musicbuff Posted January 5, 2011 Report Share Posted January 5, 2011 Hello, I just joined this forum and desperately need some advice and references. My dd7 is showing PANDAS symptoms for past 7weeks. It started initially as anxiety (breathing, poison, contamination, I feel sad etc..) and has slowly evolved into OCD (washing, checking etc..) We have had a couple of anxiety attacks and she is having a hard time going to school. While she had separation anxiety during her preschool days, for past 2.5 years she has been a happy, fun loving, well adjusted child and it breaks my heart to see her so worried and preoccupied with fears and sad all the time. At this point it is hard to say if she had any strep infections before, whenever we have checked, it has always been negative. So we do not know if this is her first episode or not, although I cannot rule out some minor cases which might have gone unnoticed. She has always been a healthy kid. Almost too healthy - hardly gets sick even during full blown flu season etc and even if she catches a bug, she has very mild symptoms, which worries me since I think she has a heightened immune system and may be prone to autoimmune issues. I do think she is prone to yeast though. During all these years, she has taken Abx 5 times 1. 1 year old - had fever (do not recall the diagnosis), Azith 2. 2.5 yrs - ear infection, Azith 3. 4.5 yrs - ear infection, Azith (twice) 4. 6.5 yrs - ear infection Amox 5. 7.5 (Nov 2010) - had fever, doctor suspected some secondary infection (Azith) Interestingly, for all these cases, my gut feeling is she probably did not absolutely need Abx. For ear infection cases, she had very mild symptoms (or probably high pain threshold - did not complain much) and we gave it more as a precaution. The last case as well, she had fever and it is hard to say if it was viral, but we were on vacation in Hawaii and could not take a chance of any infections blowing up. Her anxieties (mild at the beginning and it was just " Am I breathing?") started in mid Nov 2010, got 5 day Azith for high fever (the last case) Nov 24-28, anxieties continued to increase and evolve. We also started noticing some vocal tics with certain words and some changes in vocal quality. This started after Abx, not sure if it was Abx or artificial colors in the meds that triggered it. Her Rapid strep tests on Dec 7 2010 and Jan 1 2011, both came negative. At my request, her Ped has ordered throat culture yesterday and we will be getting her ASO/Anti dNase B titers today if not anything to get some baselines. At this point, assuming it is PANDAS, I am unsure if the 5 day Azith in Nov, helped or hurt. What if Abx actually activiated already primed immune system to go overdrive and is causing more issues? That is my biggest worry to give Abx now. Is there a way to safely determine if Abx would help or hurt - any tests? BTW, I see several folks mentioning Cunningham test? What is it? Is it a good indicator for PANDAS? I would very much appreciate some good references for the following (We live in Sanfrancisco Bay area, near San Jose) a) Good PANDAS knowledgeable doctors? Good pediatric neurologist and immunologists c) What other tests other than culture, ASO titers (Cunningham??, mycoP, anything else?) d) Anybody tried neurofeedback for anxiety/OCD? If so, any good recommendations in South Bay e) Any good CBT centers or other anxiety related therapies that you can recommend in Bay area? f) Any other advice?? Sorry for such a long post, I am trying to read and learn as quickly as I can. This forum and pandasnetwork.org is truly a god-send! Would appreciate your helpful advice, keep up the good work and god bless us all.. MB Link to comment Share on other sites More sharing options...
Kiera Posted January 5, 2011 Report Share Posted January 5, 2011 Hi, Alot of people on this forum know alot more than me, my ds was diagnosed Aug 2010. I would not be worried about the antibiotics causing harm, if anything they maybe needed to be changed or ramped up!. My ds responded wonderfully to a 5 day steroid burst then amoxicillin x2/day for a month, switched to keflex x2/day for 4months and now on it 3 times a week. He's 100% in remission now. Have you tried ibuprofin to relieve symptoms? I have not done the cunningham test yet, apparently it's on hold at the moment due to backlog. There is a thread here with a listing of nationwide PANDAS Drs, also the pandasnetwork.org can find one for you (thry did for me)but it sounds like you're starting on the right track anyway. Link to comment Share on other sites More sharing options...
Ozimum Posted January 6, 2011 Report Share Posted January 6, 2011 Hi musicbuff, Welcome! I'm so sorry your dd is going through this. But it's good you are onto it! There are plenty of very knowledgeable people on this forum who will try to help. I suggest you go through the pinned threads at the top of this forum, which includes a list of PANDAS knowledgeable doctors, and links to useful articles and other resources. There are a number of new members who've started threads in the last few days and you will find help there concerning the sorts of tests to order. Antibiotics have been found to be helpful with PANDAS, so don't be afraid to go there. It's possible your dd wasn't on antibiotics long enough to properly clear the strep (or whatever set off those symptoms). Hang in there. Keep us posted. Link to comment Share on other sites More sharing options...
mom love Posted January 6, 2011 Report Share Posted January 6, 2011 Hi Musicbuff, Did that high fever come after the breathing fear? How long after? Was there a throat culture done with the fever in Nov? If it was strep, azith does not always cover strep, or a longer course would have been needed. If the fever and azith came after the breathing fear, I would say the wheels were already in motion. Let us know what the strep titers turn up. The anti dnaseb always takes longer. I would also suggest getting a blood test for mycoplasma pneumonia (aka walking pneumonia). That can be a trigger as well. I am interested in all the azith given for ear infections and just fever. Most docs in my experience give amox or omnicef for ear infections. I have recently discovered my son is sensitive to food colorings/additives and salicylates. You may want to read up on that and give it a go with an elimination diet for a week or so to see if you see a difference. I have no suggestions for CA but there are lots on here from there. Keep posting and reading. Another new person just posted and is seeing one of the best DAN! doctors in the country in so Ca. Link to comment Share on other sites More sharing options...
sf_mom Posted January 6, 2011 Report Share Posted January 6, 2011 I sent you a private message regarding Dr.'s in our local area that have been helpful. Link to comment Share on other sites More sharing options...
EAMom Posted January 6, 2011 Report Share Posted January 6, 2011 Be sure to throat culture all family members (to check for carriers). Also, get a new toothbrush/toothpaste a couple days into abs and don't let kids share toothpaste. For the most part, antibiotics are indispensible for PANDAS kids. I don't think 5 days of Azith is long enough to always notice a difference. Dose is also important. Also, some PANDAS kids don't respond to Azih, Augmentin is another good choice. Here are some bay areas from the "helpful docs" thread: California Dr. Brock Bernsten - Pediatrician, willing to listen and support whatever recommendations immunologist made including open IVIG order if required. Willing to do additional research but not very familiar with PANDAS 3838 California St. San Francisco, CA Phone: (415) 666-1860S Frederick A. Lloyd, M.D. - Has several PANDAs patients, knows Margo Thienemann, listens well, responsive, will provide antibiotics in conjunction with other Dr. recommendation, open to IVIG prescription if recommended by another Dr. Palo Alto Center 795 El Camino Real Palo Alto, California 94301 Phone: (650) 853-2992 Margo Thienemann MD - Specializes in Forensic Psychiatry, Geriatric Psychiatry, Internal Medicine, Adolescent Psychiatry & Pediatric Psychiatry, Psychiatry.... OCD & Has well over 20 PANDAS Patients 900 Welch Road Suite 207 Palo Alto CA 94304 Phone mail: 650 324 3241 Dr. Frederick Lloyd, Pediatrician - helped with diagnosis, prescribed antibiotics, did a prednisone trial, and IVIG at Lucile Packard. Palo Alto Medical Foundation, Palo Alto Link to comment Share on other sites More sharing options...
swim Posted January 6, 2011 Report Share Posted January 6, 2011 Sorry you find yourself having to seek info on PANDAS, but hopefully this forum will help ... Your background is much like ours - ear infections and rarely ever sick. If our kids do get sick, symptoms are very mild and they get better very quickly. I saw you metioned that the throat cultures seemed to generally be neg for strep. Keep in mind that other viruses can be a trigger. Our older son had EBV first, which triggered extreme separation anxiety at the age of 4 when he had been at the same preschool for 4 years and had no previous issues. This is when emotional swings also started. A few months later, he got strep and then we saw tics and forgetting how to read. That was all 8 years ago. Last year, our other son showed sudden PANDAS symptoms, but when our ped tested him he was positive for EBV and not strep. So, don't forget the PITAND side of things if strep tests turn out neg. Testing neg for strep does not mean you are on the wrong path ... For us, antibiotics have been our course of treatment so far. I have not heard of abx making symptoms worse, but know that it can take time for antibiotics to help so you just may need more days or a higher dose. We use keflex with one brief period of time on amox. Seems different abx work better for some kids so you may need to do some trial and error. Good luck ... kudos to you for getting out there and seeking knowledge to help your child! Link to comment Share on other sites More sharing options...
musicbuff Posted January 6, 2011 Author Report Share Posted January 6, 2011 Hi Musicbuff, Did that high fever come after the breathing fear? How long after? Was there a throat culture done with the fever in Nov? If it was strep, azith does not always cover strep, or a longer course would have been needed. If the fever and azith came after the breathing fear, I would say the wheels were already in motion. Let us know what the strep titers turn up. The anti dnaseb always takes longer. I would also suggest getting a blood test for mycoplasma pneumonia (aka walking pneumonia). That can be a trigger as well. I am interested in all the azith given for ear infections and just fever. Most docs in my experience give amox or omnicef for ear infections. I have recently discovered my son is sensitive to food colorings/additives and salicylates. You may want to read up on that and give it a go with an elimination diet for a week or so to see if you see a difference. I have no suggestions for CA but there are lots on here from there. Keep posting and reading. Another new person just posted and is seeing one of the best DAN! doctors in the country in so Ca. The breathing fear was there before the high fever (may be a week before). Unfortunately, strep test was not done. This happened during vacation in Hawaii and the urgent care there while checked the ears, lungs, throat did not suspect strep since my dd did not complain of throat issues. So it appears the wheels were already in motion before the fever/azith - just not sure if the fever was viral/bacterial. Obviously Azith would have helped with the latter - unfortunately I have not much to deduct if Azith helped or not. Azith did cause stomach/acid reflux for my dd and had to use zantac/prilosec. I will checkout on the mycoplasma pneumonia as well - thanks Regarding Azith vs Amox for ear infections - good question. Her first abx was Azith(cannot remember) and later for ear infections, her ped gave azith since it can be a 3 day course rather than a 7 day 2 times a day Amox. Yes, artificial colors/flavors/preservatives are a complete no-no for my dd. With any infraction, we see vocal tics with certain words. One time she was given Amox ( 7 day course last year taking pink suspentions twice a day), her vocal tics got so bad, it took 2-3 months to subside. Many times I wonder if these additives trigger some antibodies which also interfere with part of the brain responsible for speech somehow crossing the BBB. The auto immune triggers could be microbial or food (may be food additives, wheat/dairy sensitivity etc..) Thanks for all the replies, I am reading the pinned threads for more info on some of the tests. Will keep you posted on the titers MB Link to comment Share on other sites More sharing options...
EAMom Posted January 7, 2011 Report Share Posted January 7, 2011 (edited) Also, throat cultures can be neg...but strep can 'hide out' in other locations (vaginal, sinuses, nose, skin...) so just b/c the throat culture is neg, doesn't mean 110% that there is no strep! But, Swim is right, it's not always strep that triggers exacerbations. Other illnesses/viral/bacterial (sometimes even vaccines or allergies) can be triggers (presumeably once strep has initiated PANDAS and set the ball of autoimmue dysfunction in motion.) Edited January 7, 2011 by EAMom Link to comment Share on other sites More sharing options...
Phasmid Posted January 7, 2011 Report Share Posted January 7, 2011 Hi, If you still haven't found a physician, I know that the Dowain Wright, MD, PhD at Children's Hospital Central California is a very caring, knowledgeable PANDAS doc who is using some novel treatments for severe cases. This hospital is in Madera. I know of a boy who is treated weekly there and the mom tells me how wonderful he, and his staff are to them. http://www.childrenscentralcal.org/OurDoctors/Pages/dwright.aspx http://www.childrenscentralcal.org/OurDoctors/Pages/default.aspx Link to comment Share on other sites More sharing options...
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