T_Mom

Manda, I am so, so sorry you are going through this rough time. Praying for you all. It is tough, and unbelievable when you are in the midst of it, and prayerfully it will be in the "past" with the proper treatment. You tried the steroid burst and observed her, I just looked back at your posts and see that you did initially see improvement on the steroids and then she had a really bad time, and she has not been on antibiotics. Please do keep us posted as to what Dr K says. We were in absolute ### when going through the worst of it, my heart goes out to you--All the best to you and your dear family as you sort through next steps.

Our d: Episode 1: OCD (sudden onset compulsive exercising/anorexia for 2 months) Episode 2: OCD (severe regressive OCD, an exacerbation which left her incapacitated, 6 weeks approx.) Very mild tics were present--looked like finger flicking at times. Relieved with antibiotics/steroid burst. Episodes 3, 4: Both moderate episodes triggered by illness when sick (no strep, she was not on antibiotics at the time.) OCD (mild to moderate) and mild tics (face stretching, eye opening) Both times relieved with antibiotics. Episode 5: Severe OCD came on with a bad cold (102 temp), with tics. Relieved by ongoing antibiotics, though healing took 4 months and a steroid burst to get back to 100%. OCD is DEFINITELY primary with tics secondary.

Peglem, what a great nurse practitioner to know! Hope and prayers for quick recovery for your dear one--

That is fantastic!! I am so happy for you--will be hoping it only gets better now from here. All the best, TMom

Welcome SFMom-- I entirely agree with BronxMom--you are incredibly on top of this if it only just started at the end of June. Way to go. I hope you do see a marked improvement with the steroids--and subsequent IVIG. Please keep us updated as to how it goes-- All the best, TMom

I don't know if there is anyone closer to you listed, but at the top of the ACN forum page, under "helpful threads" there is a thread where parents have posted doctors who were helpful to them--there may be someone closer to you than Washington DC in that thread. Also, Diana Pohlman may know of someone, definitely worth calling her. Here is what I'd suggest (which you probably are already doing I know!) 1. Keep a detailed log of responses/behaviors to medications of all types 2. Enlist others to document if necessary or possible (so it isn't just you--) your child's behaviors (we had the school help) 3. On the sly Video or audio tape your child's behavior when OCD or ticcing is occurring and take that with you to the doctor 4. Ask for a trial of one month of antibiotics AS A TRIAL (of course knowing you will need more...) 5. Document the response and take that in to the "helpful" doctor -- ** I got to the point that I literally just tried calling local pediatricians at one point to see if they knew anything about PANDAS issues. Hang in there--

Hi Bronxmom-- I am so sorry you are going through this right now--We had times like that too and I will say the antibiotics/steroids helped bring us back to reality. The behaviors are so incredibly infuriating, and yet when we were going through it they were obviously a result of being "ill"-- as they got better with treatment. Once the inflammation is quelled I think you will see a difference. Are you homeschooling or does he go to public school?

Hi DCMom, I think going to full strength antibiotics is a good idea (of course I do since my d has been on them for some time now!) At least a week or so perhaps? I also am coming to the conclusion that our kids will have ups and downs even on full strength antibiotics, especially when they are exposed to various things...BUT hopefully not the full-board PANDAS/PITAND reaction that is entirely out of control...as they are on antibiotics. That has been our experience thus far. All the best, T

I agree with Kayanne--If it was our d, with school starting especially, personally I'd try for at least another month of antibiotics to keep things steady and then lower the antibiotics slowly to see if things remain steady. I failed to mention in my earlier post on this thread that once we decided to keep my d on full strength antibiotics she has been relatively steady. No colds, and only very mild fluctuations in OCD issues, and infrequent mild tics. I am sending her to school next week a very different child than she was most of last year. (8 months of full strength antibiotics, and continuing) Your child has had a great response to the steroids and antibiotics, thankfully. All the best, T

Our d has been on the following for 8 months-- Full strength Amoxicillan Probiotics--Either the Good Belly drink (Whole Foods) or Dan Active drink, sometimes Kefir with Probiotics. Something type of probiotic at least twice a day. 250 mg vitamin D3 (Nordic Naturals-Whole Foods) 1000 mg vitamin C 1000 mg Omega 3 EPA-Xtra (Nordic Naturals-Whole Foods)

So much of figuring out what helps has been retrospective-- I entirely agree that antibiotics are a necessary safe-guard as far as keeping kids "steady". After a very bad incident our d got better and then with a bout of illness last winter she lost the ground she had gained...and that third episode was very bad. She was not on antibiotics at the time. It literally took 4 months to get her back-- How pathetic is it to be happy when your d expresses emotion about the dog--I can remember being struck by the fact that "normal" kid interactions were returning.

I just have to say tonight: God bless Dr Cunningham as her work is helping, truly helping clarify --We don't understand it all, but she has helped in a concrete way-- TMom

I love that line EAMom...I agree it is good for them to think we are "sane" ... though truthfully, joining the PANDAS club has had a radical effect... I don't care anymore (and I know you agree) what anyone thinks about me-- What I want is one of the nay-sayers to EXPLAIN TO ME why, how, OCD and tics go AWAY when this subset of kids are given antibiotics and/or steroids???!!! In reviewing the last year and a half that we have been through with my h. the phrase "post traumatic stress syndrome" did come up... Blessings All--

I wonder if we shouldn't all just start "showing up" with our kids and their detailed histories.... ...you know, make appt.s take the kids, their histories, and their reactions to treatments...and ask for explanations. This week I listened to the congressional hearings (from earlier in Aug.) on health care (C-Span)--this session was specifically on Autism. The Head of NIMH noted that research was taking off and that it appeared that autism was a "synaptic disorder"... I just wanted to raise my hand and ask WHAT ABOUT PANDAS!!!

Hi Judy, I am really, really sorry for your grandson and for you--It breaks my heart to hear this. The only thing that has helped us is long term antibiotics and a steroid burst. We have not gone to the next step of IVIG or PEX--yet, but we may well need to. There is a thread where people have listed doctors who were helpful that they have actually seen, it is under the "Helpful Threads" at the top of the PANDAS forum, perhaps there is someone on there that is not too far away from you--these are generated by parents. It seems very odd that the doctor would say that if he is exposed to strep his ticcing will take off and that there is nothing that can help him...seems so contradictory. You are right to be concerned and also to not give up. Keep going.

Hi BronxMom-- We spent some time in Norway this summer and things went well also-- Two things I might add: Sunshine (vitamin D) is on overload for most in Norway in the summer. Everyone is outside ALOT and the sun does not set until about midnight -- It is also more intense. Second, fish oils...something about those omegas... Hiya Norge!

hi All-- Our d is on 10mg 2xs a day for 7 days (64 lbs.) and then tapering down for the next 5 days. The aforementioned prescription seems high compared to what we have been on, definitely check in with Dr Latimer for the correct amount! Best to you--

If symptoms are breaking through--(so to speak) I (personally:) would try upping the antibiotics to full strength and see if that helps-- All the best-- T.Mom

Thank you Buster-- I have read your post twice now and believe I am getting a glimmer of the essence of what you are saying:) If you have a few refs. handy on this issue perhaps it would help me, (and hopefully others) to understand more on this -- Thank you so very much-- TMom

..." CaM Kinase II stays activated even with falling 24.3.1. There is apparently some hysterisis for some kids. There is good evidence that 24.3.1 falls at the same rate as the other two antibodies in 75% of kids. Perhaps for kids who show a rise in ASO, the fall is also a good indicator of T-cell regulation/suppression. There is mounting anecdotal evidence that colonized strep (rather than infection) is sufficient to trigger antibody response in PANDAS kids. So it could be that colonization is sufficient to cause a rise of 24.3.1 -- or that some kids just don't have rising ASO/Anti-DNAseB during infection (Kurlan indicates 36% of kids don't have a rise of ASO and Anti-DNAse B ) ....Buster" Buster thank you for the insight-- Do you have any info. on just what is Cam Kinase II? I am struggling with understanding what it is, and what, if anything else it may represent? And when you say that "there is good evidence that 24.3.1 falls at the same rate as the other two antibodies in 75% of kids" -- which antibodies are you referring to? Thank you again for this information- TMom

Hi--I was wondering if he is still on antibiotics? He had a good response to them previously as I remember(?) I am convinced the anti-inflammatory properties of Amox. are keeping my d steady-- That is great he is having a positive response, and before school starts as well!

Dear EyesonGod--Welcome. I agree with Chemar and Faith that is may be worthwhile to check out the symtoms of a PANDAS diagnosis. The following is a website which is well developed and presents the issues: http://www.pandasnetwork.org You might also find it helpful to review Dr. K's website and his PANDAS link: www.webpediatrics.com All the best--hold steady.

Hi Sparky and welcome. From your description it sounds like your d is experiencing a number of things that are sometimes experienced by kids who have been "diagnosed" with PANDAS. For us it took time and observation to come up with a fairly clear picture. The eating disorder you mention (representing obsessions or compulsions around food issues), is the one that strikes me in your description. The symptoms experienced (at least initially) by most of the PANDAS kids have episodes that come on suddenly and often leave just as suddenly, these episodes may include tics, OCD, anorexia and a host of other side issues...They seem to get worse when children are exposed to illnesses or get sick themselves--Have you seen that pattern? The sudden-onset has been key for many people as far as raising the PANDAS question. For example I can point to the week my d "became anorexic" and started exercising compulsively, this lasted for 3 months and then left. Re: The OCD issues, are these ongoing for your child, did they come on suddenly? Have you seen exacerbations? What have doctors said re: the facial grimacing/hands issue and breath holding? all the best--

I must "second" Brian's reply-- All the best as the next months unfold, may there be a complete reversal and healing. You and EAMom are greatly appreciated--