T_Mom

Reading your story I felt your experience all too clearly-- No one could make up this type of a Pandas story...truly it is amazing when you read such an account. I want you to know that there are a number of families who have had similar experiences and now have kids that are essentially healing or well-again after long term full strength antibiotics, and/or steroids, IVIG, or plasmapheresis. Read the www.pandasnetwork.org website for more information, and be encouraged. Welcome.

Kim--Thank you for posting this -- fascinating. I shudder to think what the outcome would have been if we did not have a neurologist who "thought outside the box" when suggesting the steroid burst for our d in '08. We literally had to carry her into the office, severely affected by OCD and tics, and he told us, "This is outside the box...but..." Thank God he did. She was back, walking and talking within 10 days.

You need to get to Dr Swedo or Dr Paul Grant -- both are there and both have been involved with Ps issues in the past.

PMom, this is such an interesting post-- I have not heard anyone say that there was an increase in behaviors initially with a steroid burst and then a settling results-- Though that has been our experience certainly-- You do have to see it through, thanks for reminding.

What a great thread--and an international reach-- I want to add: THANK YOU to all of you--the past year and a half has been BUT one of the standing supports to my heart has been this forum (night or day) of unknown faces, but all too familiar stories... Thank you--As we put the pieces together--we have written a picture of this illness that does not exist anywhere else, a help to many, many of us along the way-- I am thankful for you all.

Erica--I know the feeling--but you are handling it, you are searching for a solution, you do know that this is not "parenting" issues, it is an illness. My own sister has said some of the same things--until she saw the Saving Sammy video and saw the reality in someone else. I just want you to know I can relate-- All the best--TMom

Erica, you have gotten alot of good feedback here--I want to add that YES I too see my daughter again--after ups and downs over a two year period of time, and she is on full-strength antibiotics, 10 months now. She is back. I can tell you that when her personality started to come back, and her academic abilities...it was our daughter again--A stark contrast, stark. Hang in there--There IS HOPE... If a mom were to come up to me tomorrow on the street, after our experience I would say: Antibiotics full strength for at least a month--WORTH A TRY. Then, if inflammation appears to remain--one of the treatments we have seen work on kids in the past, steroids, IVIG, or PEX would be what I would consider doing. Their personality does come back--it takes time and healing.

I have been reflecting this past week that this year is radically different for my family than the last two Thanksgiving -- Christmas seasons-- For the first time in two years I have a hopeful heart--Two kids that are both on antibiotics, but doing alright. Now that is something to be thankful for indeed. Two years ago we saw our oldest d take a sudden dive into anorexia, and obsessive exercising. The anorexia lasted almost exactly 3 months, and left just as suddenly (9 years old.) The following summer full Ps hit -- crippling OCD, tics, etc. Steroid burst and antibiotics cleared her. Last Christmas same d was hit by Ps symptoms again when she caught a cold--full blown OCD, tics, etc. Cleared again with antibiotics and steroids. It is amazing to have found a knowledgeable doctor that has helped. Thank you--

Mati's Mom, I want to chime in here--First, I am really sorry your child is going through this-- For us antibiotics provided an obvious improvement to OCD and tics. If it is Pandas I think we are all seeing this as a pattern that is relatively consistent over time...But it does take time. I would ask re: your antibiotic use have you seen a significant improvement over time in symptoms lessening? Our daughter was severely affected with OCD and when the antibiotic dose was high enough we saw a marked improvement week to week for a 3 month period of time. Around 3 months her improvements plateaued and we tried a steroid burst (NO big deal in our case--twice now.) With the steroids she came back 110%. Again, though--that makes sense if it is the "Pandas" construct of inflammation, etc. I think if you truly believe it is Lyme related you certainly need to rule that out regardless-- All the best, I hope you find what will help soon-- TMom

Hello and welcome, I am so sorry your child is going through this-- ANDREW J. CHURCH, B.SC., and RUSSELL C. DALE, M.B.CH.B., M.R.C.P. London, U.K. are in London and very familiar with Pandas issues. That may be a start-- Chart and keep track of your child's reactions to antibiotics and find someone that is familiar with Pandas and willing to try to treat your child. I wish you the best with this --

I so agree with Meg's Mom. Our d was put on zoloft (very low level) and switched to a very low level prozac prescription, which we continue because we are scared to change anything. We believe it is the antibiotics and two steroid bursts that have "cleared" her. Sudden and obvious change with the steroids, and gradual but lasting change with almost a year of full strength antibiotics. We did about three months of CBT. It helped us all "talk" the vocab., cost us thousands, and maybe helped the school (I guess!?) -- but did it really help change anything...not so sure about that one...I'd have to say no. During an exacerbation she could not apply the principles, and when not symptomatic she did not need it-- We still use the vocab though. I will add that I asked 3 different psychiatrists whether or not our d was psychotic (severe, severe behaviors for a month 08), each one said no. I would get a few opinions from folks on a child psych. ward, and those who have had extensive experience with childhood schizophrenia to compare opinions. My d was in a ball, holding painful positions, walking on her knees, non-verbal, spitting on herself, and wetting herself, acting like a naughty 4 year old when she did interact, and this came on suddenly and lasted about a month. Oh, and she had OCD as well. It is still hard to believe at times. It takes time to heal.

Shaesmom--Great news to hear tonight, thanks for the thorough update. 125%, now that is a blessing! SO happy for you all, TMom

When my daughter had her first exacerbation it was two years ago and her behavior (and her sister's) was suddenly so bazaare that the first two weeks of November I wondered if they had been "poisoned" by something in their Halloween candy--Truly. Then our d headed into full-blown anorexia for 3 months--age 9. I wonder about the "growing out of it" as well, as our oldest (just 12 this week) is doing very well--full strength antibiotics, and very low level Prozac, but very steady. If a child does have Pandas, I am convinced that Swedo's model of treating with immune modulating therapies and/or anti-inflammation antibiotics is effective--though it may take time. In our case, a month of full strength antibiotics and we started to see progress, and of course the steroids.

Lismom-- We have been treating with full strength Amoxicillan since Jan. 09 --( continuously at 500 mg 2 times a day, 95 lbs.) She had been in the midst of a bad exacerbation (OCD non-talking, step-stepping, mild facial tics, mouth stretching, etc. for over ten days all triggered by a bad cold.) It was horrible, over Christmas with both sides of the family here at different times. After 10 days of Amox. we had gone to half-strength and that was when it really exploded--we went back to full strength and within 4 days she could go back to school. We literally saw weekly progress-- When her progress plateaued (at about 3 months) we tried a steroid burst to bring her back to 100%. Her reaction was amazing, she came back 110%. it was an obvious improvement. She did have a mild exacerbation this spring, but NOTHING like before-- We just weathered H1N1 at our house and no symptoms-- If she had another bad exacerbation I would try steroids, or PEX or IVIG, no doubt. There is too much at stake to miss out on the time when she is well and happy again--We are going to do everything we can to not go back there, ever.

Hi Faith and All-- Faith, to respond to a few of your thoughts-- I think the suggestion of "overall" rating that Buster and EAMom did sounds great-- Beth Maloney did a daily detailed record keeping for a few hours at a time--these could be general notes, for example something like: 9am-12pm Compulsions about germs, 5 times circling the bookcase, etc. Try to quantify the rages, count the number of tics, types and frequency (average per hour), whatever might give you clues to follow over time. --or "rate" the level of ticcing 1 - to - 10 for the day, same with OCD. My d was old enough that I also asked her to rate her sense of OCD compulsions--she was very good at this. Yes, we have had good results on Amoxicillan full strength for 11 months now with my oldest (11). It took time though-- Week to week at first we could see improvements. We have also done two steroid bursts along the way. One the Dr. K intense 5 day +taper, and the other a more lengthy treatment over 4 weeks. I will say that Dr. K had told us initially (when my d's Ps was so intense she presented as very disturbed) that the steroids would make a difference IF it was Pandas. His words were "SUDDEN AND OBVIOUS" change...I kept trying to pin him down as to what that would look like, he kept saying IF it happened we would know--there would be no question. Oh my goodness, in our case that was so incredibly true--He also said that with steroids it could take weeks to see the response. That was true with us, it was 10 days after cessation of the steroids that she "cleared" --She was not 100%, yet--but it was much, much better. Don't give up yet--Sammy did not have an overnight 100% healing with the Augmentin, it was over time, clearly there but over time... By "sawtooth" I mean up and down, up and down, but with treatment you will hopefully see an over all trend down in number of symptoms--though it can be a rocky road along the way--It is the long-term plodding in the right direction. I remember Diana telling me last year that it was like a child's brain was on fire--and that the damage took time to heal-- I do fully believe now that with Pandas it is treatable. All the best to you-- T.

I am preaching to the choir here--but after two years of this Ps I want to stress something to new families-- Keep track of data. The ups and downs of Pandas ARE saw-tooth-- If you stand too close you may not see the true progress your child is making on antibiotics, steroids, or after IVIG, PEX, or whatever treatment is underway. To get the full picture we have had to step-back and watch -- let the treatment work, it takes time. Document objective behaviors over weekS...not days. This really struck me in the Saving Sammy book as Beth literally kept track of behaviors from morning to night when working with Dr. Nicolaides (p.167) TRENDS over time are what tell the story. OK, just some random thoughts this morning...

Dear Lauren's Mom-- Welcome!! You dear woman, most of us have experienced sudden change in our child that leaves us (and the medical field) baffled-- I hope that whether your dear child does, or does not have Pandas-- that you find the right remedy to address this sudden onset "ticcing" right away. Regardless, all the best to you, your daughter--and I think you had the courage of a lion-mom to go the route of public attention, so early in the game, and it may have saved your daughter further difficulty. I pray so--may you find the answer/solution soon-- All the best, TMom

Welcome and I am sorry you have had to find this forum-- YES they can get better--if it is Ps. You may not know it is Ps until you see a course of exacerbations and subsequent responses to treatments. Read: Dr. K's site -- it is clear and easy to follow. www.webpediatrics.com Read: www.pandasnetwork.com LOADS of good info. there-- Find a doctor who treats and try antibiotics would be the first thing I tell anyone. Go from there as necessary. Let us know specific questions along the way and people will share their experiences-- Again, welcome.

NVAMom--Welcome and I am sorry you have had to join us here-- My only encouragement would be to look at the weekly-TRENDS, rather than the day to day. Give it a month, or two as you hold a steady course. There have been ups and downs for all these kids when coming out of an exacerbation and during healing. I do believe in Dr. K's idea of the "turning back the pages" -- some type of replaying, repeating, of symptoms going by as the mind is healing--in our experience this has happened more than once. All the best--

Help-- Do you think this is a problem? My younger d (9) is on Augmentin. 500 mg twice a day. We are giving her the Augmentin tablets which say "500/125" From the Wikipedia description below, it appears there can be too much clavulanic acid given. * Note, Sammy was on Augmentin XR which has a lower ratio of clavulanic acid to Amoxicillan (as noted below.) So, if we are using Augmentin, it appears that we should request the form that provides the lowest amount of clavulanic acid?-- especially for younger children? Thoughts? The following quote is from http://en.wikipedia.org/wiki/Co-amoxiclav "Co-amoxiclav was invented around 1977/78 by British scientists working at Beecham, which filed for US patent protection for the drug combination in 1979. U.S. Patent 4,441,609 was granted in 1984. [edit] Dosage The proportions of the two constituents are expressed as x/y where x and y are the strengths in milligrams of amoxicillin and clavulanic acid respectively. However, the branded products indicate their strengths as the quantity of amoxicillin, hence co-amoxiclav 250/125 ≡ Augmentin 250 and contains 250 mg of amoxicillin with 125 mg of clavulanic acid.[1][2] Standard adult dosages for respiratory tract, urinary, abdominal, and dental infections as well as cellulitis and animal bites is co-amoxiclav 250/125 (one tablet Augmentin 250) taken every 8 hours, which may be doubled in severe infections (as a single tablet of co-amoxiclav 500/125 ≡ Augmentin 500, but not as two co-amoxiclav 250/125 tablets which would double the maximum recommended dose of clavulanic acid). In the US, Augmentin XR (co-amoxiclav 1000/62.5) is marketed for use in community acquired pneumonia with two tablets taken twice a day (giving 4000 mg total daily dose of amoxicillin). Dosages for children are also given three times a day using suspensions containing co-amoxiclav 250/62 in each 5 mL (Augmentin '250/62 SF') for those between the ages of 6–12 years and co-amoxiclav 125/31 (Augmentin '125/31 SF') for those between the ages of 1–6 years. A more concentrated solution, co-amoxiclav 400/57 (Augmentin '400/57 SF'), may be administered more conveniently just twice daily to children from as young as 2 months of age; quantities are based on body weight with 2.5 mL from the age of 2 years and 5 mL after the age of 6 years."

Hi Meg's Mom-- I am sorry, I really do not intend to be slamming CBT or therapies that may be found helpful--Certainly these therapies can be helpful to many people for many issues. I was articulating the fact that in our experience, we have found PANDAS to be a physical malady which must be (if it is PANDAS) treated physically in order to truly address the symptoms. I would agree that CBT, counseling, ERP and the like can be very helpful given the right circumstances--which most professionals would agree is a child that can benefit from cognitive behavioral therapy. We visited doctors from some fairly well respected hospitals and I cannot tell you how many times I heard that the "standard protocol" for treating OCD was CBT and SSRI's... however, -- what worked to rid our child of OCD and tics were the antibiotics and steroids (--thanks for that suggestion Dr. K.) Now, surely there was some benefit from the thousands of dollars we desperately forked out for the "standard protocol" for OCD (SSRI's and CBT) but in the end that was only "helpful" in a very general way. Antibiotics and steroids made it go away-- That has been our experience--and I do respect yours-- All the Best, TMom

I think it is important to determine if a child has typical "OCD" or a "Pandas" illness-- which, like Sydenham's Chorea, may involve physical and neuropsych. symptoms of OCD/tics/etc. We believe that IF indeed your child has a Pandas illness, which is manifesting with OCD then you must treat the underlying illness to get at it-- We spent thousands of dollars on CBT, cognitive behavioral therapy with a very skilled therapist. We were helped in that it gave us a "vocab" to speak about the symptoms with our d, and an outside (albeit expensive) listening ear once a week--BUT, this young bright therapist acknowledged that most children made progress when applying the techniques--and our d was not making the expected progress...hmmm.... I do agree a wide variety of therapies may be helpful to rid a child of any "learned" behaviors-- BUT if a child HAS Pandas, OCD and/or tics are thought to be physical manifestations of an underlying illness.

Judy--thanks so much for posting those, just like you did! I loved being able to scroll down and read the text portions you had chosen to share with us-- I remember those posts all too well, as my d was in a heck of a time then too--and school meetings were really awful. They just did not understand that tardiness was no longer a concern...nor an option on many mornings...yikes!

I vote for the chart--We would send in, great idea! TMom