airial95
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Posts posted by airial95
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I don't have any personal experience with Rogers, but I have heard others report success stories there. As to their approach to PANDAS - Dr. Reimann is there, and he is a well known name associated with therapy specifically for PANDAS. Him and Dr. Storch (currently at Rothman at USF) have collaborated specifically on therapy with PANDAS.
On that note - we have extensive experience with Dr. Storch from USF/Rothman, and he is leaving there at the end of this month to open a Rogers in Tampa, FL to expand their program down here. Storch DOES support abx and other immune treatments for the treatment of PANDAS in conjunction with therapy (and psych meds in extreme cases where self harm/harm to others may be an issue). Many have reported good things about the USF intensive program that he runs - but that is outpatient. We have had good experiences with his group and regular therapy for both of my PANDAS for years now.
That all being said - what starbucksmom has said is unfortunately a broader issue - how the graduate assistants and fellows who do a lot of the day to day work are supervised/trained/etc... Even at Rothman - which is a PANDAS research facility - folks have encountered the occasional grad assistant/fellow that either dismisses PANDAS, pushes for psych meds prematurely, etc... I'm beginning to think that it's an unfortunate problem in many places.
- MomWithOCDSon and khodge
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There are apps that help you interpret the raw data, I'm sure someone here can suggest one or more.
But on the other side of the coin, we have specifically NOT done this testing because of the privacy issues and fear of what they will do with the data, like LLM pointed out, even taking precautions it is still disturbingly easy to track people down, but that's not even our biggest concern. My issue is that the company is owned by Google - who is renowned for it's data mining/sharing practices. Just don't trust it personally. While I'm not a fan of the FDA, but I also share their concern with accuracy in reporting - considering I don't trust Google, I have a hard time trusting the end product. But that is our personal choice, and opinion. I know that the info has helped lots of others and the decision all depends on what specifically you are looking for.
We tested for MTHFR mutation through LabCorp - which insurance even covered, so we were able to get that information else where.
Again, this is NOT any sort of judgment on those who have or haven't done the testing, I have even recommended to others to do it when looking for answers to things that I know this test has helped others uncover. It's just our own personal choice that we have made as it regards this particular test.
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It all depends on the child's triggers. My kids, like LLM's don't react to viruses either, they have had the flu, colds, etc... with no blips in PANDAS symptoms, and while they rarely get fevers, like missmom mentioned, all symptoms would temporarily go away. However, my kids don't react to all bacterial infections either - just strep. Both kids have had multiple bacterial infections, including myco p which is big trigger for some - with no effects.
Keeping a detailed log or journal of PANDAS symptoms as well as other illnesses/exposures can help you determine what your child is/isn't reacting too. Considering we never had elevated titers on ANY labs we ever ran, our logs were the only way to definitively tell what was going on. We used a numerical scale that we could graph to quickly see patterns. (Hubby and I are both engineers...can you tell?)
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I would say yes, my kids are 100% symptom free between infections. Do they still get strep? Yes, and they still react to it, but not as severely as they have in the past. They will flare for a couple of weeks, but remain functional and able to continue with day to day activities - including school, sports, playing with friends, etc.
They do not get strep as often now, they tested + just last week for the first time since December, which is a record for us (used to be one or both of them would be positive every 6 weeks or so). The symptoms leading up to the swabs were so mild, we scheduled an apt for my day off last Friday, vs. Tuesday when we first suspected symptoms. And both kids continued with VBS all week with no issues other than my son being a bit hyper (although the sweets shared daily didn't help that), and my daughter being too nervous to perform with the group at the end of the week (which she never enjoyed even pre-PANDAS).
Even when we are symptom free, we are always on our toes, looking for signs or symptoms and like I said, flares now vs. 2 years ago are night and day in their severity. Now it's more of an annoying inconvenience than the life altering ###### it used to be.
*Edited to add: I will also say that both of my kids have benefitted immensely from CBT for their OCD. My son's onset was at 19 months old/diagnosis at 26 months old - so the OCD really became "normal" for him at an early age - like washing your hands after using the restroom, you don't even think about it - it's just what you do. The CBT was a huge tool in helping us get to 100%. Without it, we would likely still be living with residual, habitual OCD ruling the roost and probably still looking for causes. The biggest thing the CBT did for us though was teach my husband and I how to properly respond to it so we weren't enabling it or making it worse. That was a HUGE benefit. My son is now 6, my daughter is now 8 and both do very well with the CBT techniques that we have learned over the years.
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What does your son have to say about it? Sounds silly, but considering his age, going off to college, etc... his input should be taken into consideration. If you haven't already, it would be a great way to open a discussion of what he needs to be aware of on the PANDAS front now that he is going to be taking care of himself.
- MomWithOCDSon and MaryAW
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I have 2 PANDAS kids, my son's onset was at 19 months/dx at 26 months. More than 2 years later, his older sister, at 5 1/2 years old had her onset. If I have learned anything over the last 5 years, it's this - every single child presents differently, even children from the same family.
When my daughter had her onset, she would be 100% symptom free with a 30 day course of cefdinir (penicillin allergy) and nothing more - didn't need long term abx, nothing. Abx took less than a week to "kick in".
My son, however, would take up to 2-3 weeks before we would see improvement, and it would take longer to see any real recovery during flares. They presented like night and day.
2+ years post onset however, the plan that always worked with my daughter (30 days abx) stopped working and we had to resort to other options (combo abx and IVIG).
The point being - just because one child responds a certain way to treatment doesn't mean the other will respond the same way. Not only are their responses to treatment different, their symptomology is also vastly different - my son has more tics and compulsive behaviors, and my daughter has more anxiety and intrusive thoughts.
Night and Day - but both have the same triggers.
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It is always hard to distinguish, especially when they're young because so many typical PANDAS-y behaviors are considered "developmentally appropriate". Like I said, our son was only 2, so people tended to dismiss his issues as being "normal", a "phase", or just a bad case of the "terrible 2's". However, we knew (and fortunately our wonderful pediatrician and day care director did too), that it was far more than that. It was like his "terrible 2's" were on anabolic steroids!
We developed a "test" early on to distinguish what we called "PANDAS vs. punk" behavior (ok, it was more like a coping mechanism - but hey, you have to do what you can to survive). I wasn't proud of it at first, because it went against EVERYTHING I believed in as a parent, but it worked. And eventually we shared the technique with one of our behavior therapists and she thought it was great and started sharing it with other parents.
We called it the "wanna cookie" test. (My son was young remember). When he would start to have these uncontrollable rages and outbursts, we would offer him a cookie (or candy, ice cream, toy...whatever was getting his attention at the time) if he would settle down and do as he was told. I know, horrible parenting - BUT - what we noticed, is that when it was truly a PANDAS issue, the offer went completely unnoticed - he didn't care. When it was just age appropriate nonsense, he acknowledged that we were talking treats. Sounds silly, but it helped immensely. Based on that we were able to detect other signs of it being PANDAS behavior (dilated pupils, excessive drooling) that we could use in the future.
I know, offering your kid a reward to stop unacceptable behavior should have my parenting cared revoked, but it actually worked.
We still use it now that he's older, but instead of a reward it may be losing a privilege like screen time. If he protests the restriction, we know he's just being a punk, if he doesn't care one whit - we know its something more going on.
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My son was very young at onset, only 19 months old, so differentiating between ODD/OCD and typical "terrible 2's" behavior was always a challenge.
But one of the things we noticed particularly about the ODD was almost a compulsion to disagree or do the opposite of what he was asked. A good example of this would be simply choosing what cup he wanted to use with for his drink - if you would ask him if he wanted the red or blue cup, he simply couldn't make a choice, not because the choice was difficult, because we were asking him to make a choice. If you asked him directly if he wanted the red - no, okay then the blue - no. The over-riding answer was always no.
My son is 6 now, and has a better understanding of how his PANDAS affects him than I could imagine for his age, he has since described to me how hard it is to do things he's asked to do, even when it's something he WANTS to do. To go back to my cup example, he would tell me that he would really want the red cup all along, but because I was asking him if he wanted it - he "had to" answer "no."
Not sure if that helps, but it helped us to understand it better.
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We had a similar issue, my son has been on multiple abx consistently for 4+ years now. Last year, I went to the pharmacy to pick up a refill and our pharmacist told me the insurance company had given them issues, denying the refills that they had previously been approving. I don't know what our pharmacist did/said, but she told me she was on the phone with the insurance company and our doctor all day fighting the insurance. In the end, we got our abx and haven't had a problem since.
Wish I knew more of what she had said/done, but she left our local pharmacy to work over at the cancer hospital
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My son started on azith at 26 months old for his PANDAS onset. He was on it for 11 months, then switched to cefdinir for 9 months then Augmentin for another 9. He eventually started an Augmentin/azith combo about 2 years ago. He has been on azith ever since (in combination with rifampin/cefdinir currently). We do annual heart checks, but he is also on vyvanse for his ADHD so that is why the doctors are concerned. We have not had any issues with the azith. My son is 6 now and doing very well.
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We have experienced this with my son when we had to give him steroids. It would last several days after his last dose of steroids. He just wouldn't sleep. His PANDAS symptoms would be completely gone - but he just didn't sleep. We no longer give steroids at all unless ABSOLUTELY necessary, but after 5 IVIG's, he doesn't even get any side effects anymore, so its not a problem.
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I found using a numerical scale helped keep the emotion out of it. If I had a bad day at work, or was particularly stressed or in a hurry, his compulsions/fits might seem so much more severe in the moment because of what I was feeling. But when I was forced to rate how he was overall that day - it took that factor out of it. We created an excel spreadsheet that we used to graph patterns by symptoms and daily "scores" - it made many patterns jump out at us. The main thing we noticed, was that with continued treatment, and CBT, our flares from subsequent infections were always slightly less severe than the previous one. If his "daily score" during his last flare was in the 70's, the next time around they were in the 60's, next one was 50's. So each one became more manageable. It also gave us a boost of confidence to see that what we were doing was working.
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Keep a daily log of symptoms and rate them every day. We used a 0-9 scale (0-3 being somewhat normalish, 4-6 being very difficult, 7-9 being non functional) This way you can track improvement/backslides objectively and can quantify what is working/not working. We often wondered if it was really the abx or him just growing up and maturing but when we would look at our logs it was unequivocal that he wouldn't have improved without the abx. The log also helped us identify patterns associated with new infections and exposures that have been invaluable as well.
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Dr. T was specifically asked last weekend at the conference if PANDAS/PANS was really all caused by Lyme disease - he said unequivocally no. He said that PANDAS/PANS - regardless of the trigger - still has a very narrow diagnostic criteria that does not implicate Lyme specifically. Can Lyme cause PANS? He said yes, but that it is not the majority.
We have ruled out Lyme with Igenix (tested 2x) and have no reactive bands whatsoever. So it is absolutely possible to have PANDAS/PANS with no Lyme.
That being said, it is always good to rule it out, however, don't let the FB group scare you. There are several other FB groups out there for PANDAS/PANS support - all discuss Lyme, however some are less "scare tactic" than others.
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My husband and I always tested negative for strep when we would get tested (ad nauseum) over the years. When we saw Dr. B for the first time, he ordered full labs on all family members and lo and behold, my husbands titers were through the roof. He was treated, and sure enough, my son saw his chronic re-curring strep infections start to resolve.
Another place to look in the family is the pets - they too can carry things that trigger our children.
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I too wasn't very impressed with Dr. Niccolades presentation, she did seem to push psych meds indiscriminately, however, one thing that she said made sense, and even Dr. T somewhat agreed with it. Psych meds may be absolutely necessary if you are in crisis mode (when the child is a danger to himself and others). My son went through his worst crisis stages (rage, etc...) as a very young child, so we could still control him. However, when he is 15, 6' and 170 lbs, I could see where we may need to resort to something to keep him safe until we can get the PANDAS treatments on board.
The reason that struck me is that we all often shy away from these types of drugs (rightfully so) forgetting that there may be short periods of time where they may be needed in order to even GET the child the appropriate PANDAS treatment.
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Lots of folks report at "turning back of pages" - or slight regression post IVIG, so that is what the behaviors you may be seeing are. Keep him drinking for the next few days too, it always helps!
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We did not use any of their products either, it doesn't matter. They will still send you the kit, and like I said their patient advocates are great. They even called me back after each child's first infusion to just check in and see how they did. It was so nice. And they really did give lots of helpful tips (many which are shared here - like hydrate, benedryl/motrin pre-med, etc...)
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Yes, it can be as simple as she was around somebody with strep and it triggered an immune response. When my son gets these "miniflares" they usually last 3-5 days. Loose teeth and dental work can also cause these types of flares (releasing strep bacteria from the mouth into the blood stream).
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We have all been there - waiting for the other proverbial shoe to drop. I know how it feels. The thing that helps me the most during these times is to go back and look at my logs/journals from the past. It gives me an instant pick me up that we HAVE come so much farther than I give us credit for sometimes. If you're not keeping logs/journals of their daily symptoms, I highly recommend it - it can help with treatment plans/options, letting you know quantitatively what is working/what's not, it can help you and your doctors see patterns in flares, etc... but it can also be very helpful in giving you that boost of self esteem when you need it most to see just how far you have come!
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Baxter pharmaceuticals has a free play therapy kit for kids for IVIG which includes books, magazines, even a bear with a practice IV kit so they can prepare themselves for the procedure. It's free, and was a real help for my kids. Their patient advocates are excellent too and may be able to offer you more tips. They gave me some great advice going into our first IVIG last year.
http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html
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We were never given an autism diagnosis, but only because we had an amazing pediatrician who recognized the PANDAS right way, and at a very young age. PANDAS in a toddler (my son was 19 months) can look startlingly like autism. Parents who don't have attentive pediatricians, or go to large practices and see whatever doctor is in that day could easily be dx with autism based on that single visit that day. Fortunately, we are in a small, single doctor practice, and he has been seeing my children since the day they were born, so he was able to more clearly see the regression, the severity of it, and the suddenness of it's onset (hallmark PANDAS trait). Because of that - he suspected PANDAS first, but acknowledged that autism, particularly aspbergers as my son got older, was still a distinct possibility.
I am happy to say that my son is now 6 years old, and a bright, gifted kindergartener, who shows no traits of autism whatsoever. Treating his PANDAS removed ALL autistic symptoms he was experiencing. When in a flare, some do come back (particularly noise sensitivities and behavioral rigidity - inability to transition between activities/tasks) - but they are always temporary and resolve with treatment for the infection/flare.
I firmly believe that there are LOTS of kids that are misdiagnosed autistic when the problem was really PANDAS. My son's was triggered by an impetigo infection - so we knew where it started, but after dx, we realized that he is completely asymptomatic to strep throat - meaning he gets no fever, sore throat, nothing. The only clue he may have strep is an increase in his PANDAS symptoms, so it is very easy for doctors to "write off" these issues as autism and not suspect PANDAS, especially if the child is like my son and has no physical symptoms of strep present to make them suspicious.
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We were ultimately referred to Dr. B from Dr. Murphy in Florida after working with her for 2 years. Our son's labs were maddeningly normal - all the way around - yet he was getting strep every 6-8 weeks (dropped to every 10-12 weeks post T&A) so just as we were seeing improvement from flares - BAM! Positive again. The local immuno was willing to order IVIG on Dr. Murphy's word, but we all felt it would be like throwing deck chairs off the Titanic if we couldn't figure out where the strep kept coming from. (We went to ID that Murphy recommended and she was about as useful as an inflatable dartboard). Turns out my husbands strep titers were through the roof too - and while the whole family got swabbed every time my son got strep, the grown ups always came back negative.
He tested for Lyme first with the Western Blot (which to our surprise came back +), but then ran Igenix and co-infection testing and it came back negative across the board - not even a single band showed up + or IND. We ended up running Igenix a second time on my son just to be sure, with identical results. So Dr. B really does dig into Lyme well, and works closely with an LLMD for the tougher cases.
We ultimately started IVIG with him, and it has made a HUGE difference in our son. We're now doing it regularly with our local immuno (when Dr. B went through the updates to his infusion center last summer, we switched because our infusion was pushed back and we didn't want to wait.) But he really made a HUGE difference for our son.
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The real answer is - there is NO consensus. Some of the experts listed acknowledge that Lyme and other infections can trigger PANS, but that's about it and don't screen for it routinely at all, still others will do routine testing for Lyme, and stop there. I think that as for the doctors listed, Dr. B is the only one that will do Igenix testing for Lyme as a standard course of action (even if there isn't reason to suspect Lyme - he will still run it as part of his standard diagnostic labs). Even Dr. T - who really digs deep for triggers - runs only the standard Western Blot unless specifically asked (or labs indicate a need) to run something more specific.
The unfortunate reality of this disease is that it is still far to "young" of a diagnosis and research is still needed for that consensus to be reached. Research, unfortunately takes time - which is what sucks the most for our kids, because in a way they are "experimenting" on them in the meantime. At this stage in the game, as more is learned, sometimes it makes things more murky than anything. When we first started on this journey 4+ years ago, strep was the only thing that was considered to be a trigger for PANDAS. Period. Most of the experts listed above even refuted that myco was a trigger. As research has shown that other infections - including myco and Lyme - can actually trigger this condition, I think it's made it harder to come to one clear path of treatment. The path to treatment may actually be different based on the trigger - and there's still a long way to go research-wise to figure that out.
I know I'm on an island with this one, but I don't think Lyme and PANS/PANDAS is as linked as everyone else. I still see them as two completely separate and distinct issues. Can Lyme trigger PANS - yes, absolutely, as can any other bacterial/viral infection. However, since Lyme can also cause many of the same neurological symptoms on its own - absent of the PANS immune response - the question becomes how do you know which you're dealing with if there was no sudden onset? It's a question I always seem to get yelled at for asking, but it's one that I still struggle with.
Western Blot
in PANS / PANDAS (Lyme included)
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Yes and no, it's a place to start. A + on the standard WB that your PCP orders from Quest or LabCorp in most cases would mean yes to Lyme, however, a negative doesn't necessarily mean you don't have it, and then you need to look further.
Insurance will cover the WB from Quest/LabCorp that your PCP can order, so it's not a bad place to start, as long as you are aware of the inaccuracies associated with a negative result. Igenex and other testing companies are not always covered by insurance, or you may be able to get reimbursed after the fact.
If you're kid is okay with blood draws, it won't hurt anything to do the standard WB first, but you may still need to order further testing.