JulieMc

julie -- sorry, i'm speaking from memory and may not have it really right -- you may want to carefully research if you are looking at white willow or willow bark ? -- could have that wrong, don't have notes in front of me -- i believe it has the same active component as asprin so you'd want to be careful if looking to give that to a child. You are correct, white willow bark is where aspirin actually originated, although there is nothing remotely close to in aspirin these days. It does help with inflammation but probably won't be my first choice. Thank you so much!!

Thanks Malke for sharing your experience with it. I think I'm going to try quercetin and see if that helps. I am going to look at some other herbs as well. Peggy, thank you SO much for posting that paper. It's wonderful and I am going to forward it on to our doc.

So, what kinds of effects do you see when you do use Motrin? We already use Omega's daily. I haven't started using the ibuprofen because the doc expressed concern. And honestly, I don't really want to use it regularly myself.

Here is a recent paper that reviews the literature on PANDAS thus far. It explains the role of inflammation in PANDAS, but also offers what is known about PANDAS and I think it can give your pediatrician a better understanding of what you're dealing with. Peggy, there was no link. I am very interested in this so I hope you repost.

Vickie, thank you so much!! This is wonderful information. I don't know why I didn't think of quercetin. I take it myself for inflammation. ~shakes head~ Off to read this information...

So, after reading many of the posts here about giving daily ibuprofen, I spoke/emailed our doc about it. She expressed concern about it affecting my son's kidneys. Then she sent me another e-mail asking why he had inflammation and needed the ibuprofen on a daily basis. I'm just learning about PANDAS so I don't feel I can state anything other than it causes inflammation in the brain/basal ganglia. Can someone give me a better explanation to give to her? I honestly don't like giving it everyday myself. Is there an alternative that anyone has used? I am looking at herbs because they are my favorite but wanted to see if anyone had any suggestions.

Hi Sarah! It's funny how we all end up on the same boards. Sad, too, I guess. But good that we are all working to find solutions for our kids. Thank you for the prayers and PV's. I will definitely take them. Julie

I just talked to a friend of mine last night who said she treated her son with lycine, Virastop, Vit. c, and olive leaf extract. She successfully recovered her son from full-blown autism, PANDAS, sensory issues, etc. He recently lost his diagnosis. So, I trust what she says.

Thank you! Yes, I already give him Milk Thistle so that will help for sure. The doc said that if we do daily antibiotics she wants to check liver function monthly. At least she is open to giving it to him daily.

We are only on day 4 of the Azythromycin (so total of 8 days) and haven't seen any changes yet. I e-mailed the doc about some of these issues and haven't heard back from her yet. Thank you for sharing your experience and I hope your daughter's liver improves quickly.

Did you start with a "loading dose" of zith? The zpack does this, then the subsequent doses maintain levels over time. Your doc is right that zith has a long half life. I'd go for the 250/day(starting w/ a 500 loading dose) until you see symptom improvement and then drop to every other day to maintain. My pediatrician is very vigilant about liver/kidney toxicity too. I do appreciate that though. We check liver/kidney function about every 6 months just to be careful. Never had a problem there, and my daughter gets a lot more ibuprofen than 2x/day. Peggy, no, we didn't start with a loading dose. I think I will ask her about doing it every day until we see symptom improvement like you said and also about checking the functions. You have been so very helpful, thank you so much!!

Hi, we suspect PANDAS in my 6 y.o. son and just started abx a few days ago. He weighs 50lbs and was started on 200mg/5ml every OTHER day. After reading posts here, I sent her an e-mail last night about considering increasing the dosage to 250mg every day. This is the response I got. Dr. Stewart is another doctor in her office and he will do every day. What do you think? "Azythromycin has very long half life. That is why it is used for the"Z-pac" When you finish the five days of a Z-pac you have effective blood levels of anti-biotic for 10 day. To give Azythromycin every-day is possibly toxic to the liver. I prefer the every other day dosing because I know with this anti-biotic that his blood levels are the same on the off day as on the on day. We can increase the dose--to 250 if that is an acceptable compromise. Since Dr. Stewart does the everyday dosing I can do that too but I am not as happy about it. Ibuprophen twice a day is possibly dangerous to the kidneys. I would not mind a short course of this but I would not want it to overlap with the Azythormycin." We live near Austin, TX so if there are any recs for PANDAS specialists here, I would love to hear them. Or maybe I need to switch to Dr. Stewart which I had been considering anyway.

Grace, Yes, he has had one particular activity that he's been doing for quite some time that actually is what got us on the road to getting help. While I don't SEE him do this anymore I do know that he sometimes hides it. Sigh.... I think both of my sons' issues had to do with my getting the flu vaccine while pregnant. I had asthma so that always put me in the high-risk category and meant I was one of the first ones to get the flu shot. I will never get another flu shot gain in my life and neither will my kids as long as I have anything to say about it. Thank you for sharing your experiences with your sons. It's always helpful to know what others have experienced.

Peggy and Malke, great explanations and insight. I've already started using it in my mind which helps me to cope and will start using it with my son as well. Julie

Malke, I just wanted to say thank you for referring me to this forum. Just your two posts and the replies alone have given me volumes of information. We have been on Custom Probiotics for a while now so I'm thankful we don't have to stop and I also give Florastor for Kids for the S. Boulardi strain. Someone posted a reply to my post (Is this PANDAS?) stating that the probiotics my son was taking may make things worse but then I read this and realize that I'm OK. Whew. I am starting the ibuprofen for my son tomorrow. Julie

Sarah, what an insightful response, thank you. I do believe he probably has both autism and PANDAS but I am hopeful if we get the PANDAS treated, maybe it will decrease some of his autism symptoms. Do you have suggestions for PANDAS doctors if the doctor we are currently seeing doesn't work out? We live near Austin, TX. Julie

Phasmid, I will be contacting our doctor tomorrow. She actually told me that she and one other doctor in the practice actually prescribe every other day but that another doctor in the practice (actually the guy who originated this protocol we are on for autism), prescribes it daily. So, I'm going to e-mail her about getting on a daily dosage. She has been really responsive to us so I will be surprised if she won't do it. OK, which probiotic are you referring to? The Custom Probiotics or the S. Boulardi or both? We can't do kefir because my son is intolerant to dairy. Or can you get water kefir in the store? I know you can make it at home. I am located near Austin, TX. Do you have any doctor recommendations? Is there a list anywhere of doctors that effectively treat PANDAS often? Thank you so much!

Peggy, I guess when someone else looks through those same glasses, it can look really different, huh? Thank you for this wonderful insight. Julie

Hi everyone, I am a new member. My son (now 6) was diagnosed with Asperger's just less than a year ago and before that with sensory processing disorder. He had speech delay at age 2 that responded quickly to speech therapy. He has had positive strep infections at least twice in the last year. He recently (3 weeks ago) had his tonsils and adenoids out and tested positive for Strep when they cultured his tonsils during surgery. Although we had treated him for strep after a positive throat culture and it had been treated with antibiotics. He still had it at the time of surgery. They also did ASO test and that was a 91. His DNASE B was 245 (High according to the lab). We have been seeing a neuroimmunologist since last June and he was responding very well to the protocol of antivirals, methyl B-12, and so forth. His meltdowns completely stopped, his echolalia went away almost completely, his social skills improved. Then when he got this last round of strep, his echolalia went through the roof and he is having some stimming, both verbal and physical. He was on 10 days of cefdinir after the surgery but it was mainly to prevent infection after the surgery. And he's never responded to cefdinir anyway. I treid to tell the doctors that but they don't seem to care. After talking to his neuroimmunologist about the increase in his echolalia and such with the strep throat, she recommended starting a one month round of azythromycin to screen for PANDAS. HOWEVER, he is only taking it every other day, 200 mg/5ml. He is getting 5ml per dosage. We are only on the 3rd dosage of it. We are also taking diflucan/fluconazole to help combat yeast. So, I'm reading about PANDAS and while he seems to fit the symptoms for increased hyperactivity, compulsions (echolalia), and sensory issues, his anxiety has not drastically increased. He has always had a certain level of anxiety but it's not obsessive and hasn't increased really. His anxiety comes around anything that changes or is new in his schedule or environment. His aggression stopped with the antivirals and methyl B-12 and hasn't returned. Although I will say that he has been more defiant which is really unlike him. So, I guess my question is, does this sound like PANDAS and if so, should I ask for an increase in the antibiotics? It doesn't seem like enough according to what I've been reading. We've been on Custom Probiotics for awhile and I give him a strain of S. Boulardes as well. This is all so confusing and overwhelming. Sigh...I thought I had his stuff under control because I have studied Asperger's so well. Now, I'm wondering, does he really have Asperger's or is it PANDAS? Julie