Kayanne

No, penicillin is the preferred prophylaxis for RF and SC and has been for YEARS....I totally understand wanting to give your children a break from the heavier abs. ...but dido to EAMom's post

Deby, yes memom is right. Prednisone is a corticosteroid and it is not only an effective anti-inflammatory, it is also immune suppressing. It is used a lot for many autoimmune issues because it can to suppress the offending antibodies. It is also commonly prescribed for allergies, asthma, inflammation, rashes...and many other things. I hope this answers your question. ~Karen

Well, they also glossed over the blood work...and no mention of the strep titers as being a test for PANDAS...it is a baby step in the right direction...

It's been a while since I updated, and there are so many new people I guess I should also give a recap: From March to May 2009 my 6yr old daughter tested positive for strep 4 times with rapid tests at her pediatricians. The treatments were 5 days of omnicef, 10 days of amoxicillin, 10 days of augmentin with rifampin added on days 7-10, and finally 10 days of clindamycin. By Mid April, she was a different child. Her symptoms included: inability to make decisions, emotional lability, telling on herself, inability to reason with her, she was refusing to eat, screaming and some raging, short term memory loss, couldn't get off the potty, a coughing tic, she couldn't speak, she startled easily with soft voices, she just shut down. At first, it seemed like a sudden case of severe ADD...but after a few weeks she just stopped everything so that her teacher thought she looked autistic...It was a very scary time for us. On June 5th Dr. Latimer diagnosed her, and treated with a month of prednisone, and 100mg of azith daily. We saw improvements over the month, but at the very end, she woke up and began to speak, and socialize again...it was miraculous...we kept her on 5mg daily of prednisone for 2 more weeks for various reasons. By the time she was done in July, she was 98-99% back. By August, she began to want to write again (previously she would make books of her stories for hours), and by Sept, the her final symptom (reluctance to use the bathroom) was also gone. In September (by my request) Dr. Latimer put Becca on 200mg of pen vk 2X/day as a prophylaxis. She continued to do very well. In Oct, she got the flu. She was prescribed Tamiflu, and we didn't see any increase in PANDAS symptoms. In November, she had a BAD head bang that resulted in a bruised knot on her forehead. Also we also immunized all of my children for H1N1. Again, we didn't see any PANDAS symptoms that were significant. What we were seeing was that she slowed down. It took her longer to do things...I guess like a sub-clinical ADD. For example, if she was taking a while getting ready for school, I would go up and check on her, and she would just be coming down the stairs...everything was cut really close (I am the same way...my mother has said for years that I have 2 speeds, slow and stop). We were watching her closely, but it never escalated. In February 2010, my other 3 children tested positive for strep. Becca was still on pen vk, and tested negative. My other children were put on ceftin and duricef. The ped believed the pen vk was working because she kept testing negative. However, we started to see a ramp up of her PANDAS symptoms. 10 days past her sister's positive strep test, we knew the PANDAS was back. Her symptoms this time were...difficulty deciding what to wear in the morning...really inflexible, and complaints of food getting stuck in her throat (she lost 3 lbs in 2 weeks), more edgy with a lot more attitude toward her siblings. One of the peds in the practice put her on 10 days of omnicef 150mg 2X/day based on symptoms alone. March 1, Dr. Latimer said the infection may just be deeper in the tonsils and that pen vk was not good at reaching that. She prescribed 5 weeks of prednisone, and we continued on the same dose of omnicef (we tried amox for a week--she had a mild rash and she did backslide). Her teachers never reported any problems in school, I kept them informed of what was happening at home. Again, the prednisone was successful for my daughter. Her latest set of PANDAS symptoms never got worse, and by the end she was back....even the "slowing down" that we had seen before is gone. Right now, we only see an occasional flare of bad attitude or screaming at her siblings....but honestly, I think a lot of it is developmental....her friends are getting attitudes too. So right now she is on a little better than full-strength omnicef (150mg 2X/day). I try to remember probiotics, but honestly I forget a lot...and the same for fish oil. She also takes a multi-vitamin, vitamin C, claritin and nasonex. We just got the results of her immuno work-up, and everything looks really good. Her IgE was high (I was expecting that because she has seasonal allergies). I still need a little clarification on the s pneuomoniae serotypes, but looking over it initially, it seems that she has passed all. Our next step is a T&A surgery. Both of my girls are getting the procedure done on June 25th. For us, I consider the pen vk a failure as a prophylaxis. So I am guessing that our step down to prophylaxis will probably be a narrow (if there is one) spectum cephalosporin. However, I have no plans to decrease or change her antibiotics just yet.

It sure sound like PANDAS to me...I like to call this type of behavior "cognitive inflexibility" (someone on this forum used the term and it just fits perfectly). An inability to actually reason with you child is a classic PANDAS symptom...once we recognized that that is what is going on, we didn't expect her to make a decision...I picked the clothes, I dressed her, I put her in the tub....what ever it was that needed to be done. Yes, she would cry and scream the entire time, and even after...but I think it is easier than expecting them to be reasonable when they really can't be. Expecting her to do it all herself (even though a few weeks before she was completely independent) just resulted in her crying in the bottom of the closet...feeling even worse. I can't tell you how many times I just kept repeating to her..."I have to do this for you because right now you are sick and can't do it." And yes, she physically fought me while I was doing these things....I am praying that she never goes through this again when she is older....I don't know how you all are dealing with this with older children...I pray for all of you!!!

When Becca took Clindamycin last year, it was 300mg 3X/day for 10 days. I am really hoping that you don't see an increase in PANDAS symptoms.

I'm praying and sending positive thoughts...good luck!!

I've done it too!

I'm so happy for your family!! I pray that you will continue to see healing!

Encephalopathy is a general term meaning brain inflammation

My daughter also lost a 3-5 lbs each time...so many kids deal with this. So if your liquid pen concentration is 250mg/5ml...then 6ml is 300mg, and 7ml is 350mg. That is a good dose...just above the 250mg treatment dose for kids. Do you know how long the doctor is keeping her on this? Best of Luck!

I'm sorry that you are here, but Welcome. It is the best source of information about PANDAS. Another awesome source is www.pandasnetwork.org I am SO HAPPY to hear that someone from CHOP has helped your daughter. My experience (and some others) has been pretty negative. How long will Dr. Williams keep your daughter on Penicillin? Can you tell us your daughter's weight, and what dose the Dr. prescribed? Being overly sensitive to our Childrens' behavior is normal for a PANDAS parent...However, it is important to keep a close watch...some things (like temper tantrums, inflexibility, and crying) that on their own could be considered normal...are very common PANDAS symptoms. I am so happy that she is responding well to the antibiotics, but if you begin to see a slip back, or a plateau, I would consult with Dr. Williams about a different antibiotic. Penicillin and Amoxicilin don't really have a great track record with PANDAS. Most of the parents on this forum use zithromax or augmentin. You might even consider adding in prednisone after about a month, to help speed her recovery out of this PANDAS episode. Here is an article that explains why pen and amox don't work so well against strep: http://www.entrepreneur.com/tradejournals/.../169459644.html ~Karen

Did her PANDAS symptoms improve after the longer course of antibiotics last year? Was it several different antibiotic? or the same one? I totally hear your frustration about understanding this...I'm a number cruncher, fiction reader, overall crafty person...this stuff is way over my head...but my obsessive tendencies won't let stop trying to learn all I can...

This was taken from Buster's thread of FAQ (pinned at the top): "Q:Should I check for clearing of my non-PANDAS children if treated for strep A: Yes. About 3 weeks after completing treatment for strep you can check for clearance by getting a negative culture. The dosing levels on antibiotics are designed so that about 80% of children with normal immune systems are cleared with a "standard" dosing of antibiotics. Some strains of strep are harder to eradicate and either longer treatments or use of antibiotics like azithromycin and augmentin seem to be effective on these strains." Buster is careful not to post information if it doesn't have a source

I am certainly NOT an expert...but what your describing to me sounds like one infection that NEVER cleared. I'm going by memory, (I'll look for it on the forum-I think Buster has posted this info), but to be fully sure a strep infection is cleared, you need to follow up with a strep test as far out as 21 days past the last dose of antibiotics. Has your daughter ever been prescribed more than a 10 day course of antibiotics, and what type of antibiotic does your doctor normally prescribe? I think you are absolutely correct in the assumption that her body is not processing something correctly...all of our kids have something going on...some more than others. That is why it is critical to treat a strep infection VERY aggressively...not like a normal infection. Longer and stronger antibiotics are needed.

I have read that acne can also be a sign of yeast overgrowth.

Our pediatrician says that if you have a positive --it's positive. He said you either have strep or you don't..."no such thing as a little bit of strep...just like there is no such thing as a little bit of pregnant" I am curious as to why the doctor keeps following up with a culture even when the rapid is positive? I thought the standard of care was to treat a positive rapid as an active infection, and a back-up culture is only needed if the rapid is negative, but a suspected infection is present. My doctor has never sent out a culture if the rapid is positive. Has your doctor considered that maybe the lab is somehow messing things up, and would consider another lab. Is your doctor sending out for a culture and sensitivity...maybe trying to get a hold on the particular strain and what antibiotic is most effective? Certainly based on symptoms, I think you have an actual infection. Did you get at least 10 days of antibiotics? I Think a strep rash is a reaction to toxins that the strep bacteria release...but I'm going by memory. I hope this is helpful! ~Karen

I don't know about a sample that you give to the dr on a tissue, but my childrens' pediatrician has done rapid strep tests on skin infections before, he just tries to get a decent swab of the infected area. My kids have had impetigo three times (before we ever heard of PANDAS)...each time they looked like small pimples, they itched, and they seem to spread quickly. All of those times, the drs just diagnosed by looking.

Thank you so much for the update! I'm really overjoyed for the successes that you have had, and pray that ALL of your children will be 100% soon! Thank you so much for your invaluable contribution to this site, and for the general PANDAS cause

you could try contacting the manufacturer directly to get your questions answered. or you could see if a different pharmacy will be willing to order this particular brand for you I'm thinking...but I personally don't have any experience with this...that if the generic doesn't have a smell or taste, maybe there are less additives--which could be a good thing.

Here is a thread that describes Buster and EAMom's way of charting their daughter: http://www.latitudes.org/forums/index.php?...Charting+System Buster did embed an excel graph in his post...but I didn't see it when I skimmed the thread I haven't used it, but if my daughter ever gets severe again, I will.

My DD did have elevated titers. However, there are many who didn't get a titer rise, and were still in the PANDAS range for CamK. ASO and AntiD-nase strep titers tests are testing for antibodies that are produced against a strep toxin...these antibodies are not the ones that are cross-reacting with the basal ganglia. While the titer tests can be helpful to determine past or present strep infection, they do not indicate if one has PANDAS or not.

Last year, my DD began to be able to talk again very suddenly at the end of her prednisone treatment (with only 3 doses left to do). It was so drastic, that I was sure for the longest time that it was because we had refilled the script with prednisone and began using that...prior we were using prednisolone which was substituted by the pharmacist...now I just think that the cumulative effect of a month's worth of the benefits the steroids--got her to that point in her healing. I am very happy for you!

That is why I think it is important for every one to call and complain on the days that it happens. They can claim ignorance if no one or only a few complain. It may lead to the comments getting cleared.... Not just losing votes of family and friends, but widgets that are installed on blogs and websites are a direct link to our page too...how many of those votes did we lose last month? How many more this month? I don't think any of us really have it in us to dispute our loss...I breifly scanned the fine print, and I think we would be stuck with lawyers fees and such...however, if we show a united front we may just get those comments erased. I am willing to keep track of all complaints called in. If your computer keeps freezing, call 1- 800-768-2784. Then email me about your call at pepsicomplaints@gmail.com. Try to include the name of the person you spoke to, the time and date of the call, the nature of your complaint, and their response. This might give us some inkling as to how serious a problem this is...it may really be nothing...

That is why I think it is important for every one to call and complain on the days that it happens. They can claim ignorance if no one or only a few complain. It may lead to the comments getting cleared.... Not just losing votes of family and friends, but widgets that are installed on blogs and websites are a direct link to our page too...how many of those votes did we lose last month? How many more this month?