T_Mom

Just a word about Amoxicillan. My daughter had a very severe Pandas exacerbation and good ol' Amoxicillan worked wonders for her--during 3 different exacerbations of illness that triggered severe OCD and tics we saw an obvious diminishing of OCD/tics within 48 hours once full strength Amoxicillan was started. Given my choice, at the time, I would have started with something stronger, but in retrospect I am glad I can say that Amoxicillan may work if you want to try it as a first defense, realizing you may need to move to something stronger. Other families have had good results as well with Amoxicillan long term. Our d has been on full strength Amoxicillan for 14 months, and will continue God willing nothing else is required!

Hi Lfran-- The effectiveness of antibiotic use seems to be different in in different children, and you may need to change the type and/or dose amount over time. (For example, we have used 3 different antibiotics over time, to see which was most effective.) For us the key has been using a full-strength (at least) dose for an extended period of time. In our experience a month of full strength antibiotics was a first step to SEE if a child reacts to it, if OCD goes away, if ticcing is diminished. I would see the Pandas info. websites online (such as www.pandasnetwork.org and others) for reference to research articles. Provide your pediatrician with some of the "Helpful threads" posts located at the top of the Pandas forum, authored by Buster--these are excellent and provide an informed resource. This information is certainly representative of our collective knowledge/experience w/ Pandas. If your doctor has questions request that she gives one of the doctors currently seeing (and having success) with Pandas children a call--to discuss what has worked. We certainly found antibiotics to be worth a try--and a relatively benign treatment. (We give probiotics as well to balance the intestinal issues--) edit: oops--I see now that this same info, is already posted on another thread. Good info. all--

Wonderful to hear your dd came out on the "other side" of the anorexia episode--Pandas-induced anorexia is nothing to play around with, we know, our d had a similar bout of 3+ months intensive sudden-onset anorexia which involved obsessive exercising and significant weight loss--we were seen at a Children's ED Clinic by a team of doctors, we suspected Pandas at the time as it cleared just as suddenly as it came (she was 9.) I want to caution though, our d was fine for about 6 months and then Pandas was triggered by an illness in the late summer and she had what was called, an "OCD storm". It spiraled beyond our control, affecting her entire life for a horrible month, before we determined it was Pandas and tried a steroid burst (and serendipitously antibiotics at the same time.) (She had never had "OCD" before.) You are way ahead of the game in that you are aware of Pandas and won't sit idly by if she is showing OCD signs. You know there are treatments and that is more then most parents get to understand--certainly. Our d's OCD-Pandas episode started with germ-contamination fears, holding saliva in her mouth, staring, step-stepping, circling things when she walked, and multiple touching incidents. Within 3 weeks she stopped speaking (the OCD told her to), compulsively held painful positions, her eyes closed, etc. etc. very severe. The good news: with treatment she is herself again, entirely. It wasn't until about 9+ months of full strength antibiotics, and two steroid bursts along the way that she was back to 100%. We also took steps to boost her immune strength (still do) including 1000mg of omega 3, vit C 1000mg, vit. D 1000mg, probiotics, and healthy eating/sleeping. Just watch carefully, I know you will--I hope it is gone for your daughter for good.

Fiveam--with the eating issues she "got better" suddenly, the anorexia appeared to come suddenly and almost leave just as suddenly 3 months later--entirely weird. Then 6 months later the OCD storm hit--and THAT was alleviated by long term full strength antibiotics. In our case, the use of antibiotics and steroids were a relatively BENIGN treatment considering the alternatives! (meds.) thankful it worked. Does your child have sensory integration issues and is he on the autism spectrum? Stanley Greenspan has done some incredible work with kids with sensory integration issues and has a clinic in the Washington DC area--pm me if you want to know a bit more. Take care--

Fiveam--Our d had huge dilated pupils when in an exacerbation -- for essentially about a year! We asked doctor after doctor about it and got the "may be activation" , "fight or flight" reaction, explanations over and over again. Many Pandas children appear to have this symptom.

Good questions all--Here is the deal from where I sit-- My d had sudden onset OCD hit her and debilitate her life. The effect was devastating. It was termed an "OCD storm". (Think: Blizzard/Whiteout). No laughing matter-- affected her LIFE, her relationships, her schoolwork (A's to F's), etc. She was not the same child -- and for no obvious reason. What to do? TRY something-- Try to fix it, to erradicate it from her life, to heal her up -- Searching for help--16+ doctors in one year, MRI, bloodwork, etc. etc. Is it worthwhile to TRY to treat Pandas you ask? -- YOU BET! It is treatable, it may be complicated along the way, some kids may need ongoing treatment, re-treatment, expertise, but YES, Pandas can be treated--and it is worth it. I entirely agree with EAMom -- Many of us have had to try different antibiotics-- before we found one that helped to get rid of the OCD/tics associated with Pandas. I am so sorry you have encountered this difficult eating pattern with your son. I am sure you have seen numerous eating specialists with a focus on younger children, in the area? Very scary, I know. Children's Hospital in DC has a team that saw our d who was 9 at the time, we saw the team there for sudden onset anorexia+obsessive exercising...I do not know if they deal with younger children as well--I hope you can get help for this soon--I hope Dr L can help. All the best to you--

I sure wish THAT Swedo quote was on the NIMH website! It is in direct contradiction to what so many doctors told us...time again, that our d "couldn't have Pandas" since she did not show active strep at the time of that particular exacerbation (which ever exacerbation she was in at the time!) ... We had to try to explain and explain the above as it contradicts the NIMH website--

Bronxmom-- I am so sorry--Do you think it could possibly be turning-back-of-the-pages phenomena? Did you have any of the replaying of previous symptoms (as referenced by Dr K. for after IVIG reactions) with the prior IVIG treatments? I so hope this is the start-of-the-end for you all--

DCMom--You are such a dear Mom and you have been through so much these past two years-- I understand your desire to move closer to family, especially if you have parents who have "been there" for you during this illness--what an amazing blessing! I have nothing to add as far as "insights" as I find myself asking the same questions that you ask...when should the parent push-back against the OCD that our child experiences? As with Chemar's fine post, I too regret (who doesn't?!) some of my responses. I know when our d had the Pandas related bout with anorexia the eating disorders counselor told ME that I would need to go "toe-to-toe" with the illness, on my daughter's behalf, if it came back. I will never forget that-- When she was riddled with uncontrollable OCD and mild tics 6 months later (and no anorexia) I felt the same helplessness but also a peace (which I attributed to God) that was beyond my understanding. I also knew that we were going to find the answer to what was going on--though it certainly was not clear at the time what the heck it was! I knew it because I was not going to give up. We feel our way along at times, as if in a dark cave, that's how it feels to me at times-- With Pandas I do believe that much of the behavioral response is beyond the child's control--yet we gently, carefully, need to help them, guide them as best we can -- with love and understanding. I will leave this post now, and go to help that same d with her homework-- Keep on DCMom--as we all do, one day at a time--

Dear Pam, I am sorry you have had to be asking this question--At the top of this Pandas page forum there is a "helpful threads" administrative post. Open that and in there is a list that parents have compiled of doctors they have seen --who have helped. Someone also alphabetized a summary list of the same, but I am not sure where that is on the forum. All the best, I hope that helps.

Tired Mom--My heart goes out to you tonight, prayers for you and Kate. When you have seen Dr T has the issue of trying IVIG now ever come up? What of Dr. K.? Dr. K is of course doing IVIG, and for some older teens as well it seems it has helped-- I will pray.

Good Find! Thank you!!

Still here--and still telling others that antibiotics and past steroid bursts directly set us on the right path and continue to do so-- D. is back to herself, Dr L. is our hero.

Emuls, I am SO sorry you are going through this crisis. I am bouncing this up to see if anyone might have feedback on this critical issue for you-- Also on the use of the specific psych drugs you mentioned-- Best--TMom

Worriedm, these uncertainties in diagnosis are common. Until, time+again we see results, like you apparently have, that OCD and ticcing are diminished by antibiotics/steroids/IVIG and/or PEX ...THEN we believe. What can you say?--Your child got "better" with Pandas treatments--THAT is significant! IMO I find myself stumbling over the details when I try to explain what we have gone through--I think most of us do. I had dinner a few months ago with 3 other Pandas Moms in the area--We noted that if we had not gone through this experience ourselves we would have a difficult time believing someone who had! Nevertheless, I have a d who was entirely crippled and housebound by OCD (+mild tics) who is now symptom free thanks to full strength antibiotics and 2 steroid bursts -- THAT I know! ps--no elevated titers either.

Worriedm--I can relate! One of the original Pandas researchers, had told us that Amoxicillan had anti-inflammatory effects and that the results would be a decrease in inflammation and thus in Pandas symptoms with this antibiotic. I believe that an important aspect of Pandas is obviously the resulting/triggering inflammation issue, and based on what we have seen, that is why antibiotics are still given in our household too-- (ps--after a while you get used to feeling "stumped" when trying to explain to others

When our daughter was at her worst she could no longer express herself in written language--Her handwriting showed significant deterioration and her ability to write was literally 2 to 3 grade levels lower then what it had been. Reading Dr K's website, and his reference to writing problems that Pandas children encounter was an important clue for us, as we tried to figure out what was wrong... A year ago last February, the school (who did not know what to do with us) told me that her teacher had decided to no longer grade her any of her writing--as it would be failing, if it was given a grade! That quarter marking period she received an NA for a grade for english! Blessing in diguise-- Happy to say, after a year of full antibiotics and 2 steroid bursts she is again writing like she should be -- Principal of the school, in fact, told me last week that our d was an "excellent writer"! To tell the truth, when she could not write, I worried that her abilities were gone forever--

I agree with those above on this interesting phenomena--I have never heard of this and it is very interesting. Thanks so much for posting--

Have you considered trying a steroid burst? Dr K 's protocol was the one we used the first go around (with additional days to taper) but it did have a significant effect for the good with our d. Continuing antibiotics during the steroids and for a lengthy period of time has brought her back full circle--it takes time. Best to you this evening--

Bubba'smom-- I am sorry, I cannot remember--does your son have Pandas? More than one psych. suggested Risperidal to us--but I was concerned that IF my d had Ps that it could backfire and cause serious activation issues (ativan had done so--) Does your son do well when on abx ?

Hi--This seems to be the question Pandas parents often ask...how long do we wait before we try something else? When we were seeing good-trending with full strength long term antibiotics we continued for about 10 weeks watching ups and downs but in the "right direction" of getting better overall--then our d hit a plateau for about 3 weeks. We decided to then try a steroid burst which had very good effects at that point--along with the continuing full antibiotics, the trend then continued in the right direction. When you say "seems to be slipping a bit" I think most P.s parents can well identify--as we each watch and wait--that has been one of the most difficult parts of this experience--waiting, watching, hoping... Personally, I think it depends on the severity, the duration, and how well you think he is trending over all-- I am sorry I don't know what to say re: the timing of the strep testing--

Nita, what does Dr K advise at this point? Does he suggest to keep him on full strength antibiotics? Would you consider a full month of antibiotics worth a try at least at this point?--to give it 3 to 4 weeks and see if he shows gradual progress over the next month? -- this horrid illness takes time...for the brain and body to heal. Best to you tonight--hold steady--

Nita, is 250 mg of azithro considered FULL strength for his weight? Did you see an improvement at all after IVIG or when he is on FULL strength antibiotics? If you did -- then would full strength (as much as he would get if he had strep) make sense for an extended period of time? This has been a life-line for many of us on here and has put an end to many Panda's symptoms-- All the very best to you--Dr. K does phone consults -- if necessary. I can relate to what you are going through. The ocd is hard enough, but then throw in the rage and everything is so much worse. I have not had good experiences with psyc. doctors and at 13 my daughters ocd was at its worst. It has gotten to the point where it is tolerable but never completely gone. Continue to hope and don't give up.

...entirely understand the abx hoarding...let me know if you need some

Susan-- "500 mg of zithromax 2x a week? Is that full strength given her weight? In our d's case it was not until we tried 30 days straight... (and then continued for over a year--still going!!!) of FULL strength antibiotics (full strength meaning it would be what she would take if she had STREP! I think you may be seeing the benefit but maybe not the entire benefit possible? -- due to the dose?