was perfectly fine, and didn't have any of these issues. I wish I hadn't wasted so much time there, but I had nowhere else to turn at the time. They kept pushing SSRI's and subtly conveyed that they didn't agree with the abx treatment she was receiving, I am so happy that I resisted the lure of SSRI's for my 8 year old and her developing brain. She's doing much better now, and never had psych meds Dr. M is excellent, reachable, understanding and incredibly knowledgable. He also isn't an alarmist, and will tell you what tests are necessary and which ones can wait if you have financial concerns, and goes on the premiss that we treat symptoms and patients, not necessarily test results. Dr. B's staff is rude, and regardless of his abilities, Just based on that alone I wouldn't go there unless I had no alternative. IMO staff speaks volumes about a physician. Quest lab Lyme tests are very unreliable at best. If your son was/is experiencing tics and/or neuro psych symptoms after an illness, I would seek treatment ASAP. How old is he? Best wishes....

I'm surprised that you even got that much of a response from Dr B's office. If people weren't so desperate for help, I suspect he wouldn't get any business because his staff is incredibly rude. My 8 yr old was literally starving, would go weeks a a time without taking a bite of food for fear of choking, and they wouldn't consider her as a priority patient- I was given a nasty retort, and put on a 5 month waiting list I realize that his office is busy, but I had enough stress in my life already, and really didn't need to deal with any nastiness! I'm going to pm you with info for a great CT doctor. Good luck!

So, you attribute her anorexia to Bactrim? Please elaborate in detail?! My dd had/has severely restricted food intake due to ocd/fear of choking and swallowing,.... She didn't start taking Bactrim until months after onset of this, and is still on it. She started eating again after the addition of minocycline. (Now on Zith, Bactrim and Mino). I am interested in your experience with this. Thanks!

Is that his only symptom? And it's only when playing iPad and watching tv? I'm not a doctor, but if that's it, I'm guessing its not pandas. Which is great! Usually a kid with pandas becomes a different child-- unusual behaviors, ocd, odd, tics, neurological symptoms, etc.

I retract that and apologize...

That's great if your ped is open to learning... I hope they continue their interest in helping your child-- just be prepared for that interest to wane quickly most aren't willing to go the extra 1,000,000 miles that are usually required to treat Pandas, and even if they are, they aren't experienced enough or knowledgeable enough to treat effectively Pandas treatment is most effective when treated early, so if the ped drags their feet for too long, you should get your son to a pandas doc as soon as you can. You might want to do that anyway. In the meantime, Push for longer term abx if you can. If it's pandas, 5 days is most likely not enough to take care of anything watch for unusual behaviors, and start taking notes each day-- if this continues, those notes could really help for evaluation later on. Pandas symptoms can come and go too, so keep taking notes even when you see improvement too!