BeeRae22 Posted January 2, 2014 Report Share Posted January 2, 2014 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. Link to comment Share on other sites More sharing options...
dcmom Posted January 2, 2014 Report Share Posted January 2, 2014 Can you share what area you live in? Sounds like pandas- both of my daughters have had restrictive eating due to pandas. Fear of choking is even mentioned on Dr K's website. Do not take her to hospital if at all possible. Get in to a pandas doc ASAP. BeeRae22 1 Link to comment Share on other sites More sharing options...
searching_for_help Posted January 2, 2014 Report Share Posted January 2, 2014 I agree with dcmom. DON'T take her to the hospital. Our experience is they put them in psych ward and won't make them eat. So they sit through group therapy all day "talking" about their problems, that unbeknownst to the "professionals", is infection driven. These experiences make PANDAS kids worse - they often have separation anxiety to begin with, and you will usually get NO WHERE talking with the staff about PANDAS. You really need to find a PANDAS doc or someone willing to do some testing, ASAP. So sorry you and your family are going through this. Link to comment Share on other sites More sharing options...
searching_for_help Posted January 2, 2014 Report Share Posted January 2, 2014 Also, I know it's hard, but you will have to make her eat. (Trust me, I totally understand it seems impossible...) Do everything you can to get calories in her. Once their weight spins out of control, you'll have no choice but to admit, and even though a regular hospital room with docs checking for infection and tubing if necessary would be ideal - that is NOT what happens, in our experience. Once they hear that anything mental is going on, they send them to a psych hospital or Eating Disorder clinic - neither which believe in infection driven PANDAS - in our experience. If you don't have access to a PANDAS doc (we don't), then maybe an LLMD or Integrative Doc in your area would help. Link to comment Share on other sites More sharing options...
Hopeny Posted January 2, 2014 Report Share Posted January 2, 2014 (edited) Hmm the stomach issues/pain can be symptoms of Lyme. My dd had the same swallowing issues when she was at her worst. I agree to get to Dr B and a Lyme literate doctor. Dr b has a huge wait list. Due to the urgency of the situation I would propose an alternate doctor in Connecticut who is knowledgable about Lyme and pandas. Dr O, a number on this forum see her and you can get in quicker. If interested pm me and I will give you her details. We dealt with a number if the same symptoms that were brought under control with abx Edited January 2, 2014 by hopeny Link to comment Share on other sites More sharing options...
LNN Posted January 2, 2014 Report Share Posted January 2, 2014 In addition to the advise above, see if you can use Carnation Instant Breakfasts or Ensure or a protein smoothy. Also, it is essential that your daughter get vitamins and minerals into her body. Nutritional deficiencies can cause neuropsychiatric symptoms and you could quickly spiral into more than just infection-triggered issues. If she can't/won't swallow pills, look online (Vitamin Shoppe, Amazon) for a liquid multi-vitamin. This can't be negotiable. Dr James Greenblatt at Tufts also feels that zinc deficiencies can contribute to anorexia http://jamesgreenblattmd.com/ It sounds as tho her eating issues involve OCD. You may find helpful ideas under the "Helpful Threads for Pandas" listed at the top of the Pandas forum http://latitudes.org/forums/index.php?showtopic=3928 Not sure where you're located, but in addition to Dr B and Dr O in CT, there's also Dr M just south of Hartford. He's a lyme specialist who treats a number of Pandas kids and is on the CT Pandas Advisory Board along with these two other doctors. Like Dr B, he has a waiting list, but gives priority to children and in some cases, parents have been able to get in w/in weeks if you put your name on a waiting list and can take a last-min opening. PM me if you want his contact info (to PM someone, look in the upper right corner of your screen just under your login name - click on the drop down menu for options. Or click on my user name within this post and then select "send me a message") Link to comment Share on other sites More sharing options...
BeeRae22 Posted January 2, 2014 Author Report Share Posted January 2, 2014 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. Link to comment Share on other sites More sharing options...
LNN Posted January 2, 2014 Report Share Posted January 2, 2014 Sent you a PM. Link to comment Share on other sites More sharing options...
riffleshell Posted January 2, 2014 Report Share Posted January 2, 2014 Hi. Just chiming into say that anorexia was one of the symptoms that led me to thinking what was up with my son was PANDAS. Normally my boy has a hollow leg and all of a sudden he was Mr. Picky, turning his nose up at his favorite dishes. (There were other indications as well.) I would put the word out to parenting networks in your area--listserves, school networks, etc--to see if you can find a PANDAS knowledgeable pediatrician. That what I did while I was waiting to get in to a specialist. I found a pediatrician who had treated PANDAS kids before and ran bloodwork. Link to comment Share on other sites More sharing options...
PowPow Posted January 2, 2014 Report Share Posted January 2, 2014 Call dr L in MD. she may be able to see you sooner. How old is your child? Link to comment Share on other sites More sharing options...
LNN Posted January 2, 2014 Report Share Posted January 2, 2014 I don't see you mention any strep tests. Has she been swabbed for strep or had antibody titers run? Link to comment Share on other sites More sharing options...
BeeRae22 Posted January 2, 2014 Author Report Share Posted January 2, 2014 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.... Link to comment Share on other sites More sharing options...
BeeRae22 Posted January 2, 2014 Author Report Share Posted January 2, 2014 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". Link to comment Share on other sites More sharing options...
LNN Posted January 2, 2014 Report Share Posted January 2, 2014 This goes through the whole list of tests and general treatment options http://latitudes.org/store/should-you-consider-pandas-ebook/ Link to comment Share on other sites More sharing options...
mama2alex Posted January 2, 2014 Report Share Posted January 2, 2014 I'm so sorry you're going through this, but you've found a great place for information, guidance and support. Given that you live in CT, I would highly recommend you have her tested for Lyme ASAP. Contrary to what you'll read in the media, Lyme can and does cause these sorts of psychiatric problems. Many on this forum have discovered their PANS kids have Lyme. If she hasn't had antibiotics in the last 3 months, you can do a blood test from Advanced Labs which cultures the bacteria that causes Lyme. This is a much more definitive test than antibody testing. It's expensive at $595, but well worth it to get a definitive answer right away. You'll need a Lyme or integrative doctor to order the test most likely, but if you do the research, and get the info to your ped, maybe he/she will order it for you (it's worth a try). And I would get in to see a Lyme doctor who also treats PANDAS/PANS as soos as you can - they can treat whatever infections are triggering this. Get on any waiting list you can - you can always cancel later. Hang in there. Hundreds (probably thousands now) of parents have recovered their PANDAS/PANS children, and you will too. Link to comment Share on other sites More sharing options...
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