Hello all!

[Phasmid]

Hi everyone! Have read some very encouraging updates but breeze through and don't have time to post as I have switched my obsession to something else Actually trying to focus on just being happy with how my little boy is doing. Thought I would give a quick update on us too.

 

Just visited pediatrician to check on status of pre cert for two to three IVIG treatments locally with him, rather than travelling. So, this was second request (not appeal) for IVIG and this was denied, of course. First, low dose, covered in January. Docs want to do high dose to try to stop the trichotillomania. So, on to appeal. Doc says he'll help me every step of the way, and we'll go to insurance commissioner if we must.

 

So, here's my question. My son is doing well. He's over the remaining ocd that was present. He HAD stopped pulling eyebrows, and they were growing in. He was on the azithromycin still. All was going well. Then I decided to stop the azithromycin. I think I slowly stopped it over about two weeks. It has been maybe one month now, that he has been off azithromycin? He also was found to be lactose intolerant, the probable cause of his g.i./encopresis issue that has plagued him. As long as he doesn't have any lactose, he's okay. Well, the past two weeks, he has pulled patches out of his eyebrows again. That may have corresponded with a new sinus infection that I didn't really treat, until two days ago when I started the azithromycin after a visit to walk-in doc who said it looked like strep in his throat/tonsils even though rapid swab was negative. Yes, his behavior kinda took a dip too. So, he's on azithromycin indefinitely again, per pediatrician today. Oh, and grades dropped across the board slightly since off antibiotic. Not bad, but from A's and B's, to B's and C's.

 

What do you think; if all else is okay, mostly, is it worth hassling with insurance company through the appeal(s) to get high dose IVIG? Should I settle for half eyebrows? That's more than he's had in a long time! I just need a kick in the seat, as I am tired and lazy now and don't want to struggle with the insurance appeal.

 

KICK ME!

 

[Fixit]

Hi everyone! Have read some very encouraging updates but breeze through and don't have time to post as I have switched my obsession to something else Actually trying to focus on just being happy with how my little boy is doing. Thought I would give a quick update on us too.

 

Just visited pediatrician to check on status of pre cert for two to three IVIG treatments locally with him, rather than travelling. So, this was second request (not appeal) for IVIG and this was denied, of course. First, low dose, covered in January. Docs want to do high dose to try to stop the trichotillomania. So, on to appeal. Doc says he'll help me every step of the way, and we'll go to insurance commissioner if we must.

 

So, here's my question. My son is doing well. He's over the remaining ocd that was present. He HAD stopped pulling eyebrows, and they were growing in. He was on the azithromycin still. All was going well. Then I decided to stop the azithromycin. I think I slowly stopped it over about two weeks. It has been maybe one month now, that he has been off azithromycin? He also was found to be lactose intolerant, the probable cause of his g.i./encopresis issue that has plagued him. As long as he doesn't have any lactose, he's okay. Well, the past two weeks, he has pulled patches out of his eyebrows again. That may have corresponded with a new sinus infection that I didn't really treat, until two days ago when I started the azithromycin after a visit to walk-in doc who said it looked like strep in his throat/tonsils even though rapid swab was negative. Yes, his behavior kinda took a dip too. So, he's on azithromycin indefinitely again, per pediatrician today. Oh, and grades dropped across the board slightly since off antibiotic. Not bad, but from A's and B's, to B's and C's.

 

What do you think; if all else is okay, mostly, is it worth hassling with insurance company through the appeal(s) to get high dose IVIG? Should I settle for half eyebrows? That's more than he's had in a long time! I just need a kick in the seat, as I am tired and lazy now and don't want to struggle with the insurance appeal.

 

KICK ME!

 

 

Hey Phas..i was wondering how it was going..i am glad it is having some sticking power!!

Kick me first...that's exactly how i feel...

i have no advice..i think i would be happy with 1/2 eyebrows...but probably not....

i want it all...and when it comes to the face..that is the hard call, imo..

if he had vericose veins....you can just put pants on....

on the other hand, he has come far..and maaaayybbeee if you just stay on zith long term you might get the rest of the way..what is the dose and his weight?.

but you have so many actual drs willing to help you...and you might just want to run with that and take help while its being offered, and he's young

i would like someone local to work with as i have 3 pandas(though new ped is accepting).... i will not go into a visit i had at emory about a week ago&^$^&(*^%$^&*!!!!!!!!!!!!!!!(ok i have too...i told them when i made appointment, if they are going to roll their eyes at me, please don't waste my time...they call me back,.oh no,,come on in...get there.."we don't treat pandas here, it's controversial!!!!!!!, you would need to go into a study, there is one at...yes, i know all about that study(5 hours gone.pulled ds out of school again..gas, tolls,$7 in copied labs)

anyway

i can't seem to pull the trigger on the big guns....and i so respect the decisions and confidence of those who do..

i am so spent and felt today i might pull that trigger...and here i am up at whatever time it is..thinking of what haven't i done yet before i do the biggies......

it's going to be 2 years very soon for us...and that time is gone/consumed...and will not go into recent examples...but my children miss me..and i too want to be done

[peglem]

What do you think; if all else is okay, mostly, is it worth hassling with insurance company through the appeal(s) to get high dose IVIG? Should I settle for half eyebrows? That's more than he's had in a long time! I just need a kick in the seat, as I am tired and lazy now and don't want to struggle with the insurance appeal.

 

How does he feel about 1/2 eyebrows? And do you think you'll be able to maintain his current level of functioning with non IVIG treatments alone? I can see how you're conflicted on this...it would be nice to have the IVIG option waiting on the side lines. Our reality is that we can never trust that the "doing okay" times will last, and just when we start to get used to the "better", we get an unhappy reminder that our child is still ill.

If you're feeling like you need a push to get this done, then you probably need to do it.

[SarahJane]

I don't wanna complicate your decision any more than it is, but my son(7) started trichotillomania AFTER IVIg with K. I already posted in a diff thread, but hair pulling was not an original PANDAS symptom for us. We saw it in the post-IVIg system-gone-wild-freak-out-phase (that's the technical term, right?), but he really got into it 3 months out. It was actually right after I sent a good update report to K. We found high myco p IgG levels a few weeks ago, which may be related (and we're treating with Biaxin now...original advice was to wait 2 months, but I sent another email ). So...YOUR SON stopped pulling for a while with LD, so that seems to be more of an indicator than my son's unique presentation. Just letting you know. (((((HUGS))))) and Good Luck!

[kimballot]

If it is a sinus infection, and you are reasonably certain your son does not have lyme, you might want to consider asking the doctor about steroids if it does not improve with ABX alone in a couple of weeks. Sinuses do not have much of a blood supply, so it takes a while for antibiotics to work on them. A short course of steroids could halt the sinus inflammation (making it easier to drain and get rid of the infection) AND in theory it could temporarily halt the autoimmune response in the brain. If the infection is clear after the steroids end, you may get some long-term relief as the autoantibodies may not regenerate.