T_Mom

Thinking of you Vickie and hope it goes smoothly today--

Hi Becky, and welcome. I am sorry you have had to find us here--but this forum has been a very real help for many of us here--and I hope it provides the same kind tone, incredible support, and information for you. First, I assume you have found the info. on the forum under the Helpful Threads post on the Pandas forum page? A website that I find helpful is www.pandasnetwork.org Many have seen or consulted with Dr K and would be happy to share their personal experiences. You can ask here or personal message the person, and this can help if you ask to speak with them by phone as well. I know your feeling of "running out of time" -- Many times I have to force myself to take a deep breath, to hold steady my own thoughts, and to then plot the course, step by step. My only suggestions would be to actually talk to a few people who have been in your place and to read (as you have) in order to make the decisions the best you can--that is truly, what we all are trying to do-- re: possible clinical trials, check the NIH website to see if/when something may be posted--or call Dr P.Grant (at NIH) to ask.

Yogamom58--You have gotten some good suggestions here. You might also want to read the "helpful threads" located at the top of the PANDAS forum page. There you will find a host of info. including information on steroid bursts. Steroid bursts were very helpful in my d's case. If you are not near a PANDAS doctor you might want to contact Dr K for a phone consult www.webpediatrics.com (in the Chicago area) and see if he would work with a local neurologist (they are often comfortable with steroid use) in your area. I will add, at first I was very afraid of the steroid use for our d. A local neurologist (who never mentioned Pandas) said to me, that he would do steroids though it was off-label and "people would not understand why" -- It worked wonders.

Thanks for these great posts--I appreciate the info.

These are some wonderful posts-- Our d has severe confessing issues, with each exacerbation. It amazed me this summer as she was coming to me and "confessing" (really just wanting to tell me) about things that she could remember from 3 or 4 years ago. Really little things--It seemed that these things were long forgotten, but now dredged up for review (things she had read in books for example.) None of these "issues/things" were of any consequence at all -- however she felt the need to confess them. Our d (12) told me this week that she was dealing this week more with compulsions then with obsessions...(I almost fell off my chair.) She told me that the intrusive thoughts in her head (that previously were causing the confessing issues) were less then they had been (I knew this as the constant muttering under her breath had slowed/ended as the prednisone burst tapered.) However, she was able to identify that she was feeling "compulsions" to leave some math problems blank, or erase and rewrite due to OCD. The insights these kids have into themselves amazes me. I wonder if there is a "recovery" pattern as the Ps is brought into control...such as, do obsessions go first? tics? then compulsions? just a thought-- Megsmom--I am going to try your idea with the "chips". Thanks.

We are heading into a meeting next week with the Middle School "team" of teachers (at their request) re: our younger d. She is having an exacerbation affecting school/home life. (Switched to Zithro. in hopes it may help--) The typical Ps school issues (OCD, writing, erasing,etc.) I would really appreciate any suggestions or "lists" of accommodations that people have requested for 504 plans in schools--I need some concrete lists to consider. Thank you--

SFMom-- Can you elaborate on this -- Do you think she means that the Cam Kinase levels are raised in the case of lyme then? How then does one tell the difference? thanks--

I agree with the above by TPotter--and want to add, that it is time to find a new doctor who will be open to the science and evidence in front of her/him. You will get no where with the pediatrician you saw today--

Our d had ups and downs while on the steroids but when she cleared with the steroids it was just as Dr K says: a sudden and obvious reaction. There was no doubt it was like a jump-start that helped in the long term.

PANDAS symptoms are varied but there appear to be a core of symptoms, including tics/tourette-like behaviors (see lists in the "Helpful Threads" posts at the top of the Pandas forum--or on websites www.pandasnetwork.org ) In many cases the diagnosis is made in a clinical fashion, once you have seen (time and again) the symptoms reduce or abate with antibiotics--then you may have probable cause.

did your dd have IVIG? Full-long-term abx and steroid bursts (2) have been enough up to now. We are waiting to see if they will be enough again, or if more is needed (such as IVIG.) I share our experience with full strength abx as these were very much a part of the entire healing process and maintenance of her health, much more then "just" preventative I believe-- There is no doubt that full-on antibiotics controlled OCD and ticcing for our child.

In our case we are convinced that the antibiotics are doing more then just "keeping strep away" -- It truly seems to have a treatment effect, anti-inflammatory, or whatever, it has a direct correlation with the ramp up of OCD/ticcing. After over a year of being free and clear while continuing on full strength abx for our older d I tried to cut back this summer and she flaired--it has continued now since late July. It is no fun. We put her back on full strength right away, switched her to Augmentin XR 2000mg, and now trying a steroid burst-- but she is struggling--and it is painful to watch.

Wow--I can relate this morning. The yelling, screaming "I hate you" and "You are the worst..." from a 10 year old can be devastating. Peglem said it so well--We do have to constantly remind ourselves that it is the Pandas treating us that way, not the child. This is NOT easy. The only thing I can think to add is to ask if you have ever tried a steroid burst? Dr. K (via phone consult) was a huge help as we worked with a local neurologist who implemented it for us. Dr. K's idea of using it as an "indicator of Pandas" is enticing as IF it makes a big difference then you have some back-up to the fact that it is inflammation that is at the root of the behaviors. Dr. K. would say that it also indicates that the child may be a good candidate for further treatments. It sounds like you may need to explore new doctors as well-- Steroid burst was a life-saver for us twice.

Laure--I love that soft-soap comment--and understand! I think you should check the clavulanic (sp?) level for the weight--I know it was a concern for us as well. As far as generic or name-brand Augmentin XR, we thought there was improvement on the name brand, better then the generic for our d (or so it seemed.)

Mary--wonderful news! May I ask you about the study/article? on NAC that was mentioned--do you have the link? Also, would you mind sharing the dosing you are using of the NAC and the weight of your dear son? (with this episode our d is starting to pull her eyebrows--) Also, right now your child is no longer on antibiotics--correct?--thanks. SO, so glad for you--

Tamistwins--Welcome and I am sorry you had to be here too-- We have been through it and as I read your post tonight I can't help feeling the frustration and hurt that this causes...We are in the midst of a "bad spell" right now--with both of our daughters...I want to encourage you that healing takes time. Even as I write that -- I am reminding myself, as this is so darn hard and I am scared of it getting worse. It takes time to heal though-- I remember Diana P. telling me to hang in there, that it takes months sometimes, and she was right. We are a compassionate group here on the forum. One thing we have seen is that for many of our children healing takes time. Plan the treatment steps and then hold steady and give them time--I am telling myself that tonight as well.

Robin--I just read through this thread, I am so sorry--Please remember, PANDAS/PITAND diagnosis is often made with observation of "response to treatment"... Many of us were never "lucky" enough to have blood titers drawn at "just the right time" to show high levels, or perhaps not "strep-positive" on a throat culture because it was a sinus issue, or just not the "first" episode -- (but one triggered by a subsequent virus.) As Swedo noted: after the first strep illness, kids may have an exacerbation due to simple being exposed to other illnesses--which may then trigger the auto immune reaction in PANDAS kids. re: ticcing, our experience has been that it comes and goes, and morphs into different types--It does not necessarily last lengthy periods all-day, every-day for weeks on end, but then again, it may-- w/ OCD: MANY PANDAS kids have the spitting issues (ours did)--just like your son. Urinary issues were described at the OCF conference this summer -- and these can definitely be PANDAS issues (with a physical Ps related cause...) A month of full-dose antibiotics (SEE Buster's flowchart in the Helpful Threads post) and if you see improvement...that may be the best test of all. Relatively benign treatment if you have OCD and tics!--in our opinion. Megsmom gave some great suggestions which I am going to try at home--thanks!!

Here it is: http://www.latitudes.org/forums/index.php?showtopic=5023 Take care--

Nordic Naturals from Whole Foods has an EPA heavy omega capsule which is primarily only 3's. (Though we now give omegas in Flaxseed oil as I felt the fish oil made one d react with increased ticcing.)

Here is another one--hysterical and happened this week in our family. DD (10) is in an episode, overcome with the fact that all her socks are contaminated. Trying to get her out the door for the drive to school is close to impossible. My dear husband drives off with both kids in the car-- As they turn down the lengthy driveway to the school our dd threatens to throw those "dirty" socks out the window--and holds them out the window flapping in the breeze. As my husband whirls towards the drop-off area (where the librarian is waiting to open the door) my d starts to yell "lock the door--lock the door"! The librarian calmly opens the door (by now dd has socks and shoes on her feet again) and dd leaps from the car to go (happily) inside... (EAMom--your story made me laugh--thanks!)

Hold steady--as the moms so far have said, this is a completely normal reaction by any parent going through this horrible illness. It is an insidious sickness that steals time from everyone in the family, and breaks your heart along the way--If your d was diagnosed with Pandas a few months ago, and you have been going through the worst of it since then--you are no doubt exhausted and (like all of us who have been there) scared. Hold steady--The true diagnosis is (in my opinion) made when response to treatment is evident. "Regular" OCD does not go away with antibiotics/steroid bursts/IVIG/or pheresis-- This is (hopefully) the worst of it -- hold steady, you can do this.

Hi Holly-- Well, tooth loss and subsequent Pandas episodes were one of those, "OH, yes!" situations for us--when we read it on this forum for the first time... Truly, if we had not lived through Pandas we would have difficulty believing it... SO much of what we have experienced (tooth loss episodes, spitting/saliva, urinary issues, writing issues, blank stare, dilated pupils, OCD that manifests in similar ways including step-stepping, bathroom issues, etc.) SO much of what we have experienced has been seen by other PANDAS parents, and yes, I am sorry to say tooth loss triggered episodes. The thought is that the blood-brain barrier is breached (?) (Buster would know better then I--) but that is my understanding. For what it is worth-- YES, and our younger daughter lost 4 teeth this summer, oh joy!

Hi -- I can only speak from our experience but with my d, who had severe and obvious Pandas episodes (OCD, mild ticcing, posturing, severe writing issues, etc.) our experience was that she fully recovered with treatments. In her case full strength long-term antibiotics (as if she had strep) and steroid burst were essential.

Kayanne--It is interesting isn't it--this whole picture of Swedo's work on Pandas and now her team moves to autism. I wonder if it is not just "strep" but the auto-immune inflammation result of some issue--and those seeing improvements with kids with ASDs are seeing the effects of anti-inflammatory issues being resolved. I know I heard the Director of NIH indicate that NIH research was leaning towards seeing autism as a "synaptic disorder" -- which of course (I think:) means something physical and triggered physically. PhillyPA--So glad you wrote in on this, you are one amazing mom.