Fixit

Well currently siblings are not a problem here...thanks God...and i hope that contiues... But i believe my husband has pandas..and both doc b and L were somewhat interested in the fact that DH still gets has tics and gets strep 1-3 times a year at his age.... THey aslo took notes on DH family list of autoimmune conditiona, lupus, psorisi, arthristis, tics, step and impetgo.. And unfortunately..if i werent persistant..ds would left at TS....especially since dh tics... But both are pandas and like michaeal tampa dh and other diagnosed with ts are actually pandas...

a little off topic...i see talk of agonist ant antagonist.... dob b said dopamine 1 was agonist and dopamine 2 antagonist... can anyone explain the difference??

My concern was the opposite..everyone here was so concerned with ocd. i didn't want ds (only tics, handwriting)to be left out because of only one real issue. PS..and i don't know if the was mentioned or discussed... doc b said dopamein 1 was agonist dopamine 2 was antagonist.. i dont know what that means or its correlation....for DS only his camk was raised on both and dopamine1..his other levels were exactly the same on both draws... Doc L said the correlation she has is that the dopamines relate to tics and the other to ocd.....but i think we knew that

i havent heard that it surpresses the immune system.... i saw something on a study out of norway???if children get more fish oil (and maybe it was in realation to the epa/dha) they have less or no allergies as adults....something about traing the brain???? i dont' know how good or reliable this blog is but it talks about fish oil for lung improvement, fighting bacteria in the mouth.... again i don't know just the messengar http://www.fishoilblog.com/ ju

Here is what doc b says, if i got this right, and i tried to ask him several ways....allergies do not create pandas,, he believes allergies create a breading ground in the sinus to bacteria, virus to go and get stuck as sinus does not drain.... i partially buy it, as my ds did not go into pandas day one of allergy season, but about a month in.(end of march typically)..with the current onset 4/6/09..about month before, ds pulled a bald spot about the size of a quarter, by the time onset came..treated scalp with presrip hair wash...(i also think this onset was myco p...as a year later his igg was extremely high and my 3 year old just got tested and his igg was still high to 1 1/2 years later)...this year Feb 2010..1st day of soccer prac...ds goes for a hair...i stopped him dead in his tracks and sent him to the shower!!..did not pull a bald spot this year...but plays with his hair and eyelashes...?????? also, semi related...my sister never had known allergies..we move to burbs, she starts passing out..they do ekg's mri's you name it...it took 2 years to figure it was allergies..once she started shots it stopped....she didn;t have watery eyes, no stuffy nose, nothing...BASICLY it was just causing inflammation...a main problem for our kids......so i don't know

Very interesting...especially the last sentence!! so you are saying that it may be monthly for 7-8 years, even possibly lifelong? what state do you live in..where is this doc?

Kayanne..what abx are you using? and dosage...what is your childs weight? thanks

Can you clarify...are you saying you did a 2 week taper....how did the dosage work each day? you've also done a week taper???? again how did the dosage work each day?? Thanks

so you are saying that it may be monthly for 7-8 years, even possibly lifelong? what state do you live in..where is this doc?

i am interested in this response too!!

Have you or anyone else looked into krill oil..maybe mega red... i've heard even though the numbers arent as high it doesn't matter as it is better absorbed by the body than fish oil... any thoughts....

THanks for coming back to post...i am sorry for your other problems... are you saying doc k never treated a girl..only boys before you...did i get that right...or are you saying your were doc b's first girl patient...not that any of this matters anyway...just nosy!! I am glad for your success and continued healing!!!

Do you not live in the US?..can you travel to one of the main docs to get help? THis is just me...but i would make an appt with any doc who believes..and get approval for higher dose... Dont' worry about school rigt now...this is just one year...you are fighting for his life time...if you need to take him out and home..i would do that and get his GED.. Also i think some docs will prescibe an ivig and you can do it local...there are centers you can check out and i don't think any of the good docs would let your child suffer if you couldn't afford to do it at their office...

I dont' think you are over reacting..seizures would scare me too and i would be doing the same.. Go to a doc and sometimes when they see the parent in distress they are more compassionate...as over the phone they don't see you i am sorry you and your child are going through this!!!!!! all here have had all the emotions one can experience...tremedous greif, walking on eggshells, feelings off being a bad parent, (Personally on occastoin, stupid) for not doing more, knowing more, understanding more...guilty for wanting to run away..but if you do, who will do all you do for your child.... THis is a great place....you will find great support and info.... Have you found a DAN doc...sometimes they have great little secrets/tricks up their sleeve... Scott smith...they guy we use, has measured my ds urinary neoptriens...and once they reach a certain level, he has seen a correlation with seizrues...also these neopterins relate to other auto conditoins like ms, aid, autism.. there is a drug made for seizures that thay use to treat pain for TMJ...Tegretal....maybe you could switch to that one

when i saw doc b about a week ago...he said he would try to get us approved for 4 treatmenst..if the first wassn't doing what we needed..to not delay and do the second 8 weeks later.... will your dd have to have monthly treatment for the rest of her life...or is this something that is hopefully only for year or 2 and then taper down or eliminate them????

PS..doc L said that she finds tics the hardest to get rid of...and if i am correct..not trying to put words in her mouth..vocals may be even harder?!?! and/or reaffirmed difficulty in getting tics to remit...

Not that is matters...but when i saw doc L last week...she thought name and paper wouild me more towards end of year...she could be playing the shell game???

Thanks... isn't your child that had complete recovery on a taper????? how long did it take after the taper to say you are in complete remsission??

Thank you so much Melanie..he does deserve to be well and so do all kids..i don'w know what God thinks sometimes....everyone should be perfectly healthy till they are at least 25-28....a chance to be young!!! ds just came in from doing yard work and did a raspberry sound...should i freak...should still be expecting blips....it is 90 degrees in the shade.....Brain inflamation??????? I HOPE AND PRAY IT IS FINALLY OVER TOO!!!!!!!

its a 2 mg capsule that scott got compounded for us and is shippred right to the house...i wish it were a tablet....not that i'm near ready...but scott said it's one drug that you will taper down to nothing...so maybe 6 months a year...not sure, then we would to 1.5 mg... we went off could turkey...no effect..as per starting the steriod(they don;t mix)...just that in tapering down..the effect to the system is just more delicate.... steph2 uses it on her 5 year old but he only had 1 ivig the mood improvement is unbelieable...at least at first...ds is always positive..but we have moments of walking on rainbows and bubble gum

Thanks...i hope you are right...still a couple of air pushes(out of his lungs)..right now as he got off the bus...and asking how he can earn a dollar. am i asking too much for all of it to be gone 2 weeks after a steriod taper???? HOw is your guuy doing now that the taper is done??????

NO WAY!!!!!...yes that was him on the floor...bored to tears...but being so good with his silly putty..and thank you...i think he is really cute too!!!! and has a nice smile!!!! that was me checking up on him..(i didn't take him in as there was so much and i think it gets to him).as doc L took anohter long phone call...not mad...so glad she didn't just up and quit.....but i think at least one call was about some of the sad stuff she's had to deal with.. then that was my 75 year old aunt who came in with my 3 and 7 year old....as they were waiting in the car...i figured 1 , hour and 1/2 movie should cover the time i needed, but stuff happens i agree with your statement

I'vs also seen stuff with ldn and crohn's!!!!

Thank you Eamom!!!!!! and as per something you said...i think kids should be on abx for awhile before doing a burst or a taper.. and thanks for your supportive words as always... ldn is low dose naltrexone...originally designed for drug rehab/withdraw....there has been great results with it for MS!!! another auto immune disease.....stops it in its tracks... i'm not too familiar with her prior thoughst on abx..did she only like aug....did she prescribe till children reached adulsthood prior..... i thought she and doc k only liked azith and were neg on augmentin xr till worrieddad asked about it for his dd..(per saving sammy)

I hope this doesn't undo where we are now..please cross your fingers as you read this!!!! Well Ds is doing great…we ended a taper about 2 weeks ago and I would say he a solid 85% better, maybe more..95% …trying not to jump the gun. I finally felt confident 2 weeks in, it was working…but we had the screech try to come back and a little accidents but was waking up and catching himself and changing underwear …so we added again the vanco and diflucan….accidents stopped immediately!!! We did see some saw tooth even with the taper. He also has another loose tooth 2 days before end of taper. On the last day..of taper it seemed like the motors were gone…still some vocals…not screech but raspberries…if motor ….sooooo subtle Saw doc b day after taper ended..We were there for 2 hours and he only did one raspberry the whole time….. Again…doc b is lovely…is ready for ivig when I am…wants ds on abx daily(scott only pulsed with 1 time a week at 500mg zith) doc b order 250 daily… Doc b also wants to do allergy shots…still have questions and concerns…..as ds is not 100%...i am worried that allergies will just push on the gas peddle as we are still in coast mode(not in a good way…just the engine is running and we are sitting in neutral..with a slow roll….not engaged in drive..nor are the brakes firmly in place) Doc b said dopamine1 is agonist and dopamine 2 is antagonist….can someone explain that??? The next day ds had some huffing…pushing air out…some head twist…(tried to console self as reading too much into it…I did see sawtooth to get to the point we were at) So then we started the daily zith 2 days after seeing doc b..2-3 days later Monday 8/2…even better…motors really so minor and vocals almost gone!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We see doc L on Tuesday 8/3..couple raspberries in morning…go to her office …I am almost concerned she won’t see anything…as it is so minimal now…and it is easy for ds to hold in.. Apt was at 2…she didn’t see us till 2;30..then she had a couple of calls that were 20 min each…then ds came in office at 3;30-4….she was great with him…as she stared at him..he did a couple jaw stretched he tried to mask into a yawn…and then when he walked down the hall he tilted he head 2 times…that was it….(so add in stress of waitng, tired, hungry, nerves.)he did great. I told her I didn’t’ come last November when I did oringal camk test as ithought she wouldn’t believe me..she said at 105 he still had a dopamine 1….thats for the ticcers…the first 2 numbers she correlates with ocd…dopamines with tics(ds first 2 numbers on both draws were not elevated)..i expressed my concern about not leaving anyone out because the camk number is not “high enough”..i stated if it’s not normal…it’s not normal….she smiled. We sat and were not sure what to do at this point…he was/is so good…..she said I could still see further recovery form the steroid up to a year out?!?!?!?....healing takes time!!!!! She was adamant that 500mg zith once a week was not enough and would need to be on 250 mg daily till he is in his 20’s!!!!!!!!!!!!!!!!!!!! She is also ready to do pex/phereis and I she even offered ivig if I wanted….if he relapse, we go!! Am I being stupid for not doing something right now….waiting for a relapse????? We discussed how the main docs on this just have different protocols…and she and I agree that there should not be a one size fits all protocol…some kids just need abx..some need pex..some ivig..some phesersis and steroids …and some, any combonation there of…. So that should make everyone feel good….at least doc L feels like we do!!!! 8/4/10 day after seeing doc L..best day ever since our onset 4/6/09…no vocals..loses that second that evening…1st molar Next day another day of sawtooth…maybe it’s the lost tooth Friday 8/6/10 call steph2 to update and ask about our office hours….she suggests that in the mean time I add back LDN as I took him off because of the taper…he was doing great…and I did see another improvement a couple of days after adding the zith and then I felt like we plateaued again… So I did…next day was good..but we in car on final drive home to ga from va….tired blah blah….. Sunday 8/8/10…no tics!!!!!! Monday 8/9/10 first day of school …no tics!!!!! Tuesday…some he twists at night..could be that moppy hair cut that all the boys have…and that Justin beaver twists his head…. Wed…..a couple twists….and one nod…triggering a tic???..scott smith says tics can become habits like the ocd can…some aurghs..playing x-box(some break throughs)…stops when he stops x-box(I only let them play 1 hour on wed, 1 hour sat and 1 on sun) Things look good this moring, i didn't see anything…….no one would probably pick up on anything unless they are familiar with tics…so that is good…(maybe not even you guys).BUT I want it GONE!!!!! Please pray,hope,good energy….that this sticks and I see the last little bit go away and continued healing…. Current protocol Am Azith 250 mg Levoxly 25 mg 50 mg spironolactone Buffered c 1000mg 1000 mg fish oil –equal epa/dha PM 2 mg LDN Probiotics….better absorbed at night when most digeestin happens 1000 mg borage .5-1 mg melatonin depending..or none