8 weeks post ivig -update

[sptcmom]

Im not a big fan of Dr K's approach but I do subscribe to his neurological reasoning. He prefers to wait and watch before scheduling another IVIG and recommends atleast 12 weeks or more and recommends all co infections and co-issues be resolved before IVIG again.Children have an amazing capacity to heal when being helped in the right direction, having the right diagnosis and meds. Neuroplasticity, tissue regeneration and diet play a huge part in how children's bodies can be miraculous.Its an individual viewpoint but thats what I believe in and have seen so often in my practice as well.

DS 8 also had textbook Pandas onset in March this year. We made the HUGE mistake of not testing for lyme with Igenex before spending a ton of cash on the IVIG. The IVIG helped a bit overall but didn't stick. DS started limping at 12 weeks again. His strep titers were down and we tested for Igenex then. Igenex came back negative!! Compete lyme panel and complete coinfection panel all negative! Except one tiny blip for Bartonella being = to 1:20 which is ruled negative by Igenex BUT their test is not designed to go any deeper.

So we saw Dr Jones and understood why Lyme is very much a clincial diagnosis by an LLMD. He saw the Bartonella blip too and did an amazing clinical exam - 2 hours of in depth neurological testing on Ds8.The pandas docs's exam PALE in comparison- like totally amazing. Anyways he retested DS for Bartonella with specialty labs and also some viruses, chlamydia and other tests. DS has Bartonella. Specialty labs just test deeper and we found it thank GOD!

DS is a whole new kid. The IVIG did nothing inspite of a classic pandas onset, a 15 minute exam by Dr K and a Pandas diagnosis with immediate IVIG recommendation, a very thorough exam by Dr T and a query Pandas type-2 diagnosis with Mycoplasma co infection.

 

We have had ups and downs with Herxing but DS is finally on the right track. I would recommend thorough testing prior to IVIG again which is an invasive procedure and we're putting other people's stuff into our kids which was very scary for me.

Again each child is different and will progress in a unique way.

SF mom has wonderful posts on congenital Lyme and Lyme overall. I think those are so worth a read.

I am totally blown away how thorough Dr Jones was and I hear all the good llmds are similarly genuine.

Lyme can mimic a lot of neurological disorders. No one, none of the Pandas doc understand Lyme well yet but they are all trying (Dr B is far ahead of the pack as per my info) to understand. Whats to say that Lyme doesn't mimic the PANDAS symptoms too. If it can mimic ASD and Aspergers etc it can mimic anything. Besides motor tics, anxiety and many Pandas symptoms can be due to the lyme spirochete as well. Its all very confusing, complex, mindboggling and so darn expensive....

Good luck with your child and God Bless. I hope you continue to see sustained progress and find the right path that is right for your unique situation.

[norcalmom]

I haven't read cure unknown yet, but one of the reasons I did ivig as soon as I could was because potential changes in the rules or standards (or lack of them)might make getting ivig even harder than it already is.I just had this feeling like EAmom and Fixit said - like we might be in the sweet spot at the moment. When governing bodies like that become involved it is generally the "greatest good for the greatest number" that is their concern..not necessarily what is best for the individual. With all the "controversy" you never know which way the pendulum might swing.

 

Bronx - funny - stirring the anitbody pot...I wonder if you will get page turning every time. Theoretically it should get easier and easier each time right? The additional ones will just further suppress the bad antibodies.

We didn't have bad page turning. strange moments here and there - but then again ds was not in exacerbation. Just the cold caused the set back. He's been pretty stagnant since the cold. Not slipping further tho, so I guess that is good.

 

I just wonder if there isn't some evidence of when more is needed - once the kids is a certain age, or if it is PITAND vs pandas, blood test..something. I DO think that different kids need different treatments - heck, some kids get better on antibiotics alone. Some kids do get better on one ivig. But which ones? And, is there value in doing two (or more) within a certain number of months, or if wait for relapse is the way to go...

 

Thanks for all your support! I just spent a couple days away with some girlfriends and I'm feeling very refreshed. I worried a bit - calling and checking in on DS's status, but he's still here and unscathed by my absence...highly recommend it!

 

EAmom - thanks for the reply on the cunningham study and PEX. VERY interesting - since a fairly good number have the same cam K II after the PEX, but no symptoms. Maybe it just takes longer for that to fall in some kids (or maybe those kids are the ones that relapse... I feel like I could learn so much if I could just get my hands on her data!!!)

[EAMom]

 

 

EAmom - thanks for the reply on the cunningham study and PEX. VERY interesting - since a fairly good number have the same cam K II after the PEX, but no symptoms. Maybe it just takes longer for that to fall in some kids (or maybe those kids are the ones that relapse... I feel like I could learn so much if I could just get my hands on her data!!!)

 

Does anyone have a working link to the Swedo 1999 pex/ivig study? The links that used to work don't (at least for me!). (I just wanted to check and make sure that dh got that straight since I didn't know if there were 16 kids that got plasmapheresis in the study?)

[norcalmom]

http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

http://ajp.psychiatryonline.org/cgi/reprint/155/2/264

 

The first one is the pex vs ivig one done with Perlmutter.

The second is is the "Frist 50 cases"

 

pandasresourcenetwork.com has good links for most research:http://www.pandasresourcenetwork.com/about-pandas/researcher-information.html

as well as http://pandasnetwork.org/impact-on-the-family/summary-of-vital-pandas-studies/ which I htink used to be "Buster's Corner"! My favorite thing to read when I first started ot research (and still basically is since I need to read each paper about 10 times to understand them) Seems like every time i read one i catch something I missed before - like the fact that cunninghams's Cam K II paper says "in the absence of symptoms" and no where else tell you how the kids became "absent of symptoms". Do you know where Buster found this out about cunningham's sera? Did Cunningham use Swedo's decade old sera(?).(!)

 

According to this, the PEX and ivig worked equally well for tics. I dunno where all the PEX better fom tics comes from. Perhaps anecdotal from some docs experience?

 

 

I made a mistake on either this thread or another where we were talking about tics. only 80% of the kids had tics (I thought they all did..but just checked that).

 

"The children were evenly divided between those with a primary diagnosis of OCD (N=24, 48%) and those with primary tic disorder (N=26, 52%); 43 (86%) of the children reported obses- sive-compulsive symptoms, and 40 (80%) of the chil- dren were found to have motor tics. Boys outnumbered girls by a ratio of 2.6:1"

 

As for your question on the number of kids that did PEX, it looks like it was 10 kids PEX, 9 kids ivig, but after the study was done, they allowed the placebo group pex or ivig, so it was 16 PEX and 12 ivig.

"30 children entered the study and 29 completed the trial. Ten received plasma exchange, nine IVIG, and ten placebo. At 1 month, the IVIG and plasma-exchange groups showed striking improvements in obsessive-compulsive symptoms (mean improvement on children’s Yale-Brown obsessive compulsive scale score of 12 [45%] and 13 [58%], respectively), anxiety (2·1 [31%] and 3·0 [47%] improvement on National Institute of Mental Health anxiety scale), and overall functioning (2·9 [33%] and 2·8 [35%] improvement on National Institute of Mental Health global scale). Tic symptoms were also significantly improved by plasma exchange (mean change on Tourette syndrome unified rating scale of 49%). Treatment gains were maintained at 1 year, with 14 (82%) of 17 children “much” or “very much” improved over

baseline (seven of eight for plasma exchange, seven of nine for IVIG)."

 

 

Also interesting: within one year the % that required additional treatment: two of the PEX kids, and one of the IVIG kids. Total of 3 of 17 kids.(this is the origianl group - not counting he placebos that got treatment later) it is consisitent with Dr K's approx "20%" need another treatment. All of them had break through strep infections.

"1 year follow-up

At 1 year after treatment, 17 children initially assigned active treatment were reassessed (plasma exchange, eight; IVIG, nine). Three children had had a second course of immunomodulatory therapy in the intervening months. One child in the plasma-exchange group was retreated with plasma exchange for a symptom exacerbation 10 weeks after initial treatment, one was treated with IVIG at 4 months, and one in the IVIG group had a second IVIG treatment at 2 months. At the time of their symptom exacerbations, all three children had a history of streptococcal exposure and increased antistreptococcal titres despite prescription of oral penicillin prophylaxis."

[nevergiveup]

Check with Buster, tics did not have same improvment with ivig and pex. He talks about this in a past thread, years ago. Apparently, kids with greater tic severity were in the group of PEX. And kids with much less tic severity were in the ivig group. Therefore, data on tic improvement is skewed due to the control groups from Swedo's studies. Ivig does not have as much success with tics as PEX. PEX sees an immediate improvement and ivig does not. I am not sure how you can say tics were equal resolved when those in the ivig group didn't have severe tics. But do

n't check with me check with buster or eamom.

[norcalmom]

Check with Buster, tics did not have same improvment with ivig and pex. He talks about this in a past thread, years ago. Apparently, kids with greater tic severity were in the group of PEX. And kids with much less tic severity were in the ivig group. Therefore, data on tic improvement is skewed due to the control groups from Swedo's studies. Ivig does not have as much success with tics as PEX. PEX sees an immediate improvement and ivig does not. I am not sure how you can say tics were equal resolved when those in the ivig group didn't have severe tics. But do

n't check with me check with buster or eamom.

 

I don't need to check with Buster or EAmom. I can read too, and so can you - that is why I linked to the actual study.

 

It depends on how you interpret the result. True, all the big time ticcers were int he PEX group, but in the end, the rating for both group was almost the same. IVIG was actually lower.

 

What you cannot say is :"Ivig does not have as much success with tics as PEX. PEX sees an immediate improvement and ivig does not." There is not enough data to say that. In the END BOTH ivig and PEX brought tics down to almost subclinical levels. PEX started a lot higher (had both more severe and more in number) so therefore a much greater percentage improvement. But you don't know that IVIG doesn' work as well, so you can't say "ivig does not have as much success as PEX"

 

Also, it isn't "immediate". here is a quote from the study

" most of the children did not have such a direct response, and showed the greatest improvement in the days and weeks following cessation of the apheresis procedure." Does that say immediate?

 

AND - I would argue that the stats in this study say that PEX works better for OCD (becasue there is more balanced data for that group). But in all honesty, you can't really compare two such small groups. I don't know why they used means instead of medians either, median means more to me.

 

Now that is just from the study. From my own experience, my ds had an immediate cessation of a verbal tic on day one of IVIG.

 

So I guess now I know where "PEX for tics" came from..I will go read that thread, but I will rely on what I read in the actual STUDY. And so should anyone else reading this thread.

Edited October 13, 2010 by norcalmom

[Healingthedude]

The way it has been explained to me by multiple Doctors treating PANDAS

and this is in in my layman terms....

 

There is an antibody factory that has been turned on by the strep,

The antibodies go to the basil ganglia and cause the neurological symptoms-tics ocd chorea etc.

The IVIG is like a sponge that goes around and mops up all the antibodies so the child's symptoms improve.

The antibody factory will continue to produce the antibodies- so after 4-6 weeks the antibodies ramp back up and the tics start coming back.

Antibiotics address the underlying infection that causes the antibody production.

 

It was recommended to me to treat with both ABX and IVIG for 6 months to a year to turn off the antibody factory.

If you are lucky and caught it early, ABX may be enough without IVIG or PEX.

If you diagnosed PANDAS later and the antibody factory has become part of your normal functioning/or malfunctioning

it is much harder to turn off and will take more treatment.

 

It would be great if there was a conference where all these doctors had a think tank and agreed on testing and treatment protocols for different subsets of kids.

I have seen about 6 doctors so far 2 neurologists, an immunologist, 3 DAN doctors and my pediatrician.

They all use different protocols and are hesitant to share them or to treat aggressively.

My pediatrician is the most willing, so he oversees my son's protocol with recommendations from the specialists.

[nevergiveup]

I believe the concern is that in the ivig group the kids tics were subclinical to start with. NorCalmom, you may think ur the expert. Keep reading maybe you will learn more!!!!

[norcalmom]

I would like to see something comparing one HD IVIG treatment to three HD IVIG. In the Swedo study - both groups continued to improve up to a year later. Most improvement was seen after 4 weeks, for both ivig and pex groups. But after a year - both greoups were still much improved from the one month mark.

 

the kids in the study had pandas for quite some time. the kids average age was 10years 3 mos for PEX, and 9years one mo. for ivig. The duration of the acute illness or exacerbation before the study entry was 29 weeks for PEX and over 12 weeks for ivig. BUT, if you read before that statement the kids admitted had to be in - it looks like this was at least the second exacerbation, so the actual amount of time they had pandas is probably longer (and we know this is probably true, based upon how old we see kids coming to this forum...and when the parents think the symptoms started.)

 

"Eligibility criteria were: a tic disorder, obsessive compulsive disorder, or both, that met definitions in the Diagnostic and Statistical Manual of Mental Disorders;17 onset of neuropsychiatric signs and symptoms before puberty; a history of sudden onset of signs and symptoms, or an episodic course characterised by abrupt exacerbations and periods of partial or complete remission; evidence of and association between streptococcal infection and onset or exacerbation of signs and symptoms (requirements for the P AND AS subgroup);10 and current exacerbation severe enough to cause significant distress and interfere with the child’s social functioning in at least two spheres (home, school, social relations)."

 

Many of the kids were on medications. This was 20 years ago...meds like this weren't dispensed nearly as freely as today. It looks like only the most extreme of cases were in the study (it took them 4 years to recruit for the study)..and I'd think they would need to have symptoms for longer than 3 mos to be on meds like this...so appears that they were in exacerbation for approx. 7mos and 3 mos respectively. The 7mos could be skewed bcs the main ticcers were in that group, and tics have a habit of hanging on longer (in or out of exacerbtion).

 

"It is intriguing that a single course of IVIG or plasma exchange gave such sustained treatment effects. The original hypothesis of our study was that both IVIG and plasma exchange would reduce symptom severity by blocking (IVIG) or removing (plasma exchange) the antistreptococcal antibodies that were cross-reacting with neuronal tissue.4–6 A single treatment course would therefore give lasting benefits if streptococcal infections were prevented by antibiotic prophylaxis. The hypothesis suggests that the rate of improvement with plasma- exchange treatment should be directly proportional to the rate of antibody removal. This improvement occurred in a few instances, with symptoms beginning to improve at about the time of the third exchange, and additional benefits shown after the fourth and fifth treatments.

H owever, most of the children did not have such a direct response, and showed the greatest improvement in the days and weeks following cessation of the apheresis procedure. This pattern could also be predicted by the hypothesis, since the inflammatory changes caused by the autoantibodies would take some time to resolve. The model is unable to explain why symptom recrudescences occurred so rapidly after streptococcal infections (since titre rises appear to occur more slowly), or to explain the mechanism by which peripheral effects of IVIG and plasma exchange could be translated across the blood-brain barrier to give volumetric changes in basal ganglia structures.30 The actions of IVIG and plasma exchange are too broad to be helpful in delineating the nature of the improvements or in determining the pathophysiology of the neurospychiatric symptoms."

 

I like to think of the donor ivig as retraining the body to release the correct antigen. There is a feedback loop - your body learns over time what antibodies to ask for according to effectiveness against an antigen. PAndas kids bodies release a "rouge" antibody, and the body keeps telling it to make more, because it is attacking stuff successfully with it (unfortunately that stuff is the bodies own neuronal cells). You could picture a gunner asking for a "red bullet" because the red bullets are good at killing stuff. and the ammo guy just keeps handing him red bullets. But the gunner is a jerk (and he' stupid, and blind too) the red bullets only kill our own troops. Flooding the body with one and a half times (or 2 times) the amount of immunoglobulin normally in it, shuts all bullet production down for a while, and the donor immunoglobulin knows the correct antibodies to ask for...So its like replacing the stupid blind guy with gunners that ask for blue bullets...the correct bullets for killing the enemy...no more red bullets flying around killing our own troops.

 

Anyhow, that is how I think of it. If a sponge soaking up the bad ones works for you, I like that visual !! Apparently you are clean, and I've seen too many violent video games.

 

We have to remember that she was using the strictest criteria to recruit for the study. Children with immune deficiency were not allowed in the study. Autistic kids were not allowed in. Underlying infections like Lyme and mycoplasma were not checked for. So perhaps kids with immune def. are more at risk for pandas, and need ongoing ivig. And "regular" pandas kids have a good shot at remission with one.

 

As for older and longer needing more, the kids in the PEX group were older and had their latest exacerbation longer, but they had greater success overall. So, does it show that PEX works better? OR that there is no correlation between duration / age and success rate? The "greater success overall" could be a result of the way the study was designed and the number of variables and small groups she was comparing. As I've been looking at the study and all the variables, I've been thinking that designing the "new study" - the one that they are doing now - could take months, but, then I thought I bet Swedo's been thinking of how to redesign it for 20 years!

 

Also, in Swedo's study "80% of the replacement fluid was 5% albumin" (remainder saline). and the process was done over 10-12 days...this is not the same as the PEX our kids are getting. I don't think(please someone let me know if this is correct or not - I have read that plasmapherisis and plasma exchange are different, and that what our kids would get today is plasmapherisis, not plasma exchange, and therefore todays "PEX"(which now seems to be interchangable for either pherisis or exchange), is actually not putting albumin back in. So, it is different. Swedo used donor blood product, (albumin) like ivig. It would be more like getting today's PEX and getting ivig the next day.( I think? Does anyone know?)

 

What I take away from the study is that immunotherapies work. I don't think there is enough data there to support which one works better for what type of symptoms, or even overall. The groups are too small, and they aren't well matched. But that they work - compared to the placebo group - absolutely!

[norcalmom]

I believe the concern is that in the ivig group the kids tics were subclinical to start with. NorCalmom, you may think ur the expert. Keep reading maybe you will learn more!!!!

 

 

I don't claim to be an expert, I'm just quoting the studies. Maybe you think you are the expert. I'm not a pandas expert. I'm a mathematician. Statistically, there isn't enough data to compare the two groups.

 

If I took two small groups of kids, and matched them exactly the same as she did (which is not exactly) and gave them both ivig. I would see differences in the numbers. There would be one or two ticcers in one group, there would be drop outs, there would be relapses, there would be the fact that one group was older (and perhaps one kids entered puberty and spontaneously got better), and were in exacerbation longer. And any ONE kid will skew the numbers in groups that small.

 

Where is the scale that says that 6.8 is subclinical? They used the "Tourette syndrome unified rating scale" Do you have a copy of the scale?

 

Also, since you are the expert, can you explain if these pex kids got a different treatment than what they would be given today? They got replacement albumin. Does that happen with PEX kids today? It took 10-12 days to treat them..perhaps that was just because the machine were slower then, or perhaps they did more exchanges than they do today, I don't know. So, no I'm no expert - I'm asking a question. I've read from people that got PEX recently that it takes 3 days, and there is "no donor blood product" (Does that mean no albumin?).

 

What I'm doing on the board - researching, asking questions, quoting studies, or posing discussions so that there can be meaningful debate. If there is an error or difference of opinion, I welcome being corrected or referred to the study or expert so I can learn more. I find your name- calling and insulting manner very off putting and unproductive, as I'm sure anyone reading this board does. I'd like to hope we have a community of support and welcome, so that more will stop reading, and start sharing.

 

If you think that PEX works better for tics, and believe that there is enough data to support that - and you have hashed it out on the board before my time - a simple link to the thread is helpful (or "hey, I remember a thread a while back on this, you can search for it - I think the ivig group had almost no ticcers" that would be helpful . Name calling and insults aren't.

 

In honesty, EAmom asked me for a link to the study. And in getting it for her, I quickly glanced at the chart that showed where all the kids end up at the end. And the ticcers in the ivig group was lower than the ticcers in the PEX group. That was the comment. But, I'm glad I went back and reread the whole thing, because I have a much better understanding of it, and specifically of its short comings in design.

 

So, thanks for encouraging me to look at it again, but please - can we keep things a bit more positive. I've got enough stress in my life.

[nevergiveup]

Ok msss mathmatician, then crunch all the numbers you want, you know they don't mean much. So why are you using this data to contradict anything and everything said on this forum. My neuro, not the greatest guy, also has his masters in statitics and he like yourself has concluded that if you look at all of the studies on Pandas, which are not statistically not sound, no blind, not replicated, number of participants, there is only a 4 percent chance pandas even exists. So all that Math and medical experience, and guess what HE'S WRONG!!!! I am tired of having to justify everything to you, you counter with strange assumptions and throw numbers at things to justify your points that are misleading. We have long been down this path of analyzing every statement in swedos studies. Many on this forum including myself have talked with swedo. If you want even better info watch her autism conference on internet where she talks in detail about about the study and individual children. No one is saying that ivig or pex do not help, just that pex was seen to help tics more. Anyway, I am glad you are on this journey, to really look at the numbers, I myself have a statitics background, and did that 6 years ago. There is a wealth of info on this forum, don't ignore it or counter always like "you" have all the answers, becuz the truth is all we have is our experience and these studies are still experimental, and these treatments are too. I hope you find help for your child and treatment that you feel is helpful.

[nevergiveup]

Ok msss mathmatician, then crunch all the numbers you want, you know they don't mean much. So why are you using this data to contradict anything and everything said on this forum. My neuro, not the greatest guy, also has his masters in statitics and he like yourself has concluded that if you look at all of the studies on Pandas, which are not statistically not sound, no blind, not replicated, number of participants, there is only a 4 percent chance pandas even exists. So all that Math and medical experience, and guess what HE'S WRONG!!!! I am tired of having to justify everything to you, you counter with strange assumptions and throw numbers at things to justify your points that are misleading. We have long been down this path of analyzing every statement in swedos studies. Many on this forum including myself have talked with swedo. If you want even better info watch her autism conference on internet where she talks in detail about about the study and individual children. No one is saying that ivig or pex do not help, just that pex was seen to help tics more. Anyway, I am glad you are on this journey, to really look at the numbers, I myself have a statistics background, and did the swedo review 6 years ago. But Buster was the one whom pointed out the tic data seemed stronger with pex. Latimer also says pex helps tics. There is a wealth of info on this forum, don't ignore it or counter always like "you" have all the answers, becuz the truth is all we have is our experience and these studies are still experimental, and these treatments are too. I hope you find help for your child and treatment that you feel is helpful. Really listening to many on this forum, ideas I first thought didn't make sense led me to find better care and insurance covered treatment for my child.

[Fixit]

 

 

It was recommended to me to treat with both ABX and IVIG for 6 months to a year to turn off the antibody factory.

If you are lucky and caught it early, ABX may be enough without IVIG or PEX.

If you diagnosed PANDAS later and the antibody factory has become part of your normal functioning/or malfunctioning

it is much harder to turn off and will take more treatment.

 

 

can i ask what type of doc recommended this...

how old is your child....and how long has your child had pit/pans

is age the reason for 6-12 months

aaaannndddd....

would that be monthly? at what does

does your doc think they can get the ins co to pay for this????????????

 

i love the concept ..makes sense......that is why i fear 1 or 2 ivigs...as it will leave my ds with some other weird.thing and if not..what about relapse several years later.....

the continueing care...and the reality of relapse..and getting docs and ins to realize and cover...are concerning

[EAMom]

Okay, these are my thoughts on PEX (or plasmapheresis) vs. IVIG for tics:

 

1) Dr. K. (in his podcast in helpful threads) did say he thought PEX was better for tics (but he also felt PEX should be followed with IVIG). Does anyone know why he says this, is it from this paper, or personal experience with treating ticky PANDAS kids? (But he also doesn't tend to use really high doses of antibiotics...see 2). And last year it seemed that Dr. Latimer was preferring PEX for lots of her cases, but now it seems many of her patients are getting IVIG (3-4 x high dose).

 

2) Lauren Johnson (as an example) seems to do well with IVIG for her tics, but she also had a couple of good months of high dose antibiotics (including Azith) and some pred (was it more than 5 days?). So maybe aggressive antibiotics PLUS IVIG works just fine for tics. The Swedo kids did not use really aggressive antibiotic regimes (a la Saving Sammy or 250mg/500mg/day Azith), but rather lower prophylactic doses (eg pen 250mg 2x daily).

 

3) re the Swedo study: Perhaps IVIG or PEX are equally good at getting tics down to a certain level, but maybe that last bit (eg to 6.8 on the tourette scale, whatever that means) is difficult to erradicate. So, since the PEX group was ticky-er to start, it was easier to see a significant improvement:

 

The plasma exchange

group showed significant improvements in tic severity over

placebo but the IVIG group did not, perhaps because

baseline ratings were highest in the plasma exchange group.

 

4) I agree with norcalmom that because the sample size of the groups in the IVIG and PEX studies were pretty small AND since the groups weren't identical), so it does make comparing the two and drawing conclusions that PEX is better (or not) a bit tricky.

 

5)

he like yourself has concluded that if you look at all of the studies on Pandas, which are not statistically not sound, no blind, not replicated,

 

Yup...not perfect studies, but it's all we've got!

Edited October 15, 2010 by EAMom

[Worried_Dad]

1) Dr. K. (in his podcast in helpful threads) did say he thought PEX was better for tics (but he also felt PEX should be followed with IVIG). Does anyone know why he says this, is it from this paper, or personal experience with treating ticky PANDAS kids? (But he also doesn't tend to use really high doses of antibiotics...see 2). And last year it seemed that Dr. Latimer was preferring PEX for lots of her cases, but now it seems many of her patients are getting IVIG (3-4 x high dose).

 

Yeah, Dr. K told us this as well: that PEX seems to be more effective for PANDAS kids primarily afflicted with tics, while IVIG is more effective for kids primarily afflicted with OCD. Not sure if this is based on his own experience, comparing notes with other clinicians, or on the studies already cited. When our son first became ill, he had massive chorea / tics and no recognizable OCD. But his next exacerbation led to an overnight explosion of OCD which dwarfed the tics in terms of incapacitating him. So by the time we saw Dr. K (post-exacerbation), OCD was our biggest concern.

 

So that's another maddening aspect of this illness. The symptoms morph from flare to flare. Tics may be the major issue today, but OCD or anorexia or rages may be the major issue after the next infection hits. Tough on the docs, and tougher on the kids and families!