BeeRae22

llm, how would I go about pm'ing the people you mentioned? I would really like to chat with someone who's dealt with this themselves.... pr40- we did the full blood work up for Pandas- strep, lyme, etc. all results were negative. Dr. M did say that the lyme testing that's available is insufficient at best and the negative result doesn't really mean anything. I think he suspects a lyme co-infection. DD wasn't on antibiotics before this. She did have a cold/sore throat when it started in October, but the strep tests that we did in early January were negative. She wouldn't try to dilute the Boosts or anything like that.... we are working on getting more into her each day to meet 1200 calories per day. For the past couple of weeks she has been going to OT 1x a week and at dinner we "try" to have 10 bites (the bites are pea-sized and it's a huge effort for her to do it). I am thinking about completely taking the pressure off and not insisting on trying for the 10 bites any more to see if that goes anywhere.... It is a huge strain emotionally on both of us and it doesn't seem to be helping. She is willing to drink the Boost and isn't trying to not eat or restrict calories- in fact, she wants to be better and eat, and avoid going to the hospital and seems willing to help me out with that, as long as she doesn't have to chew and swallow food! I am always on the fence about whether or not I should make her "try". Most people I've talked to tell me to "try to get her to eat, but don't create any anxiety around eating". Well, that's a contradictory statement if I ever heard one! There's no way possible to do that! I would love to connect with someone who's dealt with this aspect of PANS. I often feel as though I'm doing everything wrong.

Hello again! I've posted several times- DD with emergent condition. My daughter has exhibited symptoms of PANS since the beginning of October. The major symptom is restricted eating. It's been 2 weeks since we've seen Dr. M and she's been on antibiotics. Her psych symptoms seem to have dissipated, (they had eased off in the week before we saw Dr. M anyway) and her general mood and disposition overall is better. However, the eating piece has seen very little improvement. I will admit that since starting the antibiotics, she has been a LITTLE more accepting of: 1. having food put in front of her 2. taking teeny tiny bites of certain foods, IF I feed them to her 3. drinking chocolate Boost (but I think she does this more willingly, knowing that if she drinks enough I won't push the food trying as much). We do not know for certain that she has PANS. All of her bloodwork so far has come back negative for everything.... So, my question is-- at what point do you decide that this could be a psychological problem or disorder? My bigger question is-- (more for people who've worked with Dr. M) At what point can the doctor determine if this is a psych issue vs. medical-- and more importantly-- will he be willing to make that determination?? I don't see how this could just be psych. I haven't been able to come up with any psych disorders that mimick her symptoms either.... maybe I'm just reaching for a faster answer, but my dd is NOT eating enough, and she is still high risk in regard to her weight and health. I need her to eat! Has anyone here dealt with restricted eating issues? How did you handle it? What kind of progress should I expect or hope for? I am so tired from worry I don't understand how this all started and got to this point.

So, I was so thrilled that dd ate something new,... Yesterday and today we're back to basically nothing. Now I'm wondering if that was a psychological effect or not. I'm sure that the bad cough/cold she has is not helping at all. She did ask for a cheeseburger last night, but didn't eat it. but I suppose that having her even ask for something is progress, since she wouldn't even try before.

So, I've posted about my dd several times now-- "daughter with emergent condition". Took her to a specialist, who agrees she has PANS symptoms and suspects possible Lyme coinfection. Well, she has now been on antibiotics for 48 hours, and for the first time in 3+ weeks she just ate something other than bread and ice cream! So, she ate almost a whole hotdog. Now, this was one of the foods (one of the only foods) she would eat for awhile, until she eliminated that and went to strictly bread and ice cream. She was terrified to eat anything else. Not that she didn't want to, but she was terrified. I don't want to look a gift horse in the mouth, but is it even possible to see improvement in symptoms in 48 hours? Or is this a psychological effect, having gone to the specialist and getting the "medicine that's going to make you better" ????? I have to wonder... I'll take it, either way, I've never been so thrilled to see someone eat a hot dog!!! what's everyone's experiences been with starting treatment? I'm sure I'll never truly know the answer to my question, but I sure would like to! The doctor also told me that there might be a flare up of behavioral symptoms, and that that would actually be a good thing, because it would more accurately pinpoint the idea of a Lyme coinfection. Right ow, we're not exactly sure what we're dealing with. The Lyme test she had was negative, but I was told that that doesn't necessarily mean she doesn't have PANS. I've had several different sources tell me that there are a few different coinfection s that result in psych symptoms. The restricted eating was not her only symptom, she's had a number of other behavioral symptoms and personality changes as well. It might be my imagination, but she seems a little more "lively" and animated today than she has been, and the school psychologist actually commented on how smiley and happy she seemed today.... Breathing big sigh of (hesitant) relief. For the first time in several months, I feel like there's hope for recovery..... What a difference a hot dog can make!

Also, my SIL, who works at CT Children's Medical Center satellite office, has spoken to a neurologist who is interested in my daughter's situation and is willing to see her. The ped is willing to write a referral.... wondering if I should take her, or not? Why, or why not? I've not heard of good experiences with neurologists on this site. Feedback appreciated.

I am the same posted for Daughter with Emergent Condition.... My daughter, who just turned 8 in November, is now only eating bread and choc ice cream. She has had out of character episodes, including a complete meltdown and tantrum because I got a new haircut, complete tantrum and meltdown over not having her warm up jacket at dance class, and a horrific, sudden rage episode. She suddenly dislikes school and has at times refused to get ready to go, when she used to love school. She has expressed having sensory issues about the cafeteria at school, and about certain clothing, and described one of the paras at her school as a "scary witch"-- again, completely out of character. She has always picked at small scabs on herself, but it's gotten much worse and now she rubs and picks at her fingers all day until they're raw. She also picks at her lips all the time..... This has all happened within the past 3 months. Well, now she has a cold which includes a cough. She complains that her head and back hurt. She is now starting to even refuse the bread because her throat hurts. I haven't been able to get her to drink any protein drinks to date, but I did convince her to drink a little last night and this morning, in lieu of the bread.... We just heard back from her Ped, telling us that all of the bloodwork came back normal, with the exception of her having high cholesterol. I have requested a copy of the results and will be picking them up in the morning. If the strep is negative, and the lyme is negative-- what else could this be???? Anyone know??? Are there other psychiatric or neurological disorders that could cause this? I feel like I'm losing my mind! :/ Is it possible that this is all just anxiety from her moving to the intermediate school from the elementary school? (same school system, same classmates, etc.) Can anxiety suddenly become such a big issue that an 8 year old can become completely terrified to eat anything???? The only life raft I have right now is that we have a (first) appointment with Dr. M tomorrow. I will have her bloodwork results in hand. I am praying that he can help. It doesn't seem like anyone else can at this point. Any positive words of encouragement appreciated..... in regards to Dr. M would be even better.

thanks. She won't let me do anything to her icecream... in fact, when it starts getting "melty" she stops eating it. She won't drink smoothies, and I've tried blending ice cream shakes, etc. and while she enjoys experimenting and making them, ultimately she doesn't drink them. She won't touch any protein shakes (ensure, boost, etc.) because of the taste, -- I try to add it to the Hershey's Milkshakes that she'll drink (the premade choc milk kind you buy in the dairy section at the store) but if I add the tiniest bit too much, she detects it and won't drink it. Then she starts worrying that I'm messing with her drinks/food so I have to be careful about adding anything. I would like to find a flavorless protein powder to possible add to her pizza sauce that she dips the bread in. I'm afraid that we're getting away from the bread now too though.. last night she hardly ate any of it. She had a 1x bought of diarreaha after dinner though, so I'm hoping that it was just an upset belly that had her eating less than usual. (if that's even possible). I'm nervous about these "phone consults". Do people really do this??? I suppose that it would be worth a few hundred bucks to get her started on antibiotics, but don't like the idea of her not being monitored by a doctor while being on them either-- and I've heard that people have a hard time getting ahold of some of these doctors after the initial phone consults....... I don't want to play doctor with meds of any kind- I want to get her a doctor. I am so scared for my girl. I just want her to be healthy and happy like she was in September.

Actually, I need to revise something in my posts.... Dd doesn't have anorexia, (as far as I know) since, by definition anorexia is an irrational fear of gaining weight and/or distorted body self-perception. Dd has sudden fear of eating/choking/swallowing and as a result, has exhibited sudden restricted food intake. No choking incident or anything like that, that we know of.

He ordered the titer strep tests, she was never tested for strep when this started, but I do remember her being sick, with a cough/sore throat around the time that this started. I haven't been able to find any other diseases or syndromes that might account for sudden restricted eating/anorexia in an 8 yr old child. PANDAS seems like the only reasonable diagnosis, particularly with the sudden severe ocd symptoms paired with it..... If I could come up with something else I would-- this feels like a never ending nightmare that's only just begun. I am concerned that if she tests negative for strep, which sounds likely, than we'll be back to square one and have gotten nowhere. I asked Ped what "plan B" would be if the results were negative, and he was talking about going back to GI, counseling, OT, etc. which we have already exhausted (in my opinion). He does not believe that this could be Lyme related in any way either, so if she tested + for Lyme, I'm not sure what his suggested course of treatment would be either.

What is CBT? I don't know that he would believe me at this point if I suggested that she is now going to the bathroom all the time. , right after I asked him to start her on antibiotics. As desperate as I am at this point, I'm not ready to start fabricating symptoms.....

I posted awhile back about my dd, (recently turned 8) that has suddenly stopped eating. Everything- except home baked bread, and choc ice cream. She will drink milk and juice also. This has been going on for almost 3 months now. I am trying to streamline my time line, re: doctor's appts, restricted eating, and other symptoms. I am a little blurry because at one point I had been taking her to the doctor for frequent stomach aches, and then later for the restricted eating. I finally brought her to the pediatrician again last week, having gotten nowhere with the feeding team/hospital, and told the ped that I think she has PANDAS. A first he seemed to not know what we were talking about, and then said Oh, yes, pandas- that's a real disease. I was so relieved, since I didn't think I was going to make any headway re: pandas with a regular ped. He ordered bloodwork for strep, and Lyme at our request (although he claims that Lyme has a "bad rap" and there's "no such thing as chronic Lyme" (yikes! Really?,) and a bunch of other tests, and we were on our way. So, that was on Friday. Over the weekend I couldn't sleep for thinking about all of this, and have been panicking since. Dd's symptoms have been getting worse rapidly. She's recently had a couple of episodes of outbursts of pure rage which were scary and sad and horrible. We are walking on tip toes around her, not knowing what's going to set her off. So, Monday morning we brought her for the bloodwork. Tuesday I called the ped again to ask a few questions... They went like this: Me- would you be willing to start her on antibiotics while waiting for test results? Ped- no, I don't want to expose her to antibiotics when we don't know what it is Me- have you ever treated someone with pandas before? Ped- oh yeah, but with the peeing thing, not the eating thing. (EATING "THING?!?!" Seriously? My dd only eats bread and ice cream, and you're referring to that as an eating thing?) I've come to discover that this ped's confidence WAY exceeds his abilities. He "doesn't need to talk about her other symptoms, including the ocd symptoms???? How can this guy even suggest that he is capable of diagnosing and treating this condition??? Aren't the other symptoms, along with the "eating thing" just as important in diagnosis??? Is it me??? So, this leads me to my big question.... How far back will a strep test indicate strep having been present in the past? I have been trying to pinpoint exactly when this started, and my best guess was that it was mid October. (In regard to the "eating thing" anyway). If her restricted eating started a few weeks after the strep infection, (which from what I've read it sounds like that's possible) than couldn't she have had strep as long ago as September? Will the test reflect an infection that started that far back? I'm not sure how that all works. I have an urgent call in to Dr M and have been told that we will get in by the end of the month. I want to continue to try to get in with Dr B but have not had any success yet. In the meantime, I am terrified. It is all we can do to keep enough calories in her to keep her going at this point.... She is down approx 10% of her body weight and was tiny to start with. I am so anxious to get this test back, but am not a bit confident that the ped knows how to interpret it. I wish he would give her antibiotics in the meantime, but he won't. Any advise, suggestions appreciated. Anyone know of a ped in CT willing to help while waiting for a specialist? All I want here is to start her on antibiotics. Doesn't seem like too much to ask. Se hits all the markers for pandas... Absolute, major and minor. I am 99% confident that this has to be what's going on. Why can't I get any help, before she ends up in the hospital or collapsing? This is completely crazy, 3 months ago my girls was happy, healthy, loved school, etc. and now she's not eating, picking her fingers raw, having rage episodes, sensory issues, depression signs, anxiety, etc. and getting worse all the time. Can't someone (who knows what they're doing!) just HELP US?????!!!!! Please?

I did look on the webpediatrics site and am interested in emailing,,, what is the cost associated with "treating over the phone"? I'm not sure I trust any of the forementioned "phone consults" for hundreds of dollars. Sounds like people have done it and then not been able to contact the provider again after that. I would be very interested in getting antibiotics sooner than later, I agree that there is much to gain and not much to lose by trying. Should I seek out another pediatrician? DD meets all of the criteria listed on that site. I am 99% certain she has PANDAS or PANS. I wish we didn't have to wait 2 weeks for an antibiotic. Maybe I should start calling around to see if I can find a ped willing to start her on something now???

Tomorrow morning she goes to have bloodwork done to test for strep, etc. I was told it would be 1 1/2 to 2 weeks to get the results back. If she tests + for strep antibodies, her pediatrician is willing to start her on antibiotics. I would love it if he would start them before then, but seems to be learly of doing that without test results. I'm guessing that even if I could get her into a specialist before that (which is very unlikely) that they would want to do the testing that we're doing now also. By doing it with the pediatrician, it's being covered by insurance. Who would guess that you would ever want your child to test positive for strep??! :/ I am scared and terrified of the days and weeks ahead....

Just thought I'd update..... feeling a bit of relief. Pediatrician- "PANDAS is real" !!! However, sounds like he doesn't acknowledge PANS, so we'll see.... gave me lab workup for strep, lyme (because we requested the addition of it) and several other tests. Told me not to go to far off psychologist recommended by the feeding team, and says "we will work together on this until she's fixed". In the meantime, I'll keep baking that homemade bread and scooping up the chocolate ice cream, and hope that I can get enought calories in her to keep going until the lab results come back in approx 2 weeks. First OT appointment is on Monday which I will keep. Very unsure what to do about school, and the fact that she is fearing the cafeteria and won't eat her lunch there. School Psychologist claims she "can't have her eat lunch elsewhere everyday, but if she was "having a really bad day" or something, she would see what she could do" ????? What am I supposed to do with that? Every day is going to be a really bad day as far as I can tell....... and I can't have her skipping meals. Have to wait until Friday for them to get together to even schedule a 504 for the following week.

Help! Someone gave me a link in a pm which I now can't open-- with info to print to bring to the pediatrician's office. We are going in a few minutes :/

Dcmom, who is Dr K?

Thanks to everyone for the comments and pm's. I have an appt with the pediatrician tomorrow and will go armed with information and see if I can get anywhere with having some tests done. If unsuccessful, I'm going to try to find a Pandas/pans sympathetic pediatrician. I am also going to call Dr M's office again, and will try Dr L at Yale also. I spoke to dd's therapist before her appt this evening and gave her my thoughts on PANS. She seemed open to it, but didn't seem to have any suggestions. I have dd go to her for the anxiety piece of the puzzle, and she really likes the therapist. Tonight before bed she again expresses fear and disliking of school, and even described one teacher as being a "scary witch". I guess this one teacher always says to her "you're laaaaaate again" in a singsong voice, and it's freaking her out. This must be a para or something, I'm not sure. But for my girl to even suggest that any of the teachers are "scary witches" is incredibly out of character. She's always loved everyone at school, especially all of the teachers-- even several who didn't deserve her admiration at ALL and has NEVER said anything negative about a teacher EVER. She tells me that she's afraid of school, especially having to go to the cafeteria. That it's "too noisy" in there, and too many people, and it makes feel like she wanted to leave. (I had to ask a lot of questions to get this information out of her). Once again, she's never had sensory complaints like this, has always been fine with crowds and noise, etc. and has never once mentioned disliking the caf before. So, I received an email from her teacher today saying that she didn't eat her lunch and was crying. We went in late to school ("you're laaaaaate) and they had early dismissal for snow, so she was only there for 3 hours. I am so thankful that school has been cancelled for tomorrow..... I am dreading the full week starting on Monday and am not sure what to do about it. Will update tomorrow. Thanks again everyone.... Please keep the suggestions coming. I need all the help I can get.

no tests yet, I just came across the PANS/PANDAS concept 2 days ago myself.... once I started reading about it, it clicked. Her symptoms seem to indicate that this is what she has when nothing else seemed "quite right".

my daughter just turned 8 November 22nd. Who is Dr. L? Would you travel to MD from CT without a diagnosis? (I suppose I am still hoping I am wrong). Are there any tests that I can have the pediatrician run that may be covered by insurance in the meantime? I will try to check my messages... this is all new to me, so please forgive my stupidity! btw, I just got a call from the psychologist's office that I was referred to by the feeding team, and the Dr that I was referred to won't see her because of her age, so I'm supposed to research others in their practice to "see if one seems like a good fit". ... I can't believe how difficult this is, and I am scared that it's only just begun....

We are in CT. I just contacted Dr B's office and they have a wait list, no exceptions (the person who answered the phone was actually quite rude) until March or April and we simply can't wait that long. I tried Dr. M's office and got a message that they also have a wait list. I don't know who Dr O is-- Hopeny, I tried messaging you and it wouldn't let me. Someone please help. I am terrified. She didn't touch any of her lunch at school today. She refuses to even sip, or try any of the protein/vitamin shakes. She will sometimes drink Hershey's chocolate "milkshakes" (which is basically choc milk) but not always. She will take gummy vitamins, but not the chewables.

To anyone who has any recommendations... I appreciate any advice or opinions I can get. About 2 1/2 months ago my daughter suddenly stopped eating. It started with cereal getting "stuck in her throat", then it was grilled chicken which she'd eaten many, many times before prepared the same way. Then it was everything else, chips, Cheetos, pretzels, things she used to eat every single day. She complained and complains of a sore throat. She's had an endoscopy, upper live GI X-ray, lactose testing, routine bloodwork, and an ultrasound with all negative results. (She has complained of stomach aches for over a year, and that is why the testing started). Since the restricted eating began, her behavior has been strange, she gets upset when we try to talk about eating, curls up into a ball on the floor and covers her ears. She is afraid to eat... Terrified. She weighed 50 pounds last May (7 months ago) and her most recent weigh in was 47 pounds. (That was 2 weeks ago). She is now down to only eating chocolate ice cream and bread and will drink milk and juice. That's IT. My sweet girl that used to love school now says she doesn't like it, and doesn't want to go. There are mornings that she refuses to get dressed or drink a milk to get ready to go. Yesterday, I can home form getting my hair cut and she completely flipped out. Packing a bag to move out, saying I was the worst parent ever, and was nasty, and she didn't want to live here any more, on and on and on. This isn't normal behavior. Tonight she didn't want to go to her grandmas because she was afraid of dinner. (We did convince her to go, and she actually ate quite a bit of bread) she has scabs on her body that she picks at and picks at, and also picks at her fingers. She's always exhibited small signs of ocd but has more recently been having exaggerated episodes (haircut incident). I am going to attempt to get an appointment with DR B and another local physician that is familiar with PANS, but I am very concerned because she has become painfully thin, she has visibly lost muscle mass and couldn't afford to lose an ounce to start with. Anyone have had any experience with the restricted eating and sudden anorexia? I am scared to death for my baby. I need help now, and just keep getting run around with psychiatrist's phone numbers, feeding teams, dietitians, and the pediatrician has been no help whatsoever. This can't wait, she is going to end up in the hospital.