I have been told only 1 IVIG

[chodnett]

I was told by a doctors nurse only one IVIG treatment is necessary for PANDAS. If that does not work then you do not have PANDAS something else is going on.

Will a second IVIG make matters worst?

[Fixit]

I was told by a doctors nurse only one IVIG treatment is necessary for PANDAS. If that does not work then you do not have PANDAS something else is going on.

Will a second IVIG make matters worst?

 

i was just speaking with someone about this topic...

who says 1...who gets to make that kind of call???

we are still learning about this condition.....

maybe if child young and caught early,,or that is your predisposition

 

others may need more, again depending on age, duration..relapse..how insiduous, personal genetic make up.....

 

though there may be other things going on in the individual that need to be addressed.....saying just one ivig is all that will ever be needed, is almost as bad as saying no such thing as pan/pits...

 

we have not yet done a big gun....just my opinion ...and i feel i have enough of a general/some detailed knowledge, to realize the vast width and breathe of this desease....still too much to learn....

 

i don't know if 2 will make it worse...again..i think genetic makeup comes into play...and spacing between doses

[EAMom]

I was told by a doctors nurse only one IVIG treatment is necessary for PANDAS. If that does not work then you do not have PANDAS something else is going on.

Will a second IVIG make matters worst?

 

Hmmm... Dr. K says 1 IVIG (1.5mg/kg) is needed for most (about 80% of) PANDAS patients. Which means 20% will need a 2nd (or more)infusion. (Dr. K. defines "cure" as 75% improvement over 4mo....or something to that effect. The important point is that he isn't saying 100% improvement).

 

I think for most people that get more than 1 IVIG, it's not the the first "doesn't work", it is just that the first doesn't give the child 100% remission, or that the child has pretty good remission, but then relapses after a period of time (weeks, months, or even year), often after getting another infection (strep, or otherwise).

 

Other PANDAS experts (Dr. B., Dr. Latimer) tend to recommend multiple IVIG's right off the bat. However, I suspect they are aiming for 100% improvement, not 75% improvement.

 

I would say that if the first IVIG helps at all, then you are likely looking at PANDAS...but a lot of kids on this forum don't seem to get to 100% with just 1 IVIG, for 1 reason or another. If 1 IVIG isn't doing much, it's possible that it is still PANDAS but that there are other issues complicating healing (ie. Lyme, persistent infection that needs to be addressed with higher doses of stronger antibiotics, immune deficiency, exposure to strep carrier in household...)

 

I don't believe a 2nd will make matters worse. Although any IVIG (1st or 2nd) may make matters worse INITIALLY (first couple or few weeks)... while the antibodies settle down (turning back the pages.)

Edited September 27, 2010 by EAMom

[norcalmom]

This is an issue that I struggle with. How to decide, because lets face it, very few of us have the priveledge of working with a doctor that is making recommendations regarding our child's care. Its all on us.

 

My child is 7 weeks post IVIG. He got a cold last week. We have had a rough few days. So, this issue has come to the forefront for me, because it seems there are two schools of thought - 1. its a blip, just another bump in the bumpy road of post-ivig 2. he needs another ivig, becuase he is definately not 100%, not even 75% (but he is also definatley getting better - we have seen some symptoms disappear)...so THE TIMIG also becomes a question. IF we do another ivig now...maybe we have more chance of success because the illness is in a weaked state. If we wait and his pandas gets worse (and we KNOW how fast that can happen1) another ivig might only bring us back to where the first one did.

 

I am thinking of testing his cunningham levels...I am hoping this will tell me if his system is sending out the wrong antibodies resulting in the CAMK anti-neuronal chain of events that convinced me had pandas in the first place. Then, I'm going ot do a Lyme test. (and mycoplasma - another thing I missed when cobbleing my own list of tests in diagnosing my child)

 

Do any of the doctors that prescribe more than one ivig use the cunningham test? I don't get why not -I don't get why even the pandas experts don't use this test. I think its comical that these docs - prescribing multiple ivigs that are considered "experiental", poo-poo a test because it is considered a "study". I know at least one pandas doc that doesn't care about this test. why is it a "clinical" diagnosis...why can't this be a test for it?(along witht he clinic picture). Why don't they acknowlege it. After all, her studys on sera and mice are the only proof we have that is is an autoimmune disease. ..warranting ivig in the first place.

 

So, tell me, are there people out there that are coming back normal on cunninghams tests, and still having symptoms, that are getting IVIG? Are there people with normal cunninghams tests and pandas at all?

 

I'm desperate for some tool that will tell me if another ivig is the right decision.

[melanie]

Hi

 

Danny has been dxed with PANDAS from 4 mds Dr T,Dr J ,Dr Neurologist(nj),and Dr B. He has had 11 IVs so maybe 1 will work for some younger kids but well we will be doing this for the next3 years

 

melanie

[EAMom]

Hi

 

Danny has been dxed with PANDAS from 4 mds Dr T,Dr J ,Dr Neurologist(nj),and Dr B. He has had 11 IVs so maybe 1 will work for some younger kids but well we will be doing this for the next3 years

 

melanie

 

But keep in mind, weren't Danny's IVIG's all low dose? That is another ball of wax altogether.

[norcalmom]

yes, I'm assuming he has some primary immune deficiency? Not saying he doesn't have pandas on top of it (or becasue of it).

 

That is a another question. Do the kids that only need one ivig, have heathly immune systems? ie - they pass the strep pnemonaie titers, have normal Igg, iga, igm and subclasses.

 

I would consider my child borderline in that area - low igg (out of range but not low enough to be considered immune def.), low subclass 3, failed all but one of 14 pnemon. titers. But he has no allergies, and doesn't get that sick, that often.

[laurenjohnsonsmom]

yes, I'm assuming he has some primary immune deficiency? Not saying he doesn't have pandas on top of it (or becasue of it).

 

That is a another question. Do the kids that only need one ivig, have heathly immune systems? ie - they pass the strep pnemonaie titers, have normal Igg, iga, igm and subclasses.

 

I would consider my child borderline in that area - low igg (out of range but not low enough to be considered immune def.), low subclass 3, failed all but one of 14 pnemon. titers. But he has no allergies, and doesn't get that sick, that often.

 

 

Lauren will be having her 4th IVIG next week. Although she is "functional" as in she's back in school and doing well, we believe the IVIG is a HUGE factor in her success. She is diagnosed "immune deficient". Lauren was terribly sick the entire school year prior to her sneezing manifestation. Even though she was always ill and never really improving (missing 26 days of school) her doctor NEVER felt the need to put her on antibiotics-EVER! Her "chronic illness" condition improved over the summer (out of the middle school germ factory) but the day before 6th grade she had the TDap vaccine and her last Guardicil and-WHAMO her PANDAS manifestation.

 

I know every child and every story is different but Lauren had her 1st and biggest improvement when we put her on Azithromyacin (thanks Buster) and even then we didn’t see any improvement until day six of this abx treatment when I decided to double her dose from 250mg/day to 500mg a day. The positive results were almost immediate as within a few hours of this increase her sneezing tic decreased in half! I think Lauren had a terrible infection harboring in her body-forever! I think it’s what caused the autoimmune response/BBB. I believe the abx helped her body rid this infection for the most part. The IVIG #1 helped the body correct this autoimmune response and I think the subsequent IVIG keeps her much healthier than she was prior. We will continue this every 8-10 weeks as long as we feel the benefits exceed any risk and she remains where she's at or keeps improving.

 

My biggest hearts desire is that we keep her "mostly well" as she's in the midst of puberty and than her body will take over.

 

Actually Lauren and our entire family just passed around this terrible cold/virus (who knows) and this time both of my PANDAS children breezed through it with little or any increase in PANDAS/PITANDS symptoms but other times they get a cold (maybe it’s strep) and Lauren/Audrey backslide a little but we always get them back. I really think the prophylactic azithromyacin daily also helps significantly.

 

Lauren DOES still have this “eye flicker” (as I call it). I never much noticed it but a few times prior to her first IVIG but I was just watching one of the old news stories and I noticed it “plain as day”. It’s crazy looking. Does anyone else’s child do this?

 

Check it out! She does it at exactly 48 seconds into the video..

 

http://www.wavy.com/dpp/news/health_news/Sneezing-12-year-old-gets-sleep-test

 

She still does this routinely. Sometimes more than others. Is she still battling “demons” in her body? Does she have Lyme like her sister and I (even though her Igenex testing showed only the 41 band and one other indeterminate band), who knows!?! We just take it one step at a time and trust our doctor(s) who work with us to make decisions, the best we can, as we go along!

Edited September 28, 2010 by laurenjohnsonsmom

[melanie]

Dannys dose although lower 1g per kilo still an acceptable dose

every 21 days

 

melanie

[norcalmom]

Thanks for the updates. Does Lauren ever get Cunningham tests? She's probably been stuck enough to last a life time, just wondering if any fluctuations from ivig to ivig.

[EAMom]

Dannys dose although lower 1g per kilo still an acceptable dose

every 21 days

 

melanie

 

I would call 1.5gm/kg - 2.0gm/kg high dose.

 

Dr. K. (who has treated hundreds of PANDAS kids, and I understand will publish in the future) uses 1.5 gm/kg.

 

Swedo used 2.0 gm/kg in her research.

 

There isn't really much known (from a research standpoint, or even from a practical standpoint) about lower doses, even 1gm/kg in PANDAS children.

 

1 gm/kg may be "acceptable" for some illnesses, but we don't know if it is optimal (or even acceptable) for PANDAS. The research just isn't there. And, the fact that Danny gets 1gm/kg so frequently (every 21 days), suggests to me, that it likely not an ideal dose for him.

Edited September 28, 2010 by EAMom

[EAMom]

Lauren DOES still have this “eye flicker” (as I call it). I never much noticed it but a few times prior to her first IVIG but I was just watching one of the old news stories and I noticed it “plain as day”. It’s crazy looking. Does anyone else’s child do this?

 

Hmmm. That definitely looks like a tic!

Edited September 28, 2010 by EAMom

[cory2605]

We had our visit with Dr. M today for evaluation of my son's condition and for him to begin a study they are conducting on sudden onset of OCD/Tic symptoms and tx with a specific antibiotic vs. tx with a placebo. Of course we won't know which we are getting but either way, after reading all the posts....I beginning to wonder if any kids get better with antibiotics alone or in most instances is an IVIG required? Although his titers were within range but at the high end of normal, he has all the symptoms of Pandas, sudden onset of Tics/OCD, chronic sickness up until the last couple of years, etc. Has anyone here had significant success with just antibiotics alone?

 

Thanks!

[EAMom]

We had our visit with Dr. M today for evaluation of my son's condition and for him to begin a study they are conducting on sudden onset of OCD/Tic symptoms and tx with a specific antibiotic vs. tx with a placebo. Of course we won't know which we are getting but either way, after reading all the posts....I beginning to wonder if any kids get better with antibiotics alone or in most instances is an IVIG required? Although his titers were within range but at the high end of normal, he has all the symptoms of Pandas, sudden onset of Tics/OCD, chronic sickness up until the last couple of years, etc. Has anyone here had significant success with just antibiotics alone?

 

Thanks!

 

Our dd got better with antibiotics initially....not 100%, but LOTS better/very close with Azith. 250mg/day (the 4th antibiotic we tried). Then, for the first year after diagnosis, we noticed her "baseline" was rising and she was having exacerbations with non-strep illnesses (eg viral) as well as strep exposure (when a family member got strep) even though she remained on treatment strength Azithromycin (250mg/day for a 50 pounder). Also, interesting to note that her handwriting/margins issue didn't improve until she had IVIG.

 

So, I suspect it varies with the child. I think your child has a chance with remission on antbiotics alone if you catch PANDAS really early. But, it does seem that many kids on this forum (for whatever reason, years of PANDAS, immune issues...) eventually need more than just antibiotics.

 

So, it is possible that your child gets significantly better on abs...but it might not be sustained (even with sustained abs) or close enough to 100% improvement to be satisfactory.

 

By the way, don't worry too much about strep titers. Many PANDAS kids don't have elevated strep titers (mine didn't).

 

Are they testing the CaM kinase ll and anti-neural antibodies (Cunningham test) for this study?

 

Also, with your son's history of chronic sickness, has a complete immune work-up been done (to rule out immune deficiency)?

Edited September 28, 2010 by EAMom

[cory2605]

I think he had the immune test with the first series of test we had done (I took a list of tests to have done which I think I got off of this forum to my son's Ped. and begged her to run them) This is when I first came across 'PANDAS' on the internet and felt sure this is what my son had. The Pnuemonia 23 IgG (?) test was done and Dr. M. looked at this today and said his immune system looked pretty good. I don't think the Cunningham has been done. She's ordering a few more tests and maybe that is one of them. What will this test reveal?

 

Trish