How long after IVIG would titers

[CandKRich]

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Edited August 12, 2013 by CandKRich

[P_Mom]

Karen......like I mentioned, I have a 10 year old PANDAS son (started at age 7).....strictly Tics. (some ADHD behavior when in his presenting episode...none at all since)...what would you like to know???????

[Fixit]

I am pretty sure doc k says as long as you are continuing to see an upward trend(bettering) do nothing....let the healing continue...

if you see a downward trend for more than 2 weeks.....consider(keep a ready) to do another ivig

i haven't spoken to him directly in months....

so if i can get a confirmation on this it would be great for me to hear too

[Fixit]

Okay....I am responding to the "boys with tics" question.

 

I have two boys with tics, PANDAS, and immune deficiency (low IGG and almost low IGA)....questionable response to S. Pneumonia titers.

 

Both boys responded to antibiotics. My older son had a dramatic, one day response to Amoxicillian with a 99% cessation in tics....he is a tic presentation PANDAS kid. We have never had to do anything else with him regarding treatments....he is on PEN VK proph. (a little Aug. in the mix..nothing high dose)for 3 years and doing great. (CamK 112)

 

Younger son also had a resolution (95%) of PANDAS symptoms (tics, OCD, anxiety, hallucinations) with antibiotics (although not nearly as fast as older son.) We have done 2 steroid bursts with him....second burst yielding remarkable results with just about 100% resolution, temporarily, in symptoms that were due to a Pertussis infection. No other treatments......also on PEN VK for 3 years (same thing with a bit of Aug) and also doing great. (camK 162...after a steroid burst and years of antibiotics.....doing well at time of draw???!!)

 

 

So, I don't know. I haven't seen in my boys what others are seemingly seeing.....they are PANDAS, one presented only tics, the other 50% tics, they are immune deficient (not alarmingly)....yet they responded to antibiotics (and a steroid burst) quite well requiring no additional treatments (hopefully it will stay this way).

 

I am glad your boys are doing so welll.....jealous and happy

my boy ALWAYS COMPLETELY responded prior to this onset at age of 9 more than a year ago...

i unforturnately...i did worry about the future...but i always got complete remission and had no doctor who would listen to me...and no one would ever consider giving abx long terrm.....

 

after convinceing the visit doc in fl..to give him something...(cephelixin) for ten days.(only because i told him of prior history....and we just saw him the day before, ds presenting with swollen glands,,,quick strep neg..waiting on culture.....whent that came back neg..

i started my brain balance,,,,tmj journey...even asking these people if they've heard of pandas....looking for anyone....

not until a year later did doc t at least start him with biaxin in March..OF 2010!!!!

t

I WISH I COULD HAVE HAD HIM ON LONG TERM ABX...that's what has had me so upset the last couple of days....i just keep wondering what if...would be going through this now.......i wish i could turn back time....life was sooooooo great then!!!!!

3 weeks after onset DH got laid off

 

Stay on top of it pmom....i think puberty adds that extra demonsion