T_Mom

Hang in there and keep reading--It sounds like you are on the right course of action -- Have you seen the website: www.pandasnetwork.org It is a wealth of information on what parents have found to be helpful in treating PANDAS. You have only done what you thought was the right thing to so, that is all we can do--hold steady now and continue to pursue wholeness for your child. IF it is PANDAS it will respond to the treatments I believe-- MANY of us have our children back from the "horrors" of PANDAS thanks to the sharing of "what works". All the best, you have been through alot, I am sure it is scary--hold steady.

CONGRATS TO ALL-- A job well done--proving yet again, that parents rally to the cause! Bless you Kelly and Vickie for your perseverance and ingenuity! T.

What an insightful write up DCMom! --and how wonderful it is to hear things are going well--may it continue! You have been the guiding force and impetus for healing for your girls and you have captured the experience beautifully in this update, thank you. I wish every parent with a child hit by sudden-onset OCD could read this account... it would give them hope. You have done an amazing job -- I hope you get some rest this summer too-- TMom

Hi -- Yes, the steroid bursts were ESSENTIAL to seeing continuing progress with our daughter. The first time we used a protocol similar to Dr K's but a little bit extended with a few more days to taper...YES it seemed to jump start her healing (and she had been severely affected by OCD for a month prior to that--holding saliva in her mouth, eyes shut, step-stepping, etc...) I have posted our story so many times it seems, so I don't want to be redundant, but in a nutshell: Our daughter did not really start (and continue) to recover until she was on FULL strength antibiotics for an extended period of time... Once we went to long term full strength antibiotics she started getting better and better and we could see weekly progress as symptoms slowly dropped away...slowly! After about 3 months of progress (while on full abx) she plateaued -- and we tried a second steroid burst, this time a similar strength but with a much longer taper--so about 3 and a half weeks total. Within days of starting the steroids she was so remarkably improved (all the while we continued and still continue the antibiotics to this day!) her teacher called us and exclaimed she was seeing an entirely different child then she had seen all year long-- It was a remarkable recovery. Truly, in our case, LONG term antibiotics full strength has helped bring her back to fully herself--110%. Two steroid bursts along the way truly helped her. You won't know until you try. Re: weight gain--I have never heard of that with steroid bursts. Yes, our d had a full looking face when on the steroids but it went away within a week or two. No big deal. I truly hope you get the answers you are hoping for--

Vickie and Kelly--You guys have been amazing in getting this effort up and over the top !!! THANK YOU ! It goes to show what Parent-Power there is when parents have ill kids-- Way to go voters one and all!!! TMom

Monarchcat--Wonderful news! Can you remind us what the numbers were for the Cunningham results--and did Dr B say how long for the antbiotics? So glad you got in to see him!!!

We have similar questions right now--Our D has been on Full Strength Amoxicillan for 18 months--and entirely symptom free (NO crippling OCD or mild tics) for the last 9 months of those 18 months. At this time we are thinking of weaning off a bit and see how she does-- Since she was one of the children on this forum whose symptoms essentially resulted in an ENTIRELY different child, one who could not function due to sudden-onset entirely crippling OCD and mild tics...well, we are more then cautious... BEST advice we ever got was to keep her on antibiotics for at least an initial 30 days--and we continued--the addition of 2 steroid bursts along the way brought her back.

There are at least 2 of us in the DC area, more--plus a few more just outside. Keep us posted! YES, let's meet.

The verdict on this is definitely still out, and there are conflicting perspectives...(from my extremely limited understandings!) Antibiotics may be immune system-modulating, and\or anti-inflammatory, and\or staving off possible strep (though I no longer believe that the staving off strep is the REAL key here...only hopeful!) We am more and more convinced that the REAL effects of antibiotics will ultimately effect OCD in the future in similar ways--granted, may be way off here, but the logic of the anti-inflammatory effects, and (perhaps) just as, if not MORE important effects of immune system modulation, is the key--so it is actually TREATMENT when we give Ps kids abx, not just a preventative\hopeful measure, it is a treatment effect of the antibiotics. --just my opinion, of course I'm with you TMom. The research that's emerging regarding anti-inflammatory and glutamate modulation via abx suggests that there's more here than just fightin infection or calming immune system. The research is emerging, no doubt!!! The glutamate modulation issue could be HUGE for our kids and ALL kids with OCD... It seems there is a definite connection -- Hopefully, prayerfully we will see it soon. Coopsmom, I would ask a dentist about the teeth issue, just to see what she\he might recommend. Take care, TMom

Hang in there Joan-- First, I am so sorry you are going through this --and after IVIG. We have not done IVIG, but I do remember speaking with Diane Pohlman a couple of years ago, and it was clear that IVIG could trigger a bad time before a good settledness set-in, so to speak. I hope that will be the case-- Is there anything other changes, etc. that could be influencing the behavior at this time? --dietary or environmental changes that have been initiated? Antibiotics, (I assume) are on full-strength right now as well--and omegas for anti inflammatory effects, all the best-- TMom

Immune system support is important--is just good solid sense for brain and body healing...: Omega 3's Vit C Vit D and a multi.... fresh healthy foods, and no preservatives, nitrates, etc. -- basic common sense immune system building, the same for other illness, including cancer, etc. etc.

It does not matter to us where the group originated from, it is just important we have an avenue to meet in\with--and that someone is finally getting the PANDAS movement ORGANISED -- thank you Beth Maloney! Can we meet closer to the beltway area (there are a number of us here...)rather then in Fredricksburg???...

The verdict on this is definitely still out, and there are conflicting perspectives...(from my extremely limited understandings!) Antibiotics may be immune system-modulating, and\or anti-inflammatory, and\or staving off possible strep (though I no longer believe that the staving off strep is the REAL key here...only hopeful!) We am more and more convinced that the REAL effects of antibiotics will ultimately effect OCD in the future in similar ways--granted, may be way off here, but the logic of the anti-inflammatory effects, and (perhaps) just as, if not MORE important effects of immune system modulation, is the key--so it is actually TREATMENT when we give Ps kids abx, not just a preventative\hopeful measure, it is a treatment effect of the antibiotics. --just my opinion, of course

WOW! Great find. Wouldn't it be something if this is the end of OCD for all--fascinating. Thank you--We should send this to every psych we have ever seen with our PANDAS children!!!

Vickie--how do you think that pertains to taking Augmentin XR once a day? I wonder if going to 1000 mg of Augmentin XR once a day is a 24 hour coverage--?

WAY TO GO! The more we all speak out and share the reality of PANDAS with doctors, and those around us the better informed they will be for the next family struck by the illness-- My hat is off to you and your son-- Please thank him from all of us for this sharing!!!

Dear Sally--I am so sorry. The first time it took up to 2 and a half weeks and the second time it was within 2 or 3 days that we saw very good results. Each child is so different though--My d was 10 and then 11. Is he on antibiotics as well right now? All the best--

tygertoo--yes, we also give a multi vitamin as well. I will also mention that for months we were giving 1000mg of omega via fish oil capsules. Last couple of months we switched to Omega 3 in Flaxseed capsules and it seems to be better--(at least it seems to me it seems to be:) I thought the omega 3 in fishoil may be increasing the tics some-- I think Kefir really helped for awhile as well, but then she refused to drink it--though I tried to diguise it in milkshakes. Encourage eating yogurt. We steer clear of unnatural foods as much as possible-- I push the berries, banana, turkey, simple real foods, probiotic good belly fruit juice, natural fresh fruits and vegetables, lean meats, etc. (NO MSG, no high fructose corn syrup or artificial sweetners, etc. etc.) All the best to you--

Similar to MomwithOCDSon, we use: (10 year old, 75 lb. child) 1000 mg vitamin D3 1000 mg omega 3 500 mg vit. C and probiotics (at least 2 PEARLS and/or 1 to 2 cups of Good Belly probiotic drink a day.) Do you plan to continue on the azithro until your child is back to 100% or do you have a timeline to stop?

Mary-- I do hope things are better now--We suffered through a long severe exacerbation (carrying our child, who was no longer speaking, eyes shut, holding painful positions, etc, etc...I know the ER seems like they should be able to help--we never went though, as she was seeing doctors day after day--and they could not help in the days either...) Steroids finally helped + antibiotics, thanks to a doctor with sense. Augmentin XR 1000 mg twice a day made a huge difference --and seemed to have a much better effect than the "regular" Augmentin. The level of Clavulanic Acid (sp?) is different with the Extended Release (XR) Augmentin. see: http://www.medicinenet.com/amoxicillin_and...cid/article.htm Thanks to Beth Maloney's book we learned about Augmentin XR use long term, high dose as a possible option. Dr Nicolaides too (who treated Sammy)--as Nicolaides was willing to treat off-label and has ended up helping many as a ripple effect. I hope and pray that things are much better soon--Hopefully with the scheduled IVIG--all the best to you.

Us too..... We had the same--Cam Kinase High Pandas 181, nothing else elevated. (Except for the OCD symptoms and raging!) --incredibly GONE now after 5 months of Augmentin SS dose.

We tried to look at "weekly" progress over time--when treating and attempting to determine if it was effective. The "daily" results are great when they happen, and they did for us a time or two, but definitely when we looked at week to week comparisons we could chart progress. EAMom's advice of "trying 30 days" of antibiotics put my mind at ease and I had the 30-day mark in mind for fish or cut-bait time...It takes time.

Thanks for posting the additional articles--THIS is really interesting... It can only help (hopefully--) and soon.

MomwithOCDSon-- It has been my understanding that Dr Cunningham got all of her "PANDAS" samples from Swedo's work at NIH-- (correct??) I don't know about the non-PANDAS sera... My assumption is that any results involving our childrens' samples are no where near being published Norcalmom-- What longitudinal 8 year study of PANDAS kids ? This is the first I have heard of this--and is it even still actively being pursued? I had the impression that the PANDAS work at NIH was dropped some time ago--would love to know if something is expected to come out anytime soon--thanks!

The FULL interview link at the top of the link is well worth watching!!! THIS IS AMAZING! I think we should all forward this link to any doctors that you have seen or have access to-- The fact that Dr Cappechi is a Nobel Prize winning scientist is a plus--