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Daughter has emergent condition- I suspect PANS and NEED HELP


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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

I sent you a private message, beerae22.   Top right of your screen look for the red notifications

if you are in CT, why not contact Yale Child Study Center and dr Lekhman? he was one of the two principlas in the NIH PANDas study. I would call them right away.

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.

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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.

Dcmom, who is Dr K?

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I don't know how desperate you are or if you are willing to travel, but when we were having real eating issues with my oldest son, Dr. Storch referred us to Rogers in WI. The number is 800-767-4411. They will do phone screening. They understand PANDAS and offer medical treatment as well as the psychological treatment. It is an inpatient treatment center and Dr. Storch recommends it highly for OCD related anorexia and eating disorders. Never hurts to call.

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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.

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What did rapid strep test show? Start ABX immediately, you have nothing to lose, and much to gain. Dr. Kovorsevic, out of Hinsdale IL, will do a phone consult and treat over the phone immediately. He has treated my ds and has been wonderful. He goes back to the trenches of when Pandas was first hypothesized and he knows a lot. Go to Webpediatricsmd.com If you email him, he should respond immediately. When did she start the therapist? All of this is new in the past 21/2 months? with sudden onset You will have to demonstrate an active infection to correlate to a Pandas diagnosis, or an infection that occurred in the last 12 weeks if I remember correctly. Either or, I wish you the best of luck.....

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We have been through the eating disorder issues with two daughters-- I would urge you to confront this with counseling via an eating disorders clinic in your area that uses the Maudsley method (research based and effective!) Given your daughter's age, anorexia is VERY rare and could well be an indicator that she has PANS or PANDAS.

 

I would also urge you to read the website info on www.pandasnetwork.org as they have names and contact info for doctors who TREAT and that is the only way you will get help needed for PANS.

 

In my opinion, you have enough indicators to ask for a month of antibiotics, and try and see if they have any effect -- that was our first clue, along with a steroid burst via Dr. K protocol, which our local neurologist was willing to try.

 

Please don't wait to treat her with everything you can--

 

I remember Dr Leckman saying to me (years ago now) that we really don't know the effects of long term brain inflammation, and to treat asap. Don't be afraid, just do it.

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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....

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