airial95

I think we have been really lucky to have such a great network of people around us that helped identify issues. My son has always been way ahead of the curve developmentally - he was even talking in full sentences ay the time he was 18 months old. So when he started having bad problems at school (which is where most of his anxiety acts up), at first we thought it was cause we switched day cares. After we moved them back to the old one he was perfect again - for a week. Then we thought, well, he's really bored in this classroom, he's to mature for it, so that's why he's acting out. We moved him up - it got better - for a couple of days. Finally, after a nightmare of a vacation and the most stressful holidays trying to keep from setting him off - it was the director of our day care (whose known him since birth and has a PhD in special ed) who bluntly said - somethings wrong - this isn't your kid. Something we already suspected - but to hear it from an outside point of view who wasn't judging it as our parenting skills set off a light bulb. And our pediatrician was fantastic. He kept such good records of all of our visits, phone calls, emails where we were asking questions about Bummy's behavior and what we could do about it (parenting tips) that he was able to track the start of those calls to the impetigo infection. For months - we thought what he was doing was "age appropriate" - but our pediatrician put it best. You're his parents - as long as you have realistic expectations of your child at this age, and you don't think it's normal - it's probably not. I think the thing I'm most excited about with Dr. Murphy doing this case write up on my child is I'll have a great, detailed description of his disorder and history to give to the schools, doctors, etc... rather than trying to describe it all myself and them looking at me like I'm a loon!!!

eljomom, Mati's mom is correct, impetigo can be caused by staph or strep. My son's PANDAS was triggered by an impetigo infection - not strep throat. When either of my kids had impetigo (my daughter has had it twice) - he's always used Altabax ointment (rx) as well as oral antibiotics (Biaxin I believe - but I can't be sure). Since my son's PANDAS - whenever he has gotten strep, or is exposed, our dr also has us swab muciroprin (sp?) ointment in the inside of the nostrils, since the bacteria can "hang out" there and oral abx won't catch it. He also recommended the whole family do that to help prevent us being carriers. Hope this helps!

Congrats on having supportive doctors!! We have a great team in place with our pediatrician, neurologist and Dr. Muprhy that we've been blessed with. I've always felt silly coming on here talking about our wonderful doctors and our "easy" path through the dx when so many others struggled for so long. But then I remember, if it wasn't for all of their struggle and fighting, we wouldn't have more and more doctors every day willing to treat and dx PANDAS. Those same tenacious parents have also helped us be equipt with the information and skills we ned to be prepared if we do hit any skeptical doctors. So to all the moms out there who paved the way for these victories (however small!) - THANK YOU!!!

We got an email from Dr. Murphy last night asking if we would object to her using our son for a case write up of PANDAS in a very young child (under 3)! I know we just recently had a discussion about if the age of onset is important (over 3), etc... She sent over her draft, asking me to fill in questions and details she was asking for, and I have to say, I'm very impressed. She has details highlighted in there that we discussed, but seemed to be just passing points in conversation. I'm impressed on how well she knows my child's history - even the things that we spoke about that weren't in his medical records. She even made note of his habitual thumbsucking with his particular way of holding the blanket (something my husband and I have remarked about, but haven't discussed with any of the doctors - it was just something she observed.) I hope this will be a step towards helping folks identify PANDAS in young kids vs. thinking it was just the terrible twos!

I can't tell you about the long term prognosis, but I can tell you that we went 6-7 monhts "untreated" before we even went in search of answers for our son's issues. His symptoms have been mostly behavioral. I can tell you that his symptoms did NOT subside on their own, they actually got progressively worse. If anything, we got better at "handling" him - giving in to the OCD rituals, etc...which helped reduce the massive meltdowns, but by no means did he get any better. We've been on abx for over 8 months now with great results so far. We're not "better" but we're much closer than we were prior to treatment. I don't recall anyone on here saying that symptoms resovled themselves without treatment - I thought the time frame I kept seeing on abx working was 1-2 years - which seems to coincide with our experience thus far. I'd say that we're at about 80-85% better right now - with our occasional setback at time of exposure or confirmed strep infection.

My son got strep twice while on azith. So yes - it's possible - I'd have him checked out to be safe. Our pediatrician explained it to us by saying it was an azith-resistant strain of the strep that he caught. We have since switched to Omincef. But - this weekend, our son complained of a sore throat (first time he's ever complained) so to be safe, we were off to After Hours Pediatrics. (where I encounted a less than PANDAS friendly nurse practitioner - but that's another story). Turned out it was viral tonsilitis. So it could be something else. I agree with Kayanne - if my kid says his throat is sore - we're off to get looked at. Ironically, my son is young, and EVERY time he says to me "Mommy, I need to go see Dr. Friedmeyer" even if he looks seemingly healthy and hasn't had any PANDAS symptoms yet - it turns out for sure something was up. It's like he's feeling something trigger in his brain but can't quite describe it to us. Thank heaven he likes to go to his pediatrician!!!

I don't know about Pink Eye specifically, but I will say that PANDAS is triggered by more than just strep throat. My son's initial onset was from an impetigo infection. And he has reacted when others have other forms of strep - so I wouldn't be surprised if his reaction is to the Pink Eye. Good luck!

We just started being treated for seasonal nasal allergies. Our pediatrician said his type of allergy isn't creating a hystamine response - so an antihystamine wouldn't be helpful. He's been on Nasonex - which is a nasal steroid. He had a 2-3 day flare up in symptoms prior to starting. He was tested negative for strep. However, at the same time, we saw Dr. Murphy, who decided to change his abx from azith to omnicef - full dose for 30 days since he had gotten strep 2x in 2 months on the azith. We started both treatments on the same day - so unfortunately I can't tell you which medicine is causing the significant improvement we've seen. I do wonder though, since Nasonex is a type of steriod - how is it related to the type of steroids given to kids during PANDAS treatment? Hmmmmm?

My son had "sudden onset" after an impetigo infcetion at about 18 months old. I think part of the reason the age of onset is hard to pin down is because many of the characteristic behaviors associated with PANDAS are somewhat "age appropriate" for kids under 3. For over 6 months, we didn't seek treatment for the sudden seperation anxiety, rages, violence, and OCD because we thought it was the "terrible two's" and a phase that would pass. All kids go through a renewed bout of speration anxiety at that age, kids react physically at that age since they're frustated verbally, etc... Two year olds by definition like order, things to be just right, and crave ritual and repative behaviors. We were lucky that we had an astute amazing (and VERY patient) day care staff that finally confirmed what we were thinking - something wasn't right. And when we took him in to the ped to discuss, he didn't dismiss us - he looked into every aspect of his behavior - and his records and noticed our emails/questions about our son's extreme behavior conicided with the impetigo he had months earlier. He did a 30 day trial of abx - within 10 days we had a different kid again. We've been on the PANDAS path since. I think it's easy to overlook alot of these things at a young age becuase how much of it is "normal" and how much is something else?

What I find infuriating about this entire discussion is that if our kids had rheumatic fever - there would be very little question about long term abx treatments. But yet they're willing to put our kids - and their fragile, developing brains - on all sorts of damaging psych meds instead of treating (and preventing) the root cause of the problem - the antibody response to infection!!! So when I've been presented with that argument (which I was at the After Hours Pediatrics the other night) - I ask if they'd object to the treatment if it was RF? Of course the answer was no - but the NP still tried to convince me that our pediatrician, pediatric neurologist and Dr. Murphy were all wrong. I understand the heart is really important, and you have to do what you can to protect it - but call me crazy - isn't the brain kinda important too?? It's not like we're putting our kids on long term abx to prevent them from losing the use of their pinky fingers. It's their BRAIN!!! Sorry - got a little testy there, won't let it happen again.

I agree with dcmom. Wait 24 hours and see how he does. Whenever my son is even exposed to strep - he has a "blip". His is a bit more extreme than most. If on a scale of 1-10, 10 being full blown exacerbation - when he's exposed, he swings up to a 6-7. But it has never lasted longer than 48-72 hours when it's just an exposure. If it lasts longer than 2 days - we call the Dr. and get a throat culture/adjust his meds. We found we can handle those exposures with ibuprofen, patience, and a couple of glasses of wine after bedtime Hang in there - You'll get through!

Sorry, I couldn't help myself. I've been in a funk all week and reading this made my mind turn to a dirty place and just laugh!!

I agree that there are some issues with the "sudden onset" definition by nature. As ajcire said when she was describing her youngest - he does these things because that's what normal 3 year olds do. It makes it hard for parents of younger ones (like us) to identify "sudden onset". We were actually a classic example of "sudden onset". But our "sudden onset" also came around the time of his 2nd birthday. It was so abrupt that we made jokes that he must have "gotten the memo" about the terrible 2's. But since what was happening was age appropriate - albeit to an extreme - we didn't suspect anything. It wasn't until things started to build up - and add up - that we finally sought help. Thankfully our pediatrician keeps excellent records, and we were able to amazingly see that our questions to him about our sons "terrible 2's" (which is what we ALL thought it was at first) correlated EXACTLY with a strep infection. I think the classic definition of "sudden onset" is a bit more identifiable in older kids, kids well beyond the bedwetting years, the deterioration in handwriting/school skills, etc... are a more drastic and noticable than those types of things would be in a younger child. Even the tantrums and rages in a younger child are harder to identify since they're not as "verbal" to be able to express their feelings/issues like an older child would be expected too. So if they're older at time of the first exacerbation - sudden onset might make sense. But this may why many parents don't see the "sudden onset" - it may have been sudden, but when the child was so young it wasn't as noticable - so as the child gets older, it's easier to see something's "not right" as things begin to add up. This may not make sense to anyone but me - sorry. But as a parent of an almost 3 yr old with PANDAS - we've been doubted many times by family and friends. Told there's nothing really wrong - he's just a difficult child, or we're not strict enough, we let him get away with murder, etc... Until my parents had him overnight mid exacerbation - they were the worst doubters. Not only do they not doubt us anymore - if they ever take him overnight - my mom is the first to ck the bag to make sure all his medicine is there!! As for the CamK test - which is what this thread was originally about - we've not done it yet, we're going to wait until he's a bit older. But we are going to test his older sister. We have seen some concerning things in her, but not to an alarming degree. She tends to be a drama queen that will do things for attention, especially if she sees her little brother getting away with things. But we figure having that info on here will at least tell us if we need to be more vigilant with her as well, and it will also give us something to go on when we get that gut feeling that something's just "not right".

Our pediatrician took the same approach as your dr when it came to the blood work. He said that the blood work can be useful, but it also can be misleading (as in peglem's case) and if he's responding to the abx, why muddy the waters. It wasn't until we saw Dr. Murphy that we got any titers run, and guess what - they were negative, and her response "that doesn't mean it's not PANDAS". So score 1 for my pediatrician for not wanting to poke my child needlessly. Can it be related to strep in places other than the throat - YES!! My son's PANDAS was triggered by a skin infection - not strep throat. And whenever there is strep going around, our ped treats with muciroprin (sp) ointment in the nostrils since the bacteria likes to hang out there too and it won't be caught there with abx. Our dr has now suggested at the first rise in symptoms to have him come in and get checked out. On at least one occassion he tested + for strep without fever or any other outward symptom that I would've noticed. (there were some things the ped noticed - elevated heart rate, etc...) For the record, my son has never complained of a sore throat. As far as the OCD always being there between infections - we have the same issue. The way it has been explained to us is that their brains are still constantly forming new neural pathways - and even after the underlying cause (the infection) is eliminated, some residual OCD may be left b/c they just get "stuck" - so used to thinking that way that they continue. That's why we're also doing behavior therapy - which has been helping us immensely. You might want to also consider a deatiled tracking of symptoms to help you see what's hanging around between infections and with what severity. (I have a spreadsheet based on Busters system if you'd like it - PM me with your email address) I know that's helped us alot - it also helped us identify his one "go to" behavior that ALWAYS means strep exposure. I agree with peglem - if the treatment is working (we've been abx only for +9 months and have been happy so far), stick with it. And be thankful that you have a PANDAS friendly neurologist! We have one too - but from what I understand they may be a rare breed Good luck!!

I had one of my favorite moments with my son this morning. Each morning, if he's still asleep when it's time to wake him up for school, I crawl into his bed and snuggle up and gently try to wake him up by giving him snuggles and kisses. It's one of my favorite things, because he looks like an angel sleeping, in his semi asleep state he'll snuggle right back up to me, and it's calm - no PANDAS in sight. I think God sends me this special quiet time with my son almost every morning as a reminder of the beautiful gift that he is, and to recharge me and give me the strength to deal with what the day may bring. This morning, it got me to thinking - I'm sure we all have our little moments like this with our PANDAS kids, seemingly simple little things that parents who don't have our challenges would take for granted. Just thought I'd share, and hope it makes someone who might not be having the best day to think about their special moment with their little PANDA and smile.

Nancy, Forgive me, but forgive me, but considering what the $$ was used for, do we really want to ask how it "stimulated" anything???

I had to get blood drwan as well when my son had to get his first time, he was nervous, but all for it, he was going to be a big boy, like mommy. He saw me go first, said "mommy, I can do that". When the tech left to get his things - he looked at me and changed his mind "mommy, I can do that, but I'm not gonna" - very matter of fact. They offered the "restraint jacket" for him when he started to freak out, but I opted against it. I held him in my lap, almost in a wrestling hold, and another nurse held his arms. I think he could be heard screaming in a 5 county radius. There were other kids int he waiting room - I felt bad... Afterwards, I promised him a new train if he was brave. When I asked if we should get him a new train for being brave, he actually said "no - I wasn't a big boy". (He got his train anyway). Since then, our pediatrician has offered to do all of the blood draws and send them to the lab. It's easier since he knows all of the nurses in there, and likes "Miss Margie" who is the one who has to poke him. It still takes 3 of us to hold him down, and he still screams, but it's much less traumatic. Will your ped do the draws??

Jaylen's mom, I hope you didn't take my post the wrong way. Of course many of us on here wondered if the parents checked for infection. For those of us dealing with PANDAS it's a natrual question, and one that the show didn't touch upon. Many of us on here have dealt with doctors/neurologists that were adamant that our children didn't have PANDAS, when in truth, they did - so I hope you weren't offended by the question. No one was questioning your approach/path to dealing with his condition. As for my remark about the ratings - in no way did I mean to imply that anything was staged for the show for ratings. I was responding to people's remarks as to why they would choose such seemingly "extreme" cases to highlight. Even though medically they are not all seen as extreme (as the teenager only has one tic, but also the rage issues) - the behaviors they exhibit are very noticable. My sons tics are very mild, and unless you are familiar with them, can go unnoticed by strangers. Someone like him would not have made for "good tv" to the producers of the show. It was a reflection of the producers and what they were looking for in cases to highlight than it was a disparagement on any of the families. I commend you for all that you've done for your son, and being from Tampa, I have followed his campaign when he's been highlighted in the local papers and on the local news. My son is still a bit young to understand what is going on, and hasn't had to deal with bullying yet, but I have already saved Jaylen's page to our computer to show him when he's old enough to understand. All of us on here are trying to do the best we can for our children, and to help other children like them - just like you and Jaylen. As others have said, we would love to have you come back and join us here, as we have many parents who are unsure if they are dealing with true TS or PANDAS. Your point of view would be invaluable and welcome.

We just started 30 days of omnicef through Dr Murphy. I know it's her abx of choice and the one most of her research has been focused on. We had been on azith for 9 months and were somewhat successful, but he got strep 2x in 2 months on the azith so she wanted to change it up. We're not quite a week in..so I don't have a whole lot to report yet...

We haven't seen the paperwork yet, it won't be done for a couple of weeks, but my understanding is that he will be classified OHI because of the autoimmune component. They're putting him in the EH room for preKindergarten-3 since their resources for dealing with him are limited. Their concern is when he has his massive rages, in a more normal classroom they won't have the resources to deal. Before he's placed anywhere we'll be visiting the school and classroom. They're also pairing us with a parent liaison,but I will look up educational advocates in our area. Thanks for the advice. Right now our day care director has been a fabulous resource and advocate for our son. I don't think we'd have gotten this far in the process without her. I guess I won't know for sure until we see the classroom, but it sounds like my fears aren't exactly unfounded. The good thing is if he's classified as OHI and the placement doesn't work for him, after a year he'll be eligible for $12k per year from the state for private school. There is one locally that specializes in ADHD and anxiety disorders that would likely be a perfect fit - but wAy expensive! As always, thanks so much for all of the advice and feedback!

I can totally relate. I have some friends who are understanding - one of my closest friends is an PICU nurse and another has a child who we all suspect is autistic (her husband is in denial - so they don't have a dx). But even with their "support" I've found myself pulling away. Honestly, by the time I have a few minutes to talk to them and catch up - I'm exhausted and don't feel like doing anything but passing out or vegging infront of some horrible tv (Real Housewives anyone?) with a glass bottle of wine. So in a way, my isolation is self imposed - but at the same time, it's exhausting have a kid with these issues - and I have little time for anyone else!

My son is about to turn 3, and we've already started the pre-school screening process with the school district to work through his IEP/504 prior to him starting pre-K. At our assessment a couple of weeks ago - of course, he was an absolute angel! No issues, no OCD, no tics, nothing. Figures. So as we left, they were fairly dismissive that he would qualify for any IEP or services. But their final decision had to wait until his current teachars at day care filled out paperwork and provided their feedback. We asked the director of the center to do the paperwork, since she's been the one dealing with our son directly with the various teachers since the beginning. I got a call yesterday from the school district saying that they hadn't recieved the paperwork from day care yet and "they can't close out our case and file their report" until they do. Yes - she used the words "close our case". Nice. I called day care, and sure enough, they sent the paperwork via fax and mail. They faxed it not once, not twice, but 3 times. I left a msg with the woman last night - trying not to show my anger at her "close our case" message telling her it's been sent repeatedly, and would be sent again. This afternoon, I get a phone call from the district - yes they recieved the paperwork via fax, and they got the originals in last nights mail. Great. She then proceeded to tell me that the director of the day care also called her to discuss Broderick's case. Not only will he qualify for services, his IEP will be complete by his 3rd birthday next month. Since when he's not "sick" he's amazingly well behaved and bright, but when he's "off" he's out of control, based on the recommendation of our day care, they're putting him in the smallest classroom available - to limit his exposure to strep as much as possible, as well as to have the higher teacher:student ratio so when he does have his meltdowns - he'll have one on one teacher attention. (which is how day care handles him now - when he freaks - he gets his own grown up!) They're even going to make sure his IEP notes that his issues are "health related to an autoimmune condition". This is important, because in our state, they have a scholarship fund available for kids with IEP's to go to private school if the public school isn't working for them. (They have to be in public school for 1 year first) If the IEP is based on "health related - other" (such as an autoimmune condition), they can quailfy for more $$ towards private school. (A fact told to me by a private school administrator I know). So - it all sounds great right - and thanks to my wonderful day care provider who knew we were trying hard to get this done - we're on our way. One concern - she said they're putting him in an "EH therapeutic classroom" I didn't think much of this when she said it, but after I got off the phone, I searched the district's website to see exactly what that means. (Our SD's website is HORRIBLE!) Nothing - so I googled it. It means "Emotionally Handicapped". Now I'm terrified of him being in a classroom that's so disruptive - even if it's only 8 kids that it'll make his anxiety worse. Am I being paranoid? Anyone else have any experience with an EH classroom - good? bad? indifferent? I'm sure I have all these horrible stereotypes in my head of special ed classrooms from the "short bus" days of my childhood...(not to be offensive - but special ed was different when/where I grew up)

sorry - somehow the topic double posted - ignore (Maybe the administrators could delete it?)

Thanks for all the feedback. I originally thought normal 3 yr old curiousity too - but you know how us PANDAS mom's minds work - once they get going, they get "stuck" - just like the kids!! He did breastfeed - until he was 16 months. We weaned because he was so verbal that he walked up to me one day and asked for "boobie". Nancy - unfortunately, this has been going on for a couple of weeks. Which is what has made me question the OCD part of it. I was hoping that if we didn't make a big deal out of it, and just answered his questions straght forward, etc...it would pass in a couple of days. As long as it doesn't become a bigger problem (ie - with other ladies) we'll just keep handling it like we are.

Alright - this is really embarrassing to bring up, but I figure if I can't talk about it here - where else can I? I've read about in appropriate sexual thoughts, compulsions, etc... associated with OCD. To be honest, since my son is only going to be 3 next month, I didn't really focus on it. Well, now I'm beginning to wonder. A few weeks ago - he was snuggling up with me and he grabbed my boob. He asked what that was. Very matter of factly I told him it was my breast, and that it's not nice to touch ladies there. He responded with "Can I see it?" To which I told him (again, matter of factly - not making a big to do about it), no, we don't ask to look at ladies boobies. His response: "Pulllllease may I look at your boobies mommy?" (We often tell them no to something if they don't use all of their words and ask politely and correctly - which is what he thought was happening here). I calmly explained again that it's not nice, etc... Admittedly, after the fact (when my son wasn't around), my husband and I got a good laugh about that...but... Since then, this little play has repeated itself several times. Lately, he also tries to place his hand down my shirt constantly, and when he climbs on me, or I'm carrying him, he's always trying to place his hands there. I know at his age there is that curiousity thing, and we've been handling it just like we've always been told. Don't act alarmed or upset, just very calmly and matter of factly move his hand, tell him no, etc... But I'm starting to worry that this has gone on for some weeks now. It happened yesterday when I picked him up at school, and I asked his teacher if this had been going on there. Fortunately, she said no - so it's not spreading to strangers - yet. I know it's embarrassing to talk about - but does this sound like it could be a function of the OCD - or just a curious 3 year old? As usual - I see symptoms everywhere so I'm a bit paranoid... Thoughts??