Stephanie2

All those symptoms you just mentioned are pretty much what my 5 yo does with pandas, but I will add in irritability and depression. I have to say that the sillyness and crashing into the couches could also be yeast. What abx/dose and probiotics are they on? Interesting that you all mention that your kids get hyper. My son has been hyper off the charts lately and I thought that maybe it was b/c I hav ebeen cheating on his gluten free diet. Maybe the last 2 weeks of hyperactivity have been a slow ramping up of symptoms which lead to this past saturday nights abrupt onset of symptoms with sore throat and nausea! Hi! My kids are definitely type A personality all the way...always have been. This hyperactivity and wild eyed behavior that happens to be in conjunction with strep though is different. It is like their bodies have to be in constant motion and they even talk louder. It is truly like they act like I feel after having too much coffee in the morning! Last year when I believe my DS7 turned into a different little boy, he would climb the walls...almost literally. My DS5 who has always been very active is now right there with his brother and he happens to be 2 weeks post strep infection. They are both seriously possessed or something! The overly loud, silly, goofy, repetitive, bouncing off the couches and ceiling, tantrums, anger, anxiety and frustration is off the charts right now! We will be seeing a Neuro in Houston (Dr. Rotenberg a week from tomorrow) and Dr. Mazade has us scheduled for June 25th.

Yes we use d-lactate free. Hard to say how long it lasts. I give each boy 400 bill per day so not very long (a month or so for the large bottle). 400 bill is 2 adult scoops per day. I am glad you told me that high dose buffered vit c is hard on inflamed guts b/c my 2 yo has a lot of gut inflammation and I have recently increased his vit c to counteract the constipation with spironolactone. I will keep that in mind in case it causes problems. What would I see as a problem? Would his belly be distended? Would his poop hurt or irritate his rear end? Tummy ache? Stephanie

Justine, I forgot to mention how I give the Oil of Oregano. It actually stings a little as it is going down, kind of the way listerine stings the mouth, but you know it is killing germs... Anyway, both of my kids (5 and 2) got used to it and don't complain anymore. I put about a teaspoon of water into a little medicine cup and I put about a 1/4 scoop of stevia (you can also get this at Whole Foods, it's a natural sweetener). Then I put a couple drops of Oil of Oregano into the water. I mix it up with a syringe and then syringe it into their mouths. It takes a couple weeks to work on small warts, don't know about large ones. If they are large then you may want to apply topically as well. Good luck! BTW, the warts do come back after a while (but not as bad if you get on it quickly) so then you have to do the Oil again for few weeks or so. It is really good if you are in a pinch when the kids get bad pandas symptoms and you are waiting to contact the doc to up the abx. I have really knocked out pandas symptoms with it before. I could probably use it exclusively but I tend to rely on the abx, don't know why. Yes, I believe so..., not only does it really really sting, you can see the stuff shooting out of the machine, flying through air at you ... it fits much better in one of those violent movies, not as much in real life! Hopefully that will do the trick!

Our DAN doc gave us Vital Nutrients Ultra Pure Fish Oil. My 5 yo takes 1/2 tsp per day, my 2yo takes 1/2 tsp twice a day (he had some issues with low fatty acids or something so he has to take more). You can get it online. It is expensive, but if you give 1/2 tsp. it will last a long time. It is lemon flavor, neither of my kids complains about it... Stephanie

Yes, it is $30 for a small bottle but should last a long time. I would try 2 drops twice a day. Make sure you give it away from probiotics, it works like an antibiotic. Kills bacteria, viruses and yeast. You may even see a little yeast die-off if he has any. Stephanie

Sadie, who are you calling today? Are you requesting abx? BTW, do kids get hyper with strep? I'm just wondering b/c my 5 yo has been bouncing of fthe walls lately, too and on Sat. night he developed a sore throat so i am wondering if all that hyperactivity was related to strep or something else. It's like a sensory seeking think where he crashes into people and furniture... Stephanie

Sadie, who are you calling today? Are you requesting abx? BTW, do kids get hyper with strep? I'm just wondering b/c my 5 yo has been bouncing of fthe walls lately, too and on Sat. night he developed a sore throat so i am wondering if all that hyperactivity was related to strep or something else. It's like a sensory seeking think where he crashes into people and furniture... Stephanie

Amber, Scott had suggested VSL3 for my 5yo but I just couldn't do it with the dairy and strep in it. He didn't think it would bother him, but I went with Custom Probiotics, have you tried it? You can get really high, it is in powder form. No dairy, no strep. BTW, are you you using Buffered Vit. C? Stephanie

We had a wart problemfor a long time and I got rid of them with Oil of Oregano. You have to get a good brand, like Oreganol. I gave it orally, but you can also apply topically, too. Oil of Oregano kills strep, too. Stephanie

That's interesting b/c our DAN told me that he doesnt' think that the strep in probiotics affects pandas. He may be right but I can't help but listen to the moms on the forums on this one. Also, I gave my 5 yo one from kirkman with strep in it a year ago and he did TERRIBLY and started a new tic! After 10 days I ditched it and decided no more strep! Although, I did just give him soy yogurt with strep in it Stephanie

Wow, you raise a lot of questions, none of which I could possibly begin to answer. Like I've said before, it would be great to get the docs, researchers, parents together for some type of round table discussion, and with all of your questions, I would think a true "strep" specialist would also help put the pieces of the puzzle together. I don't think there is any one doctor or researcher who has all those answers and so I think we have to rely on each other's experiences at this point for some aspects of this illness. Going back to the autism parents (while I consider myself a parent of a recovered ASD child, and one who was borderline), the DAN protocol was basically built on the experiences of the parents and the doctors who were also autism parents. It has grown from there. If we can get a bunch of docs to listen to us pandas parents (which many of them are), I think they could learn alot... Something else I just thought of is that maybe the amounts of strep in the yogurt is simply not enought to raise a reaction, but maybe the amount of strep in probiotics could cause a reaction. Stephanie

No that would not be strep...

Faith, yes I feel the tics were reduced by spiro, especially the vocals. No this is not the first time the tics have reduced, they seem to come and go, but are always there in exacerbation. The tics that ramped up this time are a constant strange tongue movement that we haven't seen before and a spitting sound (like a loud annoying raspberry). There is another woman on the forum who is seeing reduced tics with spiro (vocals and motor) but she is not going to post about it until a couple weeks goes by just to be sure. She might be a better indicator for you b/c we have much more than tics going on, and quite honestly nothing has ever been able to erase our tics (Ibuprofen, steroids, spiro, IVIG) but everything else does go away (OCD, meltdowns, depression, irritability). But like I said, there was a definitely decrease in tics. Stephanie

He has a fever today (very slight - 99 degrees taken on forehead) and felt like he was going to vomit for a while. He only ever vomits with/before strep! So, that was enough for me I'm going to give him 5 days of 250 mg zithromax. His pandas symptoms are much better today but his tics are still increased (strange tongue movements - this is a new one. some vocals, like a spitting sound that we have had before). I think I caught this VERY early (even before he said his throat hurt) so maybe we will ride this one out ok. If this is indeed strep, then I believe that the spiro helped us a little (but hard to say b/c I don't think I have ever increased abx this fast before). Stephanie

Well, after 2.5 really good weeks on spironolactone my son seemed to have a rough day today. He kept trying to control his friend during a playdate (OCD), his tics were really bad, he was moody and had a meltdown when his friend left and when it was time to go to bed. I got the feeling he was trying to fight it (meaning he was trying to keep it together and be "good"). While I was trying to tuck him in to bed I heard the words I dread, "mommy, I don't feel good" "oh, what hurts honey?"...."my throat"! Not to mention he was full of fear at bedtime. Oh, and at one point I gave him ibuprofen and he snapped out of it for a few hours. I guess the writing is on the wall. He got his usual weekly 250mg of azith tonight (he was due for it tomorrow, but I figured I better get on top of it). I guess I should give him a couple more doses this weekend until I can call his doctor on Monday??? Ugh! If that's not enough my 2 yo just went off his abx for impetigo a couple days ago and I'm waiting for the other shoe to drop with him (he also has pandas and seems to react with this impetigo). This was our 4th abx for impetigo and it comes back, along with pandas, each time he stops the abx. He is back to his prophylactic abx and I am watching him closely for pandas symptoms. So far so good and it has been 36 hours. Last time pandas came back after 12 hours off abx! This time he is on spironolactone so maybe that is helping... Is it possible that my 5 yo is just reacting to my 2 yo? Should I just wait and see or just up the abx? We have a gut bacteria problem that will probably be exacerbated by upping th abx. I would love to go a few weeks without having to make one medical decision. Is that too much to ask? All these decisions are hurting my brain!! Stephanie

Well...that just put things into perspective! How awful!

When I first learned from our local neuro that my second child had pandas (my first had been diagnosed a month before...by ME), no one believed me, not even my husband! He figured that I must have put the idea in the neuro's head, which did not happen. I did not mention my 5 yo's PANDAS (as I was not 100% sure yet) to him which is why I was so SHOCKED when he said my 2 yo has it!! Anyway, the whole family thought I was losing my mind. My mom and brother said that I was just trying to come up with things to keep me busy (!!! LOL!!!), and my husband said that I was just obsessed! Well, my husband now knows different as a lot has happened since then. My family, however, still wonders if I have lost it. I think they think that I have successfully brainwashed my husband into believing this "nonsense"!! Just love being the laughing stock of my family, let me tell you... OK, sorry for the vent!! I guess I needed that My point is that listen to your gut, not your husband on this. The mom is always the first to know. Stephanie Thanks all for the replies. I think I am going to take her to the pediatrician and have her checked. I also have started to talk to her a bit more about her fears, and how to cope with that. Last night we did breathing counts, that really helped her relax before bed. I started her on some of the supplements her brother is on, and will have to get more on the ball about getting silver, probiotics and fish oils into everybody (a full time job, let me tell you!) I might take her to the holistic doctor who diagnosed my son to get a good check up on her. One thing at a time. I mentioned it again to my husband and he said, "It will pass", our older also went through a period like this, than then went away. Maybe we are all a little PANDAS after an illness, but for some of us it wears of, for others it just gets stronger. We have a follow up with Dr. Latimer at the end of the month, I'll call and see if they can squeeze her in with her brother. I guess that's going to be my summer project, get it all figured out, get the strep out to the house, and get Matias through plasmapheresis... Isabel

Maybe you should consult with an infectious disease doctor or an immunologist regarding the infections you have going. Just a thought... Stephanie He was tested by western blot and was negative...he had his first case of pneomonia when he was 10 months old and was hospitalized...get mycoplasma P yearly (sometimes twice a year)...never had strep tho...but his titer levels were high. still digging tho!! just not sure what to do next.

Wow, once a month? That does sound too good to be true! I will look into that! Stephanie I am not using it for my PANDAS child (he is on high-dose abxs), just for the rest of us, to make sure we don't bring strep home. A friend of a friend used it for her family, they kept getting strep and her toddler couldn't handle the antibiotics any more. So, she used it and it took a month but it did work for them. I called the website she recommended, and the homeopath said one dose once a month should be enough to prevent it. Sounds too good to be true, but other than keeping the whole family on abxs, I don't know what else to do! I got it from Elixirs.com, you can call and speak with the homeopath.

Are you using this instead of abx or in addition to abx? We use zithro once a week for both boys but I am having some serious doubts that we can keep it up. My kids both have intestinal bacterial infections from the abx and I am having to give them vancomycin quite often for the bacteria. Sometimes I wonder if I should ditch the abx and just go holistic. There are many ppl on the autism forums who have had success with Olive Leaf Extract as a tx/preventative. I have had success with it myself (and also Oil of Oregano), but I just figure I should do the zithro since there are studies to back it up and I know exactly how much to give. I don't know... The thing I like about the natural stuff is there are no resistance issues. Where do you get Strep Remedy and where did you hear about it? I would also like to hear if anyone has used this or another natural remedy... Stephanie

I'm definitely not trying to talk anyone out of vaccines with my post, but if that is the way you are leaning I'm glad I could help! I'm sorry you are joining the double pandas club. It feels overwhelming at first, I know. I almost fell over when the neurologist told me that my second child could have pandas. I knew right then and there that he DID have pandas. I didn't need a test to confirm it. Then I went into denial for a long time and I just let it go until we got hit with a nightmare exacerbation, then I was forced to accept it!! Stephanie

We tried Tball with my 5 yo this year and it just wasn't happening b/c he was still in exacerbation at the time. My son has had pandas for 4 years so I am at the point that I just don't have the energy for anything that is going to create a headache in our lives. So for now he is involved in no sports. However, now that he is doing better I am considering doing swimming over the summer. Personally, I wouldn't do it if my son were still doing rituals. But you have to decide that based on what is on your plate and how much you (and he) can handle... Good luck and I hope you can find a psych! Stephanie

I have never relayed this story to this board and I'm feeling like now would be a good time with so many of you recently posting about how worn out you are. Not that this story is going to make you any less worn out, but maybe it will just get you thinking about the big picture or give you a different perspective. My 5 yo has had pandas now for 4 years. In Jan 09 he had a polio shot which sent his pandas through the roof and we are just now getting on top of it (BTW, I did not know he had pandas at the time of that last vaccine). Well, right after that shot and his terrible exacerbation of symptoms I spent my days wondering what in the world that shot did to him and the only thing that I could come up with was that it caused autism! Now looking back I know differently, but it was enough for me to call it quits on all vaccines for both kids. And just in time, too. My 2 year old was due for his 12 month vaccines. As I was doing all this research to see what happened to my 5 yo, I came across a lot of information about autism and the early signs. Well, to my horror I saw that my baby had so many of the signs of autism. No social interaction, no communication, low muscle tone, sensory sensitivities, etc. Only thing he would do was smile at us when we spoke to him and he would make eye contact if we spoke to him. But other than that there was no attempt from his part to socialize or communicate. He would sit in the corner for HOURS...HOURS...and play silently. I mean NO SOUND. When we would drive around town...NO SOUND from the backseat. When he was in his crib at night or in the morning....NO SOUND. He didn't point, nothin. The problem is that he flew under the radar b/c he was such an "easy" baby! Everyone told me how lucky I was to have such an "easy baby"! "Easy" does not necessarily mean healthy. Also, my 5 yo was such a handful, I was thankful to have an "easy" baby. But after doing the research, I knew he was in big trouble. I made an appt with the pediatrician and she told me he had some kind of syndrome. I said, you mean autism? She said, I don't know just some kind of syndrome of some sort and you need to get him to the neurologist right away. Well, I skipped the neurologist and got both of my kids to the DAN (Defeat Autism Now) doctor. So you could say that my 5 yo prevented the 12 month shots for my baby, and my baby brought my 5 yo to the DAN doctor who ultimately lead us to the pandas diagnosis. A whole bunch of chaos but it all lead us to where we are today which is a good place. My baby boy came out of the silence of autism VERY quickly! I started him on the GFCF diet and also some initial supplements while we were waiting on our bloodwork. Within a couple weeks, he started crawling through the house looking for me and attempting to communicate! I will never forget the day he crawled into the kitchen where I was loading the dishwasher and he looked up at me and made a face and a sound as if to say, "whatcha doin, mom?". I just knew at that moment that he was going to be ok. He continues to progress as we delve further and further into the DAN protocol. We now have his pandas somewhat under control and I am getting to know a very happy, dynamic little 2 year old! He still has quite a speech delay, but he does have some words and he has a TON of nonverbal communication. Points, makes gestures, etc... My point is that if my 5 yo had not had that horrible exacerbation in Jan of 2009, I would have gone ahead with my baby's next round of vaccines in Feb. 2009. I just know in my heart that those would have been the ones to really do him in. Like the DAN doc said, the only thing I had left to lose was eye contact. If I had lost that it would have DEVASTATED me! Looking back, he did have a regression after his 4 months vaccines (lost babbling and back and forth communication) so I know he would have reacted again... Just thought I would share what I can now call an uplifting story. If you look hard enough you can find a purpose in even the most devastating of events. Stephanie

Wow, I bet that has something to do with it! If he ever gets tempermental again, send him for a stool analysis!!! Stephanie

First we did an Organic Acid Test which looks for markers in the urine which indicate a yeast or bacterial infection. When high hippuric acid showed up, the doc said that means bacteria but he didn't know which bacteria. So then we did a stool analysis and klebsiella showed up. We treated it with vancomycin, a broad spectrum antibiotic. BTW, my son did not have a stomach ache or diarrhea. Nothing to indicate bacteria in the gut. Just the behavior (hmmm....kind of like those pesky asymptomatic strep infections that only show up in behavior ). Our doc said that gut bacteria will cause OCD but not tics. Strep causes both. And I think yeast can cause tics but not OCD. Anyway, I don't know what kind of MD you are seeing but we see a DAN doctor. They specialize in all this kind of stuff. I would bet that many of us on this board have these issues due to the amount of abx our kids are consuming, and then we just think the abx are not working... Your probiotic amount sounds good but I have never heard of that brand. Maybe it is not good. Does it have Lactobacillus rhamnosis in it? Important for keeping away bad bacteria. A few of us on this board use Custom Probiotics. Very reputable, used by many autistic kids. Stephanie