monarchcat

I see now that it says "June 9, 2009", so maybe this came out last year but she remembered it and found it since she knows about my son. I'll have to ask her when I see her next.

My brother's girlfriend received this pamphlet and gave it to me. I believe she works in marketing for the company. I was THRILLED to see that information about PANDAS is reaching more people. I scanned it in and you can view it or download it here: http://www.box.net/shared/mnt5ryzlp4 I haven't read it in depth yet, but it looks pretty good. Interested to hear your thoughts!

I am going to approach it differently in June and try to get as many proxy votes as possible. Currently I don't have very many and have been imploring people to vote on their own. I don't know how successful that is, frankly.

I think in this case it may be sensory integration disorder?

When I look now it says 23rd (which is where we were when I went to bed last night). That happened once before, too. I wonder if it happens if you catch it during an update.

Where are you in New England? I'm in eastern MA.

DS9 started yesterday with minor sore throat and headache but felt fine on advil. Woke up at 6am this morning with fever, sore throat, headache and minor nausea (he gets nauseous with fever no matter what he has). He's been on 2000mg/day of augmentin XR for the last couple months. This happened once before in February and his sister DID have strep, but he was tested negative, which wasn't surprising because he was on the abx, but the dr.'s office told me, NO WAY could he have strep. Of course, I didn't believe them, especially since his sister had similar symptoms and was positive. At the time, I had some azith in the house and put him on 5 days of 500mg/day of azith instead of the augmentin. This time, though, I don't have any extra azith to switch to. Should I get him in for a culture now or wait another day to let it progress a bit more? Would it be more likely to culture positive? Have you ever had a positive strep culture while on this dose of augmentin? If this IS strep, this may not be the first time he's gotten in on the augmentin. Does anyone else find that the aug fails as a prophylactic? Especially at 2000mg/day? And lastly, AGGHHGHHHGHHGHGHGHGHHGHGH!!!!! LOL.. just had to get that out. We have an appt for both kids with Dr. B at the end of June. I can't wait!

Kathy's phone and email: Kathy 405-271-2133 ext47460 Kathy-Alvarez@ouhsc.edu So sorry to hear you are in such a crisis.... you guys are in my thoughts. Suzanne

Here's the link: http://www.wfaa.com/news/A-side-effect-of-...p-93004404.html Great job, Deborah and Lillian!!

Thanks for the responses and the PMs. I realize now that this kind of "this doctor vs. that doctor" post is somewhat frowned upon (I had forgotten about a previous post discouraging this kind of thing), and I can understand why. I really appreciate those who replied and those who PM'd me and I still welcome any feedback via PM. We owe so much to the few doctors that are willing to put themselves out there and treat PANDAS with knowledge, compassion and a drive to further the understanding and treatment of this beastly disease. They are all amazing!

I've been thinking that it's time to get ourselves to one of the "big guns" and get our kids under the care of a dr that knows PANDAS inside and out. I had a phone consult w/ dr. L initially but then had trouble getting a hold of her again so I dropped it. I've been working with our ped who is willing to listen to my recommendations but knows very little about PANDAS. I am in Massachusetts so I'm thinking either Dr. T in New Jersey or Dr. B in Connecticut. Now that my daughter is showing clear signs of PANDAS, too, this just can't wait any more. I can't keep being the only "expert" in my children's lives. I fell like I've taken this as far as I can and now we need to definitely take the next step. So... for those who have seen Dr. T and/or Dr. B, can you tell me a bit why you chose who you did? Do their treatment approaches differ? Do they recommend IVIG or PEX usually? Any info would be great so I can try to make a decision and then make an appt.

Thanks for all the input, guys! I really appreciate it. I do give omega 3s (Coromega - fish oil) but have been lax about it. I need to get better about making sure it's part of the daily regimen. Ibuprofen definitely helps, but I don't want to overdo that. I am intrigued by spironolactone and am going to mention it and bring whatever documentation I can find when I see the ped next in a couple weeks.

DS9's primary PANDAS symptom is irritability. Off the charts, pissed at the world kind of irritability. He can be in a good mood but then if one little thing sets him off we go into a big spiral of how his life sucks, he sucks, everyone hates him, he hates everyone, etc. His dad and I get the brunt of this. If something little sets him off (e.g. last night he went from a great mood to hugely irritated because his friend couldn't play anymore after dinner) he immediately starts telling me that he hates me, I'm so stupid, I never let him do anything, I'm the worst mother, he wishes I were dead, etc. He's not shouting and raging, just pissy and... IRRITATED. We have times when he's fine and he's happy and light and funny and kind and compassionate. That's what I believe to be his true nature. I really believe (most) of the chronic malcontent, irritated, pissy stuff stems from PANDAS. We have seen more of the happy side since starting abx, etc, but the irritability always returns or seems to be just under the surface. Advil helps but I don't want to be giving him advil all the time and if I miss my window of opportunity (i.e. *before* he starts getting angry) then it's too late anyway. What supplements (brand, dose, etc) work best for irritability? Does anyone else's child seem to present mostly with extreme irritability? (He has tics, too, but not a lot of OCD) Right now he's on: * Augmentin XR 2000 mg/day * Multivitamin * Vitamin D 2000 iu * Probiotic (approx. 200 billion cfu from Custom Probiotics)

I asked my son and he was very interested in having other kids with PANDAS to email with!

Thanks so much for your replies, guy! Ellen, my son has looked at your son's website and thought it was cool. He likes his other site, too, the "fun" one with games, etc. I thought his sites were really well done and was very impressed! I think it would be nice to get him in touch with other kids... He does have an email address, but I don't want to post it for obvious reasons. If you think your child would like an email pen pal, would you send me a PM and I'll give you my son's email address? I'll ask him first, of course, but I think he'd really like to get emails from kids who also have PANDAS and can relate and maybe help him open up a bit about it.

My son is 9 and does not want ANYONE to know that he has PANDAS. He hates the fact that even his grandparents know. He doesn't realize that I've talked about it with my friends, his teacher, the school counselor, etc. He would flip. This makes it really difficult because I want to do so much in spreading the word about PANDAS. I post about it on FB quite a lot, so many people do know, especially now that my daughter has it, too. My son doesn't even want people knowing about my daughter because he says then they will assume he has it, too. I'm finding it difficult because I really want to be an advocate and talk about PANDAS because there are so many potentially undiagnosed kids out there, and I want to generate publicity to garner votes for the Pepsi grant. Yet, I've already abused his trust by talking about it as much as I have. He would be very upset to know that I was even posting on this board to people we don't know, let alone telling friends and relatives. He's very concerned with how he appears to other people, and more than a touch paranoid that people think he's "ugly", "stupid", "no one likes him", etc. (he's a very cute, smart boy but doesn't see it at all). Anyone else have the same issue? How do you handle it?

My son was so-so on steroids. We think we saw some improvement in PANDASy irritability, etc, but there was definitely a new kind of anger caused by the steroids. There was no reduction in tics, and in fact, he had his first ever vocal about a month after stopping the pred. He ate like a starving truck driver and gained a lot of weight that he hasn't really been able to drop. All in all, it wasn't the miracle that it has been for some, but he's had this for a long time. I think at this point I wouldn't do steroids with my daughter unless she had a more severe exacerbation.

Just a little update - Her culture came back positive for strep. It alllll makes sense now, unfortunately. We'll see what happens with the azith. No real change yet, but she just took her third dose a few minutes ago. Had a big incident in the yard this morning when a little friend of hers got a bug (little inch worm) in his mouth.. he wasn't upset and just spit it out, but she then asked me 50 times over the next 10 minutes if SHE had a inch worm in her mouth (while sticking out her tongue for me to look at). She would get very anxious and upset if I wouldn't answer. I told her a couple times that I would not answer anymore and that she already knew the answer. She didn't stop asking until about 10 minutes after we were back in the house. Ugh. My son never presented with overt OCD like this. Guess I'm going to have to learn the ins and outs of dealing with OCD! I'm hoping the azith will do the trick, and I'm going to do some ibuprofen per Vickie's suggestion, too. I don't know about steroids at this point.. I just don't know. I didn't like the results of my son on steroids so it makes me nervous.

Just back from the ped. He did a swab and will send it to be cultured, rather than doing a rapid or 24 hour DNA, which is what they usually do. And he agreed to 3 weeks of azith at 200 mg/day (she's 53 lbs). he said his concern would be, of course, that we are treating nothing, but if I felt comfortable with that, then he would prescribe it. And to watch for intestinal trouble. I've been giving her about 30 billion cfus of probiotics from Custom Probiotics already over the past week or so, so that should help. I feel like at least we are taking action. If the strep didn't clear (she was on amox for 10 days for the original strep), then hopefully this will get it and I just hope we are not screwed for the future. Time will tell, I guess.

DS wasn't dry at night until about 3 weeks into his first abx treatment for PANDAS last fall (then age 8 1/2). Hasn't had an incident since. I definitely feel it was related.

I have an appointment with her ped tomorrow afternoon and will discuss all this and push for a month of abx. I had a physical today and had her do a swab on me and she'll test my ASO titers when I have blood drawn for labs tomorrow, just to make sure I'm not carrying. I'm thinking about doing the Cunningham test for her. I guess my plan would be this... please tell me if this sounds reasonable: 1. See the pediatrician, explain what's going on. 2. Get a throat culture. 3. Possibly get titers checked. (Positive strep was almost exactly 2 months ago at this point.) 4. Beg for a month of abx. 5. Watch her like a hawk and document everything. See if behaviors diminish. 6. After a month of abx just keep monitoring and see what happens. 7. If we have another incident after that, get Cunningham test and look at more long term abx. I don't want to be too conservative, but I also don't want to rush into things. She seems fine now, with the exception of the "big" reassurance OCD incident, and then several times during the day questioning of us ("I didn't drop this, did I?", "Is this my cup?", and "Is there a bug on this?") but usually she will only ask once or twice and is fine. If I can get abx for her, what do you think would be best?

I, too, question whether pred actually did any good while ds was on it. He was on a 30 day course prescribed by Dr. L (high dose for 2 weeks, then taper down for 2 weeks). At best we traded one source of irritability/rage for another. We think we saw some PANDAS improvements, but the 'roid rage was no fun at all. Certainly no lasting positive effects that we can be sure of. He also developed his first ever vocal tic after stopping the steroids. But, he sure does have PANDAS. The question is, I guess, are there other triggers than strep which could be made worse by steroids.

Thanks, guys. I'm just heartsick at the thought of her having PANDAS, but I know how common it is for more than one child in a family to have it, so I can't say that it's something we've never thought about. I have an appointment at our family practice tomorrow for a physical and I will try to grab a minute with the kids ped while i am there just to give him a head's up, and I'll make an appt to bring her in tomorrow for a swab and maybe blood work for titers. In theory, titers should be elevated anyway since she did have strep 6 weeks ago, right? My son has never shown a titer response but he was never tested this early. So if they are high... that really just confirms the past strep, right? If she's positive on the culture that would be something concrete, for sure, since she's asymptomatic right now.

DS9 has PANDAS and probably has had it since age 5. My daughter, who will be 4 in August has seemed perfectly fine up until now. A couple weeks ago she dropped an m&m on the floor and picked it up and ate it. No big deal, but my husband said something along the lines of "That's fine, but generally you don't want to eat things that you drop on the floor or the ground." Very mellow, not a big deal. Since then though I will give her something and she will ask me a few times, "Did I drop this?" Even when she knows it's been in her hand the whole time. She's very smart and very verbal, so it's not a comprehension problem. She KNOWS she didn't drop it, but will ask anyway. My husband says she will ask him, "is this my drink?" quite a lot when they are out somewhere (and even at home, though she's only done it with me once or twice). Even when the drink hasn't left her hand. Tonight was a big issue, though, and here's why I'm worried: We had a babysitter tonight, someone who babysits frequently and my daughter adores (she's a preschool teacher). While the sitter was cleaning up the kitchen after dinner, my daughter was sitting at the table having an ice cream sandwich. She asked the sitter, "Did I drop this?" Of course the sitter has no idea that there is any history to that, so she says, "I don't know, did you?" my daughter BURST into wild tears and kept asking over and over, "Did I drop this?". The sitter said, "Honey, no you didn't drop it, it's fine.. see? It's there in your hand, you didn't drop it" But my daughter asked over and over and over. At one point the sitter said, "Can you tell me why you are asking me over and over?" and my daughter just said, "I don't know" and then asked again. She ended up falling asleep crying because she couldn't calm down. I'm very worried that this particular incident in particular seems VERY OCDish. Then again, kids get stuck on weird stuff and until tonight I had thought that it was just age appropriate. Tonight seemed different and based on how the sitter told it, she just seemed really stuck. What seemed to make it turn bad was the fact that the sitter originally (unknowingly) said, "I don't know". Here's the kicker.. she had strep about 6 weeks ago. Is this a first PANDAS episode?? What do I do?? Should I see if I can convince our ped (who already thinks I'm nuts, but humors me with abx for my son based on my consult w/ Dr. L, etc.) to prescribe maybe a month of abx for my daughter? If this is a first PANDAS episode, can we maybe nip it in the bud? If so, which antibiotic and for how long? I can check titers, but I know that titers mean diddly squat. What do you guys think?

That's fantastic!! Calm persistence is certainly the key, I think. Good for you!