airial95

I don't know about the Iphone, but I log in and post from my Ipad all the time, without any issues. It all looks the same and such. I would think it would be the same, since it's the same operating system...but I'm not much more tech savvy than you guys!!

I'm about to expand to a second one. I honestly think that my "crazy mom binder" has helped me get my son's needs met with far less opposition than I would've expected!! I don't know if it's because they're afraid of it (or me ), or they see the value in what it shows...either way, it works!!

Count me in!!!

Thanks for the advice, I was going to go alone but after your post, I insisted that my hubby go along. It actually went better than I thought. When we first started discussing why we were there, and that he was being treated for PANDAS - and the dx was confirmed by Muephy, he sort of got a smug, "here we go " look on his face. It didn't last long, however, because I just continued right on without letting him interrupt as to why we are treating the way we are (including the admission that if abx have any chance of working I'd much rather try that first than the alternative on my 2 year old.). When I pulled out what we now affectionately call my "crazy mom binder" tracking symptoms over the last 6 months -and correlating known strep infections at school that I think he realized I had done some homework. He didn't completely dismiss the dx-which surprised me. He said the reason they're connecting pandas was the sudden onset -duh. But he asked if we've gotten titers run, and if we could share the results when we do. (that's somewhat promising I think). He also described that tics are associated with OCD and all the other neurologist crap. The good news is that he didn't think medicating was necessary for his tics, but he is going to run an EEG next week to make sure there are no seizures causing the tics, since they just started a couple of weeks ago(which is exactly why our ped sent us there). So overall, while it wasn't a great a ppt, i had prepared myself for much worse.

Just got a call from the neurologists office, they can bump up our late August appointment to tomorrow afternoon. Our pediatrican has already warned us of nurologists disdain for the PANDAS diagnosis in general, so I'm somewhat prepared for that. But just thought I'd put a quick shout out to see if anyone has any words of wisdom or suggestions as to what I might expect tomorrow. (Just a note - we've been dx with PANDAS since January, been on abx since then, had the dx confirmed by Dr. Murphy last week. Up until about 3 weeks ago, he didn't have any tics - all of his symptoms were OCD/behavioral. He started with a face tic a couple of weeks ago - which is why the ped is now referring us to a neuro.)

Yes, he does drink yougurt drinks, he loves them and does at least one a day. I have a hard enough time getting him to take his daily vitamin, (he's only 2) so I try to get them to him in other creative ways (the yogurt, juice, etc...)

I like the idea, and would be more than willing to contribute. I think doing something in the format of the "Chicken Soup" books might be worth considering. Since none of us writing have any real medical experience, I would be heistant to offer up any real "answers" - but sharing our stories - with both our struggles and successes, while focusing on a message of hope (like the "Chicken Soup" books) would work. Also, my sister works for a publishing company. She's out of the country right now, but when she gets back, I can ask her about costs/options to get it printed as well.

My son has been on azith since January - with 10 days on Omnicef during a strep infection. The only probiotic we've been regularly doing is an active culture yogurt in the morning (he takes the abx at night). He doesnt' always eat the yogurt unfortunately, so every once in a while when I can get to Whole Foods I pick up some Good Belly juice to supplement. He's not really had any problems on the abx. No real diarrea, stomach problems or anything like that. So my question - if he's not having any problems? Do I really need to do more than we're doing? I feel like I should be doing more, but if he's fine, do I really need to??

Help!! Dr. Murphy recommended an Omega 3 supplement to help with the inflamation for my 2 yr old in addition to the azith he's currently on. I can't find the brand she recommended, and went to Whole Foods today to try and pick one up. I bought a children's brand - labeled "chewable" and "no fishy taste" "berry flavored". $20 later, I got them home, tried to get my 2 year old to take them, he said they were "too hot" - so I had to put them in the fridge for a minute (don't ask - just one of the weird things he does, he has to put anything he eats into the fridge for a minute) Took them out, tried to tell them that they were special candy with fruit punch inside (they were gels). Needless to say, no go. So I tried to do the - if I eat it you eat it trick - which would have worked, except I actually ate one. Not only were they not "chewable" (chewy maybe - but that gel coating I had to spit out, there was no way a 2 year old would swallow it.) and it tasted like week old fish!! ("berry flavored" "no fishy taste" - riiiiiiight) So, I'm back at square one. Any easily accessible brands that I might try? We found a couple online, but I'd hate to pay all that $$$ wait for shipping just to have the same problem. Suggestions???

Both my PANDAS son and my daughter have both had strep of the skin. It presented as almost like a pimple at first, that forms a yellowish kind of crust. It typically happens on the face, around the nose and mouth (which is where my daughter had it.) My son's was on his arm, which is slightly more unusual. Our Dr. didn't do any sort of skin tests, just treated with both oral and topical abx. FYI - it was this skin infection that we believe was the trigger for my son's PANDAS.

The reason our pediatrician hadn't ordered the blood workup so far was that precise reason - since he's so young the results may not be that reliable. When I mentioned this to Dr. Murphy - she agreed, but said that it's worth drawing anyway just to take a look to see if anything interesting shows up. She said that she's not one to do continuous draws every few weeks/months, but since it's our first appt with her, it would be useful to have when we look at future blood draws. Personally, I'm surprised we got in as quickly as we did. I got the direction from our Dr to see her on the June 24th, and called that day. They said that they'd need all of our medical records and other information sent over, and they would call in a week to set up an appointment and do the intake over the phone. We ended up doing the intake over the phone that day anyway- and she said it might be September before we get in. So I was prepared for a wait. Last Friday, while we were on vacation we got the call saying she'd see him on Wednesday. We just got back to work from vaca on Tuesday, so taking a half day off the next day was not exactly our idea of convenient - but I told my husband we'd both quit our jobs before we turned down the appt. I don't know if that means she thinks our son's case is severe or what - but she wants to see him in a month or two for follow up. Our pediatrician has treated about a half dozen-dozen cases, and he said that our son seems to be the most severe he's seen so far - but his scope is very limited. Based on what I've read here - I would think our son is mild compared to most folks. Maybe we see it as mild because most of the tantrums/issues are still age appropriate for him so we're taking them in stride. I think I'd probably think he was more severe if he was acting like this at 7 or 8 than at 2. Interestingly - Dr. Murphy did ask several questions about our daughter, and if she shows any of the same traits or anything. (She doesn't - thankfully!) She didn't order any DNA tests from what I can tell - but that's an interesting point, I may ask our pediatrician about it. I have a rare genetic form of arthritis, which is an immune disorder (akylosing spondilitis) - I wonder if he carries that gene too?

I'm not gonna lie - I'm not sure how to read the blood work orders but this is what she's got checked: Ig Profile (G,A,M) IgE IgG subclasses: G1, G2, G3, G4 Mannose Binding Lectin Anti Deoxyribonuclease B(Strep)/Dnase-B Antibody Anti Streptolysin O Streptococcus pneumoniae IgG Antibody (13 serotypes) CBC with diff

Amber - Don't let any of the other Dr's dissuade you from finding answers. My pediatrician diagnosed our son with PANDAS a couple of months after his 2nd birthday. He's responded well to treatment so far, and we just had our first appointment with Dr. Murphy at USF and she's confirmed our diagnosis and path. Both have said that while most PANDAS behavior is common for that age group - you know when it's be blown over the top. And no one knows better than mom. Unfortunately, our pediatrician and Dr. Murphy are both in Florida - so they won't be much help to you - but good luck with your search!!

Well, we're back, and the appointment went very well. She did pretty much confirm what we already knew - that he's PANDAS - but it was nice hearing it from someone who's seen it as often as she has. Our pediatrician so far has been spot on 100% of the way - but even he admits there's a lot he doesn't know, so it was nice to have the confirmation. They're sending him for a full OT evaluation to see if he needs OT, and they found fluid build up in his ears - they think it might be from his recent strep infection, but they want him to go for a full hearing test in 6 weeks just to be sure. She also ordered a full panel of the blood labs. We haven't gotten any bloodwork done so far b/c our pediatrician said at his age what they're looking for isn't always reliable. Dr. Murphy agreed with his assessment, but said that she wanted to have the labs done anyway so they have a general idea of what's happening in that little body of his. She wants to see us back in 6-8 weeks or so. She recommended that we stay on our course of Azith for the time being, since we're still seeing a steady (albeit slow) improvement on azith, but said that we may want to consider switching to cedifir if we stop seeing result on azith, or if he catches more strep infections b/c of the higher risk of resistance with azith. It was a long morning, but overall, it went pretty well. Can't complain. And now I have a second opinion when we meet with the neurologist for the first time on the 27th of August!!

My son got strep just about a week ago on a daily dose of azith. Treated with a shot of Rocefin (sp?) and 10 days of Omnicef. Now he's back on the azith. The way our Dr. explained it to us - it is possible to get strep while on abx because of the ability to build up resistance. Being on the abx makes it far more difficult - but by no means impossible.

I think my son is too young for the study - he's only 2 1/2, and I thought I read somewhere that they had to be 4 - but I could be wrong. They were supposed to email me the paperwork ahead of time, but I haven't gotten it yet. Hopefully that will speed things up. Our Dr has already sent over all records and stuff - including our crazy behavior charting we've been doing. I don't know if that will speed things up or not...

We got a call yesterday that we can get in with Dr. Murphy tomorrow - she's the neuro psych out of USF that is a leading PANDAS researcher. Anyway - it's short notice, but I was wondering who else has seen her and what to expect for our first appt? Any questions I should ask?

My son also sleeps alot when he's flared up. He'll nap for 3-4 hours during the day and then sleep for 13+ hours at night still. And when he's awake, he still looks/acts phsysically exhausted - bags under his eyes and everything. It does sound like you might have PANDAS on your hands...

Just before we left on vacation a week and a half ago - my PANDAS son came down with a full blown strep infection. He had been off the charts symptom wise the 5 days prior - including the appearance of our first tic, so it wasn't so much of a shock as horrible timing - coming the day before we were leaving on a 20 hour drive to see Grandma and Grandpa in Buffalo. Surprisingly - it wasn't as bad as we had anticipated. The drive itself went fairly well, and his OCD seemed tempered a bit - we think it might be because his normal rituals/triggers are school related and since he wasn't in day care all week and in completely new surroundings those triggers weren't there. His tic even seemed to be a bit better. We were a bit more SUPER hyper sensitive about anyone touching our trains than normal. His nap and sleep schedule were all off kilter - which made things worse of course. But I think that we had it in our heads that it was going to be much worse than it actually was. I mean - don't get me wrong, it was bad - but better than what we had braced ourselves for. Could it be the abx injection and higher dosage/different antibiotic he was on to treat the infection? He just switched back to his old regimen tonight - so we'll see if that makes a difference.

I'm in Tampa and would participate. Also - just so you know, there is one forming thru Beth Maloney's facebook page. I contacted the woman last week (sorry - don't remember her name just now - and I'm not on my normal computer to pull up my email). They're going to be meeting in Orlando - the first meeting will be on July 27th. She said she already had 2-3 other moms confirming to attend. I was going to post information here when I got back from vacation next week. Not sure if having two groups makes sense or not.

He's only 2 1/2 - 30 lbs. He's a small fry. As far as flavoring the ibuprofen, it's not the flavor I think he objects to - it's that it's not the right color and it's not "medicine time". We ultimately got him to take it this afternoon - when the fever spiked to almost 104.

Guess not - but he's been exposed 3-4 times in the last 2 months without catching it, so I guess it was working for a while.

He was on a maintenence dose of 50 mg of azith 1x per day (2.5 mL suspension) before he got strep (he's only 30 lbs). He gave him an injection of rocephin (1g I believe) in the office, and he's temporarily putting him on omnicef starting tomorrow. I don't remember the omnicef dose right now - he sends the rx electronically to the pharmacy and I haven't picked it up yet. Once he's done with the omnicef, he'll go back to azith. Is it weird to say, after the horrible few days we've had, now that he's actually full blown strep, he's done nothing but sleep all day and when he's been awake, he's just laid there snuggling. I can handle this part of it...too bad it doesn't last!!

Over the weekend, our PANDAS son was definately revved up. A lot of defiance, unexplained tantrums, hitting his sister or the dogs for no reason. We also noticed the facial tic really take off late last week (and I just posted a topic about hallucinations vs. imagination that was in this time frame too.) Every other time we've had a ramp up like this, we find out someone nearby has strep. Since he's been on the abx, he hasn't gotten it. This morning, he woke up feeling a bit warm, with a temp hovering around 100. He seemed fine, so I didn't panic too much, tried to give him some ibuprofen (to no avail - he'll take his abx just fine but not anything else!) Since we're leaving on vacation tomorrow, both the hubby and I HAD to go to work, so we took him off to school and even had a super easy drop off (our biggest OCD/seperation anxiety time) with no problems. On my way to the office, I called the Dr. to schedule a throat culture for this afternoon - just to be safe before our trip. Well, at 10:15 I got the call, his fever was at 103, shakes, chills and throwing up - complaining that his "mouth feels yucky". Left the office, got him into the pediatrician, and to absolutely NO ONE's surprise - it's strep!! The Dr. gave him a shot of reocephin and changed our oral abx to omnicef for the next few days - after which we'll switch back to the azith. He also gave us a script for mupirocin for all of us to be using in the nose while we're gone to get rid of anything we may be carrying. Tomorrow afternoon we leave for a 20 hour drive to Buffalo NY to see Grandma and Grandpa! Perfect timing right?? This is the first infection he's actually had since his dx and going on long term abx (he's been on for 6 mo now). Is there anything else I should know? Will this require us to potentially change our long term abx rx? This is new - and quite frankly very scarry - territory for us!

My son is still young - he'll be 3 in the fall. So as with all of his PANDAS symptoms, it's tough to decipher problem behavior with age appropriate behavior. What struck me as odd about the few times I've questioned was his complete lack of reaction to seeing these things. When we play the "monster game" - he's very animated describing to me the monsters, what color they are, what they're doing, if they're friendly - etc... So I know that it's just his imagination. However, with some of these other times. He just says these things very matter of fact. For example, last week, I was saying goodbye to him at school and he pointed down the hallway and said very calmly "look mommy, there's an alligator". I ashed where, and was looking for a picture of an alligator, or a toy alligator, or something that might look like an alligator. Nothing. He said it was just there, sitting in the hallway. The next to days after that, he told me that the "alligator is gone now mommy". It was just very strange. Yesterday, he told me there was a spider in my bed. I asked where, he said under the covers. I pulled the covers all the way back, and asked where - he pointed to nothing (not even a fuzzy or something that might look like a spider). When I said there was no spider, he insisted there was, but I said it's okay - it's not real. This was the first time he got any rise in emotion when he insisted it was and we had to be careful. I know I'm paranoid - but all of this is happening with his recent rise in symptoms too. As much of a blessing as these forums have been in providing information and a sounding board for us all - I feel like it's made me a bit crazy too and I'm always looking for things that may or may not be there!!