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Have either abx or IVIG brought your child to 100%


100% from treatment?  

29 members have voted

  1. 1. Has either treatment brought your child to 100%?

    • Antibiotics
    • IVIG
      0
    • Neither has
  2. 2. Has your child reached 100% for several months and later relapsed again?



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Summary

 

Exacerbation #1 Sept 2008 Antibiotics within 2 weeks of onset

 

Approaching remission when exacerbation #2 hit.

 

Exacerbation #2 Nov 2008 Antibiotics within 12 hours of onset

 

Reached 100% remission

 

Exacerbation #3 March 2009 Antibiotics within 12 hours of onset

 

Reached 100% remission.

 

Negative strep test in between each exacerbation. All family members got tested for strep each time.

 

One may look at this and say "Well, he still got better on abs only" (note...steroid burst in #2) but the exacerbations varied in severity (#2 was devastating) and residual OCD and longer recovery occurred in #3.

 

We've been to heck and back and I'm not ever letting my son return there without a hard fight.

Edited by Vickie
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well i didn't vote yet..maybe you are looking for something in particular..so i don't want to skew....

ds always USED to get 100% remission...all 15 times..roughly 3 times a year...(never in the summer)

 

this onset was age 9..he is now 10,(11 early 2011) the sweet spot...i think for the chronic condition...we have not recoverd and it's been more than 1 1/2yrs...

 

we are trying one or 2 more things...

trying to be double sure it is not lymes before we go big gun...

 

so not sure if i should put abx got us to 100% or that nothing is getting us there now..

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Fixit, it's moms like you whose children stayed well for awhile then relapsed or used to get better with abs and no longer do that are a harsh reminder to me that I cannot get relaxed and I can never forget. It's because of you, that I know I must always fight for my son even if he is currently well.

 

 

well i didn't vote yet..maybe you are looking for something in particular..so i don't want to skew....

ds always USED to get 100% remission...all 15 times..roughly 3 times a year...(never in the summer)

 

this onset was age 9..he is now 10,(11 early 2011) the sweet spot...i think for the chronic condition...we have not recoverd and it's been more than 1 1/2yrs...

 

we are trying one or 2 more things...

trying to be double sure it is not lymes before we go big gun...

 

so not sure if i should put abx got us to 100% or that nothing is getting us there now..

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I did not vote because our son fits into another category. We had success with steroids. He had been on seizure meds, mood meds, and antibiotics for months with no relief. Dr. L prescribed a 28 day predisone taper and we have seen great improvement. We finally have our son back. We are just waiting to hear about preventing relapses in the future. Good luck to you.

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By the way, I do not think there is any such thing as 100% recovery. We still see some residual behavioral things happening. I think that some behaviors become ingrained (ocd and defiance) and it is takes time to undo the damage that has been done. Vicki, I could not agree with you more. After surviving this nightmare, we will be extremely vigilent from now on and will always keep PANDAS on the top of the list of concerns. For all of you that are new to this disorder, I highly suggest making an appointment with a PANDAS doc instead of wasting time on a doc who is unfamiliar it. We traveled 8 hours to see Dr. L and it was worth it. Our darling son was lost for months and now he is back. I thank God and Dr. L everyday for his return.

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We don't really know what 100% looks like! I put neither, and no. But, I have to say my daughter has had 2 3 month periods (following rifampin/augmentin) where she was the absolute best we've seen her in years...but did not see the same improvement with the last flare. Better, but not as good as the 2 previous recoveries.

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Lori Ann, 100% recovered is possible, however it can take quite awhile. Like I stated in my summary, we did have to overcome residual OCD in exacerbation #3. And even when you think you've reached an acceptable amount of recovery, out of no where you're child will do something (in a positive way) you'd never think you'd see again. Then time and again, you will see quirks or such, but one has to also remember that no child is "quirk free" ...PANDAS or not. It's a matter of learning what your child's own personality is like all over again.

Edited by Vickie
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Lori Ann, 100% recovered is possible, however it can take quite awhile. Like I stated in my summary, we did have to overcome residual OCD in exacerbation #3. And even when you think you've reached an acceptable amount of recovery, out of no where you're child will do something (in a positive way) you'd never think you'd see again. Then time and again, you will see quirks or such, but one has to also remember that no child is "quirk free" ...PANDAS or not. It's a matter of learning what your child's own personality is like all over again.

 

 

correct..100% is possible...

glad i can be of some use..(to make those aware/vigilant)..

wish i wasn't here at all.....even though i keep good company here :wub:

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Both of my boys are "recovered" from pandas (meaning they require many meds/supps to stay there - I wouldn't say they are cured).

 

DS6:

IVIG 1 gr/kg, one infusion

Spironolactone ( http://www.icdrc.org/documents/Bradstreet%20Spironolactone%20Author%20Copy.pdf )

LDN ( http://www.lowdosenaltrexone.org/_conf2006/J_McCandless2.pdf )

Augmentin/Azith (discontinued and switched to OLE)

OLE (Olive Leaf Extract)

current regimine: Spiro, LDN, OLE and several other supps to support immunity

 

DS2:

same as above, only difference being that instead of the IVIG infusion we did a 20 day steroid taper and followed up with all the rest.

 

They have been recovered for 6 months now, only flared when they both contracted strep in Sept, which quickly came under control with a course of Augmentin and then OLE. We even flew thru a bout with influenza A without setbacks. I believe it is the spiro and LDN that allowed that (both immunomodulatory and antiinflammatory).

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Just a thought--"cure" is a tricky word with a chronic/recurrent illness like PANDAS. If we are to take cues from other similar illnesses (similar in the idea that they too have exacerbations, such as Chron's Disease) it might be best to keep in mind that management of exacerbations is, unfortunately, the much more common alternative than a full blown cure.

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I don't think I can fill out this poll properly since my kids have had both monthly IVIG and antibiotics and I have 2 with slightly different results (so far). Both started IVIG in April. Ds4, who was 3 when he started IVIG, has been 100% recovered of PANDAS, as far as I can tell...for now. He has had blips of poor energy when he's gotten an infection (guess that's normal) but I don't recall having seen any OCD or tics since the first month after he started IVIG. Ds7 has also done very well - 100% almost all days, though he is more prone to "blips" when he gets infections, so I wouldn't call that 100% recovered/cured, or whatever. Also,right now he going through another round of losing baby teeth, and is having a bit of a hard time. This happened when he first lost baby teeth before he started treatment, and it was MUCH worse then. This little episode he's having now amounts to a couple of tics per day and a couple of ugly 15 second outbursts per day, no OCD. Not bad, especially considering that he also just finished a week of hard, late-night Nutcracker performances on top of school, but not 100% either. I just can't wait for this pair of teeth to fall out completly and heal up....my expectations have gone up, I guess, and at this point I get exasperated seeing any PANDAS at all.

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Just a thought--"cure" is a tricky word with a chronic/recurrent illness like PANDAS. If we are to take cues from other similar illnesses (similar in the idea that they too have exacerbations, such as Chron's Disease) it might be best to keep in mind that management of exacerbations is, unfortunately, the much more common alternative than a full blown cure.

 

Hm, that is interesting - I interpreted 100% to mean for a period of time (remission) rather than "cure". I checked yes, as we are at 100% right now, but I would certainly not consider it game over - and she is still on abx for the foreseeable future, so to call it a cure would be silly. Some here might not call it 100% if the child was still on abx. I guess that is a matter of perspective. 100% to me, means a joyful child, free of OCD, anxiety, eating disorder or sensory issues. Just a kid.

 

(funny story - she had many issues among them, severe contamination OCD. Today it is COLD here, and I gave her a bottle of water while outdoors. She put it on the pavement on its side, with her feet resting against it, because it was too cold to hold. Even after a year, I just looked at her in amazement. She is back to being a gross little 9 year old, with absolutely no sense of fear about germs or dirt. I tried to explain that to doctors over and over, that she could not have contamination OCD and I did not notice - this was a kid you had to stand over to make her wash her hands until PANDAS hit. Now I am the only one thinking "ugh...." when that water bottle is on the ground).

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