airial95

I have always found it interesting that the most common advice for family members of older folks is that if thy have any change in personality or behavior - to get them into their doctor for a full medical work up, but in our children, it's get them to the psychiatrist/pharmacy!
 
Oh, and by "interesting", I really mean infuriating...

I have always found it interesting that the most common advice for family members of older folks is that if thy have any change in personality or behavior - to get them into their doctor for a full medical work up, but in our children, it's get them to the psychiatrist/pharmacy!
 
Oh, and by "interesting", I really mean infuriating...

We had this problem with my kids. Whenever anyone in the house (non-PANDAS) would test + for strep, our pediatrician recommended a 30 day course of abx minimum (if the adult doctors wouldn't write it, he would). It seemed to keep them from tossing back and forth a bit. And an additional "side effect", my dd was non-PANDAS at that time, although she eventually did have onset about a year later. When she did have onset, her symptoms were very mild and for almost 2 years cleared easily with a 30 day course of abx.

Update 3.5 years after initial onset....dragging up a really old thread....
 
My DD had another episode one year after the first one. She was sick about one month before it hit (intestinal thing - throwing up, which she rarely does, but did with her first round of PANDAS, really odd, toxic-smelling gas). Both sicknesses were springtime. Again, the onset of symptons were sudden (can pinpoint the evening), but they didnt manifest as classic OCD as the first round did (perhaps because of the CBT, DD had more knowledge/was trying to supress symptons ?). She was watching a movie, and couldn't follow the plot without tons of (repetitive, irrelevant) questions about the background of the storyline. Repetitive, irrelevant questions seemed to be her thing this time. Her grades also dropped since she couldn't concentrate, but she only had one month of school left, so we just rode it out.
 
We returned to our DAN doctor, who prescribed high doses of antibiotics. Our daughter developed an aversion to needles during her first round of PANDAS. Our doc prescribed the antibiotics without a blood test, fortunately. We also returned for a short cycle of CBT. Thankfully, this round we were prepared and it didn't send us into a tailspin as the first episode did. Within 4 months, with the start of school, DD was pretty resolved by then.
 
We made it through the following 2 springtimes without exposures/recurrances. I realize our case is quite mild and clear cut compared with what most of you are dealing with. We suspected PANDAS and were seeking treatment for her within 5 days of her first onset. I owe a big thanks to this forum and it's resources. We could not have started so early without the google hits that led me here initially. I will always be grateful for all the information you share so openly.
 
I skimmed a bit of this forum - I so amazed at the new treatment paths that you parents have forged in just the past 3 years (genetic testing, supplements, etc.). Though PANDAS has been on a backburner for us for a while, I do hold those of you in the trenches in my thoughts and prayers; I wish you all the best.

Yes, my son's symptoms got much better during a fever but then would explode once the fever broke. For my son, his tics come when he's trying to detox and can't get the job quickly enough. The tics, for him, are a response to "poisonous" toxins released by dying bacteria - they seem to effect his nervous system or somehow interfere with the signaling between neurons that control movements and cause tics. When he's not fighting anything or is fighting an infection in a way where his waste disposal system can keep up with the toxins in the body, he has no tics.
 
If this were also true for your DD, it would make sense that tics would come after a fever broke because that would be the time where toxins were at a peak - like bodies littering the battlefield at the end of a battle.
 
I'm sorry you're striking out with your local doctors. I had the same experience. By the time a condescending neurologist agreed to run an ASO for me (he'd never heard of an antiD-Nase B test and looked at me like "you read too much on the internet") - my son was 6 weeks past his positive strep swab and his ASO was normal (ASO peaks @ 3 weeks). He then dismissed Pandas even more than he already had. The experience led us to a Pandas specialist 10 hrs away. It wasn't fun doing all that traveling, but it was worth it to get my son on the path toward getting better.
 
I do personally think that "traditional" OCD and Tourette's are very different than Pandas. I believe each have a medical cause but I don't believe infection is the universal or only cause. I've never heard a Pandas specialist say it was all Pandas either. But the thing is with "traditional" OCD, the average age of onset is 10. And someone with traditional OCD has periods where symptoms wax and wane, but rarely do they have periods where symptoms are completely gone. Pandas kids do have periods where there's no OCD, no tics. The second distinction is that Pandas kids usually have a "saw-tooth" pattern of symptoms. They spike almost overnight, out of nowhere, and then slowly dissipate once you treat the infection. In traditional OCD, symptoms tend to build up/wax gradually - the person can feel it getting worse over a period of time, usually not "overnight".

Herein lies the problem.....too many kids with PANS, too few doctors who know how / are willing to treat. They get overwhelmed with patients. Dr T tries to see everyone quickly. You must wait months to see a couple of the others. None of the others are available for the volume of phone consults as Dr T. He takes on too much, out of the goodness of his heart. His office staff leave something to be desired, as we've heard and I've heard similar complaints about the other's staff.
 
We all need doctors available now due to the nature of our children's illness. There aren't enough docs to go around and have it now, unfortunately. I encourage every one to continue to search locally for help. It has taken me three years and many dead ends, but I finally found someone willing. Now I'm not under even more additional pressure worrying about contacting my doc and will she/he get back to me. Keep looking while you are using one of the big names and maybe you will find that needle in the haystack.
 
I would also like to remind everyone that any doctor who is treating PANS is sticking his/her neck, reputation and medical practice on the line for our children. We cannot afford to lose one of them.

Be cautious of some Omega supplements however, because some also have Omega 6 and 9 which can actually CAUSE inflammation in some folks (According to Dr. M).
 
We have talked to our doctors repeatedly about long term dosing with ibuprofen. We do quarterly CBC labs to check organ functions, but basically have been advised that as long as we don't exceed the recommended daily dosage for their weight, long term use can be managed safely.
 
We use it daily, but only 1x a day (in the morning), and may give a dose later in the day if needed during a flare.

Strep doesn't cause inflammation - my very simple explanation (that I give to teachers and strangers) is that its the immune system's attack on the brain that is causing it. I relate it to someone repeatedly punching you in the arm non-stop for days and weeks on end...eventually that constant attack is going to cause inflammation/swelling at the site of the attack. Same thing with PANS.
 
Is it really more complicated than that - absolutely. But folks seem to understand that analogy. And if your doctor is saying the PANDAS/PANS is not related to inflammation, then they don't have a very good grasp of the basics.
 
Our "wonder drug" is actually ibuprofen. It can pull my kids back from the brink during a flare and keep them functional. We also try to boost their diets with Omega 3 and foods that are natural inflammation reducers (fish, blueberries, etc...)

My son has often tested positive for strep even while on abx. He has tested + while on treatment doses of Augmentin, Azith and cefdinir individually, and also while on 500 mg Augmentin 2x day AND 250 mg Azith 1x day (he was 4 at the time and about 35 lbs). At that time we added rifampin and he has done well on the triple combo.
 
I see that even the ped agrees that it's likely strep - but another thing to remember is that many PANDAS kids also react to others around them even if they do not get infected themselves. Since it's the immune response to strep causing the problems, any exposure to strep can trigger the immune response, even if they don't catch the bug themselves. And exposure to strep can happen 24-72 hours before someone even comes down with any physical symptoms (sore throat, fever, etc...) My son was the proverbialy "canary in a coal mine" and would start to flare 2 days before we would get the first notification - fortunately, if he managed to not get re-infected, those flares only lasted about 5 days before they began to subside...but they sucked none the less.
 
We have it written into both kids 504 plans that they are allowed excused absences when there is strep prevalent in the classroom and make up work is allowed during that time. We used that twice last year in my daughter's class when strep was epidemic (3-4 cases/week it seemed!)

We have a phenomenal pediatrician that is our primary go-to guy named Dr. Friedmeyer. We have also been to Rothman and seen Dr. B in CT for IVIG.
 
I just noticed that you're in JAX, if you're on facebook, there is a Florida group at www.facebook.com/groups/FloridaPANDAS if you're interested. I think there are others from JAX on there as well.

I'm going to offer a differing opinion. My severe PANDA boy is only 5 now, but my husband and I have often discussed that when in a flare, our biggest fear for our son is that he will end up being the next "Columbine kid". Even at a young age, it's something that we have feared is possible for him. As for the meticulous planning, absolutely could be OCD. My son will work out topics he is interested down to the most minor insignificant minutiae when he is in the throws of a flare (of course, not about something like this). The real unknown is would they actually carry it out - or is the OCD satisfied by just the planning? If you've never read the book "Triggered" - I recommend it. It's by a college kid who has pure "O" OCD - just obsessional thoughts, and many of them are violent. It provides insight into this type of OCD.
 
That being said, we have been treating PANDAS for 3 years now, he just had his first IVIG and is pretty much at 100% (a few blips the last few days with 2 loose teeth, but that's to be expected.)
 
If we hadn't had treatment early like we did - he would likely be institutionalized now. And yes, when healthy, my son is the most non-violent, easy going, empathetic kid you will ever know. When he flares, a switch flips - and you can see it in his eyes that he's just gone. It's scary when it happens now, at 5 years old, I'm terrified of what that is going to look like as a teenager.
 
It's hard for me to acknowledge that we have carried these fears for our own child, but it's the truth. We no longer have those fears as badly now that he's responding so well to treatment, but they were very real.
 
It's unfortunate that something like this is going to be associated with PANDAS now (like the Newtown/Aspberger's connection) - but we are using this to open a dialogue with our PANDAS kids (ages 5 and 7). We are using it as an opportunity to reinforce the therapy techniques that they have been using to help with the anxiety (and for my son, the rages), and to highlight that while PANDAS may be the reason they act out and do things that they really can't easily control - there are still very real consequences to those actions, as this young man is finding out.
 
We are also going to try to use this as a stepping stone to try to get local coverage of PANDAS from our local TV/News. Always looking for the silver lining.

Resistance to rifampin develops quickly if not taken in combination with another antibiotic.

I was just thinking that someone needed to post a HAPPY MOTHER'S DAY on the forum and found it had been done--
Thank you Heather --beautifully said.
I would like to add--
 
 
PANS Mothers
Thank you for lending me your courage over these past four years--
for staying up with me on late nights
when I compulsively tried to find the key,
the solution to this sudden onset disorder, which was entirely disordering our lives.
 
Thank you for being there for phone calls --
listening and letting me listen,
lending an ear, an hour, to understand, counsel and encourage.
even when we had never met face to face.
 
You were there when I reached out.
Thank you for reaching out through this forum --
for sharing your experience,
your observations,
your insights
which compiled to be a testimony about the PANS experience
(has anyone else noticed more then 100,000 posts on PANDAS/PANS!)
 
We have told our story together,
the compiled evidence of lives changed, hurts healed, and research validated in the stories of mothers, and fathers, and their children.
Thank you.

Dr. M is great for getting a diagnosis, but her treatment plans are very conservative. She is primarily a researcher, and has published boatloads on PANDAS. She's currently involved in a couple of abx trials for treating PANDAS. As such, she has to be careful how she treats patients. For example, my son is classic strep trigger PANDAS. He responded well to abx, but we could never get to 100% b/c he was constantly getting re-infected. She thought IVIG might help him, but b/c he presented with NO immune deficiencies (healthy as a horse...on paper), she was reluctant to order it b/c it isn't in line with her research. I understand that might jeapordize her funding. But she has several fellows on staff, most are pretty good, and they are pretty responsive to emails. She is local for us, so she was our obvious first choice, and she also took our insurance. We see doctors over at Rothman for CBT therapy - and have had great success with that too, and the therapists we work with all understand PANDAS from working with Dr. M.
 
We also see Dr. B, he did Lyme testing through Igenix multiple times for us (all negative) and we recently did IVIG with my son up there with great sucess. We found that when we flew up for our first appointment, he was running a bit late (about a half hour or so), but when he saw us he was very thorough and took his time with us. The follow ups have all been via phone, and are not covered by ins. Those, I feel, are more rushed, and I'm often reminding him of specifics of my son's case, which I'm not a fan of. The last phone consult, however, we did with the PA. She was wonderful, I didn't feel rushed, and I felt like she was prepared and had read my sons file prior to the call.
 
We are fortunate to have an amazing pediatrician who is very PANDAS friendly and gets us in for strep checks and gives us abx as needed to manage flares/symptoms. He was just not comfortable pursuing IVIG for us. But now that he has seen how my son responded to it, and has copies of the medical records, we may do IVIG locally in the future - for now, we are doing it up at Dr. B's - he also got it covered through our insurance, which helps offset the travel for us.

Steroids are a tough one. They tend to work temporarily for PANDAS kids because they suppress the immune response causing the inflammation in the brain, as well as reduce the inflammation in general. However, steroids can also have a negative reaction in many kids - PANDAS or not - that include hyperactivity, rage, and even psychosis. This is why we never chose to try steroids to treat our kids' PANDAS. I didn't like the risk of the side effects. (Although - with our son's most recent IVIG - we did have to give in and give prednisone to counteract some of the side effects of the treatment...fortunately, there were no ill effects).
 
If it is PANDAS - it may take trial and error to get the right antibiotic. We used Azith first, and while it didn't do much for my son's tics (grimaces as well), within 2 weeks was saw significant improvement on all other symptoms. The only thing that eliminated my son's tics entirely was getting his tonsils/adenoids removed - and then they returned with a subsequent infection. When we tried an Augmentin/Azith/Rifampin antibiotic combo - it eliminated the tics entirely (which by that time had evolved into a full upper body shruggy-thing) and they haven't returned post IVIG.

He'll likely draw blood right there in his office, so you may need to prepare for that. He is very thorough, he'll take a full history, and take the time to understand what is happening with your child. He sometimes runs behind (which I don't complain too much about because when he's with you, he takes his time and doesn't rush to get back on schedule, so it's comforting to know he takes that time with everyone.) so you may want to make sure you have something for your child to do if you are stuck waiting a while.
 
He may also ask to draw labs on the whole family, he did for us.
 
Good luck, my son liked him, and we just were there last month for our first IVIG - which has worked wonderfully so far!

I thought I'd share our story briefly, I know in the past there have been several posts about the "turning back of pages" after IVIG, and things getting worse before they get better kind of thing. Quite frankly, they scared the bejeezus out of me! We were reluctant to try IVIG, partly because our son was so young, and partly because I felt until we got a handle on WHY he was getting strep so often (every 6-8 weeks), IVIG may be premature.
 
Well, about 4 weeks ago we went up to CT to have our first IVIG with Dr. B. He was 2 at the time of dx, and is 5 now - so we thought the time was finally right. And the results have been nothing short of a miracle. We have not seen any "turn back the pages" or anything like that. In fact, with the exception of about 12 hours of headaches and vomiting (which happened through the night, so he slept through most of it off and on) - it has been a wonderful experience for us.
 
The highlights - since IVIG our son has:
 
- gained 3 lbs and is eating regularly (and then some!) with little/no anxiety about his food
- is joining us at the dinner table at meal times and eating with us; even engaging in and initiating dinnertime conversations
- is joining and asking to play family games instead of playing video games
- is playing video games less than 2 hours a day (down from every waking moment!) and is asking others to play with him, and not getting upset if they beat him
- brushing his teeth and showering on his own
- more talkative and interactive when people are talking to him
- has gone outside to play with friends of his own free will
- has asked if his friends can come over to play
- is reading books of his own free will
 
 
The best by far, however, was the other day, when he curled up next to me, gave me big hugs and kisses and said "Mommy, I have a secret, I really DO love you and Daddy. I know sometimes I get angry and say that I hate you guys, but it's not true. Harvey makes me say that (his OCD). I really DO love you guys just as much as Millie (our dog)."
 
We still have some ritualistic OCD around medicine time, and he's not getting dressed completely on his own yet, and we still have some trepidation about socks and shoes (although, since IVIG he has told me that the reason is he just doesn't like the socks I buy, can we get new ones. An improvement from the screaming fits and having to put them on and off multiple times before its "right") - but overall, we are about 95%+ better. And I couldn't be happier!!!
 
Thought I would share our positive experience for others who are considering or going for IVIG soon.

We tried the spray, but my son didn't like it. We also used the cup - it's called the Oralflo cup for anyone interested. sometimes though, the pill would get caught if the sippy part of it wasn't completely dry - which was a challenge if more than one pill needed to be taken at a time. (we used a hair dryer to dry it out if needed).
 
Within 3-4 months of using the cup, my 5 year old decided he could swallow pills without it, and has been doing it ever since - even swallows those horse Augmentin pills and multiple pills at a time.
 
It really was very helpful.

We got back to 100% for the first time in 2+ yes with tonsillectomy. It was immediate and wonderful - like beeskneesmommy said, abx prior, during and post-op.
 
Unfortunately, it wasn't a permanent fix for us, our son got strep 6 wks post op and we were back to square 1.
 
But I would do it all over again.

My 5 year old is video game obsessed - particularly play-station. We have used it as a tool rather than a crutch. We have also had numerous discussions with our ped about the pros and cons, and he's indicated that more and more studies are saying that kids with autism like symptoms can actually BENEFIT from video games. Here were some of the things we came up with:
 
Pros - it has DRASTICALLY improved his fine motor skills. This was a kid who refused to color because he was so far behind, now he's on par with his age.
Cons - it does wholly engross him and is a fixation. Tough to get him to go do something else.
Pros - it wholly engrosses - when in a bad flare, this can be a lifesaver!!! It can keep him from rages and fixations on things he can't control.
Pros - we use it as an incentive. For example - getting dressed in the morning is always a big deal for us (sensory), he is not allowed to play video games in the AM until he is COMPLETELY ready for school - that means, dressed, socks and shoes (BIG deal), breakfast eaten, teeth brushed and all meds taken (even BIGGER deal). Some days it's not much of an incentive (when things are bad) - but we hold fast, have even put him on the bus kicking and screaming becuase he didn't get everything done in time to earn any VG time. This works for other high anxiety times of the day as well (ie meal times) - VG's get turned off until he does whatever task is at hand. So rather than restrict it (which I think would work for older kids) - we make him earn time.
Pros - we used earning a handheld as an incentive for taking meds when this was at the height of anxiety for him (he would vomit at the thought - literally). He would earn a star for each med/supplement he had to take throughout the day. When he earned 200 stars, he could get his PS Vita. He was so proud of himself every day for overcoming his anxiety to earn his stars - it really was a good incentive.
Pros - we have adapted "themes" from his favorite video games into everyday life to help with tasks. For example - every one of his supplements/meds are named after a weapon in his favorite game "Ratchet and Clank", it was a great learning excercise too, because we named each one based on what the medicine does for his PANDAS. For eample - rifampin = RYNO, the RYNO is the mega weapon that wipes out everything with one shot - the rifampin is the big guns hoping to wipe out his strep. The melatonin = cryotizer (freeze gun), because it "freezes" his brain to help him sleep. Motrin = Mr. Zurkon, the friendly robot that follows you killing bad guys as the pop up - but only if you need him to.
Pros - he's learning, even when they're not educational games. It's helped alot with his reading and problem solving skills too. You should see him figure out a challenging level. He has even thought to ask us to google for tips to find things around the game (gold bolts, hidden items, etc...) And on a multiplayer game recently, he figured out a plan, splitting up tasks among the two of us to achieve the goal - and it was complex - something I wouldn't have expected out of a 5 year old (heck, I couldn't really figure it out myself!). And many of the games have a lot of text to read - far beyond 5 year old reading skills and comprehension - yet he does it no problem.
 
For us - the video game fixations come and go. It's really only an issue when he's in a flare. We can tell things are starting to get better when he asks me or his sister to play with him, or offers her a turn entirely. When he's not in a flare, he'd rather be outside or playing something else - will go days/weeks without any video games. So we don't worry too much about it when he's in a bad place. It's a coping mechanism, and we allow it as best we can. We do try to force him to take turns on the TV with is sister, so she can watch some regular TV here or there (otherwise it's nothing but VG's) and that's a good CBT/ERP thing when he's bad, he has to wait til the timer dings before it's his turn again - live with the anxiety of it.
 
It's tough - because it goes against everything we (DH and I) believe as parents, but we're not dealing with normal kids, so we have to abandon some of our ideas of how the world should work! Hope this helps.

LLM - I tried to use the "Like This" feature but was told I had "reached my quota of positive votes for the day" (eventhough it's the first attempt at hitting like!). Not a good start to postiivity!!!
 
But I would like to riterate your point about using phrases "in our experience", "something to think about", etc... it's something I always try to live by!! I'll also add that if I'm going to insert a differing opinion, especially one that may be "controversial" - I'll preface it with something like "some my not agree", or "this might not be a popular response" to highlight that I am not trying to be negative - just offering a different point of view. I feel it has gone a long way to helping keep discussions civil.
 
And ditton on the FB group - we're all just trying to hlep our kids out! Disagreement can be healthy, as long as it's repsectful!!!

I would also ask that the respect work both ways - for those of us who are not dealing with lyme, respect should be shown for our decisions/approach as it relates to how or why we have ruled it out without judgement.

LLM - I tried to use the "Like This" feature but was told I had "reached my quota of positive votes for the day" (eventhough it's the first attempt at hitting like!). Not a good start to postiivity!!!
 
But I would like to riterate your point about using phrases "in our experience", "something to think about", etc... it's something I always try to live by!! I'll also add that if I'm going to insert a differing opinion, especially one that may be "controversial" - I'll preface it with something like "some my not agree", or "this might not be a popular response" to highlight that I am not trying to be negative - just offering a different point of view. I feel it has gone a long way to helping keep discussions civil.
 
And ditton on the FB group - we're all just trying to hlep our kids out! Disagreement can be healthy, as long as it's repsectful!!!