Fixit

Oh, what a wonderful thing.. i really enjoyed the last bit.... So good!!!!

Thats basicly this question... on Doc ks site he talks about pex followed by ivig 28 days later.. Do we know of anyone who's done that treatment??? a panda friend who doesn't post???? and how did doc k come up with that??? did he do that with several kids...or is it just a theory????in some ways i get it...i think and 28 days...is that from the end of pex or from the begining???

i have the same question???? and thank you for the update...all the little details add up..thanks

Rachel..so sorry you are here...it is a hard road, but this is a great group of parents... JMHO Don't worry about ivig yet..keep it in mind..but give the abx a little time....you may have to switch abx etc..i am sure parent wiil come in with some other good thoughts.. my ds on set was 1 1/2 years ago and he is 10 1/2... when doc k mentioned ivig in jan 2010 i couldn't get it in my head.(i still haven't done a big gun, but may soon)... and as you understand more and try things, something might click, or work.. And even my loving(somewhat concerned(about ds)) husband can be....well, we'll let it go for now..

Thanks isabel...i am looking forward to the new ins for many reasons and one is, i think you mentioned before they are panda(and the pits) friendly!

thanks and awesome....one of the moms called their office and was curious about Dr R.... i need to wait until at least friday..to dose in morning, go there for lunch and continue over weekend...it' hard to dose all these meds during the school week...

Can i ask..have you had your tonsils an atnoids out?

so you think i should call her office tomorrow, even though we are lame duck till monday??? i guess if i ask her, (she asked why ds tonsils weren't out) that in the mnean time she can contact them to line upt the ectomy....should i ask about atnoids too???

Ok..Sorry all...i need SOME MORE support.. i emailed teacher earlier in th day to have a conference...she is very nice and the school is supportive. i didn't say anything just that i would like to talk. She said he is a smart boy..but she's noticing vocals and movements at school..have i notice anything the same at home....THe first 2 days his new teacher and last years couldn't beleive he had evan had a problem, consider last year the teacher thought he might end up having seizures???? came off the bus with vocals!!! :( DH starts with a new company next week, ins will be cigna.... Today, when he got home they were the worst since, I guess our now apparent backslide... today is 21 days post taper...... I guess it's time to call doc L back??? and arrange pheresis??? I'm so sad... i thought maybe we were going to be the lucky ones!!! i'm equally concerned not doing some bigger gun and not resetting his cells.. i feel like i cant make decisions anymore...should i wait till monday when dh is officially on with the new company..or let the administrator of the office know now.. or do you think he can still recover if i do the mortrin thing over the weekend... do you think a doc will prescibe another steriod... should i call doc l or b to tell the ent we saw just the week before our trip to take his tonsils out first...should that include atnoids??? Plus hubby, sees the worsening and keeps saying dont' worry about it...and we have been not in a great place lately.... Another thing..just want to get it out and hope for a response...i thought dh brother had rf,,he actually had scarletina??? is that close to the same thing..he had joint pain and couldn't use his legs when he was 6...does this correlate to autoimmunie or pitands

Thanks mommd...yes, if you could give me some contacts that would be great!!!! great info...thanks for sharing.... were the allergy shots after or before ivig....i'm leaning to try..even though you had this experience.. ds allergies are just so bad...and i do hear congestion now and spring will s(*&&^^!!! we have not had a spring in 7 years w/o an onset.... maybe if i try now..if i need the big guns(ivig,pex) they will clean up any mess.... Or did ivig help your ds allergies????????? that would be huge!!!!!!.. ps..last night we regained some of our loss...not sure how i felt about this morning..i can usually tell by how the moring starts?!?!?

just lost long stinken note i wrote long and short i agree,,,,i need meds...but mad because i shouldn't if docs listened years ago...i was a happy, fun person 1 1/2 years ago...really!!!(cranky when hungry) cant get around idea of maintanence...i want a magic eliquisoure!!!(sp)i just want to live a life w/o wander who washed there hands a bowling lane(no one) and who is sneezing, coughing w/o covering etc..every minute of being "ON"..no off option!!! abx..goint to find dye free, if not try new pharmacey...then switch to aug.. refound info not to take calcium with zith,,does that include milk..and that includ other abx's will try mortin this weekend..dans have such cool secret handshake tricks!!!(just regular body dose??) much love

fixit - i'm not sure if this will be helpful for you or not b/c i know you are stressed about what decisions to make with meds. . . i very much fluxuate in my ability to calmly, rationally attempt to see what my son is thinking b/c it is so frustrating to be a part of at times. much of my son's issues are around ODD behaviors. i think this is what is seen on the surface. i believe what is underneath is heart-breaking. he can be controlling of his brother. i believe someone (LLMD-?) posted recently that she learned at the OCD conference of a child who was controlling of his sibling b/c he had thoughts that if she did certain things she would die. recently, i believe my son had an intense herx-like reaction to an anti-viral which resulted in textbook, contamination food issues. i believe he was thinking he would get very ill and/or die if he ate something that had touched anything else - anything - like the inside of the food wrapper itself. i think this also transferred to anyone else eating something someone else had touched - even the outside of the container. so -- the behavior appeared to be a spoiled brat freaking out b/c someone was going to eat something that he rejected for no reason at all. however, i believe he was petrified something bad would happen to that person for eating that. luckily for us, that was a short-lived scenario. most of his OCD seems to be/have been in the 'just right' area. it has taken, and still takes, much for me to understand what this means. he does not seem to have complicated webs of thoughts like i just explained, that is generally thought of as OCD. it's just not the way it should be but it still can produce the same intense reaction as if someone were going to die. to others, it appears that he just wants his own way just because he does and is being a brat. perhaps the name tag thing is along these lines - ? for whatever reason, maybe one he does not even know, the name tag was troublesome. no warnings or rational thoughts can compete with the idea in his mind that it's just not right. therefore, he just can't comply with what the teacher wants. it's not that he doesn't want to comply, he really can't. at the OCD conference, someone spoke about this -- how can the child comply with your rules when they have so many of their own rules and regulations that govern them, and their's take precedence -- not so much by their choice, but by an irrational need. yes, the key is medical treatment to make it better. but, i've found that i need many coping mechanisms also. we use the repeating from the explosive child that seems to be helpful. sometimes, it forces my son to reevaluate and see that what he thought was so very important, really has no basis. we seem to have gotten to the point where he can tell me, "there's no reason", "there's a reason but i can't explain it", "there's a reason that no one can ever, ever know"(during the most traumatic time). so that seems to help me gauge where he's at and have some level of understanding for it. good luck! Thanks..i am going to print this and take it to the teacher.. i'm trying to make an apt...i spoke with the principal a couple of weeks before school started... Ds does love school....and knowing him and what happend it is just what you are saying what does odd stand for?

PS..just found an older thread Momocdson brought up..not take azith with calciuam..blocks absorbtion of abx...so that may mean milk too!!!! good for me to as this may be part of problem... question...does the calcium thing include other abx..ie biaxin, augmentin, amox...

just getting a handle on SOT and now this..

Congrats!!!! i can't wait till your 1 year mark!!!!

You are the mom and you know your kid. It may take longer than 4 days..some a week, some a month..i've heard rumors of 3 months..don't quote me. But you may need to try a differ abx, as it seems things are a always achanging.

my bad..as per this paragraph..it seems to not specify tics, just seems like its danced around a bit Thank you for your kind words..and thanks for all you do too. DS "seems" a little better today?!?! but as many know..i feel like i can't trust what i am seeing..are they actually better or just a little different...but i'll take today over yesterday!!!! i remembered probi last night...back to fish oil this morning and ds7 has his dose of abx last night and this morning... maybe he's actully a little congested, as when were traveling everyon sounded and got congested with the different pollens.. i do think i hear gung in there i'm looking at pex really as ds is 98% tics.. but today at school the oppositional thing kicked in...got in trouble with teacher for removing his name tag off his desk...i asked him why several times, he said he just didn't want it there..the teacher warned him 3 times....what the heck is that...i said do you think i get everything i want..do you think i want to do the dishes, blah , blah

i just got off the phone with cvs and they called the maker and were to told all pills have red dye, evne the generic and the zpacs and some have blue too.. maybe i need to call a different pharmacy??? any thoghts on that or other stuff

First, i want to ask...can you come to GA to help me??? you have such a handle on the next step. Second, to me, a reaction to lyme would still be panda...or the new title SOT...it doesn't matter the trigger...something happened and my kid is changed..could be celiacs(though another auto condition triggering it)..or myco p..or other parasites... But i do feel faiths frustration in that the reality is there are so many triggers and why does something work and not hold, and as i've said in the past too many triggers to count not just strep and just tics can still be SOT.

i apologize for the long post.. I my ds is holding at about 75- 80% better from taper; he is day 19 post taper. There were 2 days a week ago last sun and Mon.. there were virtually no tics..that I noticed or noted. We did start school last Monday ….95%????? Tuesday I notices some raspberries sounds creeping in, and the head twists I mentioned…I thought well, just a blip…maybe brain inflammation from heat…so the next couple of days I gave cold water coming home from school, cold showers, an ibuprofen. And things seemed to settle by dinner time… By Friday things seemed a bit worse in general…by Saturday I started losing it…not that we are back at his worst but the vocals seem back , again not as bad as they were or as constant but freakin there..The motors are at bay with the occasional head twist and a shoulder twist when he pushes out air….then I noticed him blowing on his hands or elbows….if did this in past it was once a day..Now its a few times.. This Saturday night if forgot to give him his probiotics..and Sunday morning I thought Id try krill oil instead of fish oil….Yesterday..(Sunday) even my dh asked what was going on with ds..things were so good…I dont know if I cant fix him if I can make it!!!! This morning..though it was only a little time…seems less…but he is usually pretty good the first hour in the morning… Can I expect 100%??? Can I expect 100% on a taper…..how long will it take..Im scared. Because I can still vision him not ticking…he may not remember as its been 1 ½ years and he is 10 ½?? I felt like we plateaued the last couple of days of taper…then day 3 post we added azith..250mg daily and 2 days later we had a little more improvement… Then on the 7th day of azith we added back ldn and 2 days later was when we had the SUPER 2 days… I dont know if we are slipping?? Also to note, I took my 7yr old to doc yesterday for an ear infection..?..would that be considered exposure?...we got it really early doc said..and he had his first dose last night…s Should I double ds abx for a couple of days?? I was lucky in the past with getting 100% remission with just abx…(and no one would give profolatic)..am I asking too much at his age,10, onset 1 1/2years,,,the number of overall years starting at 2 ½-3? With that, I want to add, when he was young if his abx was red, ds was like a maniac, a couple days in, even though he initially got better with tics..then tics may have gotten a little more as he raced around the house like a ping pong ball….this azith pill is red…..could that be it and can I get it w/o color? Is it possible to get a 5 day taper and maybe nip this in the bud??? Is that advisable? I guess the thing that is adding to my anxiety, Is that with my great visit with doc L. Other parents have reached out to me mentioning that they did not have the same!?!?!?! Some were patients prior and some new….how could this be???? I Feel Terrible…it makes me scared…why was I so lucky??? What if she changes her mind??? What if one of my other kids goes through this and she says yes its pandas but no to pheresis?? With the parents permission, they dont post, I can say that, yes diagnosed pandas…child 14 with facial, grimaces, scrunches, jaw movement etc….she was told she will be fine and that she doesnt do pheresis for tics..that she will be fine…take clonidine.. Well its been on chlon and nothing…and how could she be fine…if you get a mastectomy. Insurance covers for implants as it affects a womans self-esteem, confidence..blah bhal..(and that is under a shirt!) How could this not affect her teen social life…it is going to affect how she feels about herself everyday more than a haircut, and it will effect who hires her!!!!!! I literally just got off another phone call with a mom who posts rarely and gave me the ok… Her boy had phersis.stopped ticking for 2 months till he got myco p…then did ivig …did well for a couple months..just had 2 ivig 5 weeks ago…a had 2 weeks of no tics and 2 days ago vocals came back… i could hear them on the phone and i just started crying. I WAS FLOATING ON CLOUDS A WEEK AGO. And now I am more scared than I have ever been!!!! Why is the new study not including kids with tics!!!????!!!!!! Why is it just new onset cases??? We are suffering here!! Maybe I should have just said lets go in doc Ls office when I was there!!!!! Fortunately /or unfort….dh took a new job while I was on the road trip, so the new insurance wont start till his start date next Monday. Good news is that its cigna and they cover pheresis for pandas!!!! If doc l will still do it!!!! I will have this knot in my stomach until he comes through the door at 3;40 to determine if today is better, worse or a hold. I AM TIRED OF THIS S.O.T. AND DONT WANT MY SON OR ANYONES CHILD BEING LEFT BEHIND AND NOT HEALED!!!!! PLEASE reply with any thoughts on abx upage, doc l. ivig…hope, tics, steriods Ps..should I try allergy shots before I maybe get approval for pheresis as per doc b? Should I have tonsils out before hand also?? Today is day 19 post taper. Again, we are not as bad as bad….but we might be slipping!!!vocals!!!!!!!! THANKS ALL!!! I don't mean to be so sad/MAD..i just fluctuate with my boy and have been dealing with this for 7 years.