MashedTaters

our pandas doc didn't test for lyme. She asked if we'd been to CA or the east coast and the answer is no. Not sure what that was about. Nope no one else is sick. how does ibuprofen help? Thanks everyone!

He's a ear infection, sinus infection, upper respiratory infection kiddo. He's not easily swabbed, and he's not showing any signs of infection

So my kiddo has been on keflex since 5/25. The first month he did FANTASTIC, and had a great break from his sinus infections and was doing very well. Well for the past 2-3 weeks or so, he's been screaming random words like he's got tourettes, tapping his whole body like he hears a rhythm in his head. And that'll last for hours on end. And of course there's the saying the same word/phrase over and over. ya, it's not funny to hear the word 'boobs' coming from a 6 year old boy 32904892309320932 times. (no joke) We got some good looks at that one. sigh. We see our PANDAS doc the 17th, but i'm just curious! thanks!

My Pandas doctor ordered a Chest Xray (and a head X-ray) to see if he had any current infections. The head X-ray showed that he had thickening of his sinus'. When we saw the ENT, he decided to do a Head CT to see where the thickening was, and what to do about it. Fast forward to yesterday, when i got the Head CT results in. He said that he's got mild thickening of the sinus' and that it's not worth operating on, which is fine, then we discussed the tonsils and adenoids. He said he wants to leave them in place since he's been asymptomatic since starting on the keflex, which is fine, but if he starts having any issues, to bring him back in, and we'll go from there. I said 'yeah, i know 'pandas' protocol is to take them all out' he said 'yeah, but if he's symptomatic, then just to leave him for now. Oookay. Anyways, the point to the post, The PANDAS doctor discovered something else in my child, that we didn't have a clue about when she did the Chest X-ray. I took my kiddo to the allergist and gave them the Xray CD, to see if he wanted to see his lungs (the allergist is on the fence with asthma in my kiddo) and when he came back in from looking at the X-ray, he lifted my kiddo's shirt to check his back with his stethoscope. I thought that was kinda weird, normally they either go over it, or just put their arm under the shirt. The allergist asked me if my kiddo had scoliosis!!!!!! http://s1242.photobucket.com/albums/gg536/MashedTaterspandas/ Sure enough, he did the bend over test, and the right side of my kid's ribcage is protruding through his back. We see the PCP about it monday. Crazy stuff.

Your kiddo tells you that the medicine he's taking makes him feel so much better! (500MG keflex (total) every day) AAANNND when he's been Sinus infection free for almost a month! w00t w00t! :D

We've been using the kids florastor for 22 days now, and i just bought the jarrow one. ( http://www.amazon.com/Saccharomyces-Boulardii-Value-Size-Count/dp/B0056GCLVO/ref=pd_sim_hpc_1 ) we start using that tomorrow. As for yogurt and cheese, we were told that adding yogurt was pointless because of the keflex would just kill everything good in the yogurt. I give my 6 year old applesauce with the florastor, and he takes it easily. Cheese is okay if it's been COOKED. So like pizza? That'd be fine.

I did lots of reading last week about it too. We eliminated all yogurt, and aren't allowing cheese for the time being in our PANDAS kid, exception of 'baked' cheese to where the bacteria dies off. We're really sad about the no 'foyo' anymore too! But i'll just get him a MCD's ice cream before we go, so not so bad. uuuuugh. He's so very sensitive, that eliminating all i can would be beneficial.

strep- Came back looking low. My kid's results is 75. Normal is 150+ Syrup antibody My kids' is: 240. Normal is 376+ DNAC antibody Strep reflex titer Positive (shows strep) My kids' is: 100+. Normal less than 100. Mono- Negative phenomena High right at limit 164 IGM my kids' is 1-32 normal is: 1-32 with a reading of High Help? lol. I'm assuming this is the PANDAS confirmation? Strep reflex titer Positive (shows strep) My kids' is: 100+. Normal less than 100. Thank you!

So Ds was diagnosed PANDAS two weeks ago wednesday. He's been on keflex since, too. While he's mostly doing awesome, i'm starting to notice some random talking that i know is pandas associated, but i don't know what to expect while being on keflex. He's 6, so i'm sure he doesn't know what it means when he says stuff like 'i don't want to be alive anymore' 'i want to burn up' said with a flat affect. It's not out of the norm for him to say this, but it is in the fact that he's not screaming it while being mad (he was heavily medicated for 'bipolar' which we know he's not now.) He's overall way happier, and totally able to function, and act correctly! He's been infection free since 5/15.

Yes, you can open them, no problem! :highfive: Thanks!

That was a GREAT read! Thank you! PANDAS sucks, but it's SO interesting to me, that everything we've been dealing with FOREVER ISN'T what they thought (bipolar w/mixed severe psychosis) and IS all about PANDAS! (and i'm so happy there's a cure (i say that loosely) too!)

Actually, I think it's the organism count (billion units) that matters, rather than the milligrams, since milligrams also includes the food source for the little critters while in the capsule/bottle. Thus far, we've not witnessed any problems associated with "more" rather than "less" sach b., so you might consider adding the contents of a second capsule to the dosing, taking it up to 10 billion units; I don't recall what Florastor's count was, though. When our DS was taking antibiotics, his "sweet spot" for probiotics -- made his tummy feel better and put a halt to diarrhea, but didn't promote excess gas, etc. -- was in the range of 150 to 200 billion units daily! Sounds like a lot, I know, but some folks advocate even more. Now, off of antibiotics, he's taking a total of 55 billion units daily (one mixed probiotic blend with a high unit count - 50 bu, and one Jarrow sach b. of 5 bu), and his gut seems happy and balanced at present. Perhaps a good topic for your integrative physician, DAN!, etc. Okay so you can open them then? I'll just get it. Anything with out florastor kids' fructose, i'm good. :\

I was going to order some of this after our florastor runs out. is this product the same 250mg's that the florastor is? And is it an openable capsule? I'd need to put it in applesauce for my 6 year old! Thanks! Okay looked it up: http://www.jarrow.com/product/563/Saccharomyces_Boulardii_MOS It's 50MG less than the florastor. Hm. I wonder if that would make such a huge difference in the potency vs. florastor.

So what IS protocol? We see the ENT tomorrow, and while i know he is the go-to for the PANDAS kids locally (the support group here said so too!) I don't know what the protocol is! Off to google!

Wait, My DS has this also! It's been unexplained for so long! C.R.A.Z.Y. How everything that has been unexplained for so long relates back to the PANDAS.