T_Mom

In our case, the first time our d was in the midst of a severe episode she took Prednisone as a "burst" for a total of 7 days and then tapered it down over the next 4 days (40mg for 5 days, then 30mg for 2 days, then 10 for 2 days, and 5mg for 2 days to taper.) She had a sudden and dramatic response on day # 20 (counting from the first day of Prednisone) -- which was 10 days after the last Prednisone pill was given. Dr. K. had told us that it could take up to 3 weeks to see the effects of Prednisone in an older child. He was right. He also said he had not seen the effects last more than 3 months. Our d was 10. She was essentially "clear" of OCD and tics until she caught a cold about two months later. Take care, TMom

I am signing up for those Google alerts right now! Thank you!!!

Oh my!!! Colleen, how did you find this?!? Fantastic article-- I have an eery sense that this is but the "tip" of an iceberg--Way to go Dr. Hornig. T.

Manda, I agree with EAMom entirely-- Colleen's great post hits the nail on the head for so many of us who have seen severe sudden onset behavioral changes and erratic behaviors...Now when I think back on actually being afraid my d would open the car door, or jump from the high stairs, or some other horrid thing to hurt herself because "something" told her to...AAAAHHHH. and that was less than a year ago. Now, it seems like another life, and it floors me to look back on it. This has got to be holding SO many children captive, who end up being medicated to the hilt mistakenly. It breaks my heart to think about. Get the Cunningham tests done if at all possible prior to steroids. Email or call and they will overnight the box. All the best--TMom

She has always been very responsive but I always call the office (rather than email) with medical concerns. Hope things get much better soon--

HI Manda, I am so glad you found this forum, and that you are seeing Dr. K. next week. Rereading your posts it strikes me that the symptoms you have seen in your daughter are similar to those reported by parents here. Involuntary movements that appear as tics, and as one doctor (?) referred to them "muscle spasms" (which have included finger flicking, sniffing, blinking, shoulder shrugging) that you have observed ebb and flow. 9 year old bedwetting and having urinary incontinence suddenly, highly gifted child, episodes of apparent severe mood lability and impulse control issues, obsessive food issues (not eating certain foods, etc.), and multiple episodes of strep (scarred tonsils.) You mention she is on Abilify and Prozac (We too tried zoloft/prozac due to doctors recommendations.) I am wondering if you have seen any improvement in your daughter when she is on full strength antibiotics? If you reread old posts, you will see that many parents see a significant decrease in PANDAS/PITAND issues when given antibiotics. Dr. K. notes on his website that early antibiotic treatment may result in a "cure" essentially. We are on full strength Amoxicillan and have been for a number of months. We decided it was worth a try and that it was certainly relatively benign compared to the alternatives (which for us included a suggested stay on a psych ward.) With the steroid bursts my daughter came back to normal--the antibiotics, we believe, are keeping inflammation down and modulating her immune system, contributing significantly to almost zero symptoms, it appears. Keep us posted--I hope the appt. next week is insightful--

oops--double post, sorry

YEY, MDMom-- Glad to hear things are going well ... That is fantastic news. TMom

Quote: " When she saw my husband she said, “Daddy, I can talk now!”... ...She has been off the prednisone for 2 ½ weeks, and we have not seen any slip back…in fact we think that she is now at 99%. In the last week, she seems more interested in the creative things that she used to love…she reads more now, she has written a little bit, and she has been coloring in a hidden pictures book.... ~Karen" Karen, That is fantastic news--thanks for sharing it with us. The thought of your little daughter saying "Daddy, I can talk now!" is wonderful-- We have had similar experiences. First prednisone burst ended a severe exacerbation. She was essentially held hostage by it. She had a sudden "recovery" of her abilities due to the steroids. About 9 months later we tried another steroid burst when she was doing about 85% -- It brought her back to 100%. The effects for our d lasted fully for about 3 to 4 months. Then some low level issues have crept back.

Hold Steady F.A.--Our thoughts and prayers are with you tonight. Sounds like you are in good care, we will be thinking of you-- all the best, T.

I just read this resource-link from the PANDASNetwork website-- There is a note on the website that states: "Attached is a description of encephalitis syndromes where psychological symptoms are nearly identical to that of PANDAS. This is a publication by Oxford University. Please read this as precedent-only for psychological symptoms, i.e., in Von Economo's Enceph – for PANDAS-like behaviors, as described by Dale above. In this viral form of enceph, the basal ganglia are assaulted and the viral infection is also present in the brain. Click HERE for the Oxford Encephalitis Article." http://www.pandasnetwork.org/Enceph-Oxford.pdf I was struck by the fact that the article mentions possible presentation of encephalitis as if schizophrenic. We asked more than one doctor if our d had psychosis during her severe exacerbation. It seems that for most kids the reaction is less severe than some--but when it is severe it can be all encompassing.

Thanks Nancy, I appreciate your perspective and experience. The physical and emotional manifestations of our ds exacerbation last summer resulted in a presentation as if she had severe autism, including some of the aforementioned characteristics. Suzan, I am so sorry you have gone through this-- The Swedo video clip (posted earlier on the PANDAs forum) from the DAN conference, Oct. 2008 (I believe) is where I first learned about her move to autism-issues research. That clip is interesting to view. Definitely appears to be on to something-- Good for her--

Nancy--I'd be interested in your opinion as to Dr Swedo's move from PANDAs to Autism research now-- any thoughts on the connections? What is your understanding of it? There is no doubt that during the worst exacerbation our d presented as if she had severe autism.

Colleen, I called our pediatrician and explained the situation--they did the draw essentially as a favor. I don't think they knew how to "code" it for payment, so they just did it and I took the vials and mailed them off. I did show them the paperwork as well. Hope it goes smoothly for you--

I hear you on the tired-ness issue Bronxmom-- I know what you mean... I just had a family member visit who had long winded concerns (again) expressed re: long-term use of antibiotics...same type of thing. Even expressed that this must be our "way out" of dealing with behaviors, yikes! I found it really difficult to talk about, found myself fumbling around for the right words to explain...sad and angry at the same time. Feeling really, really misunderstood by a family member--it hurts. We have considered backing off the current antibiotics (Amox. full strength) but even now there are infrequent symptoms of compulsions, and it seems a slippery-slope once a child starts sliding, in our case. EAMom states it well for our situation, it is choice right now, and seems really, really benign compared to what it keeps at bay apparently. Hang in there, and give that step-son a hug for his care and concern--

I had the lab draw the blood at the same time that my daughter was already getting a physician ordered draw. That way, the lab just had to fill the two study vials from the puncture that had to be done anyway. The lab did not charge us and the phlebotomist spun it for us as well (though I think she did this under the radar, w/o the lab manager knowing). If I'm reading the results correctly, I think my daughters CamKinaseII was in the SC range, the antibodies were about in the middle of the positive range, if I'm understanding correctly. Peglem-- Those Cam Kinase levels seem quite high. (According to the research-article graph.) Our ds levels were in the middle of the PANDAS group, and it is my understanding that our results indicate the presence of the antibodies (even still after a few months of antibiotics and a few weeks of steroids.) Do we know if the Cam Kinase levels (if they are as high as your ds level) possibly indicate SC? --or is it an indication of a continuum of degree--of the effect of the antibodies? Was your dear d in the midst of an exacerbation when you had her blood drawn?

When we had our d's blood drawn the lab drew the blood out and then after "spinning it down" the lab put the blood into the plastic tubes for mailing. It was my understanding that if you could not get the blood "spun" by the lab, then the blood was drawn right into the glass tubes and sent in the glass tubes. You might want to check though on the particulars. Also, do let them know the prednisone/antibiotic use -- I was told that these could make a difference to the results.

Jee'sMom-- I am so sorry this is going on-- This article may be helpful to take into a doctor when discussing antibiotic use and PANDAS/PITAND. http://www.pubmedcentral.nih.gov/articlere...i?artid=2413218 Take care--

I am so sorry your d is experiencing this-- I wanted to agree with ShaesMom that the "diagnosis" of this is not clear cut, but certainly if treatment with antibiotics makes a difference in her behavior that was an indication in our case... Our daughter has never had positive bloodwork or a pos. strep test since we have been testing her---I suspect she had an undetected strep episode, earlier in the year, and then every illness/sinus cold triggers it--when she is not on antibiotics. Take care--

Wow. This thread hits home. Thanks to all for posting here-- In our case antibiotics were KEY in determining if it may be a "PANDAS" reaction. Antibiotics do not typically bring about behavioral changes! That is not the "on label" use of antibiotics. Given that there is a behavioral change after a few days of FULL strength antibiotics--I think this is key in making the determination in our case. I am becoming convinced that long-term full strength antibiotics are controlling the symptoms. It is evident after a few days, and continues. Symptoms went-away with full-strength antibiotics (Amoxicillan.) There is still low-level "stuff" every now and then, but not crippling. She experiences evident relief on the antibiotics. This is not just preventative use to "keep-away strep", but it is (in our case) a definite treatment effect. Perhaps a month of full-strength may be enough for some.

Doctors we have seen who helped with PANDAS. This is a parent listing of doctors who helped--please add to this list. This is a list by parents, for our own collection of who-we-have-seen that helped us, and does not indicate any type of endorsement of these doctors by ACN/Latitudes,or by the parents who are posting here. Rather, it is a reflection of our experience along the way- http://www.latitudes...?showtopic=5023

Please let us know what you find out--This is an important question for all of us along the way-- Thanks!

Hi FA-- When our d had her worst exacerbation last summer (crippled by OCD, no speaking, etc. etc.) I believe that Dr. K indicated that the longest he had seen the results of steroids "last" was around 90 or so days...that is what I remember... He was correct, she had a mild exacerbation within that time frame. About 5 months later she had a severe incident of 10 days of severe OCD-no speaking again. We put her back on full-strength antibiotics and she cleared--but it truly took a good 3 months to come back to 85% herself again. However, if you read Dr K's website, I believe he indicates that antibiotics, if given early in the PANDAS illness may "cure" once and for all--I pray that is true for you.

Hi Wendy, I agree with Linda that you do not always find positive titers, it depends on the timing of the rise and fall and in some children they do not appear to be "necessary" as an indicator. Our daughter has never had high titers, nor (in the last year and a half) a positive strep test. Yet her CamKinase levels in the Cunningham blood work were right in the middle of the PANDAS group, even when she was doing very well-- The diagnosis may be more subtle than obvious (though the symptoms are typically VERY obvious)...the big question is does the child respond to antibiotics, or a steroid burst... Regular OCD does not go away with antibiotics. Typical tics do not go away with antibiotics. Ask any psychiatrist. IF it is a PANDAS syndrome it will need treatment. I would try to find a doctor who is willing to follow you now (in the "better" times) so you don't have to find one if another crisis comes along (may it never reappear--) Best, T.

Sam--Thanks for letting us all know how it was. So glad you are through the process and on the other side of it. Hoping for complete help for her system-- T.