swim

Thank you for the replies - makes me feel not so alone in all this ... Have not tested titers lately. Our ped doesn't really use the titers to diagnose - goes more by the symptoms. Going to stay away from flagyl for now as an option if clinda doesn't work. Before we knew about PANDAS, we treated DS for systemic candida - that was about 6 years ago and it took about 2 years to get his gut back. I'm hoping the probiotics we're using are protecting him from going through that again, but it certainly is something we need to face head on and consider (wish I could ignore it). May try the grapefruit seed extract, but I do realize things could be awful if there is a candida problem and the gfs causes too much dyeoff. Thank you all again ... you are my support group

Sorry to post this topic again, but I am just about as scared as I have been in the last 7 years and don't know what to do. Looking for any feedback that might be out there. Our ds12 has been in a bad backslide for about 3 weeks. We are seeing increased tics and OCD for no apparent reason (no known illness currently). We switched him to clindamycin about 24 hours ago because we had a really good 4 months last year after he had clinda prior to T&A. Thought clinda might help. Well, after 24 hours his tics are the worst they have been in about 6 or 7 years. He is in constant motion. I am wondering if we could be seeing a herxing reaction maybe from extreme dyeoff of something - maybe we are reaching something intracellular since clinda is supposed to be stronger than the other abx. Logic tells me there is no way a stronger abx (we had done keflex and amox) could be letting something make him worse. Could this be like reaction to IVIG where you get worse before getting better? So desparate right now. Doc not available until later tonight. When I left message for the doc, the nurse might as well have just kicked me in the gut because she said she has never seen a reaction like this to clinda. Of course I know he probably doesn't even know what PANDAS is, but it hurts to hear neg feedback when I have no idea what is going on. Argh ..........

We started clindamycin yesterday because ds12 has been in a flare up and keflex and amoxicillin aren't helping. We had a great period last yr after doing clindamycin before T&A, so we're trying it again. Well, after 3 doses we are seeing huge increase in tics. Could this be herxing? So worried ....

It's been a bad few weeks and there is no improvement. Keflex has worked for almost a year and a half and amox worked for a month. We need to try something else. I know every child is different. Just looking for opinions on augmentin or zithromax. Any thoughts on which to try next? Thanks ...

I've seen posts on this forum in the past regarding wireless devices and how they may or may not effect our PANDAS kids. Can't seem to find the threads when I do a search. I'm wondering if anyone has any opinions about wireless devices and how they may or may not affect our PANDAS kids. This has been a tough week for DS12 - big increase in PANDAS symptoms. For the past few days, we had him stop using the wireless headset when he played xbox just to see if there was any change in his symptoms. He could still have his time on xbox, just no wireless headset. Things seemed to improve. Last night, we tried 30 minutes with the wireless headset and it seemed tics were worse when he was done. Later in the evening, tics seemed to calm down. Is it coincidence ... am I crazy ... has anyone else noticed any effects of wireless devices ...

My heart goes out to you ... I am angry that any families have to go through this PANDAS journey with such little support from the outside world. We have also had an especially tough week and I also wondered when/if I would get my son back ... such a difficult thought to deal with mentally. For the first time, I almost could not get out of bed to go to work because I was so afraid to see how my son would be in the morning. That's never happened to me in our now 8 year journey. I think I had been holding things in too much. We all need to release, yell, cry, scream ... it helps. We've started epsom salt baths again this week and they have helped - I increased the amount of salt and have him stay in there for 15 minutes. Wondering about the bubble bath - are there any dyes in it? We've switched to Mr Bubble for sensitive skin - no dyes or perfumes but lots of bubbles.

Have to say it was good to read your vent because I am right there with you and it made me feel "normal" for a moment. Can't talk about PANDAS with friends because they look at me like I am crazy - just go to a doc and get things fixed - well, it isn't that easy. Same with family - 8 years ago we were told by grandparents that we did not discipline well enough. Glad we knew our child enough to know that he went to bed one night and woke up a different person the next day and he needed help instead of harder discipline. For every family facing the PANDAS struggle, you are all amazing ... no one understands unless they are living it themseleves ... It is nice to know there is a place where people do understand ... Thank you also for your feedback on the OLE and Oil of Oregano ... we go back and forth on what supplements to try and which ones had what affect - I appreaciate you sharing your experience.

Thanks for your reply - don't worry about scaring me because I am already scared. Feedback from everyone on this forum helps to figure our way through this maze and denial is not a good thing. I have learned to just face it smack on no matter how bad it hurts. We have been on abx (keflex) since June 2009. We tried amox in Sept when we had a horrible flare in tics. It seemed to help for about a month, but then we went back to keflex as amox effectiveness seemed to diminish. With the change to vocal and no improvement on keflex, we changed to amox again on Sunday night. We saw some improvement last night (after an epsom salt bath too), but seemed to go back again this morning. What antibiotic did you use with the vocal tics? Did you use any other treatments besides antibiotics?

Our DS12 has been dealing with PANDAS symptoms for 7 to 8 years and the tics have always been movement related. We are currently in a flare up of symptoms and his tics have changed from movement related to vocal for the first time ever. Does this mean anything to anyone? It is so hard to stay positive and my unmedically trained mind is afraid that the change to vocal tics means a different part of his basal ganglia is being affected so maybe we are losing our battle. Thoughts?

From reading this forum and dealing with PANDAS, it seems when there is one PANDAS child in the house there is a better chance that other kids will be PANDAS too. It took 6 years for our youngest to show PANDAS symptoms after his older brother did, but it happened and I can still remember my disbelief. I felt like someone kicked me in the gut and knocked the wind out of me. I cried in the doc office saying I never thought I would be there with child #2 talking about PANDAS. Our first symptoms have been tics, so I can't answer on the panic attacks. If there is a bright side, it is that you have an advantage now. You know what needs to be done and hopefully being able to act faster will lessen the effect of PANDAS. Good luck ...

Absolutely! Watching our son's handwriting is one of the tools I use to monitor PNADAS flare ups. I always know when somehting is coming because his handwriting goes downhill. When symptoms are under control, handwriting is great. When we are in a bad place with symptoms, handwriting is a mess. I think of it as his body's way of telling me that something is coming when the handwriting gets messy.

fr88 - THANK YOU SO MUCH for posting your comments and answering all the questions. Our strategy is to take all the info we can get our hands on and see what works for our child. I really appreciate all of your information. As a parent of a PANDAS child, it is interesting to hear from someone with PANDAS that is now an adult and doing so well. It gives hope ... !

Hello, How is EPV typically tested? Should we ask for a "Mono test"? Is this the same as EBV antibodies test? My dd7 has PANDAS symptoms, while waiting for her throat culture for strep and ASO titers, want to rule out PITAND. Our ped did a blood draw to test for strep and mono at the same time. You can ask your doc to do a blood test to check for strep and mono. Even if mono comes back neg now, then can tell by antibodies in the blood if there was a previous EBV infection.

My unmedically trained logic would agree that abx would not help in the case of PITAND brought on by virus, but I saw it with my own eyes when our younger son first showed signs of PANDAS symptoms. One night, his eyes started rolling up in his head - the same tic that his older brother started with 7 years earlier. I thought there is no way this can be happening again. We went to our Ped and she tested for strep and EBV. EBV was pos and step neg. We did abx for 30 days and within 4 days he was symptom free. Logic said abx would not have any affect since he had EBV, but it ended the symptoms.

Sorry you find yourself having to seek info on PANDAS, but hopefully this forum will help ... Your background is much like ours - ear infections and rarely ever sick. If our kids do get sick, symptoms are very mild and they get better very quickly. I saw you metioned that the throat cultures seemed to generally be neg for strep. Keep in mind that other viruses can be a trigger. Our older son had EBV first, which triggered extreme separation anxiety at the age of 4 when he had been at the same preschool for 4 years and had no previous issues. This is when emotional swings also started. A few months later, he got strep and then we saw tics and forgetting how to read. That was all 8 years ago. Last year, our other son showed sudden PANDAS symptoms, but when our ped tested him he was positive for EBV and not strep. So, don't forget the PITAND side of things if strep tests turn out neg. Testing neg for strep does not mean you are on the wrong path ... For us, antibiotics have been our course of treatment so far. I have not heard of abx making symptoms worse, but know that it can take time for antibiotics to help so you just may need more days or a higher dose. We use keflex with one brief period of time on amox. Seems different abx work better for some kids so you may need to do some trial and error. Good luck ... kudos to you for getting out there and seeking knowledge to help your child!

I agree with the other responses - seems your child is clearly exhibiting PANDAS symptoms. The faster you can get on antibiotics the better. It took about 6 years to properly diagnose our older son because PANDAS was such a new idea and we continue to struggle with PANDAS symptoms and flare ups today (8 years in the battle now - he is 12 years old). When our other son showed PANDAS symptoms last year, we got him on antibiotics within 4 days and symptoms were under control in 3 days. Since then, he has had one more flare of symptoms and we got him on antibiotics the same day - symptoms gone again in 2 days. Wish we knew all this with our oldest son. One other item to note, the trigger for our boys seems to have been EBV and not necessarily strep, so don't rule out the treatment if strep turns out neg. Consider PITAND and other viruses as a potential trigger. Good luck!

Hi Nancy ~ Thanks for your reply. Your conclusion was the same as mine - the only mention I found of quercetin affecting antibiotics relates to classes of antibiotics that we are not using for our kids. I really appreciate your feedback! Keri (aka swim)

Can you share a link with this research? We've been using quercitin for some time now, along with antibiotics (in our case, Augmentin XR), and don't believe that there's any reduction in efficacy. Then again, we've been using them concurrently for so long, if it is just a matter, perhaps, of reducing the efficacy rather than voiding it entirely, I don't know that we'd know the difference! Now I'm curious. I don't have anything very scientific - just a mention about it on wikipedia and there was one other site that I can't find again right now. http://en.wikipedia.org/wiki/Quercetin I have a few supplement books and they only say good things with no mention about interfering with antibiotics. After everything else I read, we went ahead and decided to give quercetin a try starting tonight. The first capsule is in, so here we go ... fingers crossed as usual with all this stuff ...

I have seen a lot of you are using quercetin as a natural anti-inflamatory. We are in the middle of a PANDAS flare up and I was thinking of trying this to help reduce the tics, but then I saw some info that researchers think it may interfere with antibiotics. Maybe they are not referring to the antibiotics we are using for PANDAS. We are currently using keflex. Has anyone heard about quercetin reducing the effectiveness of antibiotics or has anyone seen a negative result after trying quercetin?

We've been dealing with PANDAS symptoms for about 8 years now and still struggle to identify the trigger for hyperactivity. In some way, we do feel it is related to food sensitivities. When we sense that our son is edgy, we do gluten and dairy free for a period of time to let his body settle down. Then we add things back slowly just for a feeling of normalcy. Over the holidays, I would say chocolate also increased hyperactivity like we have never seen it do before. You may want to consider food sensitivities as many people on this site have done.

For our son, recurring epidoses are always noted by an increase in tics but it seems all kids are different. Our son's symptoms have always been (for the past 7 years) more tic related with a lesser level of OCD issues. I think you will find others on this forum that have mostly OCD issues and few tic problems.

I've been in denial that it could be yeast, but maybe it is and I just needed someone else to tell me. We spent 2 years getting yeast under control in the past and I am afraid to start down that road again. I am thinking that would explain why I think tics are worse after probiotics - probably a dye off reaction. Thoughts?

We share your frustration ... we just can't seem to get the tics to go away either. We have not done IVIG because our doc considers his symptoms mild and not enough to warrant IVIG. We have been managing with anitbiotics only - keflex for a year and a half with some amox mixed in lately because we are seeing more tics. He is also very energetic for the last 3 or 4 weeks - like someone that has had a lot of coffee. Tics are always worse when watching TV - do you have the same reaction? We have tried all of our old standbys to bring the tics under control (gluten/dairy free diet, increase antibiotic dose, drink more water, add magnesium), but they are not working this time around. Like you, I am looking for any new ideas. Feeling helpless again ... Last night, our son asked why no one could help him if doctors can help people with cancer ...

The test done by our doc shows US Bio Tek Laboratories did the testing. I did a test without a doc for myself and our younger son and that is when we ordered the Metametrix test from direct labs. I think direct labs had us go a Lab Corp facility for the blood draw. Hope that helps!

For foods, you need to consider IgG reactions and IgE reactions. If I remember correctly, the IgE reactions are the severe reactions you see immediately (ie. a peanut allergy). The IgG reactions are milder and can come about within hours or up to 3 or 4 days later - that is why it is harder to identify the trigger for IgG reactions. When our son was first tested for allergies via the RAST test about 8 years ago, he tested negative for all allergies. This didn't make sense to me and for years after that I was still convinced that food was affecting him. About 2 years ago, we went to a doc that treats irritable bowel syndrome and food allergies. I told him I wanted my son's IgG reactions tested to as many common foods as possible - he knew exactly what I wanted done. It was a blood test that checked IgG and IgE reactions to about 90 foods and I would say the results seemed to confirm about 99% of our suspicions. We removed foods (wheat, dairy, gluten) based on the report and he was a much improved child in 1 to 2 weeks. We kept him off the foods for about 10 months and then started adding back in slowly. We still watch foods and remove for chuncks of time when he is not doing well. For our son, the IgG testing helped and seemed pretty accurate. We did not test food dyes (the doc could have ordered additional tests for dyes, spices, etc, but we had enough to get started with), but we are sure red 40 has a bad affect on our son so he has learned to check labels and avoid it. If you can't find a doc to do the test, you can order yourself from www.directlabs.com. They will tell you where you can have the blood drawn in your area. Probaly select the Food Antibodies IgG & IgE from Metametrix test. We ordered from here for our yournger son just to see the results. He showed IgG dairy issues, which we suspected since he was a toddler.