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I have been putting IVIG off for nearly a year. My dd71/2 is on Augmentin daily and just tested pos for rapid strep How is that possible? We see Dr. B on Monday. He has rec IVIG. My questions are has anyone had it and HASN'T seen any improvement at all? I am getting very desperate as her symptoms keep increasing. Anxiety is very bad. Been sleeping with me for almost a year. Will not leave a room alone. Self worth is completely gone. My twin boys (3.5) are being tested and most like positive for PANDAS! Low IgM on one and low IgG on the other? Thoughts?

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I don't believe my son saw any benefits from IVIG. It was a very rough recovery which led us eventually to a lyme/bartonella diagnosis. My daughter has labs that would indicate Pandas (high CamK and high anti-neuronals) and episodic OCD/sensory issues but no evidence of strep. She has some IND and ++ lyme bands and is responding very well to treatment for bartonella (zith+bactrim). I am not bashing IVIG. I know it's helped some kids. But for us, it was a detour, not a treatment that moved us forward.

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We are at the same crossroads with our ds11. If he is doing fairly well, should we leave it as "good enough" and possibly miss a chance for more recovery or do the IVIG and then?...is there a chance that IVIG will set us back to a place that we never improve back to where we are now?

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Google IVIG. Do some research on it. Take pandas out of the equation. If someone has auto-immune disease or encephalitis, ivig works best if given within the first 18 months of illness. After that it takes more ivigs and it takes longer to work. The dose that is recommended for autoimmune disease is 2g/kg.

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I have been wondering alot of the same things. We have been dealing with the PANDAS symptoms for 2 years.. but didn't know it was PANDAS until 10 months ago.. at which time they started her on antibiotic and she has been on them ever since.. with in a month of starting the antibiotic she was 99% better.. only having mild symptoms when exposed to someone sick. Then she got an infection in Oct 2010 in the form of an abscessed tooth(which the dentist and doctors have told me most abcessed are a form of strep)Which sent her into a big PANDAS flare up for the whole month of Oct and most of Nov.. we incressed the antibiotic(we had moved her down to mantanince dose) and had the dental work done that was needed.. by the end of Nov and all of Dec 2010 she was back at 99% well again..

 

In Jan 4 of the 6 of us in our family caught strep.. This had her having symptoms of PANDAS for two weeks. but after that she did good 90 to 95% better for the end of Jan and 1st part of Feb, then 99% better at the end of Feb..

 

ONLY for her to get sick This month. Last tuesday he symptoms came back and has been getting worse and worse by the day. Last Thursday she started running a fever and was coughing her head off non stop.. So I took her into the doctors on Friday and they said she has Croup.. They did not increse her antibiotic but did start her on a 5 day treatment of steroids for the croup... since i always heard about Steroids helping with PANDAS.. I had great hopes that this would help both with the Croup and also with the PANDAS flare she seems to be in... but we took the last dose of steroids yesterday morning... and she is not only still coughing but the PANDAS symptoms are worse. :(

 

 

So I am back to thinking about IVIG... but I have so many questions...

 

One is every time my dd has been in a big flare since starting treatment for PANDAS has been when she herself is sick she gets mild emotion/mood symptoms when she is exposed to something.. but the big OCD, anxeity and fears and even bigger emotion adn mood symptoms like crying for hours and hours and not sleeping or letting me leave a room type stuff only comes when she herself has been sick. And what I have found to this point is that it takes an incresse of her antibiotic and then about 4 weeks for her to be back to normal.

 

I'm wondering what would IVIG do better then the antibiotic... everyone is always talking about the wonders of IVIG and how it is the best for PANDAS. but then i read of it taking about 3 to 4 weeks for the benifits of the IVIG to start showing.. read today about a child who had it done 4 weeks ago and yet today would be only day 3 for there child to be having good days... so 4 weeks to see results with IVIG and 4 weeks to be symptom free with antibiotics.

 

Then I have seen kids post IVIG who are still having the mild symptoms when exposed to strep.. and then those who end up with symptoms of PANDAS when they become sick.. again... So I don't really understand what is it about IVIG that is to be better then the antibiotic..

 

PLEASE don't take this post as me bashing IVIG in any ways.. I really know nothing about IVIG and the reason I'm posting at all is I want to know more.. because I"m thinking about if this is something I should be doing for my dd.

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I have been putting IVIG off for nearly a year. My dd71/2 is on Augmentin daily and just tested pos for rapid strep How is that possible? We see Dr. B on Monday. He has rec IVIG. My questions are has anyone had it and HASN'T seen any improvement at all? I am getting very desperate as her symptoms keep increasing. Anxiety is very bad. Been sleeping with me for almost a year. Will not leave a room alone. Self worth is completely gone. My twin boys (3.5) are being tested and most like positive for PANDAS! Low IgM on one and low IgG on the other? Thoughts?

 

Hi Jennifer...what dose of Augmentin was your dd7.5 on? Was it once a day or twice a day? (I know docs rx 1x daily Augmentin to prevent strep...not effective IMO.)

 

I would make sure family members are neg for strep (throat culture 1st...make sure you don't have a carrier).

 

btw Augmentin isn't really good for clearing carriers...Azith. or Clindamycin is better. I know lots of East Coast docs don't like Azith. (resistant strains in the East) but it works well for many PANDAS kids.

 

Also, PANDAS kids don't have a normal immune system against strep. It seems that reg. low prophylactic doses don't cut it for strep prevention in these kids.

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I have been wondering alot of the same things. We have been dealing with the PANDAS symptoms for 2 years.. but didn't know it was PANDAS until 10 months ago.. at which time they started her on antibiotic and she has been on them ever since.. with in a month of starting the antibiotic she was 99% better.. only having mild symptoms when exposed to someone sick. Then she got an infection in Oct 2010 in the form of an abscessed tooth(which the dentist and doctors have told me most abcessed are a form of strep)Which sent her into a big PANDAS flare up for the whole month of Oct and most of Nov.. we incressed the antibiotic(we had moved her down to mantanince dose) and had the dental work done that was needed.. by the end of Nov and all of Dec 2010 she was back at 99% well again..

 

In Jan 4 of the 6 of us in our family caught strep.. This had her having symptoms of PANDAS for two weeks. but after that she did good 90 to 95% better for the end of Jan and 1st part of Feb, then 99% better at the end of Feb..

 

ONLY for her to get sick This month. Last tuesday he symptoms came back and has been getting worse and worse by the day. Last Thursday she started running a fever and was coughing her head off non stop.. So I took her into the doctors on Friday and they said she has Croup.. They did not increse her antibiotic but did start her on a 5 day treatment of steroids for the croup... since i always heard about Steroids helping with PANDAS.. I had great hopes that this would help both with the Croup and also with the PANDAS flare she seems to be in... but we took the last dose of steroids yesterday morning... and she is not only still coughing but the PANDAS symptoms are worse. :(

 

 

So I am back to thinking about IVIG... but I have so many questions...

 

One is every time my dd has been in a big flare since starting treatment for PANDAS has been when she herself is sick she gets mild emotion/mood symptoms when she is exposed to something.. but the big OCD, anxeity and fears and even bigger emotion adn mood symptoms like crying for hours and hours and not sleeping or letting me leave a room type stuff only comes when she herself has been sick. And what I have found to this point is that it takes an incresse of her antibiotic and then about 4 weeks for her to be back to normal.

 

I'm wondering what would IVIG do better then the antibiotic... everyone is always talking about the wonders of IVIG and how it is the best for PANDAS. but then i read of it taking about 3 to 4 weeks for the benifits of the IVIG to start showing.. read today about a child who had it done 4 weeks ago and yet today would be only day 3 for there child to be having good days... so 4 weeks to see results with IVIG and 4 weeks to be symptom free with antibiotics.

 

Then I have seen kids post IVIG who are still having the mild symptoms when exposed to strep.. and then those who end up with symptoms of PANDAS when they become sick.. again... So I don't really understand what is it about IVIG that is to be better then the antibiotic..

 

PLEASE don't take this post as me bashing IVIG in any ways.. I really know nothing about IVIG and the reason I'm posting at all is I want to know more.. because I"m thinking about if this is something I should be doing for my dd.

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ditto 3boysmom...I have the same questions and fears....why not treat now, before it gets worse, and maybe prevent it getting worse (thus harder to treat), but what if it makes things worse....

 

We are at the same crossroads with our ds11. If he is doing fairly well, should we leave it as "good enough" and possibly miss a chance for more recovery or do the IVIG and then?...is there a chance that IVIG will set us back to a place that we never improve back to where we are now?

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great questions ma2ar2rm2---again, I share the same concerns. I just wish there would be some parents who have done IVIG, moved on with life, etc. that would come back and post. Or are there any?

 

I have been wondering alot of the same things. We have been dealing with the PANDAS symptoms for 2 years.. but didn't know it was PANDAS until 10 months ago.. at which time they started her on antibiotic and she has been on them ever since.. with in a month of starting the antibiotic she was 99% better.. only having mild symptoms when exposed to someone sick. Then she got an infection in Oct 2010 in the form of an abscessed tooth(which the dentist and doctors have told me most abcessed are a form of strep)Which sent her into a big PANDAS flare up for the whole month of Oct and most of Nov.. we incressed the antibiotic(we had moved her down to mantanince dose) and had the dental work done that was needed.. by the end of Nov and all of Dec 2010 she was back at 99% well again..

 

In Jan 4 of the 6 of us in our family caught strep.. This had her having symptoms of PANDAS for two weeks. but after that she did good 90 to 95% better for the end of Jan and 1st part of Feb, then 99% better at the end of Feb..

 

ONLY for her to get sick This month. Last tuesday he symptoms came back and has been getting worse and worse by the day. Last Thursday she started running a fever and was coughing her head off non stop.. So I took her into the doctors on Friday and they said she has Croup.. They did not increse her antibiotic but did start her on a 5 day treatment of steroids for the croup... since i always heard about Steroids helping with PANDAS.. I had great hopes that this would help both with the Croup and also with the PANDAS flare she seems to be in... but we took the last dose of steroids yesterday morning... and she is not only still coughing but the PANDAS symptoms are worse. :(

 

 

So I am back to thinking about IVIG... but I have so many questions...

 

One is every time my dd has been in a big flare since starting treatment for PANDAS has been when she herself is sick she gets mild emotion/mood symptoms when she is exposed to something.. but the big OCD, anxeity and fears and even bigger emotion adn mood symptoms like crying for hours and hours and not sleeping or letting me leave a room type stuff only comes when she herself has been sick. And what I have found to this point is that it takes an incresse of her antibiotic and then about 4 weeks for her to be back to normal.

 

I'm wondering what would IVIG do better then the antibiotic... everyone is always talking about the wonders of IVIG and how it is the best for PANDAS. but then i read of it taking about 3 to 4 weeks for the benifits of the IVIG to start showing.. read today about a child who had it done 4 weeks ago and yet today would be only day 3 for there child to be having good days... so 4 weeks to see results with IVIG and 4 weeks to be symptom free with antibiotics.

 

Then I have seen kids post IVIG who are still having the mild symptoms when exposed to strep.. and then those who end up with symptoms of PANDAS when they become sick.. again... So I don't really understand what is it about IVIG that is to be better then the antibiotic..

 

PLEASE don't take this post as me bashing IVIG in any ways.. I really know nothing about IVIG and the reason I'm posting at all is I want to know more.. because I"m thinking about if this is something I should be doing for my dd.

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Those are my exact thoughts! I read others that were "hold outs" like us and staying on antibiotics alone and read how they moved on to IVIG and seem to be having some of the same issues as before. So, what am I hoping to accplish? Our sons immune tests came back with bad results, so insurance would probably cover it and Dr.B is ready for us....but WE are having second thoughts and enjoying the relief of dysfunction (for the moment). I wish I had the right answers.....

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Before logging on today, I was going to ask the same questions...to IVIG or not to IVIG. My son (will be 11 in June), started showing symptoms last May (started with OCD hand rinsing, morphed into more tics, separation anxiety). The worst was in September/Oct when he was ticcing quite a bit, even at one point writhing on the floor. He started doing much better after a 5 day Medrol steriod burst, then was symptom free for 6 weeks (during which time he had another steriod taper taken for a severe asthma attack). Around Christmas, symptoms began again, this time OCD (hand rinsing, which went away and was replaced by touching objects several times), also noticed a change in handwriting. His PANDAS doc (neuro) recommended a change in antibiotics, which he's been on two weeks. Still has OCD behaviors, but I have noticed a significant improvement in his handwriting. She recommended IVIG as the next step if little or no improvment with this antibiotic. Compared to some on this board, his symptoms are mild. He functions quite well in public and does very well in school, no raging, no inappropriate behavior, just the OCD, and obsession with "potty" talk and handwriting (which as I said has recently improved). She feels that IVIG may blast lingering antibodies that continue to attack his basal ganglia. If I knew for certain it would help and knock the bad stuff out, I would do it in a heartbeat, but considering how relatively mild his symptoms are, I am wondering if it is worth the risk.

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Everyone that knows me knows I am a HUGE proponent of IVIG, although I do recognize the risks and don't fault anyone for being cautious. I think most of the risks stem from the potential for a bad reaction or blood-borne infection and I'm not aware of any cases personally where IVIG made PANDAS permanently worse. I'm sure they're out there (as it seems just about anything is possible with this disease), but I have to think it would be very rare. There is a test that can be done before to rule out allergic reactions.

 

I do believe that the longer those PANDAS pathways and channels are left open, the harder they are to close and there are plenty on here who have multiple IVIG's with slow progress. The sooner, the better with IVIG, if you ask me.

 

If one of my other children were to be diagnosed, I would push for HD abx and oral steroids first, but if they weren't back to 80% of their baseline within a month, I wouldn't hesitate to go to IVIG. I think the benefits of IVIG are clearly stronger, longer-lasting, and more immuno-modulating (corrective). Many even question if abx have immuno-modulating effects, although I personally believe they do at high-enough doses.

Edited by TexasDad
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I do believe that the longer those PANDAS pathways and channels are left open, the harder they are to close and there are plenty on here who have multiple IVIG's with slow progress. The sooner, the better with IVIG, if you ask me.

 

 

I agree with you. And, I would make sure to hit hard with antibiotics 1st. If there is lingering infection (in the child or household), IVIG doesn't seem to work as well. If we had things to do over (20/20 hindsight) I would have done IVIG sooner. But, I also think finding the "right" antibiotic (Azih. for us) and clearing strep carrier sister was important. I don't think the IVIG would have had as much effect if we had only been on low dose Amoxicillin and sister was still carrying strep.

 

Steroids (but we've only done 5-6 days at a time) never seemed to give us any lasting relief.

 

I also wonder if PANDAS is treated more aggressively from the get go...if you are less likely to have that 5-10% of lingering symptoms that seem to remain in some of these kids (at least in mine.)

Edited by EAMom
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