Phasmid

Even after IVIg (although only 8 days ago), my ds12's obsession with his "fat body" is getting worse. His PANDAS doc is concerned now, and wants him evaluated as well by the OCD clinic director at UCLA. He is not avoiding all food, but the obsession is getting exhausting for both of us. It starts upon waking, and ceases only when he goes to bed. Doc says he doesn't see this with other PANDAS, but then again doesn't have very many. Does your child have/had this? Did you resort to pharmacological help as well? Did that work? Did high dose IVIg stop it? Did low dose IVIg stop it? My son had low, replacement IVIg only- wondering if I should push for high dose next time. Starting to panic now...

Melanie, I just found on Dr. K's website, that coprolalia is listed under Minor Criteria. What was other docs' explanation for not being part of PANDAS? What treatments have you pursued? Did anything help this at all? This symptom was gone after about one week on flagyl then longer time on vancomycin (oral). Absolute criteriaSudden onset (applicable to patients >5 years of age).Major criteriaSeparation anxiety (type 1* or type 2**)OCD symptoms presentAdventitious movementsAnorexia Minor criteria group A (psychiatric symptoms)CoprolaliaSleep disorders (insomnia, night terrors, refusal to sleep alone in the room)Behavioral regression other than separation anxiety ("baby-talk", temper tantrums, behaviors unbecoming of actual chronological age)Hyperactivity, inattentiveness, inability to concentrateAggressivenessSignificant deterioration in learning abilities (particularly in mathematics)HallucinationsMinor criteria group B (physical symptoms)"Puppet-like" spoken and body language; "hyper-alert" look or demeanorPresence of wide pupils particularly during the acute stages of diseaseTics (motor, vocal, complex)Urinary frequency and/or bed wetting and/or daytime accidentsDemonstrable short-memory lossFine motor skills deterioration including dysgraphiaIncreased sensory responses (to smell, sound, light, touch)

yes, indeed... "Sometimes, I have to laugh too... it's either that or cry."

my son's doc thinks we have it narrowed down to sinus infection as it is the only thing that has been tracked with symptoms and infections at school. We think strep in the sinuses. Each time, there was strep outbreak at school. The last time however, his teacher had pneumonia as well. It is almost always sinus infections he gets when i see symptoms. HOWEVER... he had his acute relapse in 09 following what we think was walking pneumonia (Mycoplasma) just so impossible to really know for sure...

If not white exudate, sounds like hand-foot-mouth disease... if so, should be extremely painful I caught it from my son, it was horrible

Oh my goodness. It is indeed scary to watch. His stopped as soon as he went on flagyl/vanomycin, but that was the first sign of anything in five years! Well, at least obvious stuff. I didn't know all the rest of his issues were related at the time! But I am willing to share a funny story about my son's episode then. I hope y'all can get a good laugh - Lord knows, we all need it. My son had started the f... word overnight. I knew what was coming, so I quick got my mom in the car after we had christmas at our house and drove her 300 miles back home so not to subject her to the h... that was to come. Sure enough, the next few days it escalated from a whispered "f...", to louder, and louder, then he added "what the f..." and "f...ing.... something or other" , and then finally to yelling "what the f..." out loud. Of course he was NOT at school. We took him out on a home contract. So, one day i have a handyman working on the stove in the kitchen. My instructions to my son were to stay upstairs, but of course he came downstairs, into the kitchen, and out comes "WHAT THE F---!" The poor guy just about dropped his tools. He looked at me and all I could do was laugh hysterically, which made the guy think I was a lunatic!!!!!! I don't recall if I explained or not. I think I laughed so hard I had to go change my pants!!

Hawks, what antibiotic is your child on now? How long on antibiotic before steroid was started? How much does your child weigh? Seems like too low dose of azithromycin for a child that age. I would double check that. If your child is NOT on antibiotic presently, it may have been too early to stop it. 30 days for acute infections.

http://www.uptodate....~LES56ZJWcWJvh6 This is one that I like. It reviews published material, provides references, and is simple and well organized. Just found that NOW they require subscription- everybody trying to make a buck. If you want, I can e-mail the full text publication, as I save an older version full text dated 5/26/2010. Let me know. I didn't want to post the whole thing on here...

I'm no expert on this but I think what they are doing is first, "turn off" the autoimmune process by the high dose infusion. Then, "replace" the missing antibodies, thus making her body more capable of halting pathogenic bacteria, with the frequent, low dose. My son is only getting the low dose (.5/kg). I don't know yet if this will be the "fix" he needs, but so far we do see improvement in some things.

http://www.pnas.org/...02/26/9247.full the link above is more relevant, as it's concerned with human pathogenic flagellated bacteria... as you notice in that list, Bartonella sp. is one of the flagellated bad guys

Actually, the below list is one of species that are mainly found free living in our environment, not within human hosts as pathogens.

The most notorious flagellated bacterium that our kids are likely to have (due to overuse of broad spectrum antibiotics) is called Clostridium difficile. Streptococcus pyogenes, the bacterium of focus in PANDAS is NOT flagellated.

The Yale study which is testing NAC for use in trichotillomania (form of ocd) uses a dose of about 1200 mg. I think... may be higher. I used 600 mg. only for my son's trich. without resolution. It may have helped a little, but didn't "cure" him of it. I didn't use the high dose as specified in the protocol. The contact found in this link (Panza) is very nice and will tell you their protocol dose. http://trials.yale.edu/clinicalTrials/displayTrial.asp?nctID=NCT01172275&pageID=1&row=3

I can only respond from our own experience. Generally, steroid makes you feel pretty good. My son improved mood-wise while on the taper this past summer. However, when he had an active infection (he was treated for allergies rather than for the infection that he had and we didn't know then), probably strep due to pharyngitis, sinusitis, and was given Prednisolone, a liquid oral prednisone for redusing the inflammation in his throat and sinuses, that is when we lost him. We believe what happened was that he had undiagnosed strep, and then the pred. knocked down his immune system. This allowed the infection to run rampant. During the past summer, when he was treated for the "leftover" PANDAS symptoms (mild ocd, mood), he became very calm, cooperative, and more focused while on 30 day taper. The dose was started at 40 g. and he weighed 130 lb. It was tapered down by 10 mg. each week. I may get scolded for saying this, but I don't know how scientific the notion of using the the response to pred. to determine probable IVIg outcome is. I realize Dr. K. has clinical experience to make this statement. All I'm saying is I don't know if this is carved in stone or not. Sure, it makes sense, that if you reduce inflammation, etc., by stopping an autoimmune process using pred., then IVIg would work. However, the process by which IVIg treats the PANDAS symptoms ISN'T EVEN ENTIRELY UNDERSTOOD YET. So, to say that if a child fails on prednisone he/she will fail with IVIg ... I just don't know if this is sound or not.

The itching symptom is more common with viral infections. Also a fever of 100 is not really a "fever" . If it stays low, and the throat isn't raw, swollen, and PAINFUL, it is probably not Strep or Staphylococcus, but viral. If fever climbs and throat is swollen, I would, if I were you, take her in.

TWO NIGHTS IN A ROW!!! NOT A PEEP!!!! (However... he needed me to cover the pillow with a new pillowcase because without a pillowcase the pillow "has germs." Does the germ stuff go away?). Thanks everyone, for all your support and encouragement!!

This is a tough one. My son hates me because of my lack of tact in dealing with this. First, if he talks to a friend on the phone about him coming over to our house, I yell, "Ask him if he's been sick past few days or feels like he's sick now. If he's not sick or hasn't been, he can come over." Before we moved, we often had kids coming in and out like through a revolving door! When I would hear the doorbell or a knock, I met the kid at the door, talked to him while I observed for any signs, then invited him in after I asked, "Are you now, have you been, do you think you could be sick in the near future." I always had a big sense of humor about it, and after grilling the kid I let him in. My son would always say, "what is wrong with you!?" If the kid WAS sick now or recently, I just said, "Sorry, can't come in. Come back in a day or so." I was NOT well liked among his friends!

Hi, yes, it is extremely fascinating. We have lots of before and after writing samples. My son had very severe margin shift (starting in the middle of the page rather than at the left margin), and his writing was very large, leaned to left, leaned to write, cursive in the middle of print and vice versa, and was basically illegible. He also drew stick figures for people into the 5th grade! His writing is normal, same as peers pretty much no

Stephanie, How do you know the psychiatric symptoms are from the Clostridium? How do you differentiate b/w that and just the same old PANDAS symptoms? My son had/has echolalia and the rest of what you listed, but he was also coming out of a strep infection and pneumonia? Just curious how you know.

Excuse me, but that is so FREAKIN amazing!!!! Have you, yourself, learned to sleep normally yet? Wow.

Not getting too worked up, but for the first time in 7 years, my ds12 went to sleep on his own last night. He has always yelled for me to be in his room. He was terrified of being in his own room at night and could never fall asleep alone. Even now, living in a tiny house where the living room is just 15 feet from the bedroom! This behavior included him demanding that I tuck the covers for him and "fix" them if they weren't right. IVIg was four days ago! He did call me once, and I said my usual, "okay, in a while." But I didn't go in. Found him asleep (albeit with lights on) an hour later! Yay, him!

As far as I know, there isn't a "PANDAS" code yet. Treatments are billed under a variety of other diagnoses... i.e, PIDD and other immune deficiency, or autoimmune disorders.

Hi Nojo, Mycoplasma pneumoniae is the bacterium responsible for "walking pneumonia." I am not sure it is worth testing for if you are going to do antibiotics anyway, since Mycoplasma responds to the -mycin family of drugs, such as azithromycin. The issue with testing for this is: Unless there is active infection, or recent infection, a positive IgM is unlikely (and this is what clinicians want to see before they make anything of it) There is no agreement, generally, about how the IgG is to be interpreted In the general population, there is a high percentage of individuals show show elevated and very elevated titers If there is unremitting chest signs, suspicion of pneumonia, and elevated IgG to Mycoplasma, then I think that would be clear indication for treatment. I do believe that my son's very elevated IgG to Mycoplasma corresponded to his last acute and episode of overnight ocd and tics etc. Even my son's PANDAS docs don't know what it means to have elevated IgG. I will never know!

Indeed, uveitis is inflammation within the layers around the eye. Has nothing to do with cheeks. This is sometimes associated with Streptococcal infection in pediatric cases.

Amber, the bloated belly is a dead giveaway. I wonder about this in autism. Many of the autistic children I have known have a very distended belly. My son had this belly. It came on overnight.... and so did the ocd and stuff... I don't know what the connection, but I think it was due to the antibiotics my son was on to clear the infection in his sinuses and lungs. He was also given prednisone, which was a double whammy, knocking down his immune defenses.