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Something to consider, our son was younger, but his rages were the outward manifestation of his OCD. He would just rage if a compulsion or ritual couldnt be accomodated etc... it wasn't until we understood OCD better that we started identifying the triggers of the rages as his OCD tendencies.

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Thank you all so much for your support! You are what is keeping me going and keeping me from giving in to doubting doctors.

 

We went to my DD's new pediatrician today. She was very arrogant and defensive. She kept contradicting herself- saying she didn't think it was PANDAS, then saying she never said it wasn't, then saying she thought it was sudden onset OCD with a coincidental strep infection and a coincidental irritated throat causing her to stop eating, but then ordering 8 weeks of cephalexin because that's what she treats PANDAS kids with. First she said she didn't think it was OCD, then she told me tics were a form of OCD, then she said her anxiety was unrelated to OCD.

 

She reprimanded me because the pediatrician we consulted as an expert suggested allergy testing and she said it is unrelated to PANDAS. She said PANDAS is nothing more that a study done 9 years ago linking high ASO titers in kids with OCD. She also hinted at not thinking my DD's ASO was high enough at 400. She said prophylactic antibiotics will cause antibiotic resistant strains of strep.

 

Everything I asked, requested, or stated, she shot down. I asked for a Lyme western blot (not even from Igenex, which is what I would prefer) and she said there was "no way" she could be positive because her ELISA was "negative". My husband's ELISA was negative and he was also Quest Lab CDC negative on his WB, but he is Igenex lab positive, including ++ on Band 31, so he definitely has Lyme. I asked for an AntiDNaseB titer and she said she didn't know what that was, and mumbled something about how I must know more than she does.

 

It just went on and on like that. She hinted that she hoped I would find another pediatric practice. Argh! I'm so frustrated!

 

chase23, thank you so much for making me realize how important the right antibiotic and the right dose are. Your daughter sounds very similar to mine. My daughter is eating better and some anxiety has lessened but I am seeing tics and rages/emotional meltdowns persisting. The doctor today implied that my daughter would have gotten immediately and completely better after 5 days of zithro if it was really PANDAS, so it was a great reminder that the antibiotic and dose are important.

 

EAMom, I printed out that handout, which I think is great, and didn't even get to show it to the pediatrician because she was so hostile towards me. She had the attitude that she is the doctor and she knows everything, and I'm the idiot parent who was being very rude if I even asked a question. The Geller study sounds familiar but I think it is on hold or something. I did get her on a list for a study, which I believe is the same one.

 

tpotter, I think my DD is excluded from the NIMH study because of her amoxicilin/penicilin allergy. I will call anyway, just to make sure.

 

Thank you all again and for allowing me to vent.

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So sorry everything is so frustrating right now, hugs to you! Keep searching for that right pediatrician. I can tell you it is worth it. I am lucky that my son's ped was fabulous from day one and knew if was PANDAS before I mentioned it. But even if you can find one to get on board that doesn't know a lot, but is willing to learn, it is great not to have to fight for tests, swabs, cultures and ABX. . Those docs DO exist, however few and far between!

 

If you haven't done the allergy testing I encourage you to do it. My pandas doc Dr. M. felt that my DS had a huge allergic component to his PANDAS and she was 100% correct. He came back allergic to practically everything! By avoiding as many allergens as we can now and taking OTC zyrtec and Flonase, and protecting for dust mites, his skin rashes are gone, he can breathe through his nose finally and we have had a huge decrease in PANDAS symptoms, even when other illness occurs which use to send him into a complete tailspin. I will eventually try transitioning him to supplements for the allergies so we can hopefully get off the meds, but for now it is nice to have some relief that comes relatively easily.

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Oh my goodness! I am so sorry that ped was so rude (and unimformed).

 

But, I am amazed she rx'd cephalexin. What dose did she rx and how much does your dd weigh?

 

I know some of the kids in the NIMH study were on Azith...so definitely call even if there is a pennicillin allergy.

 

HUGS!

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Oh my goodness! I am so sorry that ped was so rude (and unimformed).

 

But, I am amazed she rx'd cephalexin. What dose did she rx and how much does your dd weigh?

 

I know some of the kids in the NIMH study were on Azith...so definitely call even if there is a pennicillin allergy.

 

HUGS!

 

Thanks! It is a 250mg per 5ml with instructions to give 1 ts 3x per day for 8 weeks. So, I guess that is 750mg per day. I'm nervous to give it to her because of her cilin allergies but I have some Benadryl ready. My daughter currently weighs 50lbs (she's been going up and down because of AN symptoms).

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Not sure if dr. gellers study is running yet. Try and get an appt with him at MGH, also try to see dr. Pasternack at MGH., I would also make an appt with immunology. what town are you in/ there is also Dr. Lacava in west Boylston who is seeing pandas patients.

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Just saw this on Dr. Dan Geller's twitter feed. Would be nice to get answers from Dr. Jenike. The Forum is really ,really new. Perhaps they can add a PANDAS topic? Let's all make the change we need to see in the PANDAS world. Send him your comments and questions. We need a PANDAS Center at MASS General. Wouldn't it be great if we could have a place to diagnosed,treatment (including lVlG) and CBT/ERP for our kids.

 

#OCD community, check out our new forum- you get to talk firsthand with our docs at #MGH: http://www.mghocd.org/resources/forum

 

 

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Thanks minimaxwell! The forum looks great and it definitely needs a PANDAS topic. And, yes, on a PANDAS center at MGH! There's really no excuse for Boston not to have one.

 

Dr Geller was the first doctor I tried to get an appointment with way back in mid April. His MGH practice is closed to new patients, even for PANDAS, and he can't take my insurance at his private practice. He's been out on medical leave and I've spoken to and emailed back and forth with his back up who happens to be in the same town I'm in. She sent me a provider list from Dr Geller and I contacted every single name on the list without much luck. I'm going to try one of the doctors, an ENT at Mass Eye and Ear, next week, but I think in the end I will just pay out of pocket to get an evaluation by Peggy Chapman in Hingham.

 

I never tried Dr Pasternack at MGH. PM me any experiences you've had, if you get a chance.

 

We went to Dr LaCava and he ordered 4, 3hr sessions of allergy testing. He didn't order any labwork for PANDAS evaluation and recommended pulsing antibiotics, if we wanted. He also suggested she have her tonsils removed. I'm holding off for a little bit on the allergy testing until we get the PANDAS under better control, but I do think it will end up to be a factor.

 

MomtoJake: Thank you for your hugs and your perspective. I think allergies will be a factor for her, and maybe even all 6 of my kids. I had previously spoken to her former pediatrician about allergy testing because she had a hearing test a couple years ago (as a precursor to evaluation for sensory integration disorder and CAPD) and she had some hearing loss due to congestion. The audiologist felt it could be a chronic congestion issue but her pediatrician didn't think it was significant.

 

At what point did your son get tested for allergies? We are only 6 weeks since onset. She had a strep infection at onset, and then last week I became symptomatic and tested positive. A few days later my 13 year old tested positive (asymptomatic). She's so emotional right now that you can't look at her sideways (or actually it's usually if I glance away for a split second while she's talking to me) without a complete meltdown.

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Dr. Geller had told me about Dr. Pasternack. We have an appt next friday. The receiptionist says they treat PANDAS.. The ENT at Mass Eye and ear who is very PANDAS friendly is Dr donald Keamy. He took out my friends son's asap as soon as he heard PANDAS. (btw, this child never showed signs of strep yet tonsils were very scarred from strep)

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Oh my goodness! I am so sorry that ped was so rude (and unimformed).

 

But, I am amazed she rx'd cephalexin. What dose did she rx and how much does your dd weigh?

 

I know some of the kids in the NIMH study were on Azith...so definitely call even if there is a pennicillin allergy.

 

HUGS!

 

Thanks! It is a 250mg per 5ml with instructions to give 1 ts 3x per day for 8 weeks. So, I guess that is 750mg per day. I'm nervous to give it to her because of her cilin allergies but I have some Benadryl ready. My daughter currently weighs 50lbs (she's been going up and down because of AN symptoms).

 

okay, so if she's 50 pounds that about 22kg.

 

750 mg/day --> 750mg/22kg is about 34mg/kg

 

So she's not getting a super high dose. Here it says kids can get 25-100mg/kg/day (quite a range). http://www.medicinenet.com/cephalexin/article.htm

 

I just though I'd check b/c many PANDAS kids doen't respond as well to lower doses, and only turn around with higher doses of antibiotics. Also, there is variability in what antibiotics work for PANDAS kids, Azith. and Augmentin are the most popular. However, cephalexin is probably better than amoxicillin!

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minimaxwell: Oh wow, I'm going to call Dr Pasternack. He takes our insurance too. Thank you! We have an appointment on Monday with Dr Keamy. I'm also bringing my 7 year old DS due to repeated ear infections, 3-4 with perforated drums and at least 1 after a strep infection. I plan on making an appt. for my 13 y.o. DS too because he has a very large scarred tonsil. Does Dr Keamy also diagnose and treat, or mainly just remove tonsils?

 

EAMom: Okay, so she may actually end up needing a higher dose. I know she can tolerate azith, so in a way I wish they had tried a longer and stronger dose of that before switching.

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my daughter has pandas and does not have any ocd. she tics like crazy and has all the rages/emotional meltdows when she is in a flare. when we have the right dose of antibiotics they go away in the blink of an eye. but you have to find the right dose. recently my daughter had all symtoms while on daily augmentin, it wasn't until we really upped the dosage that she cleared. just because your child does not have ocd or just because symtoms have not remitted while on antibiotics does not clear them from a pandas diagnosis. i have yet to meet a pediatrician who isn't highly skeptical of pandas. i know some exist but all the ones i know think its extremely rare and should disappear if on 100 mg of amoxicillian.

 

 

Chase23, my dd is on daily augmentin (the first abx we've tried) and shows only minimal, if any, improvement. So your experience is of interest to me. How much does your dd weigh and what was the initial dose and what is the increased dose that has helped her? Thanks!

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