MIAS_MOM

This is just what i wanted to see ! I now can understand bands 58 and 41, Thanks so much, and I will take his information with me to our next ped visit. ( God help us!)

I totally missed this post!! Very interesting, thanks for showing me. and if your ds's comes back positive, please send me a message, I think your ds is PANDAS? Right? I'd be very interested in knowing what you get! Thanks.

I totally missed this post!! Very interesting, thanks for showing me.

Another positive 41 band here.

Thanks for that website. I didnt realize how the symptoms are so much like PANDAS symptoms. Do you think in finding a LLMD, that it should be one that is also a PANDAS believer?

My dd age 10 who has PANDAS was tested for LYMES because of severe ankle, knee, leg pain and unable to ambulate for more than a few minutes without being in severe pain. I pressed with our Pediatrician to test her, whom didnt bellieve it was LYMES and stated you cant get LYMES here in our area ! (southern midd tenn) My dd's 1st labs came back with bands 23, 41, 58 positive. Our ped. had us come back to retest because she called the lab and thought it was false positives! So we punished our dd by resticking her and the second time we got all negitives, except band 41, Borrelia. Our ped. told us she called the lab again (Quest Diagnostics) and the tech told her it was from a dog bite and not a "pathogen" so no need to treat. Ok, I'm not sure they know what they are talking about ! Anyone with LYMES knowledged would be so helpful to me right now. (My dd is awaiting an appt end of June at All Childrens, Fl. for some REAL PANDAS help.) And yes, leg, joint pains can be PANDAS related, Just r/o LYMES. She has had Tons of tick bites, we live at base of mountain in woods ! The lab tech that works at my facility stated he believed all ticks carry LYMES, it just depends on the individual's immunity as to if they actually contact it. ( please know thats not my quote though !) Thanks in advance.

The medical process is way to slow moving, hang in there. I'm happy to know you made it back safley. Can you pm me the name of the ped neuro you are using at Childrens? This post gives me some interesting ideas about where we stand.

My dd 10, always has a PANDAS flare up with a simple cold to flu. She had H1N1 last year and that was one of her biggest flare's (without strep) She has hallucinations as well. Hang in there.

Yes, we are Southern Tennessee, with LOTS of tornado weather, especially this time of year. She always has a bad headache on these days. We travel up the mountain ( we are in the valley ) to her school. She will develop a headache alot of the time going up, then is miserable all day. On warm days she is so so. (she has never been great) I will keep an open mind about it and watch to see if there is a pattern. Most of the time she is already at school when the storms hit, or we are running errands. They usually hit around noon to evening. I think its air pressure vs. anxiety. Thanks for the info from all of you, and I will find the vibrational energy thread, I saw it earlier but didnt read it. Thanks again.

I know for a fact that any viral illness is a flare up for my 10 yr. old dd, but what about bad weather? I am really starting to see a conection. My dd has had PANDAS for over 2 yrs. Anyday that is "stormy" with either black skies or strong winds, is a very traumatic day for my dd. Her anxiety, aggression, and phobias blow into a severe flare up,this last Friday nite we played "tackle" all evening to just keep her from hurting one of us. Is this something anyone else is seeing? And is there any known reason, I dont really understand it, unless it's just something I'm putting togehter that might not actually be.

This is very touching. The hardest part for me is that I like to stay busy, sitting down for a period is tough, I would rather be doing, but I will work on it. Thanks for sharing.

That's interesting, we just started using netflix to have a stand by family movie ready for those needed downtimes. I too never encourage tv, but trying to adjust to the fact it is a needed time for the whole fam when we are all going at each other and stress levels are high.

Interesting. We've had the same commentary from our original/old psych. Just a couple of weeks ago, however, we switched to a new, more PANDAS-savvy psych. As she reviewed our very long list of experience and medications tried, she stopped and asked specifically, "But what have you tried SINCE the PANDAS diagnosis and treatment? Nothing before 'counts' because you had an underlying medical issue that was not being addressed." Then she drew a thick, horizontal line across that point in time on the medical and medications history I'd given her. God bless her, she's the first one who's really gotten it, and the light bulb went on for me when she said that, as well. Do you have antibiotics in the mix? You haven't said thus far. If not, chances are there's still an underlying immune issue that the psych drugs alone aren't going to be able to eradicate; they might just dampen the symptoms for a time. Go see that PANDAS doc, and/or, in the meantime, ask your PANDAS-believing-but-inexperienced ped to help you with a nice, long abx prescription: a month or more of azith or Augmentin. Track the results carefully. See if you witness any improvement. Wow, OK, No antibiotics bc neither of the two drs wants to be responsible for admin something they are not familiar with, So I am REALLY looking forward to this appt, praying it will help us out in a way no one else here (hometown) has been able to do. I will however get information on monthly antibiotics to take back to the peds with us in the meantime to see if she will go ahead, I did talk her into labs this last time !

We happen to be in the "black hole" world of PANDAS. It took 6 mos and an 2hr dr appt to get our PANDAS diag. We are still being seen and treated by that psychiatrist. Our Peds believes in PANDAS, but no knowledge at all. So the treatment plan had always been, just like posted above, if the med isnt working, up the dose, do this several times, not working, change the med. I believe to this day my dd has tried almost every psych drug out there, and I feel that even though we have more control now, we should be better than we are now, and I feel like the meds may be part of the monster. I've questioned and asked about the medicines doing more harm, but am told, she is doing better than she was before. BUT before is over 2 yrs ago. Our psych finally started talking about sending us to a REAL PANDAS Dr a few months ago, we at the moment have an appt at All Childrens. ( 15 hrs away ) so I will hope to get rid of these meds at that time, thankyou for answers, I've held back on this one, because i could feel frowny faces coming my way ! I got the sense most PANDAS families do not use this type of treatment. Glad to know we might can do it too!

The Explosive Child has been one of my best books by far that has helped, I had my husband read it as well, it gives us more "control" versus "explosions." Really opened my eyes to know what to do, when we didnt have a clue.

OK, I read this yesterday, and I'm still tearing up thinking of you, so I got to post "something" so I can get on with my day ! My heart cries with yours, for your pain, for my dd's pain, for PANDAS pain. I do believe pain can make us weak or we can become stronger by beating it ! Lets beat this ! I'm not gonna let it take me or my family down ! Be strong, You ARE gonna be a GREAT PANDAS in the future Love to you.

thanks dcmom, its been such an "unhappy" time. We will continue to stick to "simple" for now. It just seems the world is spinning by on the outside and we are prisioners on the inside. I want her to get out so bad, I will try to bring it inside the best I can for now.

One of my biggest concerns is over medicating, or using medications that end up making PANDAS worse. My 10 yr old dd is on Celexa, Tenex, Abilify, Neurontin, and we have Ativan P.O. and I.M. for emergencies. We have to use the Ativan about 2x a month. She's had meds for years, we do behavioral therapy every month. We still have good day/bad day. I'm not sure how her small body can even tolerate these amounts, but they seem to help in some small way,,,,,I think,,,,,but I cant help but wonder what she'd be like "today" off all of them. I dont see much about using these meds, Is there anyone else out there that is "loaded" and any ideas or thoughts on if they are working for us, or against us?

So we saw our Pediatrician last week to get our records for our upcoming trip to Fl. when she looked at our sad, tierd, wornout expressions and said, "Do you ever TRY to have FUN?" OMG !!! FUN ???? How on earth do you do that when it blows up in your face? I recently took JUST my PANDAS daughter on a short trip ( cars are a big time phobia/panic/anxiety) with our horses ( love of our lives ) and we took a breath taking view trail ride on the mtn. top with one of my closest realitives as a backup support. It took over an hour to saddle up with my dd because OCD'ers have to go s t e p b y s t e p. We were finally off, she is now tierd just from getting ready and making sure everything is perfect, then has a full blown panic attack when she see's the "bluff" as we were already 30 mins out. Our horses walked back ALL BY THEMSELVES, and I had to hand lead my 10 yro old out of the mtn, thinking she would have a heartattack before we could get out. It never fails, anything I put together for her sake to TRY to have fun blows up into a crisis. Even outside yard adventures end up with her running into the house straight to the shower to wash or straight to her bed to climb under the covers and cry. So, How Do We Have Fun with PANDAS ? Because if there is a way, we need it more than ever now! Fun left our family over 2 yrs ago.

My dd has various hand jestures, one is "touching the air just right" another, touching objects then smelling that hand, followed by her other hand that did not touch it, and our psych. refers to these as OCD. She has a verbal "cluck sound" that our psych calls a tic. I am totally with you on this question as I have been confused myself as to how to identify between the two, OCD vs Tics. Some of her other docs says "tics" and other times they say "OCD" almost like they mix them up ?

You are my hero for doing this for all our children ! Thankyou so much, Let me know when we can get the goodies! I posted my e-mail on your blog.

I have "Cancer Awareness" shirts, uniforms, pens, etc. Is there any kind of products out for PANDAS? Bumper stickers or anything ? Some days I just want to scream PANDAS to the whole world !

My dd's last rapid was positive, I requested it cultured just for documentation paper work since we are getting our Medical Records ready for review in another state, and the culture came back negitive ! I took her to the peds because she had very, very, painful sore throat, it was puss filled and swollen, had fever and all the clasic syptoms of strep, plus PANDAS flare up, I was shocked with the neg culture, the ped said to discontinue the antibiotic, HA, NO WAY !

Very good point ! Our Peds, who do not treat her for PANDAS, or understand it, but do believe it, are the ones to treat her for strep, I never thought of having her start on a higher dose antibiotic, but that makes perfect sense, I will def. bring this up to the peds when we geat our next strep. Very helpful ! If we could just "know everything" we might not miss the "obvious!" Great tip! Thanks, mucho!