Kayanne

She is also more likely to give preventative antibiotics for a long time, not just 1 yr post IVIG. A phone consultation with Dr. K will only get you advice and a diagnosis, then you need to find a doctor to implement his instructions.

Wendy, was this comment addressed to Lynn or PhilaPA? Also, can you refresh my memory of your steroid use with you PANDAS kids? Did you do them at all? and if so was it just for 5 days...or a month? What was the result? inconclusive, improvement or worse? I'm just curious if looking back now, if you have any observations about your steroid use in the context of Lyme?

For us it is a yellowish, crusty film that regular brushing does not take care off. However, the dentist has no problem getting if off. Every once in a while, I brush my daughter's teeth GENTLY with baking soda, and that does remove most of it. The dentist told us to get a sonic toothbrush, and that should handle it...just haven't done it yet. It started while she was taking pen vk, and she is still getting it with omnicef. Be careful with the baking soda....I used it a lot as a kid, and have been told by the dentist that the reason my teeth are yellow is because I brushed to aggressively and took off too much enamel...baking soda can be abrasive.

I believe you CAN discount lyme if your child has a definite history of strep infections causing symptoms, and responds 100% to PANDAS treatments. That is where my family is at, and pursing lyme in my daughter's case is unwarranted. My daughter has been treated with antibiotics and prednisone.

I believe you CAN discount lyme if your child has a definite history of strep infections causing symptoms, and responds 100% to PANDAS treatments. That is where my family is at, and pursing lyme in my daughter's case is unwarranted.

I wanted to say that I am really happy you are seeing some good results, and I'll pray that it sticks! Rebecca is taking 150mg Omnicef 2x/day until next week--when her current bottle is done--(long story but she was exposed to strep so we kept her at full strength for another 10 days) Dr. L just dropped Rebecca down to 150mg of Omnicef once a day. We will be trying this as a prophylaxis...there really are no studies or anything to tell us a proper dose of omnicef for this. The penicillins are not an option now because she had a rash twice on amoxicillin When she started the 150mg omnicef twice a day in Feb, she was only 47lbs due to weight loss -- she kept feeling like the food was getting stuck. She is now 52lbs...I am crossing my fingers that this is a good minimum dose to keep strep away (she also had a T&A in June).

I'm wondering if you have done anything more aggressive to address the recurrent ear infections? Tubes or testing for allergies? I know my daughter seems to have a lot of baby talk, and I do think the PANDAS caused it, and then it became a habit -- I was reminding her a lot to speak normal. I don't know about your body building a resistance to azith...I suppose it is possible. Can you clarify: Is Meg getting breakthrough infections at the end of the monthly high dose AND at the end of the month of low doses or is it just at the end of the month of 100mg every other day?

The only thing I can say about azith resistance is that the rheumy that we saw at Hershey Medical a year ago was suprised that Becca was on 100mg of azith daily as a prophylaxis...he was sure this was a wrong choice for us because he said there are pockets of areas (in particular Pittsburgh) out in Western PA where strep is resistant to azith. I've checked with Rebecca's pediatrician about it, and he confirmed that. Also, in one of Swedo's speeches she mentions the Ohio Valley as having strep strains that are resistant to azith/macrolides (I can't remember which term she used)...it may be in the speech that I sent you the link to. Whenever Dr. L has suggested azith to us, I tell her I don't want to take the risk -- 4 hours west is too close for me, and she always agrees. I really can't answer why she wanted to keep your boys on augmentin. I do believe that she takes things as a case-by-case basis. I know last Sept when I pushed to put Becca on pen vk, she wanted to stay with the azith because it was "working", but I was too concerned about that resistance and I wanted a more benign antibiotic.

Me too! Thanks for the update...I'm glad to hear things are better

I thought I would post this, since some of you use Lamictal http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm222212.htm

Who's Mercola? (And how dare he delete your questions!) Dr. Mercola has his own health website, and he sends out email updates...I still get them in my inbox, but I stopped reading them....it is typical sales tactics...create a health crisis, and then at the end...WOW, I just happen to sell the BEST product out there for this...LOL! Agree with him or not on some of his stances...I don't think he will address PANDAS because he doesn't have the PERFECT product for treating it...in fact he is pretty anti-antibiotics.

Fixit, We were in Dr. L's office at the same time....small world. Was your son sitting on the floor? If that was him, he is really cute--gave me a few good smiles! EAMom, Dr. L suggested azith to us the last 3 times we have spoken to her...but when I tell her my location (4 hours west of Pittsburgh area), she always agrees with my concern about the resistant strains of strep...I also get the impression that with her all cards are on the table, and that she will do whatever it takes.

In our school district, the children are evaluated first. Based on the results of that evaluation---they may or may not offer an IEP. I don't know if you can fight it...you probably can. However, for our daughter, we agreed that she didn't need an IEP, and we moved on to getting an 504 plan. I still haven't submitted my request for specific accommodations yet. For sure, I want the actual "wax and wane" nature of this (at least for her) to be taken into account. I want them to understand that each time it can be a different set of behaviors...and that is essentially why I am having a difficult time getting this done.

My husband and I also found it much easier to explain PANDAS as "RF that effects the brain". I do think doctors will be more accepting of it if the name is somehow linked back to RF and SC --- but the problem with that is the exclusivity to being strep triggered. For us, too, it helped put the pieces together of why this happened to my daughter because of the RF on my side of the family (and anxiety/OCD on my husband's) The first time this was explained to me by my daugter's ped, he didn't use the acronym PANDAS...he just explained about the autoimmunity caused by a strep infection that attacks the brain.---in my google search, I came across the NIMH website, and that was the first time I heard the term "PANDAS"....at a later visit he said to me, "When you consider the behavioral changes that occurs with Sydenham's Chorea, then what really is the difference between that and PANDAS?--none really" So at least in his mind they're related.

Does your son take allergy medication? I wonder if it would help? My PANDAS daughter doesn't seem to react to anything but strep; however, we do treat her mild seasonal allergies with claritin and nasonex from about March thru October.

thank you. do you use the adult or "kidz" version from their website? I give my kids the "kidz" orange cream flavor...it took a little bit for them to get used to it...they still don't like it, but don't give me a hard time. My 9yr, 7yr, and 5yr old get 1/2 tsp -- my 2yr old gets 1/4 tsp (recommended dose) I also take the adult (6 capsules when I remember) -- I can't swallow pills, so I just break them with my teeth. I think it does help my focus and concentration.

Double check that you are correct in regards to which should be high/low. I believe the research shows a high EPA to be more beneficial. I use Omega Brite it is a 7:1 EPA:DHA. You can google it and purchase directly from their website...they also reference some research. I give double the dose listed on the side of the bottle.

Great Job, Kelly!!! Thank you so much!!!!

I don't think that is true...there have been conflicting reports on this forum about what PANDAS docs say about vaccines...even from the same doctor. My guess is that it is more of a case-by-case basis...depending on where your child is in the healing process, and if they have had prior reactions to vaccines. I really think they just don't know, but yes, some kids do get worse with vaccines. For us specifically, I was told that vaccines were okay. I haven't seen any adverse reactions in my 4 children with their vaccines --- but only one has PANDAS.

So Happy!!! I agree that early detection is really key here!! As you know, we've have great success with steroids and antibiotics -- and my daughter's case was caught and treated early! Dr. L said that she doesn't see why this can't be managed with steroids...they do it for asthma. Thanks for sharing the update!

I just wanted to answer your question: "How may kids with PANDAS have Lyme?" I don't think my daughter has lyme...we have not done any lyme testing for the following reasons: 1. Her symptoms were abrupt, over a 2-week period following confirmed strep that took 4 rounds of antibiotics to clear. 2. She has gotten better with the use of month-long prednisone. Better meaning 98%-99% by the end of treatment and shedding the other 2% within 2 months of treatment. Thankfully, we are not dealing with a chronic issue. (although I don't think if PANDAS has been chronic for your children it means lyme too...I just think that if your children aren't responding to PANDAS treatments then Lyme should be looked at)

Here is a previous thread discussing this study: http://www.latitudes.org/forums/index.php?showtopic=5150&st=0&p=36361&fromsearch=1entry36361

Shirley, Can you clarify this? The way I am understanding it is...your doc doesn't want you to use the prednisone yet, and you want to do it anyway? Personally, I think I would listen to the doctor. I think I am probably wrong in this assumption (because of reading other posts by patient's of Dr. but...if prednisone suppresses your immune system, and you are trying to "reboot" the immune system with high dose IVIG....aren't they kind of contra-indicated? parents4eyes, Can you clarify "short one-time burst"? I don't think anyone will dispute the side effects of steroids after about a month of use. However, for us, we had great success (so far twice) with a month-long, tapering course with approx 8 months in between each treatment---I was told there really aren't any long-term effects of pred with this type of use. Can you point me in a direction that will educate me on the Long-term health risks of this type of use? I googled, and couldn't find much in this area... As for 20mg 2x week indefinitely that Shirley's doc is recommending...I would have fears of long term side effects then Thanks!

You have to read the labels...some fish oils are processed in the same plants as shellfish...thus leaving the possibility of a trace amount in the fish oil...but allergen info should be on the label.

Buster, Thank you so much for doing this !!!!