T_Mom

Oh my goodness-- This needs publication! Buster what program did you use? For the sake of Pandas parents everywhere--WHEN do you plan to publish some articles on your insights? (I want to know so I can read them--)

L's Mum--Welcome. I wonder first how much antibiotics your child is on? Is it full strength--as if he/she were to have a sinus infection? In Saving Sammy, Beth Maloney found high dose Augmentin to work, but it was a relatively high dose for a length of time. I can say that our daughter has been on full strength Amoxicillan, full-strength as in 500 mg twice a day, for over a year now and is completely symptom free. The Dr Murphy observation/article re: the effect of SSRIs on Pandas kids (that SSRI's can be counter productive) is just that--an observation of Pandas children. If it was me, I'd be the first to try a month of full-strength antibiotics before SSRI's -- and even try switching antibiotics along the way. All the best--

Would Augmentin also be a viable alternative? Does anyone know where it lies on the "spectrum" range as an antibiotic?

Another very helpful website with information: www.pandasnetwork.org

Hi Buster--Great idea! In our case Box #7 should read: "suspected" GABHS--as sinusitis showed up on the MRI. However, it was never determined positive, as sinus cavities were never tested for strep. I would almost feel more comfortable with the flowchart if Boxes 4+5+6+7 were somehow folded into each other, and left the door open for "suspected", without proof. Those of us with raging sudden-onset OCD (and no positive strep "caught" in swabs or titers...) may still benefit from antibiotics and/or steroids trial. Again, great idea.

This is really interesting to me-- The dosing seems to be so different. I don't remember the Dr. K dose, but it is significantly less (as I remember) for the 5 days (based on weight.) I can completely understand your sense of joy over the results. Steroids have been a life saver for our girls-- Setting them back to themselves. We did have hyper-activity and some emotional lability, but I welcomed that as a change from the severe OCD/and mild ticcing. May your good results continue!

Interesting, that seems much higher than what is being done by Dr. K or Dr L for steroid dosing. I had the impression that what Dr K was using was considered already "high" and it was about half of what you are using, (as I remember.)?? Is that 60 mg of Prednisone ?

Mati'smom has a good suggestion here--Could you ask for a month of full-strength to see/document what happens? Keep detailed records, every 3 hours # of symptoms, and go from there? Asking your doctor to call Dr L for a phone appt. -- re: antibiotic use, or call Dr. Leckman, Dr. T., etc. is another idea. Seems you may need some Pandas experience beyond your local doctor.

...He was on Augmentin 1500mg a day for 10 days, both times. Both times his symptoms were some what milder while he was on antibiotics,, but within a couple days of going off anitbiotics his symptoms would explode again.... I understand--and have been there. You just said it. You have got to get to someone that will help.

BMan--the best advice we ever got was to try antibiotics for a month at the full-strength level. We did this, and all we could get at the time was Amoxicillan. It was a process, but week to week we saw improvements. Look for week to week improvements, and patiently try,... would be what I would do. Especially if your child reacted well before with antibiotics. If exposure to school brought exposure to another child with any illness this could have triggered a reaction in your child. Pandas, after the initial strep infection, can "reoccur" with full blown OCD and tics simply from exposure to "illness" in another child...and you may not get a "positive" strep test!!! Please note that Sue Swedo also observed that other illnesses can trigger a Pandas reaction after the child has an initial exposure to strep, (in her research!) I'd say if you think antibiotics helped that it is worth a try once more, for a longer period of time. Our d has been on Amoxicillan full strength for a year. If Amoxicillan is not strong enough you may need a different antibiotic. Augmentin has also been helpful to us.

I am so sorry you are going through this-- I earnestly agree you have got to see someone that can help you. There is a thread at the top of the Pandas page here that is called "Helpful threads" and in there is one sub-thread which is a parent list of doctors that have been helpful. You could also go to www.pandasnetwork.org and ask there if they have any suggestions in your area, the website organizer keeps a list as well of helpful doctors. You might also email Beth Maloney via her Saving Sammy website to see who she knows of in or near KY. Antibiotics full strength long term (like one year now) have been key in keeping our d free of tics and OCD. The raging, anger, and upset volatility can definitely be part of Pandas and is not the child's fault if it is Pandas--It can become VERY difficult, and yes, the hyper-no-sleeping issues are common to Pandas. For your sake and your child's you must find someone that can prescribe or at least try to help with antibiotics. A DAN doctor (Defeat Autism Now--alternative doctors, typically MDs) may be helpful. I would call and ask --Hang in there--

Welcome--It sounds like you have certainly something worthwhile to look at in your d's case. I think your question is a good one and worth considering with a doctor willing to treat Pandas-- "After trying several medications, the movements quit suddenly after she was sedated for dental extractions....She was fine for 6 years, but now the movements are back and I'm trying to figure out what helped her. After seeing Beth Maloney discuss Saving Sammy, I looked back into my daughter's records and found a strep connection to when the movements initially began. I also have been reading about post strep antibodies being linked to movement disorders in addition to PANDAS. My daughter was given phrophylactic antibiotics through an IV ...Could this have helped? My Mother-in-law has dystonia which is believed to be an auto-immune issue. If you can make the connection to cessation of the movements with the administration of antibiotics--if it was me, I would ask the doctor if you might try a month of full-strength antibiotics to see if there is an effect--to give her some relief. Where are you located? Do you have a doctor willing to treat her? All the best--

In reading the posts above I am impressed with the courage of parents who have faced seemingly insurmountable odds (a child's neuro-psychiatric illness) and have stepped up to the plate to TRY to help... I appreciate the honesty and courage in seeking answers, as we confront this illness. We have been helped enormously by the parents on this forum--I cannot tell you-- THANK YOU! --for the questions, answers, and "I tried this, it worked" testimonies. We must keep testifying to what has worked for our child's ILLNESS. --this is not something "new", it is something that is "little known"--

Hi Lynn--My point exactly! Perhaps my sarcasm was a little too vague-- I agree! I agree! TMom

hmmm... We may be getting too technical on the forum--the NIMH website seems to indicate the terms are the same process (?) from the website: http://intramural.nimh.nih.gov/pdn/web.htm Q. What about treating PANDAS with plasma exchange or immunoglobulin (IVIG)? A. The results of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin (IVIG) for the treatment of children in the PANDAS subgroup was published in "The Lancet", Vol. 354, October 2, 1999. All of the children participating in the study had clear evidence of a strep. infection as the trigger of their OCD and tics, and all were severely ill at the time of treatment. The study showed that plasma exchange and IVIG were both effective for the treatment of severe, strep. triggered OCD and tics, and that there were persistent benefits of the interventions.

Michael, I am so sorry--Our thoughts and prayers are with you tonight. How serendipitous that Dr. T. can be there this week. I will be hoping he is able to help with great insights--that are effective.

I entirely understand Worried Dad's post--and sentiments:)

I am almost not "ready" to talk about this --(I know some will understand that) ... Our second d started struggling with OCD behaviors late summer-- it quickly escalated. Raging, obsessive explaining to the point of tears, sleep problems. Very difficult to watch. (Cam Kinase 181) We tried 500 mg of Augmentin twice a day for a couple of months--and steroids. Saw distinct improvement, but only about 30% not entirely. She was around a friend who was at the end of a cold a few weeks ago and things exploded behaviorally. Exhausting to start this again with a second child. This week we moved (in desperation) to the Saving Sammy dose. 2000mg of Augmentin XR. Thankfully we have a doctor who was kind enough to try it-- This weekend, my husband and I are looking at each other like, "can this be happening?!?" as this weekend was almost back to normal. Oh my goodness, she was happy and singing again-- like a different child. I don't know if it is the accumulation of a couple of months of antibiotics, steroids finally kicking in, or that we started Augmentin XR but we are looking at a truly amazing change.

Elevators, germs, germs, and more germs:) ticks and of course food with Pandas "anorexic."

Monarchcat--Our d just switched from regular Augmentin to the Augmentin XR 2000 a day. May I ask did you see a difference from the Augmentin to the Augmentin XR? We have been on the regular for a couple of months and hoping the switch and increase in dose will have a good effect. (Azithro. had a little effect, but not dramatic.)

Important information for those using Augmentin as an antibiotic. Apparently, taking four 500 mg tablets of Augmentin is NOT the same as taking two 1000 mg tablets of Augmentin XR (I just want to bump this up as it seems really important to us!) Sam Maloney was on Augmentin XR...The following are previously posted links to more information. I hope this may be helpful to others, it was to me! Thanks forum members-- Here is the link from Alex-- http://www.gsk.com/products/prescription-m...s/augmentin.htm Augmentin XR is the last product listed on the webpage on the this link. Click on it and the PDF file comes up. Here is a further discussion: http://www.latitudes.org/forums/index.php?...art=#entry50453 and http://www.latitudes.org/forums/index.php?showtopic=6511

Hi Monarchcat--You need to check this -- Our pharmacist was very concerned and it appears you must be careful, there is an apparent concern with the amount of clav. in the Augmentin pills. Anyone using this needs to be sure the ratio is OK for their child. Apparently that is why the Augmentin XR (extended release) is given, so the clav. is kept in a safe dosage level !!! Wikipedia, I believe, had the info. on this even--age-based as I remember. It was my understanding that it was NOT safe to just raise the regular dose as the clav. dosage then went TOO high. (This is a different issue then the generic vs. name-brand issue. And yes, our insurance covers the generic only. We are paying $85 a month for the regular Augmentin.) All the best, TMom

Welcome and I am so sorry you have had to find this forum and lurk along with so many of us--as we try to help our kids. No doubt you have had a horrible time. Antibiotics, we think are a relatively benign thing to TRY -- I wholeheartedly agree with the earlier advice of DCMom, that a month of full strength antibiotics (30 days +) is worth a try, now. It was KEY in helping our child...little to lose and possibly so much to gain. Try it and see if there is improvement is what I would say given our experience. If it not successful, then go from there as you see fit would be my advice (we too have been through it--) I too am happy to talk to you on the phone if you want to pm me. All the best, TMom