i know we discuss this alot...yeast..

[Fixit]

Ok ...ds is home from school.....

his vocal of late has been a spit take sound(rasberries)

 

well he just let out some screeches....i can't take it...

i think that is from double azith yesterday and today.....

 

any thoughts anyone....

 

i gave 3 table spoons of bentonite when he came home from school..before i heard the screech.

 

did someone say that the ivig cleared up the gut issues too...

 

again..his motors are super mild...if at all..the shirt chew.i think is to hide the vocal...

 

ok..just let out a grunt that sounded like he got punched in the gut.....

Edited August 30, 2010 by Fixit

[Fixit]

Ok ...ds is home from school.....

his vocal of late has been a spit take sound(rasberries)

 

well he just let out some screeches....i can't take it...

i think that is from double azith yesterday and today.....

 

any thoughts anyone....

 

i gave 3 table spoons of bentonite when he came home from school..before i heard the screech.

 

did someone say that the ivig cleared up the gut issues too...

 

again..his motors are super mild...if at all..the shirt chew.i think is to hide the vocal...

 

ok..just let out a grunt that sounded like he got punched in the gut.....

 

 

i think i just deleted everything i wrote prior to this.when i posted above....

 

omg...this is killing me.....

 

are vocals the hardest of the tics to get rid of.....

 

i don't know if i can do ivig.....i don't think i am in a place where i can handle turning back of pages or upping of symptoms.....

 

i'm watching him.....the shirt chew it to not vocal...

 

when ds was on hd aug...he had to be on diflucan too..because it just wipes out everything in his system..and gives him joint pain other wise

[RNmom]

It can be so confusing to sort out what is causing a surge of symptoms. One thing did "leap out" from the sequence you shared. Two changes were made at the same time: the antibiotic was stopped x 3 days AND a new probiotic was introduced. Unfortunately, you will have to guess at which one is triggering the resurgence of symptoms. Based on our own experience with severe PANDAS and everything I have read here (love this forum)I would put my money on the 3 day antibiotic "break" as the culprit. The half life of the antibiotic drops off a little more slowly with azithromycin so, by the time your 3 day break was over, the blood level was probably just getting low enough for the PANDAS symptoms to break through. The fact that this coincided with the introduction of the new probiotic just confounded the picture. You can retry it later on when your ds is stableized again on a proper antibiotic level.

 

We tend to use a higher dose of antibiotic regardless whether we are using Augmentin XR, or azithromycin, or cefuroxime (a great strep buster). Our ds14 is 165 lbs and 5'8" however...

 

Also, I just got my ds14 back from our immunologist where labs were ordered for mycoplasma, ASO, anti-DNAse-B, Haemophilus Influenza Type B IGG, Streptococcus Pneumoniae IGG AB serotypes, EBV, and Lyme. We check these periodically as they can enter into the PANDAS picture and cause symptoms flares even while on antibiotics. (We also did a lot of Immunoglobulin levels in case we decide to follow up his recent PEX with IVIG - but that is another issue).

 

I hope this helps! At the very least you know that you are not alone in the struggle to keep things sorted out. Do try and make changes one at a time whenever possible :-) and please let us know how this evolves.

[Fixit]

what i wrote before..ruffly....

 

took ds off 25o mg azith for 3 days to give tummy abreak after 26 days...we were seeing slow healing..i think

 

on last night of break i gave him 10 bil of Lactobacillus plantarum 299v.... the next morning a bit more rasberries...that same morning i reintroduced 500 mg of aztih...my plan was for 3 days...(i noticed the rasberries were up before abx given)...that was sunday morning...

 

today monday...i did not give the lacto..plant(which i heard was good for candida)..as i wasn't sure if that was the cause...or if it were herxing...which again i am not ready for.....was thinking of every 3rd day...

 

in short..dh and ds do show strings with spit test..dh is disgusting...ds isnt that bad but there....

 

i think the the screeches i just heard are from the double zith(yesterday and today)....my plan wsa to go 3 days...but may drop back down tomorrow

[RNmom]

O.K. I re-read the sequence of events. I can see that you are concerned about yeast. It has caused joint pains and maybe some other symptoms (?) in the past. But, I also see that you were feeling your ds needed to be on a higher antibiotic dose. Unfortunately, you will need to address one issue at a time. Give your ds the time necessary to get his antibiotic blood level back up to a therapeutic range (that may require getting that higher dose you were going to ask for). You can also ask to get your ds back on diflucan while you battle this symptom flare in order to deal with the yeast. Have you had his stool checked for yeast recently?

 

Hang in there - I know the anxiety and frustration that goes along with managing a PANDAS flare up. BTW, IVIG is a good thing to consider for immune regulation and turning over the autoimmune process - and I have read that it addresses the gut issue in some diagnoses. Others on this forum will have a lot more to say about that than I. We just had PEX but I am very open to following up with IVIG. There is a lot you can do! :-)

[Fixit]

did i mention that all those gross motors are gone...watch me eat my words...they have been for a while..it's the shirt chew or pull..i really see it work to hide/surpress the vocal...and if he does head twist..it needs to be set off by hair in his eyes...nothing for hours though...its the dang, nab, gone, rotten, annoying, stinken,slow death of me, vocals!!!!!

 

here's the other part..besides not being able to handle much emotionally right now...

from what i've heard for some..

is that after ivig they have things they didn't have before..tics, vocals, ocd..

i don't know if i could live with my self if i cleared his tics to get ocd...

in a way he is comfortable witht the tics as he knows what they are...this onset was 9 and is 10 1/2..and probably can't remember much time w/o them...also as, he's had tics with strep off and on for 7 years...

he is FUNNY, smart, great insight, amazing self confidence....though he is very happy the motors are gone..

what if he starts raging, or has fears...after ivig's...

 

i've also communicated with some from the ts board that they know people who had ts and it went away only to be replaced with ocd.......for some ts just went away(interesting huh )

 

having some difficutly recontacting doc L...will try again tomorrow..plus 2 other phone consults in the wings...

and i dont know if i 'm even ready to do pex..should that still be possible....i'm scared...that's a big procedure too....i just want to give him a magic pill...or make steroids not so horrible...or maybe if pex is so great..like someone said..do it and then leave the port in and have a drive through system....

[Fixit]

O.K. I re-read the sequence of events. I can see that you are concerned about yeast. It has caused joint pains and maybe some other symptoms (?) in the past. But, I also see that you were feeling your ds needed to be on a higher antibiotic dose. Unfortunately, you will need to address one issue at a time. Give your ds the time necessary to get his antibiotic blood level back up to a therapeutic range (that may require getting that higher dose you were going to ask for). You can also ask to get your ds back on diflucan while you battle this symptom flare in order to deal with the yeast. Have you had his stool checked for yeast recently?

 

Hang in there - I know the anxiety and frustration that goes along with managing a PANDAS flare up. BTW, IVIG is a good thing to consider for immune regulation and turning over the autoimmune process - and I have read that it addresses the gut issue in some diagnoses. Others on this forum will have a lot more to say about that than I. We just had PEX but I am very open to following up with IVIG. There is a lot you can do! :-)

 

thanks for the last part..i hope so...

i kinda feel like i am in circle with the vocal thing..i think when i started the biaxin and the steroid at the same time w/o haveing been on abx in more than a year...(and i know from years ago i did the spit test with ds..as i had heard that candida can cause tics.) i didnt know that steroids also increases yeast over growth...

i also think the gut is probably one of the hardest things to right once messed up...

i am not a patient person to begin with!!!

 

oh...plus checked the allergy site...ragweed creeping up...i really have to decide about allergy shot...

i think mucus is giving him a slight air push/throat clear tic

 

ARRRGGGHHHHHHH!!!!!!!!!!!!!

 

so you think once the zith get's back to what ever level..it will be ok

no stool in a while...i guess we are going back that way again...vanco has cleared the screech 3 timess....

would like to just give him a break....try to catch this early

 

i would like any other thoughts too

[RNmom]

Gosh, you posts have really gotten my attention today! :-) It really does seem that your ds responds well to antibiotics (and steroids - even if it is "rough" while taking them). It sounds like you will stay on top of the yeast problem with probiotics, stool checks, and other meds if necessary. I don't know all the details of your ds case - but the questions about the recovery phase for both IVIG and PEX are very good ones. Currently, we are in a recovery phase post PEX. It has been rough - over one month out and our ds is only now saying that he "might be feeling a little better." Our situation is very different from yours however. Our ds had no life before PEX - so there was nothing to lose ... and so much to fight to regain. I wish you the best in your decision making process!!

[Fixit]

Gosh, you posts have really gotten my attention today! :-) It really does seem that your ds responds well to antibiotics (and steroids - even if it is "rough" while taking them). It sounds like you will stay on top of the yeast problem with probiotics, stool checks, and other meds if necessary. I don't know all the details of your ds case - but the questions about the recovery phase for both IVIG and PEX are very good ones. Currently, we are in a recovery phase post PEX. It has been rough - over one month out and our ds is only now saying that he "might be feeling a little better." Our situation is very different from yours however. Our ds had no life before PEX - so there was nothing to lose ... and so much to fight to regain. I wish you the best in your decision making process!!

 

when i arranged apt with doc l it was very bad..teache even notified me she was afraid he was going to have a seizure...he responded miraclouisly to the taper...we did do diflucan with it...(did burst in spring..no hold)

i was ready to go at the drop of a hat...

then it got so good..i almost want to say we had 2 days with nothing going on..then it started to come back..he had started school...by the second week the teachers were calling me concerned.....then we got better again, the 3rd week...not to our best point the week or 2 prior but better than second week

 

this is begining of 4th week..i started azith back yesterday to have it in his system 24hrs prior

i just wish i have the lab orders here..by the time i call tomorrow..and then i get it and then i send it in it will be 2 weeks.....

 

OH..i am meeting with a Pandas friendly pediatricn tomorrow.....he's aided a new friend of my for years with her kids...so maybe i can convince him to order some tests???