T_Mom

Why is Dr Gilbert personally going after Pandas?--again, I can only hope that he meant we should be prepared to make better science happen in an effort to substantiate Pandas. If that is what he is calling for, in an effort to ultimately help children for whom Pandas has crippled their childhood, then more power to him--and I hope he is willing to step up to the plate to do so. Tenacity, you brought up some excellent points.

It was my understanding that for Ps it should be more EPA then DHA. I was under the impression that it was Tanya Murphy perhaps that indicated that to someone??? We used Nordic Naturals EPA omegas--and after awhile switched to a Flaxseed capsule that had high omega 3s. I did think that the fishoil seemed to bother my oldest d and the Flaxseed has not had this effect. For our younger d we do give 1 Nordic Natural and 1 Flaxseed omega 3 per day. I am all for the fish oil if a child can tolerate it--

As our girls have been experiencing a slight increase/blip in OCD symptoms in August I have wondered the same thing--Last August was bad for us as well. I wonder if it could be chlorine exposure contributing? Less sleep -- due to summer schedules, or combination. No summer allergies at our house that I can tell.

Nevergiveup--do you know if the session by Dr Gilbert was recorded? What is your sense of what Gilbert was really saying in the presentation? Is it that he does not believe in the autoimmune reaction component to Pandas? -- or is it that he does not believe in it being strep-based alone? -- or was it he just does not believe in kids with OCD/tics getting better on antibiotics??? The FACT that our kids have had relief from neuropsychiatric disorders from the effects of antibiotics, steroids, IVIG, pheresis--well... that phenomena convinces you--I shudder to think of all those kids that go untreated.

Great topic--Thank you. My husband and I were just discussing similar issues, over dinner/dishes etc. We lean (today) towards the anti-inflammatory perspective--but as discussed tonight, DH brings up the fact that we are giving the girls Omega 3's, mega doses of vit.C, vit.D in an effort to build/strengthen the immune system... DH asks: WHY if Ps is an auto-immune reaction, if steroids (which worked dramatically for our kids) are in essence suppressing the immune system...Why would we want to build it up? Any thoughts?... realizing that Omega 3's are anti-inflammatory, but then building the immune system should be right, correct? AH!

PMom Quote: "I am thinking of collecting donations. I already have $200 donated, sent to me, but, set aside for her. I don't know if you guys would trust me enough to send donations to me, and, over a 6 month period or so, I would collect them, put them in a special PANDAS fund in the bank, and then present her with the additional funding in one lump check. I believe lump sums are bettter than donations rolling in haphazardly. There are 1200 plus members of the fan page....if we all donated what we could...no set amount...we could raise a subatantial amount of money. They need it...they need help and more funds. I don't want to see this research fizzle out because of lack of funding. What do you all say??? Oh, I will be posting pictures on the Pepsi Refresh Project PANDAS page.(END QUOTE.)" Hi PMom--just an fyi-- It is my understanding that Dr Cunningham already has a place for donations and they go directly to her--Perhaps we need to clarify with Dr Cunningham? OU Pandas Foundation, P.O. Box 26901, Library - 162, Oklahoma City, OK 7312

YeY!!! Thanks for sharing...

Welcome--and I am sorry you have had to find the forum! -- but what a good group of parents to be supported by... Our older d has been on "full" strength Amoxicillan for 20 months now, she is 12 years old. (105 lbs, and she takes 500 mg of Amoxicillan twice a day.) She had one of the more "severe" histories on the forum...crippling severe OCD, mild ticcing, anorexia for the first episode (to the point that she was treated at an eating disorders clinic for 3 months, etc. etc.) Amoxicillan has worked for her (along with 2 steroid bursts in the last year and a half.) Our d was very severe. Amoxicillan is the main ingredient of Augmentin -- for us Amoxicillan was key in the long run. Not only did the doctor feel that it was a "lessor" antibiotic but if things were to escalate we could ramp-up on the antibiotic and try a different one IF it was necessary (because we were starting with Amoxicillan...) I wanted to try Azithro (to tell you the truth) but the doctor we were seeing at the time would not prescribe it--It worked, it took time. Probiotics are important--we give a Pearl probiotic pill at least once during the day, 3 hours away from the antibiotics. We also push Kefir and Good Belly juice, both have heavy probiotics (Whole Foods carries all of these.) This has worked for our d, though it took time...time to heal. For our younger d amoxicillan did not seem to help--she is now on Augmentin XR 1000mg twice a day. Both girls get 1000mg of C, 1000mg of D, and 1000mg of Omega 3 -- All to build immune system strength. So far so good--Best of luck to you-- It sounds to me like you are starting at a reasonable place, and as long as you are seeing improvement keep at it...We were "OK" with Amoxicillan as long as we were seeing week to week improvement (slow improvement...) when it slowed or plateaued we tried a steroid burst and these REALLY helped bring our child back to us--You make changes when you have to, but again, it sounds like if you are seeing improvements, you are doing well-- TMom

Hi Dave--So glad to see your post here--My husband sat across from you at the Italian restaurant that evening. As you know, we see Dr L. as well -- and she has literally been a life change-agent for our children. I wanted to mention that we have found the following supplements really helpful (we think...) in addition to antibiotics and 2 steroid bursts in the last two years. Omega 3's via Flaxseed Oil capsules or fish oil (we aim for 1000mg a day for Omega 3) Vitamin D and C, 1000mg of each a day. Probiotics -- via one or two "Pearls" sold at whole foods, and a glass or two of kefir (disguised in milkshakes), or Good Belly fruit drink from Whole Foods--Kefir I think really seems to help-- So glad to hear you are going to see Dr L., all the best--

Welcome and I am so sorry you have had to find us here-- but, let me quickly add that you are way ahead of the game as most of us found "Pandas" far later then within the first month or two of symptoms! --for that you are certainly doing well. Dr. "K" ( www.webpediatrics.com ) believes that IF the initial Pandas exacerbation is treated promptly and sufficiently with antibiotics it may just be enough -- and not rear its ugly head again. If I were in your shoes I would immediately get those full strength antibiotics -- just as you made reference to -- and for an extended time period (30 days or more!) helped our child immensely. IF you see a diminishing of symptoms with antibiotic or steroid treatments then you have a response-to-treatment effect and that tells the doctors there is reason to treat. I wish you all the best-- In my d's case I only wish I could have spared her the horror of what she went through by finding the treatment earlier. Our d's symptoms got rapidly, progressively severe (OCD and ticcing.) --I hope you can get this resolved before school starts.

Hi -- I am really sorry you are going through this -- Some of the BEST advice I ever got (besides DP telling me it was INFLAMMATION AND HAD TO BE TREATED!) was EAMom suggesting a full month of full-strength (as if the child had STREP) of antibiotics....You know, it made a HUGE difference and our d got slowly, and obviously BETTER. In our case, an initial full month of strong antibiotics made such an obvious difference, and it was so darn benign, that we have continued--(thank you Beth Maloney...for that example, of LONG term, FULL strength antibiotics.) We have done two steroid bursts along the way and that has held her very well-- Are there "little blips" that show up now and then --- yes, but she is not under the table, not talking, and holding spit in her mouth--thank the Lord. If my child still had symptoms, and I had even a very mild glimmer of suspicion that it might be Pandas, I would not even think twice about trying it in a heartbeat (ALOT of parents on here have tried much more)--We believe antibiotics to be a very benign trial of a potentially very helpful help! Healing takes time--but it is real when you see it happening before your eyes, week to week, slowly...

Great article -- Thank you Meg's Mom! I can't help but note that it was through THIS FORUM that I "got" the advice of: Omega 3's, vitamin D, vit. C, and probiotics....to quell the fire of inflammation, and YES that helped (I think...) Thanks again--

Dr. Latimer went into an explanation of the urinary frequency issue from a neurological stand-point at the OCF conference. It was fascinating--and gave a good rationale for why/how Ps would effect this response. I apologize that I cannot remember it well enough to recall-- but maybe another parent will-- Suffice it to say, once the Ps is treated sufficiently the urinary response diminishes along with the other Ps symptoms, it may take time.

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There needs to be a category or response for those who had "other illness" (e.g., possibly teeth issues, sinusitis showing up on the MRI) in conjunction with the Ps outbreak...NOT ONLY "strep" (via titers, etc.) The construct of Pandas must note those for whom a "positive strep" is never validated--for example: Our d had raging-crazy Pandas/OCD/ mild tics, sudden onset, and subsequent alleviation with steroids and antibiotics, but the MRI showed sinusitis in her sinus cavity...we never could "show" a positive strep. The construct of Pandas/Pitands needs to address those children for whom the parents did not "catch-at-the-right-time" strep.

Norcalmom-- It only looks like a very rough 4:1 or maybe 3:1 ratio involving those who were breastfed....this is interesting, but again, it only reflects those of us answering!--and obsessing over the forum. THAT may be what it really reflects. (...though I do wonder about those teeth/shingles/etc... issues!) I love this group-- T.

This is really interesting-- Does it seem to anyone else that there is a pattern here re: breastfeeding?!? It appears the preponderance of those replying breastfed (many exclusively) for 12 months or more... I breastfed both children for the first year exclusively... First child breastfed until 2 years old, second child for 18 months. I remembered this evening that I had a case of the shingles (on my eye lids) early on after delivery of my first child-- good heavens.

Breastfed both children for the first year essentially exclusively... First child breastfed until 2 years old, second child for 18 months. First child had red face patches whenever I would ingest milk products--(so I quit all milk products for me at the time.) Second child had no such allergies.

Thanks for the great news JAG10 ! makes me smile.

dandd--any news at this point? TMom

Tracie--Do let us know what Dr K says re: abx., I am sure we will all be interested to know. Truly, much is a "try and see" approach -- Certainly that is how we have come so far as a group of parents on this forum. We seem to all wonder what the doctor we are seeing will advise. We then compare, and ultimately "wait and see" what effects a course of treatment has on our children. We are writing the testimonial while we live the reality of PANDAS and the outcome is happening along the way-- I hope someone knows more in 10 years, maybe in two, but right now so much of it is a "wait and see" how a treatment (or the cessation of a treatment) will affect our child--and the outcomes seem to differ. One thing we seem to know for sure though--antibiotics, immunomodulating therapies, and anti-inflammatory steroids hold hope. It is a good place to be if you can find a doctor who is willing to TREAT accordingly--

Our experience was the same-- One of the original Pandas researchers (Dr. Perlmutter) treated our d at first. She put our d on full strength Amoxicillan. I called her within (literally) the first 48 hours to ask if it could be possible that the OCD symptoms could be "going away"... We saw a marked improvement fairly rapidly the first 3 times she was put on short term full-strength Amoxicillan. Dr. P replied that yes it was very possible--and she shared with us that Amoxicillan had been found to be anti-inflammatory during research at NIH (though never published.) I do not know the reliability of this -- but can say that antibiotics, we believe, have definite effect (whether it is solely anti-inflammatory or sone other response mediation that occurs--we do not know yet obviously.) And yes, our d has now been on full Amoxicillan for 19 months-- I want to add, that overall it took about 6 to 9 months, and two steroid bursts before she was back to being herself again....it takes time to fully heal.

Danddd--Don't be discouraged yet. Our d was up and down initially with steroids (via the Dr K method) and then, finally... a couple of weeks after the start of the steroids (and about 10 days after the end!) she cleared in a "sudden and obvious" manner. Just like Dr K had said she would -- if it was PANDAS

Hi Karen-- Our oldest d (12) has been on full-strength (as if she had active strep) Amoxicillan for 19 months now (500mg twice a day.) We are beginning to wean her very, very slowly back to half that dose. Our youngest d (10) has been on Augmentin (strong Saving Sammy dose--of 1000mg of Augmentin XR twice a day) for 9 months. She weighs 75 lbs. We believe the long term use of high strength antibiotics has been KEY to the healing of both girls--OCD was very severe. (Oldest d also had face-stretching ticcing.) Both doing well--thankfully...low-level blips from time to time in the youngest d, but nothing like it was...and the older d is doing 100%, she was very severe and is no longer under the table:) (a couple of steroid bursts for both along the way.)

Just to add to the tooth phenomena--YES, with each of the rapidly lost 4 teeth (last 9 months) our (younger) d has experienced "blips" in behaviors. It may not be noticeable to others, but as family we certainly sees the tie-in to tooth loss. --often a few days prior to the loss.