Kayanne

The strep rash is believed to be a reaction to the toxins that the strep bacteria give off--so swabbing a scalatina rash will will come up negative. Drs. can take a swab of any part of the body and use the rapid strep and/or send out for culture. I've had a few cases of impetigo in my household, and that looks pimply, and seems to spread quickly...pretty contagious too. I was told it was probably strep, but at that time the dr only prescribed antibiotics, and didn't do a swab. Two other times, my kid's ped squeezed some pus from infections (finger and knee) from my boys and tested it with the rapid...one was positive, one was negative. The negative one he sent out for culture to be sure it wasn't MERSA. Basically, he said with skin infections it is either strep or staph. Although strep infections on the skin don't only look pimply...google it and you'll see all kinds of pictures....same thing about the strep rash....it takes all kinds of forms....spider webby, hives, sandpaper...

Totally agree...and you put it so much better than I ever could...I've been trying to get this sentiment out to friends and family...and it just seems to go in circles....

Strep in the brain? I, too, don't know enough to even speculate on that (I try not to call myself stupid...but I feel that way often when it comes to PANDAS)... However, I wanted to point out that in the Columbia mouse study (released August 2009), they only injected strep antibodies into the mouse, and the result was PANDAS behaviors.---at least that is how I understand it...correct me if I'm wrong please!

The website below says that for adults and teens over 13 maximum dosage is 600mg every 24 hours or 300 mg twice a day. For kids 6mos to 12 yrs dosing should be based on weight 7mg per kg twice a day or double every 24 hours 46lbs = 20.865 kg (I use an online converter) 20.865 x 7mg = 146mg of omnicef twice a day. I have no idea if when deciding what dose to give with medication, doctors would round up or down, but based on this it seems 150mg twice a day or 300mg once a day is the correct dose. http://www.rxlist.com/omnicef-drug.htm a call into your doctor or pharmacist may be in order...this might not be wrong, your doc could just be very aggressive. Last year, my daughter was prescribed the high end dose for adults of clindamycin (she was about 42lbs) because she had a strep infection that didn't respond to four other antibiotics. This past Feb, my daughter was about 48lbs and one of her peds prescribed 150mg of omnicef 2x/day for 10 days. She said for strep, she likes to break the dose up to twice a day. Also she said the normal dose should have been 125mg 2x/day...so in our case the ped rounded up. She is still taking this.

bumping it up again...it was on the 4th page...and I almost forgot again (and I did forget a few days ago...oops!) Oh and hey everyone...don't forget what a great tool the facebook voting app is.

don't hesitate to pm with any questions...

prednisone or prednisolone I don't have experience with Dr. K's 5 day protocol...so I don't know the doses. My daughter took pred for a month--twice. The first time she was approx 42lbs and her highest dose (1st week) was 20mg broken into (2) 10mg in the am & pm. The second time she was about 50lbs and her highest dose (1st week) was 30mg broken into (2) 15mg in the am & pm. The tapering was a little different each time...but generally after each of the next three weeks the dose gets cut in half and/or every other day the last week or so... I hope this is helpful.

It may be too late to change your plans, but the OCD conference in DC this weekend is having PANDAS speakers: http://www.latitudes.org/forums/index.php?...=ocd+conference

Sending prayers and positive thoughts...good luck Great job getting your son to this point! Best of Luck with the new job too!

Yes, we also had 98% improvement the first time (Spring 2009)...and within 2 mos of finishing the pred that time she was 100% and that was sustained until my other kids had positive strep in Feb of this yr.

One of my daughter's pediatrician prescribed 10 days of Omnicef. She said that for strep throat, she likes to break it up into 2 doses...I think it is optional--I went with it because it makes sense to me to keep the blood levels more stable. We had good results with that protocol...her neurologist kept it at that. My daughter has been on 150mg 2x/day since the end of Feb. I believe it was key in helping with this most recent PANDAS episode. I don't know if once a day is just as good...we stuck with what worked. Good luck!

I can't answer this, although I think the answer is yes - I think some here have posted about using it during and after. But in case you are not aware (I'm sure you are!) you can't "quit" a 30 day prednisone program, you have to taper off, as the body stops making the right levels after about day 5. After that, you have to allow the body to build back up while you taper off the medication. the right levels of what.....? does the taper have a better chanc of making the results stick?......or, you may not get a rebound effect, as the tapering helps modulate down....? when we did burst...we didn't have our gloriuos 4 days till 21 days post burst.... if you do a taper, (we started to see results day 9 this time....we are currently on day 12) can things continue to get better.? i keep hearing of people tapering down and problems increasing... anyone have continuing progress..again ours didn't kick in this time till a couple days after we dropped dosage PS the first week vocals ramped up but now we are better than when we started!!!!!(yeast?) The adrenal gland secretes different steroid hormones...and if you are giving prednisone (a corticosteriods) for more than 5 days, the adrenal gland begins to rely on it...I've read that it shuts down, and you need to taper down the dose so that the adrenal gland begins to increase production again...you can't just stop taking it, you may have severe withdrawl symptoms from lack of the proper hormone production. Okay, I personally feel that if the underlying infection is truly addressed, then a month long course of prednisone has a good chance of being a lasting treatment (until the next infection). I think for some people, only doing 5 days could possibly be stopping a treatment before it has a real chance to make a difference...but that is up to a doctor and parent to decide. Prednisone is not without risks and it always comes down to risks vs. benefits to a family. I want to say that the first week on pred is sometimes more difficult...this time around, my daughter was in her room banging on the walls and screaming..."I don't feel like myself!" But by the month's end...no PANDAS at all. We have had lasting results since mid-April.

Dr. T = Dr. Trifiletti, Pediatric Neurologist in private practice in Northern NJ Dr. B = Dr. Bouboulis, Allergist and Immunologist in Darien, CT Dr. K = Dr. Kovacevic. A pediatrician and professor of pediatrics at Loyola. He is in Chicago, IL Dr. L = Dr. Latimer. She is a pediatric neurologist in Bethesda MD These doctors are considered to be the top PANDAS docs (on this forum) Here is a thread which lists doctors who have been helpful: http://www.latitudes.org/forums/index.php?showtopic=5023

Welcome to the forum...I'm sorry that you had to join at all, but you have found a great support network and a wealth of information. Every PANDAS parent I have spoken to has been very kind and generous with their time and advice...don't hesitate to contact anyone by pm. If you haven't already, check out www.pandasnetwork.org and register with the the site. In our experience, it was 10 days of clindamycin (300mg 3/X day) that finally cleared my daughter's strep. She was 6 yrs and about 43lbs at the time. When her neurologist started to treat her for PANDAS, she was put on 100mg of azithromycin daily as a prophylaxis. It is right in line with taking 500mg every 5 days...or something similar. She took azith for just over 3 months, when I asked to have her put on pen vk instead. There are areas in the US where there are resistant strains of strep to azithromycin--Western Pennsylvania and Ohio. In vitro (a dish), strep is not showing any reisistance to the penicillins (pen vk, amoxicillin, and augumentin). However, in vivo (the body) researchers have shown that if strep gets into the cells, pen and amox are can't fight it. Here is article that is cited a lot on this forum: http://www.entrepreneur.com/tradejournals/.../169459644.html I think the antibiotics that most parents use (and have seen success with) are azithromycin and augmentin. I think that many parents have reported that if untreated, subsequent episodes do get more severe. But, I think the flip side of this is (at least for us so far) is that with treatment, each episode gets less severe. Probably because the children are already on antibiotics, so a strep infection doesn't get too bad. Also, there is recognizion of PANDAS symptoms...so treatment starts earlier. My daughter's second bout with PANDAS was a result of her siblings all having strep (she was on pen vk and kept testing negative). Starting a month-long course of prednisone within a week of seeing the behaviors resurface, stopped it in it's tracks. Her teacher didn't report any problems in school...the behaviors seemed limited to home. There are a lot of supplements that people give their kids. I give fish oil (for anti-inflammation), a multi-vitamin/mineral, extra vitamin c and probiotics. I believe that as far as strep is concerned, antibiotic prophylaxis is very important---so my daughter will be taking them until adulthood.

I just want to add that one or two doses before/after IVIG to help with headaches are probably benign...but to have IVIG right after or during a month long course of prednisone that is immuno-suppressive may be working against the IVIG...isn't IVIG supposed to be "rebooting" the immune system? So I think you would want to wait for the prednisone to no longer be working in the body so it doesn't hinder whatever is happening to the immune system because of the IVIG treatment. I'm not a doctor, and I have never asked a doctor about this...so I could be completely wrong!

I think our daughter's recovery was just as dramatic...at the end of the month of pred, she just snapped out of it, and began to talk again...I was so sure it had something to do with our refill (we ran out of prednisolone and started prednisone). It was truly miraculous for us! We were seeing baby steps all along that month...but she went from about 70% improved to 98% improved within hours.

I answered my own question. This is from google health: "Trichotillomania is hair loss caused by compulsive pulling or twisting of the hair until it breaks off." It's amazing how little details of childhood add pieces to the puzzle...

Melanie, I'm so sorry you are going through this right now. I just wanted to give my input here. I know you feel good about Dr. B and that he agreed to do the high dose IVIG, and I think this is a good direction to try. But the reality right now is that Danny's due for his next infusion, and his behaviors are getting worse. Personally, I think you should just stay the course with Dr. J FOR NOW....while simultaneously working with Dr. B. Dr. B can always reschedule an IVIG for a later date if it is too soon after one of his low dose infusions. Simply put, continue to use Dr. J's treatment protocol, and let Dr. B decide how best to fit the high dose IVIG in... I'm also sure that a call to Dr. B asking what to do next could give you some real insight...I've heard he is very responsive. I hope I haven't caused you more stress!! ~Karen

Is Trichotillomania specifically for hair pulling? Or could twisting your hair on your finger until you have a bald spot also be considered Trichotillomania?

The million dollar question. I don't think that they have typed any strains of strep thought to be responsible for PANDAS yet...but it is well known that only certain strains cause RF and other strains attack the kidneys... Please, someone smarter and more informed than me...chime in! But I often wonder if you were to compare symptoms to same areas, would you be looking at similar presentation...if I had to say focally or diffuse inflammation for my daughter...then I would say her symptoms would probably seem more diffuse too...and we are only and hour and 1/2 from each other. I wouldn't say she was drunk-like...but she just stopped functioning, and didn't seem aware.

I'm crossing my fingers, that this treatment really works...and lasts!

Daughter 6ys...blood was drawn when she was not showing any signs of PANDAS (approx 6 mos. past onset of first episode) Cam KII - 112 Anti-Lysoganglisode 160 (R: 80-320) Anti-Tubulin 1000 (R: 250-1000) Anti-Dopamine 1 1000 (R: 500-2000) Anti-Dopamine 2 2000 (R: 2000-16000) All within range--although Tubulin and Dopamine 2 are at upper and lower limits.

has he ever had prednisone without having croup? is it possible that the "steroid boy" you were seeing was more PANDAS behaviors caused by the virus?--upper respiratory infections can bring out PANDAS behaviors. or perhaps it was mycoplasma?, and I would think giving the pred without addressing an underlying infection is not going to do much. Typically, prednisone has an opposite effect on a PANDAS child--calming them down. For my daughter, there was some raging and screaming for the first week at the high dose, but we could still see improvements--it was at the step down that the "ragey" behavior subsided....by the end of the month the improvements were incredible and LASTING.

Sorry, you have to go through this...sending prayers your way!

It seems, with PANDAS, during the healing other "older" symptoms pop up for a little while before disappearing. When My daughter was healing on prednisone, you could have hit a rewind button the way her symptoms healed. I know of another family whose son had symptoms that they had not seen in a long time resurface while on the prednisone. You said you are on day 8, how long will he be on the prednisone?