Stephanie2

Wow, this is unreal! So, really our pandas kids are more at risk of being "allergic" to the very thing that they need the most! Scary! I don't think that is what is happening with my son, though. I kind of wonder if it has to do with LDN (low-dose naltrexone) which we had started shortly before this episode. I still have yet to ask our biomed doc about this...need to.

Thank you all for the suggestions and support! It means so much to me on a night like tonight! Somehow dh got him to de-escalate and he is now in bed, not sleeping, but he is quite. I was hoping you would chime in, I was following your posts with horror Thank you for the feedback regarding the meds, it really helps me to understand. I do think that he reacts negatively to the ativan. There was a time when it did help about 6 months ago, but this time I gave him a lot more and I just think it made him worse. Tonight we decided to forgo the ativan and the rage only lasted about 1.5 hours rather than 4 like last night. I have some risperdal here, maybe I should start it, but I think I will check with his pandas doc in the am. Wow, that is amazing that they started IVIG right there at the hospital! No, the ped does not know about the steroid. I did not think to call her. Thanks Kimballot! Thanks I may call but there may be tears this time!! I can hold him down but he fights me so hard, a couple months ago I injured my neck "wrestling" with him...costed me $1200 at the chiro to fix it (I had a previous injury). I usually ride out the rages, but last night's was 4 hours and tonight I panicked and thought I WON'T LAST THAT LONG! I just wanted someone to inject him and make it stop!

My 6yo has had severe rages on and off for the past 2 days. We are exhausted and nothing seems to bring it down (tried tenex and ativan and activated charcoal). We think it is related to the steroid taper plus some gut infections that the steroid is flaring. If we bring him to the ER tonight, what will they do? Will they inject him with something? Admit him? I have no idea what to do here...

Oh my goodness, so are you saying that your pandas child cannot tolerate any antibiotics?

My 6yo has had urticaria before (for over a year, in fact it didn't go away until we started biomed tx), but it was never life-threatening. My 2yo had swollen tongue/lips/thousands of hives all over his face and torso, started to get wheezy but we caught that just in time. I have to carry an epipen now and I don't even know what he is allergic to. Can you tell me what serum sickness is? Both boys have been on plenty of antibiotics, so I guess this could be a possibility. Sure! IgA 379 (ref range 24-121 mg/dL) IgG 1479 (ref range 533-1078 mg/dL)

See, this is what I am talking about - I still don't have my 2yo figured out in terms of symptoms of infections. Amber, everything you list here is what is going on currently with my 2yo (a couple days after steriods): bloated belly, running in circles, standing on head. no self-injury, but he did hit my husband this morning which I do know is classic clostridia in him. You are making me think, here. I wonder if I need do do an OAT and do a round of vanco. Or maybe I should just throw him on some biocidin and see what I can do, but that is full of oxalates from what I hear, which I was told my our biomed doc that oxalates are contributing to the belly. Also, he just got back some labs that show high IGg. Maybe I need to run IGg food allergies. I'm really brainstorming/rambling here. Sometimes I get so confused with my 2 boys I don't know which way is up!!!!

Amber, we have kids the same age and diagnoses...haven't "talked" in awhile!! Anyway, I just did a steroid burst on my little one (2, almost 3) and he was a little irritable, but you have to observe very closely and see if the irritability is pandas-like (meaning ocd-ish, or just that same pandas emotional lability) or if it is more depression-like. Hard to explain. But it is a different type of behavior with the steroids as it is with pandas. For my 2yo it was less "fixation" and more just fussy. Now for my 6yo, the irritability is much worse (he is on day 6 of a 25 day taper), not ragey, but lots of dramatic crying. It was similar, but different than the pandas meltdowns. There was a little anger tied in (pounding fist on table when not getting his way). The other thing I want to mention is that I started some 5htp, knowing it was depression related to the steroids, and it helped dramatically. For him I am doing 75mg at night. For my younger one I was told that it is safe to do 50-100mg at night (although I didn't need to). Also, I know you, too, struggle with clostridia. The bad news is that on day 6 for my 6yo I think I am seeing an upsurge of clostridia symptoms...wait for it...WHILE ON VANCO!!!! Bad enough that I had to give ativan today after school. You make a compromise when you start steroids b/c you are almost guaranteed to pay with the gut. But in our case, I knew that going in and I do not regret it b/c I could see that we were going to have to line up IVIG if I did not do this. Not covered for us... We are on the second day off the 3-day burst for my 2yo and he is still holding, but I am doing a motrin protocol to prevent the rebound of symptoms that he has had in the past. Tomorrow is the last day of motrin and I am praying that he holds steady. Otherwise I guess I will have to do a taper with him as well. In a nutshell, make sure you are very details with your notes during this taper. Make a note of specifically what symptoms are disappearing and which ones are appearing. If the typical pandas symptoms are going away (even if the gut is going to ###### in a handbasket) then you can rest assured that you did the right thing and all is not lost...keep us updated!

just got this result from quest on my 2yo, we ran this lab b/c of anaphylactic shock. interestingly, after going into major shock after putting a walnut in his mouth, he is not allergic to any nuts...medical mystery...severe, life-threatening urticaria? never heard of it.

my 6yo had staph on one of his throat cultures. think i told you that in the other thread. but my 2 cents on the azith is maybe you need an abx switch to see what happens. then again, if you are not seeing the pandas symptoms ramp up then maybe wait it out...?

Michael, last we spoke, your comment about you not needing so many supplements anymore really stuck out to me. I am pm-ing you...

yes, olive leaf extract. I use 500mg, 3x/day, new beginnings brand. when i first started it, in terms of pandas, i saw results within 3 days. I think it lost it's effectiveness after a few months though, so now I am going to rotate it with other naturals. I am doing oil of oregano right now and I'm not sure what else I will rotate it with. In terms of the autism symptoms, I think I also noticed a big difference in three days. Wendy, did you want to say something? Don't be shy...LOL

Wow, that is quite a concensus! I guess I was bracing myself for the "how dare you skip the initial panel and go straight to an llmd..." lecture since this topic is so heated these days! LOL Anyway, your comments are so very helpful and I think my husband kind of leans the same way. He has been fighting me on the testing but he is fine jumping right into lyme treatment. Maybe he has a sixth sense on this. Next question is, how do I even go about finding the right md for my boys? I strongly prefer someone who is willing to work with our current biomed practitioner b/c pandas isn't going away anytime soon, neither is autism. The boys are on such a strict protocol and when it gets out of balance they fall apart. I need someone who understands the integrated part of this and can work with what we are doing. Maybe someone who is familiar with autism/dan protocol? Do I contact the LIA organization (lyme induced autism), anyone have any insight with this? Eljomom, back in March 2010 my boys had a sudden onset of pandas during the time that my 2yo had a big flare of impetigo. I brought them in for throat cultures and my 6yo tested positive in his throat for staph aureus! At the same time this was all happening, I got an infection on my finger (around the nail - I think it's called paranychia) that usually indicates staph. So, I never did get a positive culture of the impetigo, but since he had it around his mouth and my boys kiss each other on the mouth, I am assuming that is how it got into my 6yo's throat. (this is beside the point, but my 2yo's thoat culture came up positive for enterobacter species - I still don't know how that came about - we are a family of medical mysteries LOL). This impetigo has been going on for over a year now. When he is on Augmentin it fully remits, but the minute he goes off it comes back. I have done it all - bacitracin, altabax, intranasal admin of abx, several different antibiotics. Always comes back. So I finally decided that there must be some major resistence going on and I decided to go all natural and that has helped a lot. I still, though, have to use it 2-3 times a day, plus intranasally, to keep the sores away. I use tea tree oil in the bath and I use this product on the sores and in the nose: http://www.iherb.com/NutriBiotic-Skin-Ointment-2-Grapefruit-Seed-Extract-5-fl-oz-15-ml/4727?at=0 HTH!

It has taken two years of biomed treatments with two boys to get to a point where I can tell which infection causes which symptoms. Initially I had to have this backed up with labs (still do sometimes), but now I can spot the infection on my own, start treatment and within 24 hours we are back on track. Each of these infections do have an overlap of symptoms, but I have found that each one also has very distinct symptoms/behaviors. Klebsiella's distinction is the sensory-seeking behaviors - my 6yo's hands have to be on someone at all times. If we try to restrict him and if the infection is more advanced he will go into a very long and violent rage that is absolutely psychotic, meaning he has no idea what and why he is beating someone up (kicking biting hitting scratching "I hate you", etc.). Clostridia's distinction is the "autism" features and the green smelly poop (like I said not always, though, so I can't always go by that). With strep I have found that the distinguishing features are fears, separation anxiety, meltdowns (not ragey, more just wilting to the floor crying like the world is coming to an end) and he has a few distinct tics that come back whenever he gets strep. And then of course there is yeast which most of the time causes the silly, drunk behaviors, the trouble sleeping, the wanting to "stimulate" himself, the chronic need for snacks/carbs. Like I said, some behaviors overlap. I had to start an elaborate spreadsheet with a list of symptoms that I would check off each day and compare all this to lab reports, etc. And it is only fair to mention that I have had expert guidance along the way with a biomed practitioner who specializes in pandas and has 2 boys with all the same issues as mine. I do not have my 2yo "nailed down" so expertly, unfortunately. I think b/c he is so speech-delayed and his gut infections do not cause quite the severity of behavioral symptoms is why I don't have him figured out yet. But I will say that with him, pandas has a certain "feel". He gets quite an anxious look on his face, will fixate on an object/activity for literally 8-12 hours per day, some separation anxiety, some fears/hallucinations at it's worst, and what I call the chronic fussies. With clostridia he is more content most of the day, but he will think nothing of hitting people!! Oh, and the poop that sends me running and gagging for sure!

After reading the recent 4-page discussion on lyme testing, I almost feel too overwhelmed to do the research and try to understand these tests (I have been doing biomed for 2 years with 2 boys with multiple infections and recovered autism - just so tired of research and spending money!). I am trying to decide if it is even worth getting the test b/c to be honest I don't know if I will believe the results and I think I plan to go see an LLMD either way (for myself and my boys). So is it even worth dropping $1230 on igenex tests? The protocol that we follow incorporates some of what the llmd's would prescribe anyway: LDN, methyl B12, and so much more. My boys are on a constant rotation of antibiotics for chronic infections (strep, staph, klebsiella, clostridia, yeast, proteus, I'm sure I am forgetting something). It seems to me that an LLMD could look at what we are doing, maybe change around a few antibiotics (meaning try one that covers strep AND lyme AND possible coinfections AND the gut pathogens), and maybe add in some supplements. Could an LLMD look at a list of my boys' symptoms and just start treating and see what comes of it? I mean money is not falling out of the sky down here in FL, I just wonder if I should save the $1200 and just go straight to an LLMD and let him/her run the necessary tests (cut straight to the co-infections, etc instead of wasting time/money on the initial panel). I have to say that I feel so strongly that my 2yo either has lyme of some co-infections or some underlying viruses (don't the LLMD's target viruses as well?). The way he reacts to OLE is nothing short of jaw-dropping in terms of, not only pandas, but his autism symptoms. His personality just comes to life, the eye contact increases dramatically, he has more speech, he becomes affectionate beyond belief, etc. This makes me wonder if the OLE, which is commonly used in the autism community as an antiviral and also for pandas, is targeting a serious virus that has been bringing this child down all along. Not to mention: sensitivity to light and noise, hypotonia, and the list goes on with his health conditions. Starting to get a little emotional...let's move on to my 6yo, shall we? My 6yo does not strike me as much of a lyme kid, but who knows? He had some asthma as a child (until we started biomed), chronic infections, severe pandas (which does seem to respond to treatment), severe gut issues. And then there's me, whose lab report apparently could be included in a lyme textbook from what I hear. But where would this lyme be coming from? My mom who we highly suspect had lyme right before she became preganant with me? Could she pass it to me and I pass it to the boys? We lived in NJ, no stranger to the woods, the Jersey Shore, etc. I don't know, I'm so confused but I feel pulled in this direction. My boys are on about 27 meds/supps each day to support all that has gone wrong in their little bodies. I have to wonder if maybe by including lyme treatment, we may be able to reduce this number down as some of their biomedical problems would resolve sooner or more fully. Lots of questions, any and all input is welcome!

I want to add that maybe some ppl are missing the gut infections that are caused by chronic abx use. My boys deal with the following, reoccuring infections, that if not controlled would land them both in the psych ward as well: klebsiella, clostridia, yeast, and our most recent proteus. I used to think strep was our biggest enemy. I now know that klebsiella will make my 6yo extremely violent, and clostridia takes away all ability to function at all and renders him completely autistic. My 2yo does not have quite the severity of symptoms as my 6yo, but he definitely is affected by them. oh, almost forgot my 2yo has a chronic staph infection (impetigo) that I have to treat 3 times/day. this also contributes to pandas symptoms (and pandas contributes to the staph infection as the tics/compulsions are aimed at the impetigo soars).

clostridia species (we don't know which one in either child) cause bad psychiatric symptoms in my boys, especially my 6yo: echolalia (repeating words that he hears others speak), repetitive speech, loss of ability to socialize normally, much less eye contact, anger/irritability (when the infection is more advanced, ragey behavior), stimmy behavior, and yes the poop that smells so bad that I literally run from the bathroom gagging (and it's green). Although my boys don't always get the green color and my 6yo doesn't always get the smell. they are helped with vanco, flagyl, culturelle.

Not really sure. I know that I have struggled with ADHD, although I have never medicated for it and I developed my own coping mechanisms for it. Also, after the chicken pox as a child I developed reye syndrome which is a type of post-viral encephalopathy for lack of better words. When my mom describes how I acted during that time it sounds a lot like my boys during pandas. My brother had kawasaki as a child and I have evidence to believe that his 2 daughters (and possibly his son) have had pandas exacerbations. My cousin on my mom's side had an acute, transient episode of anorexia that lasted for one year as a teeneager. My other cousin (her sister) has a child with OCD/tourette's/possible autism that I feel very strongly may be related to pandas but she does not believe so. With all that said, I do still think that I may have a mild form of pandas. I do get some subclinical tics/compulsions when I and my boys get strep.

can someone further explain what uveitis looks like? I ask b/c my 2yo (who, if any of us have lyme, would surprise me the least) at times has swollen eyes (meaning under the eyes) and sometimes that area looks pink/purple. Is that what you all are talking about?

Very interesting and would be a great visual for all MD's to see. Question, though. Why episodic tics outside the bounds of PANDAS? I know some kids only have tics, but wouldn't that fall under pandas or are we looking at a whole different pathology (ie more resistent to treatment, etc.).

The other thing is that since clostridia always comes back in both of my boys, I am at the point now where I just start vanco anytime I am starting another abx to prevent it from forming in the first place (it is inevitable). Maybe you should consider doing the same?

One of my friends texted me a couple days ago about the same thing - chewing things. It was clostridia. If this is happening a few days into azith, I'm sure that's what you are dealing with. Better get on the phone before it gets out of hand, increases inflammation, etc.

I am replying in all caps within your message, I was wondering yesterday about the outcome of this test, I almost called you! BTW, I know you are overwhelmed with 3 PANDAS but you are also claiming some victories. Take a break, take care of yourself and then keep on fighting the good fight!

Wow, didn't that happen over the summer, too? I'm sorry to hear! Well, I have no experience there. But I can tell you that we got through hernia surgery without a hitch in august (same idea, tissue damage). We also got through influenza A, but that is where our luck has ended. We then got strep and I can't seem to bring down the inflammation now. (I am planning to add quercetin, too). Even with all that said, I don't think there is any way to rule out the contribution of the broken bone to pandas. I would think it would have a different "flair", though, than a strep infection. Milder symptoms, maybe, or maybe without some of the tell-tale strep symptoms (fears, sep. anxiety). Good luck!

You ladies are the best, thanks! Mom love, this is what klebsiella looks like in my 6yo: severe sensory-seeking (crashing into people all day long, hanging on people, etc.), irrational thinking (ie. "why are you crashing into/hitting your brother, can't you see you are hurting him", response "because it's fun and I like to hurt him"). When it really gets bad, he will rage if we try to hold him back from this behavior. The rage is violent: biting, kickiing, scratching, hitting, "I hate you", etc. Luckily I am getting better at spotting this early on. I started the proper abx last night and by this morning, not only were the kleb behaviors gone, but his pandas seemed better. I guess kleb was adding to inflammation. We will see. Don't let this scare you, my boys are a little more complicated than most pandas kids...

BTW, wanted to mention that my 6yo had an exacerbation with his 4yo flu shot, but not with the actual flu that he got this year! Go figure!