monarchcat

That is a fantastic idea.

This made me laugh (though not in a truly "funny" way)... that is EXACTLY the kind of thing my ds does. Try saying "It's 2 O'Clock" and he'll argue me into the ground because it's actually 1:59.

I'm looking forward to seeing that. I pre-ordered the book and it should be here today. I'm excited to read it! Beth Maloney is speaking at a local library in October. My husband and I will definitely go hear her speak.

I thought the same thing about my ds (8), but just last weekend we were out and he had a headache from riding in the car and all I had were advil pills. I talked him into taking a big mouthful of juice, then pushing the pill in between his lips, swishing around and swallowing the juice (thus swallowing the pill). Worked like a CHARM! By the next day I had him swallowing big honking probiotic capsules (had to bribe him with money to try it the first time, lol) Give it a shot! It thought it would be easier to take the sip of juice first, that way he never really felt the pill on his tongue. Oh, and in answer to the original question, I started having him take advil about a week after he started abx. Either the abx really started working around that time or the advil really helped because all of a sudden I had a new kid at home... patient, kind, calm, etc. It was wonderful for three days and then he got sick, unfortunately. It's worth a try! Just try to make sure he eats when he takes it so it doesn't upset his stomach.

Isn't it a weird feeling to see those numbers? I felt such a strange mix of emotions when I saw my son's antibodies and high cam score. Glad you got the confirmation you were looking for... sounds like you are right on track for great treatment!

I would also definitely recommend Dr. Cunningham's test. I was so conflicted as to whether I truly believed my son had PANDAS because he wasn't typical in a lot of regards, and he wasn't nearly as severe as many cases I had read about. In fact, my pediatrician offered a month of antibiotics as a trial last June and I said no... I just wasn't ready to put him on ANYTHING until I was more sure. Later in the summer I did the Cunningham test and that pretty much clicked the last piece of the puzzle into place. If the cost of the test is an issue, ask them when you contact them if you can pay less, or nothing if necessary. They ask for $200 to offset the costs involved, but it's not mandatory. If you can pay the $200 it's WELL worth it, but if it's prohibitive, then it shouldn't stop you from doing the test.

After sprouting strep symptoms after 11 days on 250mg/day I brought my 8 year old son in and the NP told me that 500mg/day was needed to eradicate any infection and she prescribed 5 days worth at 500mg then we'll go back to the 250mg/day.

I haven't read it yet. I posted the other day about my stepson in his first semester at medical school listening to a neurologist speak about tourettes and tics.... well the next day they had James Patterson and Hal Friedman speak. The book was part of their "summer reading" before starting med school. I am looking forward to reading it.

I have a phone consult set up in early october and I'm really looking forward to it. I'm sick of feeling like I know more than the drs, etc. LOL

Back from the appt. Rapid test was negative and the NP said the 24 hour could be neg too because he's on abx, but that he looks streppy. She said that the 250mg/day of azith that he is on is not enough to wipe out an active strep infection so she put him on 500mg for the next five days, then back to 250mg. Even if it's viral, I think I'm happy to have him on the short course of higher strength in case of hidden strep. It's funny, he's been so amazing the last couple days and today I definitely see the snappy irritability/irrationality back, but then he'll have moments when he's super sweet. A definite mix. I'm keeping him on advil, too so maybe that will help the PANDAS symptoms somewhat.

He didn't have strep 11 days ago, he was started on the azith after receiving the Cunningham study results. I don't know if there is any strep around, but, of course, in a third-grade classroom that's always possible. And, yes, it seems like azith was doing it's job of either eradicating any "hidden" strep and/or the other properties were helping (along with advil). His symptoms were way down. I'm wondering if there are any strains around that are resistant to azith... the advil is wearing off and he has a sore throat, fever, headache.... definitely "quacks" like strep. LOL

That was great! Thanks for posting!

We are on day 11 of Azith 250mg/day (this is our first course of treatment for PANDAS). He was restless all night then woke at 4:30am with a headache, low fever, sore throat and nausea (he gets nauseous whenever he gets a fever so it may or may not be part of whatever he has). He took an advil and after an hour or so claimed that he "feels fine". Maybe a tiny headache, but no sore throat and his belly feels better (ate pancakes for breakfast and was mad I wouldn't make him bacon). I'm so afraid of strep and of course since he's back in school now... it certainly is possible. He's been doing GREAT the past few days... a dream child. Has said the tics are better and he is "less anxious" at school. This morning he's been definitely grumpier... within the normal range for any 8 year old boy who doesn't feel all that great, but different than the last few days when we've seen remarkable glimpses of a happy, patient, sweet, kind boy. I totally expect, though, that whatever he has will trigger some PANDAS symptoms, even on the azith. How likely is it that he would have strep on that dose of azith (he's about 80lbs)? If it is strep, would he culture positive or would the antibiotics interfere somehow? I Have an appt for a culture at 1:15 today, but wanted to see what your experiences were. My ped practice doesn't know a lot about PANDAS. Thanks!

My step son just started medical school and he said that just yesterday he sat through a lecture by a neurologist who discussed tics and tourettes. The dr. mentioned PANDAS during the talk and didn't seem to indicate that it was at all controversial or "non-existent". I find it ironic and remarkable that my PANDAS son's pediatrician had never heard of PANDAS, but my 1st semester med school son is now informed on the subject. I can only hope that the new generations of doctors are going to pave an easier road for parents like us, and our PANDAS kids.

I was so worried about him today while he was at school, but he came home at 1pm (half day on Wednesdays in our town) and for the first time so far this year said he had a GOOD day! The tics didn't bother him at school, and except for one period of irritability/anger this afternoon, he has been pretty calm and sweet. Homework went much, much smoother (though I still had to coach him through everything to avoid him getting mentally frozen). Leg tic showed itself only once as he got a bit anxious, but he calmed down and it didn't happen again. Hands are ticcing, but not terribly. I gave him an advil at 7am, and another when he got home at 1pm. I think that probably helped quite a bit. I wouldn't force the issue of homework, except that ramps up his anxiety even more. He can't NOT have it done... that would be completely unacceptable to him, but at the same time he suffers doing it. I'm glad today was better. He didn't like doing it, but we got through it without fuss. I think the leg tic was one that he noticed, so once he began focusing on it it got very bad. I believe the advil probably helped minimize that today. You guys are soooo right that I have to look at this weekly, and not day by day. Yesterday scared the crap out of me.... LOL... thanks for being here!

My son has predominantly tics as well, coupled with behavioral/anxiety issues. I am just realizing now that he has some underlying ocd issues, but they are only with his thinking.. he gets very "stuck" on things, usually an argument. I have always used the word "compulsive" when I spoke of how he argued with me, but never really considered it to be a manifestation of OCD. I see now that it's there, but the OCD aspects are very mild compared to other kids. His CAM score at 193 puts him up near the SC kids, so I guess that reflects the fact that he is more TIC and less OCD.

Thanks, guys. I did call Dr. Latimer's office this morning and have a phone consultation set up for Oct 2nd. It's going to be hard to wait, but I'm really excited to have that ahead of us now. The woman I spoke with in the office was so nice.

He's never been on zithromax before. Before I started the antibiotics he was dong "ok", not in a real exacerbation, but his CaM Kinase II score was 193 and 3 out of the 4 anti-neuronal antibody titers were high. I felt like that was the "proof" I needed to start treatment with antibiotics. He's been a stress ball ever since starting school this year, though (which was a week before starting the meds) and so I feel like anxiety could be contributing, too, but something is definitely going haywire. I just don't know if i need to hang in there longer. He's in the tub now and being goofy, so that's a good sign. I think most of the horrible ticcing was due to homework anxiety. He is really bright and this stuff should be very easy (it's not tough for anyone this early in the year) but he gets so...mentally stuck... that he can't process even the simplest work without panicking. These new tics scare me, though... he's never seemed to notice or be bothered by tics before, but these make him cry. :-(

DS(8) is now at one week on azith 250mg/day. I posted about how I thought the tics were decreasing but the behavior/moods were up and down. Well, the last couple days he's been complaining of a leg tic that is bothering him. He has said it bothers him at school, especially when he is sitting, and it seems to bother him most in the evenings (homework time). Tonight I am really freaked out because he has been crying all evening because he can't stop ticcing and I can see/feel his legs tic/contort. He is absolutely suffering with homework - MAJOR anxiety over stuff that should be really easy for him. Anxiety/crying/ticcing... vicious cycle. This is the first time I've really looked at him and said, "he really is *sick* with PANDAS." It's been a little abstract to me before this, but this is as bad as he's ever been. I'm so worried and I don't know what to do. I've been giving him advil but not consistently. I gave him one tonight when he was bothered by the tics, but an hour or so later and it hasn't seemed to help. I know in the other thread we talked about giving it a full month to see results, but he has NEVER had tics like this. Do I ask his dr to change to another antibiotic? Do I ask for a steroid burst? Do I wait longer? I can't bear to see him get worse as I'm trying so hard to help him get better. He's had tics before, but never leg tics and these REALLY bother him. Thanks for listening to a panicky mother tonight... My pediatrician really doesn't know anything about PANDAS and I feel very alone in all this....

Thank you guys SO MUCH for all your responses. This board has become such a great source of support and information. My son is now at 1 week on the azith and we definitely see changes, some good, some bad. I think he's definitely ticcing less. The behavior is up and down, though. Sometimes he's very volatile and irritable, but yet he's been doing things the last couple days that are new, like getting up, getting dressed and brushing his teeth by himself before he comes downstairs in the mornings. So I guess we just ride this out for now and keep an eye on things!

Though it doesn't mention PANDAS, I thought this was interesting and wanted to share. I ordered the book mentioned within the article, The Autoimmune Epidemic. Has anyone read it? http://www.huffingtonpost.com/dr-mark-hyma...o_b_283707.html

I guess I thought the probiotics could cause yeast die-off? Is it just antifungals that will do that? I'm interested to know why probiotics cause your daughter to react? Do you know why the one that she does take is different? What do you mean by "activate her"? And, no, I didn't really start him off slowly on the probiotics. He has taken Culturelle in the past when he's been on antibiotics for an ear infection, strep, etc so I thought I'd just start him out on a pretty strong dose to ward off any tummy/yeast issues caused by the abx. I probably should have started him off slower, but I think I was just so eager to get good stuff into him. LOL No, that wasn't me. I have a pediatrician who admittedly doesn't know anything about PANDAS but was willing to prescribe antibiotics based on the Cunningham results.

My son is 6 days in to his month of Azith 250mg/day. My husband thought he noticed a decrease in tics yesterday, but I thought he was about the same. What is different, though is that we've had a terrible couple of days behavior-wise. He is angry, moody, irritable, foot-stomping, irrational, etc. All behaviors that we've seen from him before, but not this bad in a while. Since starting the Azith I have also been giving him probiotics, usually one Florastor and one Culturelle per day. Could this be yeast die-off? I don't know if he had any overgrowth of yeast prior to this. He has never had any significant stomach issues, other than the fact that he has a tendency to throw up in the middle of the night if he's eaten too much junk food during the day (movie theater popcorn is especially bad). I'm really careful with what he eats as he's almost phobic-ly picky, but in the event of a birthday party, cookout, etc at someone's house where I can't monitor too closely, he'll eat too much chips, cake, etc and then wake up at 2am and yarf. I was telling myself that I might have to give it the full month to see results from the azith, but I wasn't expecting him to get worse... :-(

I started my son on azith yesterday and have a few doses of Culturelle that I'm giving him, but then I thought I'd try Florastor. For those who use it, where do you buy it? Do you use the regular or the kids? My son is about 80 lbs and is on 250mg/day of azith.... Thanks!

So after putting puzzle pieces together for the past 9 months, culminating with the Cunningham results of elevated neuronal antibodies and a CaM Kinase II score of 193, it's obvious that my son has PANDAS! He has never been a "classic" case, so until I had the data from the study it was hard to confirm. His ped does not know much about PANDAS but has been willing to listen and willing to follow what I asked for treatment which is 30 days of Azithromycin (250mg/day), most likely followed by a prophylactic dose after that. I just gave him his first dose and the relief I feel is immense, but coupled with nervousness about whether we will see results and when. I am trying to tell myself that is we see at least the tics go away that will be fabulous, but I really, really, want this boy to be happier and feel better. He is anxious, irritable, has terrible self esteem, etc., etc. and I have said for three years now that SOMETHING is keeping him from reaching his full potential as a happy-go-lucky kid. I so hope this helps. My next step, I think, is going to be finding a great nutritionist who will be willing to help me find the right supplements, etc. to help his brain heal and help prevent future exacerbations. This forum has been a LIFE SAVER. Perhaps literally! LOL Thanks to you all!