becjonz

My ds has been on Penn VK 250mg 2x/day for about 2 weeks. School starts for us Tuesday, it is a holiday weekend and he of course now has a cough, on and off sore throat and hoarse voice. His cough has lasted a week and is only seeming to increase. His anxiety and irritability have increased as noted both by myself and my mother separately. But again school starts Tuesday...is illness triggering symptoms or anxiety witch did preexist PANDAS at least in part. I did a home strep test, it was negative but don't know how accurate it is. He has in the past had both elevated strep tests and MycoP so both seem to be triggers for his PANDAS. So my constant struggle is do I go to the walk in to have them look at him and force them into rapid strep (which I'd guess to be negative) or wait until things get worse. I feel torn due to the weekend and not able to see reg. docs and yet the pressure of school starting. What would you do?

Last week we went to my son's PANDAS doctor and she asked me to complete this survey for a grad student. It is about anxiety and the paper I was given said that you are eligible to complete whether or not your child has a lot of anxiety or not. It is completely anonymous and the goal of the project is to better understand parent's attitudes and feelings aobut using effective strategies to help their child manage anxiety. Our doctor said that the student needs LOTS of responses and I said I knew of a great group of parents that might be willing to help. As a result she wanted the website address when she heard there was a board for PANDAS parents that was so active. Here's the link http://www.zoomerang.com/Survey/WEB22APTCQCDAV It took me about 15 minutes.

I don't know how to add to official list but it means Blood Brain Barrier.

Breastfed both- one PANDAS ds and one not(?) PANDAS ds

I have been trying to decide on some sort of ongoing fundraiser for Dr. Cunningham's research that could be done locally but then repeated nationally. My hope was for something with some impact yet not be intense either management or time wise. So I've come up with coin drives. I was responsible for one at my school last year and my tiny school of 150 students raised $2500 dollars! A simple incentive of a pizza party for the winning class or some other reward really spurred on a few of our classes to "win" which only proved to be a real winner for the charity. The Leukemia and Lymphoma Society runs Pennies for Patients each year during a few weeks in March and raises a large amount of money each year. I could see us coming up with a plan and conducting the same type of fundraiser. I have already found collection boxes and could buy 500 at a price I'm willing to donate to start this out. I would also then get labels and would label each box and add a slot for depositing coins. As others were interested and found schools willing to do a coin drive you would simply need to email me and I would mail you out the required number of boxes. It would be my hope that then the parent organizing on a local basis would donate the reward. This would then allow 100% of the money raised to go to Dr. Cunningham's research. The second prong to this approach would be to possibly place small locked donation boxes at businesses. Maybe a local family could include a few lines about how PANDAS has impacted them on the attached sign for these boxes. These boxes would just require periodic collection of any donated funds. My current hesitation with these is that in my initial research for this I have only found some pretty cost prohibitive options for locked boxes. I don't want this to become a burden or to waste any research funds on supplies such as this. My thought had been to approach our school system but then next approach surrounding ones as well. I think this could be an ongoing opportunity for us to develop a fund raising strategy. Relay for Life, Pennies for Patients, American Heart Walk, etc all had to start somewhere. I think PANDAS needs its own "thing". Thoughts, ideas, suggestions? Want to tell me I'm crazy? Feedback is eagerly received!

Thank you so much for this report and I can't seem to ever say enough thanks for your work in getting this grant. You are truly a blessing to our kids. I think donations would be great but also we as parents can only give so much. I'd still love to see local fundraisers as well where we could then send the money on to you and therefore pass it on to Dr. Cunningham. Do you think that you could set up a Paypal account or something of that sort so that people outside of our board could feel more secure donating? I would trust you but those who are not on this board may have an issue. I know there has been discussion of an ebook and I'm eager to participate but I wonder about other opportunities...basket raffles, pasta dinners, walks-local opportunities aka "ways to hit other people up for money besides just us PANDAS parents" lol

I feel I should know this answer but I want to be sure to pick the best things for this audience. And no before you think I'm an idiot the therapist is not for my PANDAS child. lol My younger ds just began seeing a therapist due to his reaction to my impending divorce and because he tends to be the brunt of his brother's wrath when he experiences an exacerbation. My DS w/ PANDAS was only diagnosed due to a smart therapist who said she wanted it ruled out before she tried CBT in case we were not dealing with average anxiety. Prior to this I'd never heard of PANDAS and thought his movements were due to anxiety but tics? I was shocked at the mention and didn't believe that is what it was. (I was so dumb back then. ) I hate the idea of a therapist who is not familiar with PANDAS because of the other kids who could maybe be id'd through him. SO...what would you recommend I print and bombard him with next week when I bring my non-PANDAS ds? I want things that will be good for a therapist to get an overall picture that might help them to at least make him think if he were to see a kid with OCD, tics, anxiety, etc. Thanks!

Airial said it so well that I just have to say ditto! THanks so much Buster!

My son was diagnosed with PANDAS through elevated titers but I'm always curious when I see posts about Cunningham test. I like the idea of his data being added to the research since I figure the more info the better BUT $400 is a lot right now so I have two questions... 1. Would you recommend or do you see a benefit to having the test done even if we don't need it for diagnosis? 2. What is the likelihood of the test being free again once they receive the PEPSI refresh money? (feel guilty asking but if it was a matter of waiting a month or two...)

I ran into this same problem.

Wish the segment had actually mentioned PANDAS...

I had that same thought. Gosh if DS got sillier or more out it at times I'd throttle him. (can you tell it has been a challenging day with him? lol) But seriously I will try to watch with an open mind. The sympathetic heart will be easier because when it comes to PANDAS it is not my place to judge, we all need to work so hard to find what is right for our kids and honestly I'm not educated enough on medical marijuana. Your efforts will help to solve that. Yeah, this too worries me. There are so many reasons for my pending divorce but one of them was the discovery of my husbands use of pot. This is not an influence I want my kids around so the idea of providing it to my child is a whole other question for me. I'll be curious to learn more because my DH was thinking that he could use it to help with sleep but didn't factor in that he is bipolar. His doctor and I spent a year puzzled as to why meds wouldn't work, why he withdrew more and more from us, his family and so on. When I discovered the pot I was not surprised that it had been a year that he'd been smoking because it coincided with behavior changes. Why the TMI about DH? My point (I do have one ) is I'd be very concerned about mixing pot with illnesses in the realm of mental disorders. After speaking with psychiatrist who works with rehab I'm more aware of how pot does not work the same for those with mental illness as it does for others. Since PAMDAS causes symptoms that appear to be mental illness but are not truly based in that I'm curious how the mechanism in the brain would work. I'm eager to watch and learn something new.Thanks for passing on the info and bringing awareness for PANDAS

Thanks for that Chemar. This is my constant concern- I spent so much time trying to convince the school that my son is not just being a smart ###### by tapping his feet even after being asked not to. Principal refused to take language out of his educational support plan that "Matt will reduce his tics so as not to disrupt class" Grr! I even gave him more appropriate wording but wouldn't change it. His doctor wants it to not be a habit when PANDAS is under control and also feels that abx is not full treatment- therapy has to be a piece as well. Maybe this is why his therapist and I struggle since he honestly isn't aware of them. She wants to use CBT to get him to clench fists rather than slapping thighs but will drawing more attention make him do it more? Also he has been brought to tears with the effort of focusing so hard to control tic that he then can't focus on his work. There never seems to be easy answers with PANDAS just puzzles of sorts.

It was a 2 hour appt. First they do the reg skin testing-no reaction so they then did intradermal (needle under the skin w/ actual solution of possible irritant) and since he passed that they finally just gave him a dose of penicillin. Kim- they did do whole gamut of allergy testing over the past month- only items of note were mold and ragweed. No reactions to anything else. His doctor told me previously that MP can cause a skin reaction/rash when combined with amoxicillin in some kids so she felt it may be the cause. He was then tested for MP and did show evidence of previous exposure. Initially that is all she was going to do but then wanted to be real sure so asked for allergy testing. (all the while I just begged for abx.) I know that zithro is different class of abx than penicllin BUT he had all three different abx in about a 5 day period. I don't think his system knew what to do by the time zithro was tried therefore he had yet another reaction when it was given.

Our PANDAS doctor is insistent that my son be in therapy so as to work on dealing with his symptoms when they do flair up and having strategies to deal with them. I totally agree and initially his therapist focused on his major anxiety issues. These have improved greatly through her work and our follow up at home. The big issue that causes a lot of social and school issues are his tics. He can be very disruptive and we have provided him with a great number of OT tools to help reduce or replace his tics with less disruptive movements. His therapist however has not previously worked with kids with tics. I don't really want to switch therapists as she is the one who told us about PANDAS and led us to a great doctor who diagnosed it. She has been seeking out resources and doing research to try and find good approaches for DS but has told me a few times that if I know of/hear of anything that has been an effective therapy tool for a kid with tics to pass it on. I thought I'd put it here to see if any of you had a positive experience with strategies or therapeutic approaches that help kids recognize when they are ticcing and then reducing or replacing that behavior. Thanks!

We just finished up my son's testing with the allergist yesterday and he showed NO ALLERGIC REACTION to penicillan! Woo Hoo! If you remember our story my son was diagnosed with PANDAS in Feb. had a 10 day course of Amoxicillan then when switched to a prophylactic course of it he began breaking out in hives, switched to straight penicillin- more hives, next zithromax- still more hives. That was in March and doctors would not prescribe abx since then until allergy question was answered. Finally we just finished jumping through all the hoops until we got to penicillin testing and he passed all three parts of test with no reaction. This is such a relief since with each flair up he has been given only psych meds. to address symptoms in lieu of abx. Psych meds varied from no help to weird fluctuations so I have taken him off all for the summer except 1mg Intuniv for tics/attention. Zoloft and Risperidal however are out of his system completely now. I'm so happy to have abx back in our arsenal before he starts middle school in the fall. Thanks to those of you who have offered support and answered questions during the time we were dealing with this and trying to make the best of it.

I too would be willing to write something as well and to help with any other portion of it. I too think that it needs a ray of hope at the end of the stories but also would need to be careful about offering medical advice. I would LOVE to see a resource section at the end for parents- doctors to contact, websites to visit, a bibliography of articles that would be informative. It would then provide a dual purpose for families to see themselves in the stories but also to offer some help or support too. Due to the article about my son in our local newspaper we have heard of an ever increasing number of kids who have sought out evaluation for and diagnosis of PANDAS in our area. How cool would it be to have a book like this to give to these families as they are just starting out on this journey and searching for info.

I got the email blast from Beth as well and I too bristled at the mention of a specific doctor and yet also bristled at the doctor's opinion. Like others have said our PANDAS kids present in so many different ways and to such varying degrees why is it then so hard for both sides to acknowledge that there should be a continuum of treatment options. My ds is not nearly as severe as some stories I see on here so I don't forsee IVIG in our future BUT if things change then I hope I can find a doctor who will look at ALL options. As far as the financial impact of PANDAS...I often wonder how we can start a fundraising campaign that would be nationwide yet carried out locally. I know we are small but I keep thinking of the American Cancer Society Relays or the American Heart Assoc. Heart walks, etc. I have so many friends and family that I'm sure would participate/contribute and it could serve a dual purpose of bringing awareness. Money raised could be funneled into two areas- research and a fund for families who need financial support to get the help they need. I don't have experience in this area other than raising money and participating but I'd be willing to learn and try. Maybe we could organize some group on here to combine efforts and ideas then carry out locally. Am I crazy? I just keep having cross my mind so wanted to put it out there.

My son has had more trouble with allergies than ever in the past. It seems to coincide with since PANDAS onset. Anyway he has been going through allergy testing and so far has shown an allergy to ragweed and mold. Not too uncommon but I've read that local honey helps with allergies so thought it couldn't hurt. We went to a fair tonight, a local farmer had honey so we were going to get some, farmer instead convinced me that Bee Pollen gave same benefit without the sugar intake. Since so many of you use alternative treatments and are more well versed in all of it than me I just wanted to see if anyone has any knowledge about the use of Bee pollen. Also since our kids seem to react weirdly, or are triggered by so many things that don't bother others I just wanted to be sure this won't adversely effect DS. Thanks! Becky

Gosh, this is why I love this board. I came home from the lawyers feeling overwhelmed, overtired(!) and down. My boys are sadly with their dad so I don't have them as my focus right now but after spending an hour doing more research in preparation for court tomorrow, peppered with calls from my parents including one where my dad wants me to fire my lawyer I finally thought I'd give up, take a nap and hope things look better later. But as is always the case I can't be on the internet and not check this board.... Well, I was in tears again but this time because you guys are so amazing. I so appreciate the support and kind, caring messages. Your words were exactly what I needed today! thanks so much for the hugs and support!

This is sort of off topic but I know you guys are the only ones who will "get" this. It is nearly 3:30 am and I have just finished up preparing information for a meeting with my divorce lawyer tomorrow. Unfortunately, the peaceful divorce I wanted seems to not be the way it is going to go. If I could not fight and still support my kids fully then I would but I can't. Anyway, in order to provide lawyer with full picture my mom kept urging me to detail DS's care...I did but boy do I feel like crap. I was not emotional for any of the rest but to detail the extra expense, extra work missed, extra hours put in for doctors, therapy, follow up activities to therapy, etc I feel like the worst mom in the world. I would do all that for him again and more so it just seems wrong to list it on a page like that, as if he were a burden. The tears are of course flowing freely again and I know bed is where I should be. Please don't think I'm so awful, one of my main motivations to finally end my marriage was when my dh started yelling at Matt for his anxiety as if he could simply snap out of it or just stop worrying and escalating. He has not participated in ANY of Matt's care or school meetings re: his condition or to even remember Matt's meds when he is at his house! Anyway thanks for just letting me vent.

Yes, my DS just had this surgery a week & a half ago and he too had to stop his fish oil. I have not restarted either until the 2 weeks are up since I knew it had to do with bleeding and so many of the restrictions are for the same reason and last 2 weeks. Good luck with your son's T&A. My ds has done beautifully with recovery. Day 3 was the roughest as predicted but otherwise he has fared well. I am so glad we had it done since there were "pus pockets" as the doctor put it on the backside of his tonsils that he said were just filled with infection. His assumption being strep.

I'm not going to be much help but will try to offer one thing that I have learned on this board myself.... ASO measures a more recent strep infection/exposure - within approx. 4 weeks anti-DNAse B measures strep exposure more inline with ~8 weeks. Someone else might be able to offer more info or correct my timelines but I do know that basically they are both measuring for strep but but ASO reflects more recent infection.

Is there a way to find info about incidence of Strep and/or MycoP per state over say even the last 5 years? I'm just curious if our results correlate in regards to states with higher infection rates or conversely those states where there aren't any pinpointed PANDAS cases. (yes, I know we are simply going by who is on this board etc but the cluster of states without is rather interesting to me.

I also think that knowledge of PANDAS and willingness to diagnose by local doctors will have an impact on the results. My son and I have been trying to spread information through emails, word of mouth and a newspaper article. Since doing these things I know of 2 more kids with actual PANDAS diagnoses due to learning about my DS and also 3 others who are seeking out evaluation with PANDAS as part of the question. However before this I can say very little was known about it in my area. How you could weigh that I have no idea but it does seem to have an impact.