Fixit

We have had a few of these conditions...out of no where ds would say his chest would hurt...just sitting the car....and it wuld continue off and on for 24 hours...making sure it wasn't indigestion...we took to docs and said he was ok...this happen several times over his younger years...i cant' relate it to indigestion at all...by 2nd 3 rd i was very concerned...doc said sometimes that's just growing pains for kids????????? But i really wanted to say good job at putting your finger on the MMMAAANNNNYYYY presenations/caueses of pandas/pitands... that i why we must fight...because this is probably the least clear cut of any condition i can imagine..i'm not a doc....but the varieties are like a paint wheel..each just a little off from the next Keep up the good work!!!

AS one human to another, as one mom to another.... I love you!!

Purely based on just the being sick thing....i know that ivig can make you naustiated...with that, i find, persoanlly..i cannot tolerate bright light...i like it dark ANother thing is...i find tv and such makes me more nausious...so maybe limit the tv, video time... then at night ...when it's not bright and not hot...(because heat makes you more naustious)maybe go outside to get some fresh air... The throat thing i would keep an eye on...did yo peak at it....maybe he's mounting a response ????

this is interesting..my sons condition stems from my husbands side...dh still gets strep and has some mild tics..and still has above normal antidnase?????. my dh brother has very bad psorsis and i believe he is on remicade .....i will ask but i am sure you are aware of the side effects.... how did you come to think about using remicade?? this link http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000267 is very indepth... cautions pretty much everything....vitamins, vaccinnes dental surgery...... i keep hinting at him getting checked for strep and other alternative..

the sound you make when you try to get that clear shell from popcorn, that cups the wrong way, out of the back of your throat..

Please do come back with info he may give you on this.... i believe it has been a real problem for us since february...when the vocals started... 2 times when the screeches came they stopped on vanco and diflucan day 12....both times...the first time i got rid of them completely..this time i think i have lingering stuff... we still have some rasberries.. and popcorn and sneeze sounds....but not as bad or as frequent....

I agree...SF mom!!!

can you come to my house and help me understand....or at least tutor me or my kids... are you taking college prep courses.... i'm starting to agree with Phasmid....you are not 15!!! or 15 going on 35 stop talking more better than me!!!

Thanks...how long was your taper.... what was the time difference..from taper to actual pex.... fianlly...not trying to be annoying,,,really....i think it just comes naturalll how long did you keep ds out of school... i thought we would have done at least ivig by end of june...and had 6 weeks to recover... i could go now an pay out of pocket...but i might as well wait 4 more weeks and see doc L..see if it's covered with her and get pex>>>>

Hardie har har...... ...i don't want to wait for iherblll ds started taper yesterday...

Can you just get this at a local pharmacy... i was going to go to the vitamin/herb/natural store ...but i couldn't swing it todya. also..i only want to give about 5 mg.... and taper down from there with dosag.....

i thought this was very informative http://www.womentowomen.com/adrenalfatigue/dhea.aspx

Also, it's a bit odd that Texas has a fairly high incidence of P.A.N.D.A.S., comparatively speaking (although I really think it's just because we are so big), yet it's incredibly diffifult to find a doctor in the DFW area who isn't totally RXhappy. -_________- Probably more people are aware of pand/pits and are not just accepting other diagnosis!!! PS....just ran into my first mom..who brought up PANDAS to me...and her children do not have pandas...but she totally gets it and thinks its all pit/pand....i started to cry

I didn't want to be the first to reply... But Amen sister Eamom!!!!

THank you so much for replying so quickly and the info.. how long after pex did you keep her at home...out of school??? even if this time we didn't get a great response...as i have heard people say that each kid they have, responded different and sometimes even if they did the same thing again, ie..steriods.abx it may not have worked the same or at all, like it worked the first time not the second...didn't work the 1st 2 times but worked the third time// also doc k has said even if there is no response to burst, doesn't mean it won't work....it just may not be as likely to work... that only leads me to why i think alot of studies that they say that failed with ivig as a respones(or pex) didn't work..is because they may need 2...they may need a combo pex then ivig...were all other infectins cleared..are there food allergies I know i'm just preaching to the quire on the last bit... since i was denied ivig...maybe it was blessing and is pushing me harder to get pex and then ivig if i need it...because...if we got ivig i am almost certain i would need 2.....

I scheduled to see doc L in august.....I REALLY want pex, as son is mainly a ticcer. did you have to do a 30 day taper before she perscribed pex??? i started taper yesterday as per scott's knowledge of her protocal..and he does think it's great i see her... but at end of taper is our visit...will ds present with enough to warrent pex...scott said he would talke with her on phone any time.. he said she will get get it and has seen enough kids to see where he is even with steriod... i also want to give him a break as his tics and be single but also chain together and they are still about every 10-15 seconds..so imagine after an hour..after a full day... on the burst it took 21 days..but there were about 5 days of soft spread out tics...i had to actually watch/watch to see them... currently you can hear him..and you can hear his motors as he snaps his arm/wrist so hard it actually snapps...if it gose to his feet..there can be stomps or what ever... as he is getting older..i can tell he is becoming more self conscsiousn...and i see him try to hold his head or other parts of his body to have it stop.... but i don't want to go in august ..then have to do a taper then and then get pex...that would put us at least into Oct/nov....i want to get what ever i need out of the way.. this onset will be 1 year 4months in august and he will be 10 1/2 by then.. i am tired of making the life deciding decesions...if you screw up...months of recovery..months of going back to see if it changes..months of waiting for appointments...months of healing at marginal increments as you may remember i was denied approval for ivig..so might as well go for the big guns. any input welcome....

this is very informative... the biofilm...would that be like a mucus....or is that something wrapped around each invidual cell?? do you use digestive enzymes....i have, once in a while...try to sprinlke on food.....no where near high dose... how long would you have to use such a product The 2 mg on ivig is intersesting...as i heard of someone who did 2 and is not having any success...like you said..it may have just skipped over like a skipping stone..to hard and fast...as opposed to sinking in.......

My ds..like myself has hypo thyroid....oddly we are both very thin... and ds has lost like 5 lbs the last month....summer/hot/mostly just wants to drink i've lost more than 10lbs over the past year do to this nonsense....i must have lost it from my earlobes as i can't imagine where it came from... i asked doc about why i wasn't heavier..don't exactly remember but he said something about matoblism adjusting. don't ask, not sure Anyway ...i just don't want him to know have to weight issues after all this..being a little too lean is healthier than being a little too big OOOHHHHH it just dawned on me!!!!!! see link below...a bacteria is related to people being unable to loose weight....so if the abx/steroid is killing off stuff and letting this bacteria over grow.... maybe this could be it.. http://www.time.com/time/health/article/0,...1969807,00.html

to bring everyone back technical talk is this just a table you woud break in half.. what increments does it come in..... what time of day do you give it... same time as steriod, would it counsel it out?

OK ..this is not good!... my boy is tall and thin in good proportion... dealing with lesser issues with my other 2 boys... i don't need other S(*(*)) to deal with.... is there anyway to control this....probiotcis...fiber.??????

Well...as long as you are seeing continued improvement...she is willing..., wants to help(heart in it)(which helps us parents more than the kids)...insurance is doing what ever she says....I think it's a no brainer to stay with her..... I do think second third fourth opinions are always good and would keep the appoint with docb...he might have a different light/angle your doc might even consider... I wish i had kept my appoint with doc L last nov....now i 'm trying to get in for August And her protocal might be one that will go in the books with Dock and doc L...if it's working, there maybe be different variations...just like all of our kids are different variations

My husband (who does have a slight tic) gets strep every year, if not a couple times a year.. i wish we were in a postiion like a couple of years ago where an additional 400 to test dh was not a difficult decesion... but i feel like my husband has a full life,,,,careear, wife, kids... right now i will need 400 for an office visit for doc b or what ever!!!

No, the skin infection came after I had the psoriasis on my elbow for many years. The psoriasis actually disappeared after the infection. Maybe? What I thought was interesting was the fact that this is the first evidence (?) I have seen where these problematic antibodies were recognizing yeast. The same epitope that has been shown to be problematic in PANDAS (GlcNAc). That the antibodies that attack strep also react/attack to yeast ...correct?? Am i getting that right? So do you think this similar reaction to yeast(as though it were strep) is only present in psorisis patients and/or/but it could imply once your anitbodies react in such a fashion it doesn't matter if its psorisis or pandas/pits... I am not trying to be confusing....

The guy at the walk in Med stop doesn't roll his eyes!!! he not a pediatrician.... other than docs k,t, i am seeing smith in fl trying to line up docs b and l.... I really need to get this kid Pex/phersis Can you pm me her information... Thank you

. This is my understanding as well. I think the B cells in the immune system have some memory and they are what make antibodies. It only takes a couple of B cells to cross the BBB and get to the basal ganglia -they see the surface of the basal ganglia cells and think it is strep (because it looks like strep), so they produce the strep antibodies that they remember. Unfortunately, these antibodies bind to the neurons and mess up the neurotransmitters that are produced (Cam kinase II & Dopamine). .... at least I think that is how it goes... SEE...this is why i obsesse?/ about reading here as much as i can.....i get these ah ha moments... THANK YOu For posting this!!!!!