Fixit

just got a call back from the scheduler...and it just says tonsils??? is there any point...shouldn't the atnoids come out too...since they are in there..... cant say he has sinus problems..but does snore any thoughts...has anyone left the atnoid in but just had tonsils removed?

he is adult panda...he does tic...he has a head nod...occassional nose scrunch...he's been on azith for 3 months ..he is a bit better he is getting nervous...and so am i .....he dose snore he does get strep 3 times a year....though last real episose was last spring doc can see that his tonsils are pitted and enflammed...(from 3 streps a year for the last XX years i've know him...and as long as he can remember) i think we are both afraid....as currently ds10 vocal is a sucking in snot sound...this kinda came in when ds had his tonsils removed, in september....the screech really subsided...(i think the clyndamycin really got something that was in his gut)...and he had soooooo much mucus and snot coming out the next 2 weeks it became a tic.... though...at this time....though we have had a roller coaster...even lately...it's about his only tic...(though again every ten seconds) he has to have a job that requires talking..and being infront of people.... i've really tried to get his yeast down too any thoughts or words of wisdom...... thanks...and any thoughts and words of wisdom are appreciated

he is adult panda...he does tic...he has a head nod...occassional nose scrunch...he's been on azith for 3 months ..he is a bit better he is getting nervous...and so am i .....he dose snore he does get strep 3 times a year....though last real episose was last spring doc can see that his tonsils are pitted and enflammed...(from 3 streps a year for the last XX years i've know him...and as long as he can remember) i think we are both afraid....as currently ds10 vocal is a sucking in snot sound...this kinda came in when ds had his tonsils removed, in september....the screech really subsided...(i think the clyndamycin really got something that was in his gut)...and he had soooooo much mucus and snot coming out the next 2 weeks it became a tic.... though...at this time....though we have had a roller coaster...even lately...it's about his only tic...(though again every ten seconds) he has to have a job that requires talking..and being infront of people.... i've really tried to get his yeast down too any thoughts or words of wisdom...... i will probably post on the ts board.....(though i think it is there is no seperation...to see if there is any experiences there) thanks...and any thoughts and words of wisdom are appreciated

I am glad things are going better...and it must feel nice to have a plan..and relinquish some of the "what next" to a doctor... Amy and Nancy...i caught your recent updates and i appreciate that you added some of the details on the journey...thanks Not that i'll remember in an hour from now

it usually has to do with weight...ie ..my child is roughly 80lbs...so they started with 40 then 30 etc

ps...i'm mom of ticcers...they are known to be very difficult and usually last to go.. spctmom...thanks for posting your reply and the update....very informative

i am interested in others reply as well..we have not done ivig....but what i've read and seem to gather..not sure if this answers you exactly 1...now that the infection has passed...he may continue to get better on abx and ivig may still have some influence..it just may take a while. 2...some people are doing another ivig if they cant get back to baseline...and there are several theories and protocals..... and one is that some kids need monthly for 1 1/2 years....amd then wait and see some 4 in a row, 2 months apart some may need it every 6 months till adult hood....(this sounds more likely to me from parents telling of healing and relapseing)...maybe they need 3 in a row and then every six months some only need one and are done..... this is still a work in progress....and i hope all the docs continue their different protocals as i don't think it will ever be one size fits all and not sure if you mentioned this....could be lymes...or other of a multitude of viruses,bacteria, paratsies we dont' know about....also ruling out other autoummnne conditions that can create panda systems..chrones, celiacs etc...food sensitivies...blah, blha , blah

smith is in dr neubranders office and they give ivig..and they do offer an array of tests and treatments

i have personally not had this experience....but will do my best... (not much of a christmas mood here...with new reality of 3 panda boys)anyway... 1 it could be herxing... 2 the dose could be wrong.... 3 have you tried going back to the abx's that worked...some children do better on on different abx...so you may have to return to prior type 4 i would not jump the gun yet...but i think at certain ages and after numberous infections(jmho and experience) that it becomes autoimmune...so regardless of abx, dose, type...something more may be needed....ie ivig, pex, steroid 5 now that you have done several abx for extened period of time...if you wanted to try...i would feel safe in trying a steriod taper..(i don't like bursts)(i'm not a doc...just my experience..i think always a taper, even if it's a week long taper)...just keep an eye on yeast as steroids can reeealllly kick it up big time and that can be a whole other problem hope this info holds you till someone else can offer something

That is good news...thanks for sharing this Christmas that there is one less crazy panda parent and one more panda freindly doc!!!! Merry Christmas to all Forum Members!!!!

Thinking and praying for you and your family.

i think it was the rotation of the 3 abx...or that the other 2 weren't long enough...she was still getting a little better on her own ...and the then you hit it with another abx and wha-la

i read your post earlier...but i was in a bad place to reply....i am vvveerrryy happy for you, truly! can i just ask you to confirm...as i can't remember or detect from other posts 1)are you saying your children were in episode over the last 4 years..waxing and waning, never getting 100%..and have recently gone into remission..100%.. 2)or are you saying their pandas kicked up starting 4 years ago..put them on abx...remit100%....get sick, up abx , remit100% my ds used to the second senario.... but now we are in a year plus episode(waxing and waning)...and would be great to hear that you are talking about the first story...where, eventually after years of something going on ..it just stops!!! thanks for coming back and reaffirm your statement.....I REALLY NEED THIS TODAY

Thanks to all for the positive prayers and thoughts.... ds8 is already doing better...first dose last night and one this morning...i hope he will be even be more resiliant than his older brother and not have to repeat this.... i too am making calls today to take all 3 to doc b and probably one of the dans we use .....it will have to be a flight...as my energy is gone and 3boys....i am in the same boat...and when you said Yes it is..i am having a hard time with it...though i know it...if i don't say it out loud, they will not have this!!! i will definitely keep you in my prayers...i try to do special individual prayers when people ask...but i also do a general.."for all panda kids and parents prayer"... ps i am open to positive energy..good thoughts...spinning in a circle three times...or what ever else you can send my way....thanks all!!!!!

i know..i hate that part....i hope he follows his brothers prior responses.... talked to nurse...doc did not want to change abx...just got back from dropping it off..... i need to get this doc to talk to doc l or b ...this doc is open minded but also veeerrryyyy cautious...but i am lucky to have him at this piont...compared to the other eye rolling docs i've had to deal with thanks for the quick replies....i;m very upset...but tryng to be strong we have so much more info and AMO compared to the prior years of struggling...I PRAY I DO BETTER!!!!

Do you think amox is good enough....in past ds1 has responded well to it and would go into remission...maybe if it is mild amox will be enough and we are catching it early?!?!?! thanks for responding.... i feel like getting in my car with all 3 boys and waiting outside of doc l or b or swedo's or who ever will treat a 3 pack ps thanks for the reply

3-4 weeks ago ds8 not the the one i write about...had strep 3-4 weeks ago...ds flared...started back azith and have actually raised it...he is doing well....we are doing other thing in combo.... however...ds8 got sick last friday moring threw up just a little..ever since he has been congested...a bit run down... tuesday night he just wanted to go to bed evn though friends around....last night i think i notice a tic!!!!!!!! its the pursing lips...kissy face thing.....well it is here today stronger... i just got back from docs...he is pandas friendly but not advanced...qucik swab neg...glads swollen.everything else slightly congested....he did give me abx for amox...asked me not to fill it...said it could be congestion...but i am sitting here watching him....even if its not strep..now..it could be from the other infection and now if he has a virus it just pushed him over ...right!!!!! i should go get it filled right!!!!!....i just called to see if he would switch it to aug or azith..... but get it filled regardless right....it might help right!!!!! this was the one that i thought was ok......please keep me in your thoughts please!!!

Thanks so much for taking the time to give a long reply....i think the key and aha moments are in the details!!! just a thought....have you thought about going back to zith full dose...its been awhile..his body got alittle rest..and maybe before ivig..it might be worth a shot.....maybe you'll know in a month if its having any further benefit?...maybe the omnicef cleared out some other things and zith can go back and attack the rest...you'll probabley have a little time before ivig gets approved......just thinking of it like a chess game i will definietly be taking you up on the chat

i haven't read other replies..... but i say yess....wish i had done it when ds was 5ish...... to support that.... dh who has some tics and still gets strep 2-3-4 times a year is getting his out on the 28th....his titers are always high..i always think he tics less on abx...and has recently been on them for a while...i just asked visting freind..and asked her thoughts on dh...and she is like oh..yaeh...alot less... dh older brother had scarlet fever, scarletina(couldn't walk etc)...had his tonsils out young...don't know age ..will investigate ...he also said he had a very mild, short lived inciden't of ocd...... he seems to be the healthiest overall as an adult among the 3 brothers... dh other brother had impetigo to many times to count(can't remember him w/o it almost)...still has his tonsils...has terrible psorisis and is on ramicade for it.....and has arthisits....i keep telling him to check his titers and consider tA for his skin condition and possible arthirits....he is not even 40 but of course as much as they think i may be onto something...i am equally sure they think i am wasting my time

Airial...can i ask you to expand on this... the immdidiate improvement..??? would you say over the course of a week -2 weeks... and then the long slow impove.....over months??? how many... why did you switch if it was working, though slowly???? so he is still improving on omi??? if not...are you going back to zith?? sorry to pick it appaart....i feel like i am reading more and more where it takes many months to recover with abx...and maybe we haven't done any of them long enough(but also, ds gets yeast and other side effects, so we spin the wheel on what we treat sometimes)...also..i will repeat, i was spoiled by prior episodes...where a 10 day course of abx did the job.... can you imagine

is there such a test for band 39?

You made the best decision you could at the time.. and if you think he looks ok now....think how great he will look with the next card.. plus when people see him in person, the will automatcilly go....you look great!!!...and its always nice to hear a compliment it will be something you can evidence your journey...and not look in sorrow, but in how far you come...and i think when your ds is a man, with children of his own, he can see how far he came, and give his children the strength they will need in just your regular, everyday stresses.. hope it all came out positive, the way i intended and the way it is(positive)

the article below is not the one i was looking for...but it states why the tapers are better than bursts.... and why, with my own ds results with the taper...why not give the steroid a chance to hold on and maintain gains... i wish doc k would only prescribe a taper after a month of abx...imo bursts are waste...eespcially if you are going to reak havoc on the body...you might as well give the product an opportunity to have a lasting effect(yes i know a few(few) have had succses with a burst) http://www.arthritis-treatment-and-relief.com/prednisone-tapering-side-effects.html Taking steroids on an alternate day (every other day) schedule lessens the chance of adrenal insufficiency but does not eliminate it. Tapering should be gradual to avoid major flares of disease. If a patient flares, then the benefits obtained from steroid therapy will have been wasted. What happens then is that the dose has to be increased again and then tapered again- making the length of steroid therapy required much longer.

the thing i want to reitterate...though i am not sure if i am right or even understand fully... but i am getting my head around, and watching what is going on with my own ds...is... intracellular...be it strep, myco p, what ever....i think there are many virus, bacteria we don'[t know about either... and if it goes intracellular you have a longer haul...i believe...and that may be what i am experiencing here.... i don't negate lymes or anything anyone tells me...its all possible to me, this is a huge learning curve... and imho...immunology will be the only doctors needed in 100yrs..other than surgeons, for accidents we have in our individual flying machines and sports injuries....

you are not immagining things..... another thought is he needs to stay on biaxin longer... maybe he still has myco p or what ever biaxin may be helping... i believe that my ds still has myco p...igg has never gone to normal and fluctuates a couple of wise people have posted several items, where like lymes...may need treatment treatment for 6 months to 2 yrs for full recovery....and sometimes rotate abx like lymes.. maybe he has multiple things going on???