TracyRee

Yes, there were things there before pandas, we just didn't realize or when we did we thought he would outgrow a lot of it.

DS, 5.5yo, just received an Asperger's diagnosis. We'd been blaming is challenging behaviors on PANDAS for so long... now I'm going to have to sort out when he's having an Asperger's moment vs a PANDAS episode. Anyone else have a pandas kiddo with Asperger's?

I had a phone consult with Dr. T last week. He wrote us a prescription for blood tests to have done locally. I for one live in pa. so we went to see Dr. T this past weekend. I think most do phone consultations from what I have heard. Thank you TiredMom, can't figure out how to do this and who to visit, everyone seems so far away. Do you know if any of these dr.s will order test before you come in and visit? Lotafaith

Do people use amoxicillin prophylactically? Definitely calling doc tomorrow for a new prescription...explosions continue to become more frequent.

The prior use was every day, a lower dose. this is all so confusing.

His behaviors improved GREATLY on the Amoxicillin. I'd say 95% to baseline. It was amazing to see him BACK with me We just started working with Dr. T who has ordered a Lyme test which our doc will do in a few weeks.

Ds just started a low dose zithromax twice a week. He had just come off amoxicillin to treat an active strep infection and was doing great, no rages or anger for 6 days (usually he has rages every day). The last couple of days he's been ramping back up, low tolerance for frustration and mini- explosions he'd been on zithromax about a month ago and we had the same problem, but I didn't equate it to the medicine directly effecting him. Thought it may have been the red dye or a virus. Now I'm thinking it's the zithromax. I'm going to try to give it through the weekend and call dr t Monday, but was curious if anyone else had this experience.

[Thank you both. Have read The Explosive Child and love it. He has a current strep infection so on abx and will be on them afterwards as well. Will check into steroid burst! quote name=fuelforall' date='Feb 4 2010, 12:22 PM' post='54599] Well, Ross Greene's The Explosive Child has some clues. Discipline is fuggedaboudit. Watch for triggers. Be flexible. Of course, there are times when there is no reasoning with them and you just have to wait for it to blow over. Get abx and or steroid boost. Might be worth a shot.

How do you parent a child with difficult behaviors caused by pandas? DS, 5, has rages, explosions and anxiety. He lashes out at us, screams that he hates us, tries to hit us... How do you handle this in a kid that has pandas? We've been approaching it as we would any kid but it's not helping. We try to use positive discipline (when we're not exahusted and frustrated), punishment just seems to be more than this kid can handle. What do you do in the throws of a meltdown? Is there any parenting we can do that will help him handle future ones? He's completely terrified all the kids at school to the point that they won't play with him He has a real problem with anything unexpected or any conflict with another child. If someone bumps into him accidentally he shrieks uncontrollably and is angry witht hem for days. Any advice at all? Nothing we've tried works. We've tried showing him the appropriate behaviors, acting them out, writing stories.....

Thanks everyone, you've all given me lots to think about yes, rages are how it presents with him. He had so many today, I'm exhausted. Anything rubs him the wrong way and he shakes his fist at me and starts shrieking "I hate you!!!". Over and over. This from a kid who is so gentle and sweet. He isn't a rough and tumble boy by any means, very mild mannered most of the time. These rages are horrible. It hurts so much to watch him so put of control. I had thought about the red dye, I'll definitely ask for dye free next te he was on zythro about a month ago and did sooooo well on it, so I don't think it's the dye. Limes disease may e, but again, he was on zythro recently. Thanks again everyone. It's so hard parenting him through this. I miss my little guy.

ds had been doing good, but we finally found a doc that knows about pandas and started him on a trial of zythromax. (100mg/day, he's 44lbs so a low dose imo) 6 days into abx he's having constant rages. any ideas? of course i'll call the doc tuesday but wondered if anyone has any insight

I've finally found a great doctor that knows about pandas and is willing to treat DS. He prescribed zithromax for a month, 100 mg per day for my 44lb 5yo. Having a hard time finding dosage suggestions so thought I'd just post. DS isn't having any tics or compulsions, just some behavioral stuff once in a while (anxiety, explosions) Thanks

DS is 5 and has had his blood taken so much lately. It's really hard on him, he paniks, begs the doctor not to do it, screams the entire time. It's really horrible. Any ideas for helping him with it?

Looks like I couldn't go wrong with any of them! Going to be tricky to decide which one.

I want to see one of the experts. Which should we see and why? We're in Tennessee and up for a trip!

EXACTLY! I've been looking, but today really solidified that decision. Been emailing lots of docs tonights in hopes of finding a local one with experience. If we haven't found anyone by Monday, going to call one of the experts and plan to travel.

by the way (in case you have been following my posts) I was going to get his strep test on Monday but we to go out of town for a funeral.

Thanks everyone. The ear nose throat office called and had set up his appt for tomorrow, I asked if they can run a strep test and they said they can. I'm thinking I'll go ahead and go, get him tested there. I still just don't get why our doc wouldn't do it!!!!

ugh. just got back from taking ds to doc specifically for a strep test and doc refused. So PANDAS DS had strep infection 3 weeks ago. Tested positive on rapid test. Given rocefin injection and 5 days of azithro. He's been off antibiotics now for 11 days and I still see white puss in his throat. Took him to his doctor today, showed him the white and doc wouldn't do a strep test. Now, I didn't all out demand (should have and am kicking myself and feeling like I failed DS) I told him I was really concerned about the possibility that the strep didn't get knocked out. Told him I was concerned because of DS's PANDAS. Repeated that I really wanted to stay on top of this and that we were looking for a specialist to see DS. Doc said he didn't want to do a culture as DS wasn't running a fever or showing other symptoms. Went on to say that the white puss could be caused by any number of things. When I persisted he said he could set up an appointment for DS to see an ear nose throat doc and that the only way we'll get rid of the puss for good is to have his tonsils removed. I asked if that was what he was recommending and he said no as it's not hurting anything. So. What now??? See the ear nose throat guy? I can't believe I didn't get him the throat culture. Obviously DS's doc doesn't "get" PANDAS. He's a wonderful family doctor who I've always really liked, but didn't this warrant a strep test??? What would it have hurt?? Is it too soon after antibiotics for a strep test? I almost stopped at a walk in place and had it done there, but my 6mo was in major melt down mode after spending all afternoon at the first doc trying to get a culture.

Thank you both. So there shouldn't be white patces at this poitn? They don't need time to "heal", just go away if the strep is gone? I can get him in for a culture on Monday, can it wait that long?

Can anyone recommend a great doctor for my 5yo suspected PANDAS? I need a doc that knows about all this as I'm overwhelmed. I looooove our current doctor, but he doesn't seem to get PANDAS. He's heard of it and saw himself that DS's cumpulsive urination that lasted 3 weeks went away after 3 days of abx after a positive strep culture. It just seems he thought it was an isolated episode and not something we need to stay on top of. (Maybe he's right, but I NEED to be sure) So I need a doctor that can help us wrap our heads around this. Can anyone recommend someone? Of course ideally we'd like somone local (closest large city is Nashville). Will travel if need be.

Please bear with me, I'm at a low point. DS (suspected PANDAS) had strep that started 3 weeks ago. Fevers, sore throat with white patches. Was on cefadroxil for 5 days but ended up with walkign pnemonia. At that point he was given rocefrin (abx injection) and five days of azythro. I asked for a longer duration of azyrtho but was told he didn't need it because he had that rocefrin. I was planning on insisting on another throat culture after he'd been off abx for 2 weeks, but here we are at 7 days out and DS still has white patches in his throat. (he was seen by doc 4 days ago and doc said he looked fine, but I see them. It's not like one or two little white spots, it's quite a bit. So, what now? Is Monday too soon for a reculture? (I was actually thinking abotu taking him to one of those minute clinics for a rapid test tomorrow) I NEED to find a new doctor...will post a seperate thread...

we have the cefadroxil that we discontinued because it wasn't working. should i give him that? today's his last dose of azithro his behavior was really improving until this morning. he was like a different child, happy, active, PRETENDING!! He's having a rough morning though.

Well, the doctor refused my request for more azithro. Making an appointment to see his regular doctor on Monday.

Thank you both. I called to ask for more azithro, we'll see if they go for it. With my doctor out of town I imagine they won't be so helpful. When I mentioned DS's PANDAS when we were in with pnemonia, the doctor looked at me like I had a third eye.