Fixit

So sorry! Has nothing worked for your first? I apologize again for being able to keep track of people's stories. For us, at least we know where to go for help. She may or may not respond to treatment as her brother, but at least now we understand better the whole OCD thing, we know there are some things that help, it is not hopeless. We'll just have to be a lot more cautious about the cost of different diagnostic/treatment options, as we may in this for the long haul. But I know they'll get better, eventually. I guess what I mean is that nothing was different in the treatment of my son based on the results of the cunningham test. He scored 141 and all the other things on the test were elevated... but it didn't help me treatment wise. I guess it confirmed for me what I already know.. that something was going on. I have seen one of the big pandas doctors. I am one of the more cautious people in terms of treatment and because my son is mild I am not comfortable taking any drastic measures just yet. I know that could change in the blink of an eye.. So while I am curious what my other 2 kids numbers would be.. it will likely just make me crazy to know because I wouldn't jump on treatments based on that. I do feel better prepared to recognize signs in my others but at the same time sometimes I need to step back and remember that just because my 3 year old is throwing a fit and stubborn and repeating his request over and over.. so do many 3 year olds.. just based on the fact that they are 3. I watch my 6 year old because she has had chronic tummyaches and a few big meltdowns (but then I stop and say so do all kids at one point or another) and because she had constant documented strep throat I did get her tonsils/adenoids out. I guess I might not have rushed to do that if I didn't have pandas on the brain although in her case the recommendation came from the ped just based on the number of positive cultures she had. I didn't mean to sound so negative.. I guess I still don't really understand the cunningham test results. i don't think you sound negative.. it's like you said..it just confirms your fears, thought,,,but now what do you do other than treat with abx and wait, wait, wait, wait, treat, wait, treat more, wait

i know we discussed this before but i can't remember so i'd like to bump up husband had redraw of aso a couple of weeks after abx..it was still high... what is the difference again between aso and antidnase....? i asked a ped the other day abou high dnase..he mentioned lupus in lue of other things is aso a current infection?..it can be old too right... why would they treat that but not a high myco p igg? dh went to ent today...tonsils pitted/chronic strep cultures..they are coming out...just need to schedule...

So sorry! Has nothing worked for your first? I apologize again for being able to keep track of people's stories. For us, at least we know where to go for help. She may or may not respond to treatment as her brother, but at least now we understand better the whole OCD thing, we know there are some things that help, it is not hopeless. We'll just have to be a lot more cautious about the cost of different diagnostic/treatment options, as we may in this for the long haul. But I know they'll get better, eventually. mati...i like your optimism..!!!!!! please continue to put it out there aj..i fell ya...watching #3 doing some eye thing...took to dr..had ear infection.... i'm toast...ds1 would remit completely and once i new what i was looking for jumped on it,ignoring drs, as ds would tic as only sign he had strep...and look where we are today????

i don't have an answer...but right now i believe that is our problem too.. and i think any abx over time can give you clostridia...and that is another bacteria for ds that triggers pandas...besides yeast and fungus.... IT'S GREAT FUN

Doctors!!!! i'm not so mad that he doesn't buy the cam result ..it is new and we are still trying to decifer it BUT, has he heard the term encephalitis..has he heard of syphalis(sp)and the encephalitis that can occur from that.....is it really impossible another infection can cause encephalitis.....AAAARRRRRRGGGGGGHHHHHHHHHH!!!!!!!! i like AIRP!!!!!! the little i can offer to your question is..that it is hard to know where the line is..i think, as discussed, that some of the anger is from frustration of not know what is wrong with their body..... sometimes i wonder if i let ds get away with a little more...but he is actually in trouble more than the othe guys..so i wonder if i am trying so hard to make him "normal" i'm not thinking it through.... PS get a new doctor!!!

have you had all your subclasses checked to see if there is a deficiancy... have you checked out lymes... there is a post on doc t's about tso..a helmeted parasite that gives off something that is somehow immune modulating... i also read on this for a guy whose allergys were so bad he was almost home bound..and now he does this and has a life... there could also be parasites in his system that he shouldn't have and needs to get rid of have you looked into celiacs and at the thyroid

i wanted to add..that a couple months ago, i started to have trembleing in my pinky and ring fingers...just a couple of times..i can't remember about me too much...i think it was at hight of ds symptoms before taper....

I WILL SO PRAY FOR YOU!!!!!

That is great you didn't have to travel... please keep us posted on your dd progress!!

i wonder if as you get older you would have a lower camk even with equal conditions. that's why i like that doc k. just goes by history...he doesn't care about the cunningham score... ds first draw was 105...he was better than onset but not healed..and normal was 87..if it's not normal then something isn't right..(canceld apt with doc L as i thought i would be dismissed...when i saw her recently she said still thought his numbers were interesting..esp.dopamine1) second draw..i was praying for at least 120 so people would't think i was full of it(isn't that sad)as i was already expecting it since EVERY doc i've seen prior has rolled their eyes when i'v mention my conection with ds getting sick and ticcing... anyway ...score was 160

Wow..thanks for sharing everyon... i hadn't heard anyone else talk about such things with the legs... (early childhood tics were simple that would remit with abx) When this episode started 4/6/09..ds was that very jump where he had to kick his behind..not just a hop...it wasn't till a week later, when he took a shower in our room and he turned and his entire back side was black and blue..we had to carry him some during that episode...his legs where so tired.if he couldn't jump, he would buckle.. it was that single tic....then as mentioned others started to roll in.. i'm just freaked as i feel like this is going to take forever to get rid of again...and i think the chaining is starting a little...like a hop screech.. arm flapping came later, then became like one arm bandits and did them very hard and continued to the point he had bruises again on his shoulders..and would do several others together, as you said, i couldn't put them together with the intensity,,,and i have tried.

now the hops are gettting more intense...like step hop isn't enough... it's like they have to be forceful the house is shaking today.... and the hopping isn't constant...if he is standing for a while he might hop, maybe not. 50/50....if he start walking its step stomp step hop..if he gets going he might have to jump like he did before to kick his own back side.... the motion of using the muscle triggers the tic... like when we were at 85-90%..his motors were gone unless a specific muscle movement triggered them...ie hair in the eyes..tried to flip his hair with his head, then turned into twisting his head 3 times.. yes the screeches are still here..they came back the same day has the hop.. i guess the question is ..does anyone else have anything going on in the legs

Emerson...i'm sorry i don't remember... are your tics gone... is it basically ocd and sleep issues right now??

this is just a questoin... if she is 75% better than before treatment..but the ivigs arent' working... but it's only been 3 weeks from the first 1... not sure i understand that part

while we're at it..can we discuss garlic

should i ask that they not use nitrixodie.... i'm already scared as they wanted a letter of clearance.... another mom just told me of 2 times they were at different surgerys and were sent home as they wanted letter of clearance... i sent that in from pediatrician... waiting on another.... can i just tell them the morning of the surgery... i don't wnat to call today..it gives them too much time to think.....

when ds was on it..he was also on a bunch of other aminos and vitamins... ds is mainly a ticcer...his tics were better by end of program which included exercises...but he did seem more busy?!?!?!

Wow...facinating.... Maybe doc K is seeing other strong correlations... just about to start a new topic just on this....

maybe if its just this week...you can ask for another or skip this weeks lesson until you had time to digest how you want to procede.... it seems like this connection just came to you and you might want to think it over.... you will be hard pressed to not have any exposure.... you go to the grocery store...and touch things... it is hard... i feel like you ..in that i may do the same thing and be homebound if i do a big gun...i mean after all this time.research, crying, worrying.distress, money..it almost seems a small price at this point... i would like to hear others thoughts on this too, especially those who have done pex

ok..i'm getting nervous... so far, we are still a go for ta on friday.... when ds had surgery to remove a tooth a that was in his palette(sp)..i had to have the nurse hold my baby, while i phyisically restrained a 7 1/2 year old.... of course dh is never around for the fun..... and at that time ds was not in an episode.... maybe i should have dh do this one...

Tantrums...you may have cleared any infection your child has... it may have become autoimmune where it's like a car on top of a hill...just waiting for a fly to land on the hood and downhill it goes with no brakes... Allergies are starting havoc for my ds... my child used to completely remit with abx alone in 4 weeks...used too!!! and other parents will say abx worked..try next time..and no longer works ...need to change the burst made ds worse at first then we had very nice days, then gone and i was so concerned ..ready to go ivig, got refused... decided if i had go out of pocket..while ds was still young i would go see doc L and get pex... her protocal is a steroid taper... well we didn't get worse this time as now i know to watch yeast with it...and we got to a full 90% better...unfortunately we've lost that ...we are not as bad as our worst...but you know... EVERY CHILD IS DIFFERENT!!!!!!!!! Even among panda/pitand syblings(sp)

Lisa..i don't know what tests you ran..but let doc B tell you if they are normal... the other thing is you may have cleared every infection and its autoimmune where the body takes over and you need to put some brakes on a run away car... i don't know your whole story...i am not deciding what is bad or not bad...as a mom, its all bad..but he sound like he is o.k. right now..so be try to be ok right now too... also there about a thousand other things you may need to persue.. ie lymes, celiacs, chrones, food allergies, vitamin defeciency, thyroid, gut issues..i'm sure there are more... some parents are really versed in areas that seem to effect or trigger their kid...you will get there but it may take a while

Wow..i want you on my team... that took about 4 months..right? i hope your ds was at least able to hold the gains he made with ivig...

Thank you Emerson..i think about that alot for my ds

steph...i was just read somewhere the quercitin comes from GSE...is that true... then that may be the cause of it and though using quercitin to treat candida is good..maybe that is creating die off i was really using quercintin for allergies...though... http://www.healthexcel.com/docs/_cand1.html I CANT STAND IT...I AM SO POed.. i cant catch a break...what if this is it the big spiral was 7th day of Q and the first day of qse.... DS has horrible allergies..trying to avoid shots still.. i feel like the Q may have been an actual help to his allergies.... all i want to do is curse right now.... and i the dan office also said nac can increase candida and didn't want us on that.... SHOULD HE JUST LIVE ON WATER!!!!!!!