JoyBop

LMG what kind of therapy are you talking about? Thanks for the reply. We have already told the therapist no exposures until he can handle it. I'm not seeing how any therapy will work now. But I want to keep bringing hin to keep him int he routine. Our dr recommended seeing the therapist 2-3 times a week during the flare but haven't gotten a hold of any pandas experts yet in exactly what we should be focusing on.

So kind of you to reply! It's been one of those days!! My son has been on 500mg twice a day of keflex for 2 years. He's allergic to penicillin so that's our best bet. If we have to desensitize him to it if we need it his pandas immunologist is willing to do it for us. He used to have a fear of gum which was far worse than this because it was on every sidewalk and every chair or table. He literally couldn't leave the house. He also had the fear of someone getting sick and vomiting but it has reached new heights with this flare. I made the decision not to do any more exposures for now. May be considering meds at this point.

Hi there. We also go to the same team at MGH...They are ALL amazing!! No two Pandas cases are ever alike and only time will tell how your child will fare. I could answer your question in so many ways. We spent a week at the NIH with Dr. Swedo and her team last January. He was in recovery phase and still not "well" but much, much better than he had been. She gave me great hope and said that by the time he was in middle school he should be perfect. He was in second grade when this nighmare began and he was in third grade during our visit to the NIH. He is now in fourth grade. He did get better and better, in fact, I just wrote the team a few months ago to say how well both of my kids were doing. Then about 6 weeks ago, after being exposed to strep in his school (he didnt get it) we have been on a journey back through . Unitl this point in time we have experienced mild flares and little set backs, and accepted the fact that at baseline he now has mild to moderate OCD and generalized anxiety. And we could totally deal with that and it didnt prevent him from living a normal life. But this flare has been awful and set us WAY back! Dr. P at MGH treats each child differently based on how they present. The plan for us was to wean my son down from 500 to 250mg of Keflex BID) per day in the Spring and trial him off it for the summer. That has all changed now that he is in a flare. I would take his advice. He is a wonderful and compassionate Dr. and treats each kids the best way he can. Its not a formula. The longer the child has had PANDAS prior to treatment, the longer the healing takes. My kids had it for a long time before our diagnosis. But the good news is we have experienced many good months with only a few glitches. This is how we get through it. Our motto is "Celebrate the good moments and get through the bad." Good luck!

Hi everyone. I haven't been around this forum for a long time. My 2 kids have been making a very nice recovery from PANDAS and we moved on...or so we thought. MY 9 year old is having the worst flare I have seen in quite some time. He was exposed to two children with strep 6 weeks ago and has been in a major flare ever since, getting worse every day. He is now afraid to use public restrooms to the point that he is peeing in his pants when we get back to the car. He is refusing to drink (so he wont have to pee) which has caused him to be constipated. This has caused more OCD in the bathroom at home and bleeding fissures from straining. Seeing the blood causes him to panic, and the cycle rages on. Heres my question. Our therapist wants to continue doing exposure therapy, thinking thats the only way to help. I thought I recalled Peggy Chapman at the 2013 conference in RI say that you should not do exposure therapy during a flare. This therapist has never seen my child in this kind of a flare and he has always been willing to do the work with her. Now he is refusing to see her. I dont know whether I should be pushing him to continue or give him a break from exposures until things calm down. We have an appointment with Dr. KYle Williams at MGH next Monday. Just trying to do whatever we can until we get there. Any thoughts or links to articles would be most appreciated! Alyssa

We see all the docs at MGH and they are beyond fabulous!! We had the work up with the immunologist and she did a brilliant job. My child had a positive ANA (speckled). This is a non specific finding and is nothing to worry about. The NIH noted to me that up to half of all of their pandas cases are testing positive to the ANA but it is not something to worry about. You will most likely have to repeat the bloodwork when you go back to see the immunologist. Try not to worry, especially if your child seems to remain healthy most of the time. My child has low white blood cells and neutrophils which should also make him susceptible to illness yet he is almost never sick. You are in great hands!

I've been MIA for a while and just wanted to give you all an update. A quick refresher on where we were: ds8 was in a constant chronic pandas flare with OCD, anxiety, mild tics, ADHD and General bad feelings about himself. The worst of all was his ADHD like behavior in school which made his daily functioning very difficult. The teachers just ignored him and let him wander around the classroom during instruction. He was often eating things off the floor (compulsion) and then obsessed all night about who saw him eat what and how embarrassed he was. Each day was traumatic and awful. The school refused to meet with me or my doctors and put us off continually until their evaluations we're complete. In the meantime, we had gone to the NIH for the study after winter break and I began to realize that the longer he was away from school the better he became. After 3 wonderful weeks out of school he fell apart the very day he returned. We knew at that time we had to find a new school. We had been asking for meetings and support since August and here it was February and we still didn't have a meeting yet. Enough was enough. I had requested the IEP eval in Nov but it took the school until the end of January to set a date to meet with us. We had planned on withdrawing him the day after the meeting as we enrolled him in a wonderful, small private school. Unfortunately the meeting date came and it was a snow day. I had to withdraw him before the meeting. It took a whole month to reconvene and he was denied an IEP. In fact, they denied there was any problem at all and that he was perfectly smart and gave him a worthless 504. They were vicious and angry and pointed their fingers at us and yelled at us. It was ugly. My husband and our doctor were there and I was able to sit there and smile and say , yes, I believe my son is now in the right place. It's now been about 5 weeks since my son has been in his new school and all I have to say is WOW!!!!! I have a new child!!! I haven't seen him this happy and relaxed in a year and a half. He thanks me daily for everything I do for him, but especially for allowing him to go to his new school. He tells me how unhappy he was at his other school but I always redirect the convo to tell me what makes him so happy now. He feels so wonderful about himself bc he receives positive praise all day long, is in a small classroom with the same teacher all day, and says they just treat you like family there. It just feels like home. It brings tears to my eyes!!! I never would have imagined that simply changing his environment could have had such a huge impact on him. He still has difficulty with attention but he Is held to the same rules and standards everyone else is and he's thriving. His OCD is diminishing and is being replaced with a positive self esteem. The handwriting and math is still very poor but his teacher will always find the positive and that puts a huge smile on his face and gives him the strength and the will to proceed. Yes, he was ready to heal and we've been at this for a while now. But this school situation was holding him back and dragging him down. I'm so thrilled that everything turned out just the way it did bc I would never have thought to put my child in private school Bc our schools are so coveted where we live. Keep the faith everyone. Follow your gut and don't give up. Sometimes it seems like they will never get better. I've been there myself for so long. But if my kid can have this incredible turn around yours can too. I encourage you all to consider the impact that emotional stress has on the blood brain barrier and do what you can to help alleviate it. It just might make the difference your child needs to heal. I am 100% convinced the the wrong school environment and lack of support perpetuated my sons symptoms each and every day.

The docs are very responsive to all calls and emails. Just send dr swedo a message at the above address and you should get a call from the nurse practiontioner with in a few days. If you have documentation from your last history that would be helpful for them I'm sure. I woukdnt hesitate to call them. Also if you mention where you are located perhaps some people from your area would chime in and make a recommendation for a pandas doc near home. I'm SO sad to hear that it can come back after such a long time in remission. Please tell us how old he child was at onset, how long he suffered and how old he is now. I hope you are able to get the help you need for him fast.

Ibc I feel like our stories are so similar. Tomorrow ss starts his new smaller private school and I am hoping he finds everything he needs there and less of what he doesn't. My son was also suicidal and agitated on Prozac and Zoloft. We have found everything is much easier to accept and deal with without the side effects of the drugs which make everything messier. He is allergic to Amox and is on Keflex for the long term We have a therapist who is great with DS. She tends not to be quite as talented at handling me, but everytime she helps him score a victory and take a step farther back. She's definitely won over my trust and in learning to just let him go with her alone. I used to want to be in the room with them and glad how to help him but she notices that he is a different child with me there. At first that was very hard to swallow, but when I saw he last week sniffing gum, and touching wrapped pieces of gum, I knew I had to get over if. Gum is the one thing (ok and the thought of someone vomitting) that will send him over the edge. I'm amazed at how similar our stories are. Thanks again for posting in this thread! Riff, I also agree that the distractanikity can be avoidance and distraction from anxiety and OCD. But there is also a motoric hyperactivity that accompanies it which I think makes it even more complex. There is so much going on at once in these kids bodies and brains its enough to make us all crazy. I wish it were just plain old adhd and that there were a magic pill that could make it all go away.

In so sorry you are having these troubles. I hear the point about not wanting this following your child in writing, but I think that teacher should tell you face to face exactly what she thought she heard your child say. Perhaps this was some sort of complex motor tic that he was unaware of, or just a big misunderstanding? The teacher is not acting I a mature if professional manner. I can not imagine a teacher bursting into tears over a comment any student made. If it was that dramatic it should be reported at least to the parent. As far as the 504 debate goes, I have several thoughts. First, it's your child civil right. If for whatever reason your child might act I appropriately due to anxiety or other medically established reasons, it should not be held against him. With that said, of course, you want to have some say in how this is dealt with as you would t want it to be perpetuated. But for the teacher to cry and then not be willing to discuss is dismally unacceptable. They shouso at least give you an analogy or explain how the teacher felt by the comment she thought she heard. You are correct I. That his is a he said/she said case. Those are never easily resolved. But the issue is concrete and should be addressed for future purposes. The other issue with the 504 as in my case, none of the important items were ever implemented so it proved to be worthless. The 504 is only as good as the intentions and ability to communicate as the teachers in loved in your child's direct care. I believe kids should be taught conflict resolution and shouldn't just change teachers at the first sign if trouble. But how can that happen when the teacher so t communicate? I wouldn't let this one to. It sounds like you do have a good relationship with this school and I would encourage you to use this to your advantage to get to the bottom of this and figure out what went wrong and how it could be handled and prevented in the future. I hope you are able to resolve the issue to where you are comfortable. I know how hard these things can be!

Ibc thank you so much for posting all of that. I can totally relate to returing you said. Right down to DS eating the science project! My son does all that you mentioned. It sound a like your school is supportive and communicative about your son and for that you are lucky' my son just gets swept under the rug. Were pulling the plug this week and I can't wait! Although holding my breath for when the behaviors start again in the new school. Hopeful I am met with compassion and support. Do you have any advise for me going forward with a child much like yours currently in third grade. Does your child receive services ? Here is a link to the questionnaire many doctors use to screen for bipolar just to give you an inkling. http://www.psycheducation.org/depression/BSDS.htm

Hrose, we use omega 3 to support brain healing and for its anti inflammatory qualities. Qannie, motto sound silly but what is ALA? Do you think it was not and not the bump? In guessing it could also be a big combo.

Pow wow. Yes, I meant impermeability if the gut. Sorry, I really so need cheater glasses, I've been living in denial and auto correct doesn't help! As far as removing gluten, I might add, no diet is perfect and even the best thought out diet will have an occasional oops wether it be cross contaminated foods. Foods mid marked in the I packaging, or just a general cheat. No one can be perfect all the time. As smarty mentioned, if you truly have celiac or a severe allergy to gluten or the product you ate, you may suffer a severe reaction and there will be a recovery time. But you are correct in saying that all that time you succeeded at being gluten free and you were symptom free during that time, of course, nothing can take that away. If you are looking at gluten as an inflammatory effect and you are exposing your child to gluten Occasionally and deliberately, I would equate that to letting your child knowingly hang out with someone who has a confirmed case if strep. In other words, if you believe either of those situations would cause a flare for your kid, or perpetuate symptoms, and you allow continual )even though they may be minimal) exposure you will keep your child in a chronic state if suffering. One step forward, two steps back. It can also take a longtime to get these things out if your system. So while it may only take a day to get the "carbs" our of your body from a diet standpoint, the inflammation or symptomatic reaction could create a chain reaction and or take some time to reverse. These are my own opinions based on my experiences with a child who had life threatening allergies to milk and other things for the first 5 years of his life. The more exposures he had, the sicker he became, the longer the illness lasted. It was so bad that a cross contamination landed him In the hospital for 10 days with bleeding, inflated and paralysed intestines. Each exposure made him worse. We I my for him better when we were able to go a full year without an oops. It wasn't easy, because life happens!

Yes! Both stress and inflammation from a collision ?or any other injury or illness) can certainly cause a flare. Stress and overstimulation are huge ones for my son. Have your tried Motrin? You might want to consider keeping him on abx longer.

I know several kids on abilify that ballooned up in it and 2 kids that didn't. Its a possibility, but every kid is different.

Well put, as always Q!

T Anna that's such great news!! I was told at the NIH that they see bright kids who kids two years if hs but when they are ready, come bounding back, graduate at the top of their class, and go to good colleges. Let's hope your son will follow that path!

I bought that book she. DS 7 pandas was at his worst and before we had his pandas under control so it is t really a fair evaluation of the book. But I have to say that it was very useless for a pandas kid that was having a meltdown or rage attack for no good reason other than their own dysregulation. You could never pick what the issue would be in advance of course, bc there aren't many patterns to their rages, other than when they generally can't get their own way. Talking about things, wether it be in advance or not, didn't make a difference bc all their reasoning skills to out the door. With all that said, I do believe it would work quite well for a child who had control issues, or other reasons for freaking out, other than pandas. It makes good common sense to figure out triggers in advance and let the child solve the problem. Consistency is key! But sadly, this book didn't even come close to helping is through panda attacks.

We have given up on the adhd meds as they have all been a disaster. I'm told that the reason is that in adhd the frontal cortex doesn't get enough stimulation. The stimulants stimulate that particular part of the brain. In pandas it's believed that other parts of the brain are way overstimulated (dopamine) so throw a stimulant in there and watch out! Of course there are those that have pandas that truly do have adhd in addition to pandas and I believe those are the ones who will benefit best from meds. We tried intunive for 6 months. At lower doses it did nothing but give him side effects. (Dripping of urine all day, changed the way his food tastes, rebounded at 8pm every night , and was very sedating). At higher doses it worked for hyperactivity but only bc it was so sedating that he was nodding off in school. We also added clonidine to the mix to ho sleep at night and that snowed him, again didn't help the adhd. We tried Prozac and Zoloft, both made him have suicidal ideations and was very agitating. Tht rules out stratera for us, as it has a very similar mechanism. I was time to try abilify next but to be honest, I am so much happier to have my real child's personality off the drugs and we just have to deal with the symptoms. Its sad bc those adhd symptoms really wreak has ok on his life, especially in school but I feel we have done all we can. I recommend you also with your doc and commit to giving it a try. Intunive is a blood pressure med and just sort of tones things down. If the lack of concentration is mild and hyperactivity is worse, it might work for you. But it's not a stimulant and doesn't work like a true adhd med. you haut have to keep trying until you've either found the right one, exhausted your options, or given up. We have decided there is t a med in the world that can help our son, or not at least without making it worse.

Interesting connection. Only ibuprofen is known to increase impermeability in the fit so in essence its counter productive. It's not the inflammation in and of itself that causes pandas symptoms, it's the breaking down of the blood brain barrier. Dr Bock sort of brings it all home with his connection. The most interesting part is my child had a severe case of leaky gut for 4 years but never had a psychiatric or other symptoms. He also did have yeast overgrowth in his stool and intestinal biopsies. Which reminds me, maybe they will find that when we get scoped in a few weeks.

I think you can get a class negative but not a false positive. It took us more than 6 weeks to get rid of our strep infection on abx. Also you mentioned preventative antibiotics, not therapeutic. Do you mean you had her on a low dose ? As far as the "dead strep cells" the test is looking for antigens or pieces if bacteria. You might get a faint positve if there were remnants of strep cells that say were killed that day or the day before, but not much farther outside that. A culture is really your best bet but sounds like the infection isn't cured yet.

Everyone one oft kids symptoms are in there! My child actually had leaky gut when he was younger but didn't have any of those symptoms. So according to that list, all of our kids could have leaky gut and not pandas. Or, let me rephrase it by saying something Dr. Bock had us all repeat after him out loud. "Leaky gut, leaky brain." But what does yeast overgrowth have to do with leaky gut? Or am I confusing two different concepts here? To play devils advocate, if these kids really had yeast overgrowth at onset, abx would make them worse and not better. I'm not sure I totally but that that lengthy list is common for yeast, but it is certainly an interesting thought.

Where did you get that list? According to your list, yeast overgrowth is the same throng as PANDAS.

We tried it for 3.5 months last June. Honestly, it didn't help him in the least, but it did create a while new host of things to obsess over. To be fair, I found he had been cheating (or at least had obsessions that he had) and then felt guilty for doing so. I never caught him doing it but I can't say with certainty that he didn't. Either way, it was a disaster and gave us volumes of new problems not to mention expense of foods. I guess its best if the child is on board and can handle these changes. Now I see my kiddo is obsessed with food so it's no wonder it back fired. Then again I can't help but wonder if it was our attempt at his diet that caused the obsession. I guess I'll never know. We are now dealing with helping him make wise food choices and getting more activity. Choose your battles!

Thanks for sharing that! I'm so sorry that you are still dealing. With this four years later. You are an inspiration !

I could. I do work, but at this point its only a couple of days. The real issue at hand is that this psychologist is so vicious that if I pull him out prior it will be like declaring war and she would most likely deny the eligibility for IEP for fear we would request services be delivered to the private school. There are laws now that a school district must provide a percentage of funds to private students. Really, I want nothing to do with them!! But that is why I chose to leave him there until the meeting. Our psychiatrist wanted him out of there two weeks prior to the meeting. I regret that these two weeks have been so difficult but I am making an investment in his future so he will never have to loose the better part of a school year to gain that eligibility ever again. Assuming this school works out, he will go To a charter school for sixth grade and will not be able to be retested until Feb of that year. But if I already have eligibility that last 3 years, I can make an appointment and pick right up on an IEP before he even gets there in sixth grade so its worth whatever hoops I have to jump through. 3 days left!! My meeting is Wed. He has a doc appointment thurs so will not be in school and I may let him to to say goodbye on Friday. I want him to have closure and be able to proudly tell kids he is going to another school. I don't want him to feel like he just disappeared one day and he didn't matter, or worse, that he had somehow failed or was running away. I will not tell him until wed bc I can't afford for him to let the cat out of the bag. Of course, he may have already told kids he visited another school and that his parents were considering his options. But I really don't think they have a clue. Unless they do and that's why the sudden "computer crash!"