JoyBop

I have heard of bacteria being released into the a system as a result of a tonsillectomy. Herxing is also a possibility if your kiddo has Lyme. Could it also be just from stress? My dd just had a t and a and it has been the most stress inducing an painful experience of her life. She has vocal tics which seemed to disappear after surgery but are slowly returning. I think maybe bc its too painful to clear her throat. Either way u would stuck with the treatment that she was responding well to in the first place and not switch too quickly. Sometimes it can take up to 3 weeks for us to see an improvement.

In not really sure that steroids are actually diagnostic but they do work to calm down an over active immune system and reduce inflammation in the body. Rowing mom makes an retesting point about shutting down the immune system if there is a bacterial infection at work. Just a thought, but im thinking a CBC would show elevated white blood cell counts if there were an infection. In any case, I think a round of steroids is not something to go into lightly.

I listened to all of the pandas radio podcasts and perhaps the most memorable and brilliant guest was Allison Mallony. As everyone knows, her son Sammy was on high doses of Augmentin. She is not a doctor but she made many very poignant comments that I found even more helpful and relevant than most if the physician comments. I recommend you listen to it. She must have said 100 times, if your child is responding to the abx and is doing well, don't stop it come turkey. Slowly reduce the dosage and see if the child tolerates it. If not, keep the child one it. You work so hard to get them well, it just doesn't seem fair to pull the rug out from under both of you. Also, there's still a lot that's not understood about why abx help pandas. Some doctors say there may be some anti inflammatory effects. Others claim its purely a prophylaxis to prevent new infection. We just don't know. By the way, we've never tried it yet. One kiddo is allergiec to pennacillin and the other one is doing quite well on Keflex.

Its a good idea to start one thing at a time, if you can, so you know which thing caused what. I know sometimes its not possible, but a good thought.

I think we will all be careful with our other kids after living through what we all have.

Thanks do much for all that. I stand corrected. I was told to get melatonin. Looks like I have to go back to the health food store. Not sure how i screwed that one up. Do you think the bvalarian root is worth keeping to try during the day? Thanks so much for sharing all of that.

Does anyone use valarian root for their kiddos to get to sleep? I just bought some 1mg tablets for DS 8 but am somewhat hesitant to add yet another pill to the pill box. DS is very hyperactive at night and can't settle down. He is quite lethargic during the day and falls asleep if given the chance. We are still in the acclimation period as we just increased his intunive to 3mg. FYI DS gets the following meds at night: 3 mg intunive, omega 3, Motrin and Keflex. Morning meds: omega, Zoloft 12.5mg, Keflex, vitamin d and Motrin. Is there anything you see that we could do differently? We tried the intunive in the morning but that really made him sleepy. Do you think the Zoloft could be activating him 12 hours later? Could it be anxiety? Any experience with valarian root would be greatly appreciated.

Dark circles under the eyes can be indicative of an allergy of any other over reaction of the immune system. I think emotional stress can contribute as well. Perhaps you are lucky that you have discovered a physical sign when your child immune system is out of whack. Dark circles don't actually hurt in most cases( unless from an injury or severe allergy) so its not necessarily a bad thing. But keep track of when those dark circles come and go and you have a great visual sign of when your child is in a flare.

Otksama does your child already have PANDAS? If not I wouldn't worry. You are obviously already aware if the symptoms just by being on this forum. For us, our child had strep last December. We treated it and thought that was the end of that. About 10 days later he had the overnight onset if OCD and anxiety but we had never considered it was from the strep. He suffered until may when he became so severely incapacitated. In your case, you would be in the lookout for the symptoms and know what to so and when. The hard part is when this happens and no one around the child knows what to look for. If your child does have pandas already, just keep on top of symptoms. When he is in a flare you will know to bring him in for whatever testing is appropriate. I really didn't mean to instill any fear in anyone. Please take my comment with a grain of salt.

I know what you mean about the potential for goofing around on something like an iPad. Our sons OT had a very strict contract DS had to sign with very clear rules and consequences for using the technology. If he is caught messing around or playing games, taking pics of anything he was not specifically asked to take that the use would be removed and he would have to type everything out on his stripped down netbook which does not have access to any distractions. It turned out to be very successful and helpful, but again, this DS was not the one with pandas. Still, its worth a try. But I suppose there is potential for it to become yet another problem to contend with. The alternate option would be for the teacher to take the photo with whichever device and email it to both you and your son. That way he is getting the info and you are also in the loop. My biggest advice is make sure you are fully aware if all assignments and deadlines. I have found that in fourth grade they tend to make the students more independent and responsible. As we know, sometimes our special kiddos are not quite ready for this and still need us to be very involved. I had to fight tooth and nail for this but finally did get included through the use of synced calendars and it made a world if difference.

Sure. A pandas doctor actually gave me that information, and our pediatrician did as well. I'm not one to have studies or articles memorized but I know I have read it several times in the pAst. When I have more time I will try to locate something more specific but at first google I found this. Early and consequent treatment appears to be of importance to avoid chronification and lifelong persistence.[4][3][20] From this articak. http://en.m.wikipedia.org/wiki/Pediatric_acute-onset_neuropsychiatric_syndrome_(PANS) It is cited so you can look up the references if you like. Again, I will try to find a more pinpointed statement. Moleculera Labs also states something to that same effect on their research page. Here is an excerpt: Current findings support the hypothesis that there is an abnormal immunological response in those with the clinical symptoms of PANDAS11,21. These findings will allow a more specific diagnostic laboratory tool that will allow a more precise and rapid confirmation of PANDAS. Identification of autoantibodies directed against specific neurologic receptors may assist the clinician in making an accurate and timely diagnosis of PANDAS potentially allowing for effective treatment strategies to be implemented. They also say that treating it sooner rather than later will reduce much pain and suffering in the long term. I also personally know two children who did get diagnosed at the onset (thanks in part to my kiddos opening some eyes around here) and they were treated with one monh of abx. They improved to 100% and have remained well. Now this is an encedotal and unscientific, but my own experience leads me to believe its true. With that said, I also believe that all our kids will get better. Some sooner than others. Do I think there is no chance that a child with pandas will not get well because it was t caught in the first 6 weeks? No I don't. I think every child and case is very individual. I will try and find a more poignant quote if I can , or ask our ID doc for more info when we see him again. I'm really not one to spew out studies or quotes. I was more intending to share my own thoughts and what I have heard and read from our own journey through PANDAS. I hope that is helpful.

Momwithocd, yes, I realize that brain imaging has been done in Swedos study and is being repeated in the ongoing IVIG study. But as patidnts, unless we are having these imaging tests done ourselves, there's no way to clearly illustrate that our child has it. I agree, its semantics, but it also comes down to insurance issues. A doctor may put a code on a bill stating the patient has encephalitis and refer a patient for a specific treatment. But the insurance company will Likey audit that request and ask to see proof. Most ICUs dont have that proof, only the evidence from Swedos studies and the theories that surround them. Sorry, not trying to be controversial. I'm looking at things at face value for what its worth. The bottom line is, there are no answers right now as to what the source of inflammation is.

From everything I have read and heard from our doctors is that the answer is not truly known. (I could be wrong, but thus is what I have interpreted from my own research) there are those experts that believe the nueronal antibodies cross the blood brain barrier and attack basal ganglia, causing inflmation. However, experts such as dr t don't buy that explanation. They don't believe that such a huge cell could ever cross that barrier , instead cytokines are what crosses the BBB. Either way, it is difficult to prove the inflammation theory as SED rates in blood work are not shown to be elevated in PANDAS patients. Perhaps MRI or other scans would show, but most of us those tests are not indicated and therefore would not be covered by insurance. Dr Swedos current study is having pts undergo such scans both before and after IVIG treatments. Perhaps when her results are released we will have some cold hard facts. Until then, its anyone's best guess if inflammation is really the cause of the symptoms. Who knows? Maybe this will all bring about new information about how Motrin work. Our neurologist explains that many drugs do mysterious things for reasons we have no idea, and for conditions the drugs were not intended. Until the research is complete, at least many if us know that Motrin does help our children. We can deduce that's because there in inflammation for now.

This may be a clue: Beta-lactamases are enzymes (EC 3.5.2.6) produced by some bacteria that provide resistance to beta-lactam antibiotics like penicillins, cephamycins, and carbapenems (ertapenem) (Carbapenems are relatively resistant to beta-lactamase). Beta-lactamase provides antibiotic resistance by breaking the antibiotics' structure. These antibiotics all have a common element in their molecular structure: a four-atom ring known as a beta-lactam. Through hydrolysis, the lactamase enzyme breaks the β-lactam ring open, deactivating the molecule's antibacterial properties. Beta-lactam antibiotics are typically used to treat a broad spectrum of Gram-positive and Gram-negative bacteria. Beta-lactamases produced by Gram-negative organisms are usually secreted, especially when antibiotics are present in the environment.[1]

I just wrote about this in another thread. Our infectious disease doc explained why Amox is no longer effective for many people. I forget the percentage but I think it was around 80%. Will have to look for the literature. Anyway he said that many people now have an enzyme that deactivates Amox and renders it ineffective. Amox still works in the Petri dish to kill strep but obviously not in people that now have this enzyme. If you google it you will see countless studies that look at strep in kids. It has been known for quite some time that it is certainly not the most effective treatment, and definitely not overkill!!! I would find a different doctor to treat for this condition.

That is brilliant!! Thanks for sharing. And his amazing that your son was able to ask you to go and celebrate his brother. Even though he may still be struggling it sounds like there is some beautiful breakthrough moments.

While I agree with others that it could be a herxing, there are real reasons why amoxicillin would be ineffective. First, I know nothing a out Lyme or what abx would normally cover such an infection, but you would only be herxing if you hit on an appropriate treatment. Secondly, our PANDAS infectious diseas doc explained why it is that Amox is ineffective in many people. He said that they have done numerous studies that show that many humans have an enzyme in their own bodies that naturally deactivate the Amox. I don't have the numbers but the percentage is quite high. What this means is that Amox would still be effective in the Petri dish, which is where many studies take place, but ineffective for many humans. I would imagine it could take a week or more for the body to adapt and kill off the Amox but it could certainly explain why your kiddo got better initially. I had the same experience with my dd. in fact, she got strep on both Amox and Zithromax. If you google it, you will find many studies on children and strep showing that Amox is no longer effective. I will have to look around to see if I can find the studies our ID referenced. He put my kids on Keflex and the results have been tremendous! Aside from all of this you are SO lucky to have found a pandas saavy doc who diagnosed and is treating your child regardless of this little blip. As mentioned many of our kids to have regressions. The important thing is that you have doctors that will work with you. The thing that gets me is that the word out on the street about PANDAS is that its from strep, you treat the strep, and wa la. Its gone! Swedo says in some of her statements that if it is caught and treated in the first 3-6 weeks you can irradiate it. Otherwise it can become a chronic and recurrent condition as many of us on this forum are dealing with.

I have lots of experience on this topic with my now 6th grader, who has ADHD and not PANDAS. I may be applying some of it myself to DS who is entering the 3rd grade who has PANDAS and like yours, had a disastrous 2nd grade experience.<br />DS 11 has ADHD and fine motor skill deficits, always has. He is extremely bright but between the attention issues, weak fine motor skills, vision problems, ect writing becomes just too hard. He spaces his words incorrectly. EX; The cat sat on the fence would read: th eca tsatonthef ence. No caps, no punctuation, ect. They were telling me at school he was just lazy hich is SO isnt. I ended up having him tested and found that he has a couple of learning disabilities. Sequencial processing disorder is the one that hurts his writing.<br /><br />Since 2nd grade he has had use of an ipad. I first gave him a netbook. He is allowed to not only type everything, but use a word processing program for every subject except spelling. We tried the dragon speak but it was a nightmare! First, it hardly picked up his voice. Second, it got things down in writing, but the thoughts were still out of order and the grammar was a mess. It was hard for ME to proofread it. It created far more problems than it corrected and made him feel helpless. 4th grade is the hardest year where we live so I really cracked down then. I bought him an ipad. The main purpose was for him to be able to take pictures of the homework board and assignments. It worked wonders! The other students would have 5 minutes to copy everything they saw on the board. I would never know what homework he had, and he couldnt read his own writing. So every day he took pictures of pertinent things and the OT found him an app that allowed me to sign it right in the ipad, just as other parents had to sign the homework book every night. He was also able to email his assignments to his teachers since he was always loosing everything. There was access to wireless printers so that he could get instant feedback if needed.<br /><br />For MCAS standardized testing he had a one on one aid who scribed for him. He didnt get that accommodation in the classroom and was probably to benefit the school and not him. He is so brilliant that they wanted his test scores high to make themselves look good.<br /><br />If you can not afford an ipad, the school may have one to loan you or you could possibly find a grant. As another option, netbooks are fairly inexpensive although they do not take photos that I am aware of. The photos were definitely the most helpful thing for us. The ipad in general helped fix a lot of issues.<br /><br />The other things implemented on the ipad is the use of calendars that are in sync with my iphone. This way I know when an assignment is due and there are no surprises. The OT would work with him to break down the assignments into smaller chunks. Ex: Choose book for report by 9/10. Half book read by 10/10. Whole book read by...you get the picture.<br /><br />I have also tried hiring an OT privately to help with handwriting but it has proven ineffective and he absolutely hates it. Ultimately, we waited too long to try to help. My 3rd grader is at a pivotal point. I am going to try to get him the help he needs so he doesnt end up in the same boat. He starts private OT this month.<br /><br />BTW, he started out on a 504 and I finally pushed for the IEP last year. They didnt want to give it to him because his IQ was in the 99%. Meanwhile, he was getting Cs and C-s, shame on them for allowing that!!<br /><br />Hope that helps. Feel free to ask me any specifics.

First of all, Mazel tov to your DS! I can't imagine how stressful it must be to be organizing such a huge event on too of managing all you have going on with your other son. I'm sure its very stressful for him as well knowing that a big family event is going on and be is not able to participate. Give yourself a pass on loosing your temper, I'm sure most of us would have lost it long ago. On the positive side, the fact that your son is still hanging out with friends seems like an outstanding sign. My DS could not maintain any relationships at all while in a flare. I know they are all different but that does look like a good sign. Also, sometimes improvements take time to manifest so don't give up on hope yet. Its amazing that you have been a me to navigate through the system and get so many treatments for your son. That's more than some of us on this forum have been a me to accomplish thus far. You are doing amazing and taking on a tremendous amount. Focus on getting through your big event and the. Give your DS time to find his new baseline. You know that he is probably feeling all the stress around him so give it all a chance to pass. Hang in there!!

Also, different abx cover different infections so you can't assume what you've been taking would do any job. It certainly does sound like all those symptoms could be connected. Reflux can be silent, meaning you could have if but not know it. Also you can develope reflux at any age so try to keep an open mind. Prilosec and prepaid are both proton pump inhibitors. I agree you don't want to chase after symptoms, its much better to get to the source. I think if you had a GI doc, scopes could tell you a lot. But usually there has to be at least occult blood in the stool or other findings for insurance to cover scopes. Can you have you mother get you some occult blood test strips? They are called Guiac strips.

I will have some thoughts for you in the neat future as I am in the hospital as I type with my little one recovering from tonsillectomy. It is an excruciatingly painful experience but I am hoping its worth it.

Its hard to accomplish much while your child is in a flare, but in this case no one is going to get what they need if Mamma is not getting a good night sleep. When we are in this scenario I allow DS to sleep on an air bed in my room. Yes, I do wake in the morning only to find him snuggled in between us but at least u for a good nights sleep. Have you tried Motrin 3 times per day ? That has been extreme helpful. I also find when my son has dairy products he will be running in circles and totally agitated until midnight. My advice is, until your child is on remission find a way to compromise where he feels safe and secure and you get some sleep. See what his ideas are. Perhaps if he feels in control of the solution he will be more willing to participate. Also, what does he get to trade the tokens for? If it were something really motivating that would help too.

Please also know that there are several diagnostic tests that can give more info regarding reflux. An upper GI series can verify reflux vs anatomical causes for symptoms. Endoscopy gets a good visual and even biopsies of your intestines, esophagus and stomach. That way you can get to the source if the symptoms to treat the underlying condition. But I still think its worth ruling out things like h pylori on a simple stool test for starters.

Im so sorry to hear all of that!!! My son used to have the same symptoms but they were due to severe reflux. Interestingly, it turned out to be caused by H. Pylori. Have you had a stool sample for that? It causes bleeding ulcers in stomach and esophogus and severe reflux. He had it so bad that he had a nodule in his vocal cords that wreaked havoc on his voice and throat. He had to go for voice therapy to retrain him on how to use his vocal cords bc we were told if he didnt he would do permanent damage to them. He was only two at the time and it was a very difficult time for all of us. He had diarrhea as well. Who knows if this is the same thing, but perhaps you could ask you doc to do a stool culture? Our son had all sorts of horrible GI problems and the H. Pylori was discovered on by endoscopy but there are stool antigen tests that are easy and effective at detecting. C-Diff can be tricky to catch on stool sample and you sometimes need to repeat it 3-4 times before you can see a positive test result. Have you ever had an occult blood test done on your stool? That would also be an indicator of bleeding ulcers which could be contributing to all of this. My recommendation would be to go see your PCP and have your stool cultured for the gammet of infections. Reflux that shoots all the way up into your throat can be terribly painful. Removing the tonsils doesn't actually change that, and recovery from surgery with hot stomach acids shooting into the surgical wound site would be not picnic. My son was on 3 different reflux meds including prilosec and zantac but nothing gave him any relief until we caught and treated the H. Pylori and bleeding ulcers. It was a while ago, but I think there were 2 or 3 different antibiotics but a medication that coated the ulcers to allow them to heal. Im not saying that you have the same thing, but it sure sounds similar. By the way, half the worlds population is infected with H. Pylori, but many don't have any symptoms. Once they find it though, they must treat it. Its a fairly quick recovery once caught and treated. ITs worth investigating, anyway. Best of luck and feel better!

I believe he does work with some insurance cos. The trick is getting your insurance company to agree to pay for you to see an out of network doc. I tried and failed, but was willing to go and pay if I didnt find another plan. Luckily, I did find some great PANDAS docs that are much closer to home that were covered by my insurance. I did call Dr. T's office and he had availability. I didnt hang on to my notes, but feel free to pm me and I will tell you the price range I recall.I would imagine he takes care of many PANDAS patients that travel great distances that do not have access for prescriptions for antibiotics otherwise. Im sure he has a plan to provide an appropriate treatment plan for someone in your situation.