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I just wanted to introduce myself. I have read a lot of good information on here over the course of time I've been lurking and I want to thank the people who contribute to this forum. I feel a bit guilty for lurking so long and not contributing but I just couldn't get the energy up to become involved. As many of you can relate, I'm sure, our family has really been through a difficult time and we have not quite yet gained strength back from this blow.

 

My dd is now just recently 7 years old. She developed normally, early everything almost. She is smart, hilarious usually, quirky and adored by most people from the outset. At age 3 she had glomerulonephritis, which is thought to be from autoimmune causes. This caused a severe and significant amount of RBC's in her urine for about 6-10 weeks. Like thick V8 juice, her urine was. No bacteria, and she never spilt any protein in her urine so she was just monitored. That eventually went away. Then at age 4 she developed hand tremors so was evaluated (MRI with no conclusion) for that. The hand tremors have continued to be there and have gotten worse with things to come.

 

August 12, 2007 my dd began to tell on herself insessantly, bizarre stuff that didn't even make sense. The next day or so, she started to tell on herself that she had 'said a bad word'. She did this 100's, maybe 1000's of times per day. Then within a few days that changed to her saying that her 'head says that she is going to kill me' (meaning, ME, her mom). Because of the phrasing of it the psychiatrists and psychologist first thought there was a rare child with schizophrenia. Eventually they diagnosed Atypical PDD-NOS.

 

...I remember one point thinking...'oh it's a good day, she hasn't said 'it' yet....that was after 5 minutes timing on the clock upon waking up'...but then she would say 'it'....and that was a good day. Most other days it was a good day if she said it 3 times every 5 minutes to me. These thoughts terrified her. I was not concerned that she was going to do it, no way, no how was she going to do something like that...which was one thing I couldn't get people to understand.

 

At this time my dd and I were living alone in a foreign country and didn't speak the language. We did not have internet at that time so I could not research. We went on months like this, with me almost completely losing it too. My poor dd completely changed. Certain aspects of her personality changed. Bizarre night time terrors and urinary issues did occur. She became depressed, suicidal thoughts came and went, good days came and went, bizarre and extremely violent public meltdowns like I have NEVER seen came and went...one time leaving us stranded at an (mind you- foreign) airport for 4 hours due to the bizarreness of her meltdown. We are a military family so there was some support, but not what one can get (I think) in one's own usual circumstances. She had many many hours of doc visits of various kinds. She had a sedated EEG, had an MRI (a second one), had chromosome tests, had adrenal gland testing, had thyroid testing, lead, anything anyone could think of...including putting our family under a microscope.

 

Personally, I am extremely anxious just retelling this bit of our story. Now we are getting settled back in the states and in the process of getting help for my dd. Our family is back together, (dh's recent deployment is over) and we are living in an area where we have nearby (4-5 hours away) family, besides our college aged kids (dd age 22 and ds age 20) in the same region.

 

In end of June 2007 I took my dd to the doc for fever and sore throat. The rapid was negative and it also cultured negative so no antibiotics were started. However her college aged brother had scarlet fever and at that time her brother lived at home (he left for college the first week of August- went back to the states)...and the change in my dd started august 12. April 2008 was the first time anyone did a strept titer and both were + for strept some time in the who knows when past....but obviously I am thinking it must have been back in June 2007 when I took her in for sore throat and fever, but for whatever reason both the rapid and culture tested neg.

 

I just looked it up and in case anyone is needing to know...her ASO was "HIGH" It says "Positive at 1:2 or 400 IU/ML" Normal value is Negative" Then her DNASE B was 240 with school age reference at 170 titer. That was I believe 8 months after the change in her. She started on Penicillian 250mg twice daily after the titer. She also takes an SSRI and Risperadol. I am not giving any suppliments at this time and besides a multivitamin never have.

 

She is getting a SPECT scan this month, I wanted to mention because someone recently posted about that. Her new pediatrician believes PANDAS is possible, as did her old one. Besides him, she is seeing a pediatrician in the Kansas City region who specializes in autoimmune disorders and has given conferences on PANDAS. That doctor's name is Carol Ann Ryser. We have been in contact with Dr. K in Chicago (via email only at this point) who states he is sure it is pandas.

 

But besides PANDAS I am worried what other autoimmune processes will be to come in the future, etc. I hate this medication and want her off of it asap, but that is not compatible with any sort of normal life at this time. School at this point is only possible about 2 and half days per week. We are hoping for someone to get to the bottom of this and get her the help she needs, obviously, like all of you wish for your own children.

 

Again, I wanted to just tell our story and say that I've been lurking. Please feel free to contact me if someone is going through something like this similiar. My heart goes out to all of you. And thank you for being my support, you guys didn't even realize it.

 

Amy

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Amy,

First just let me send you a great big ((((((HUG)))))). I can not imagine going through all of that in another country with no support. I am just so impressed that you have done as well as you have given the circumstances. IMHO, it sounds like an obvious case of PANDAS to me. Most of what you described could have been my PANDAS son in the beginning of his ordeal. My gosh for years we dealt with varying degrees of ocd and he took an SSRI for several years before we got the right treatment and have been able to wean him off. As for the titers, they are abnormal but that is common in PANDAS. Before we went to see Dr. Murphy my son's Anti-DNAse was 2,720 and his ASO was 1,040. I think that was what finally convinced my pediatrician that this was true PANDAS and outside her scope. The light I see for you is that it seems you have finally found a physician(s) who are on top of this and will offer appropriate, and aggressive treatment. You can hold on to that hope, when things seem hard. It seems for most, that just finding someone you can work with is often one of the most difficult parts of this journey. Many people here (myself included) have been in similair circumstances and have brought their children through it and are now seeing the rewards of their hard work. Try to hold on and know that this will get better. You are doing a great job of helping your daughter. She is lucky to have you for a mother. Be kind to yourself!

 

Dedee

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Hi Amy,

 

Do you think the Penicillin is helping? How long has your dd been on it?

 

I recently posted an article about Amoxicillin failure in strep throat (amoxicillin is a stronger version of pen) here's the link: http://www.latitudes.org/forums/index.php?showtopic=3888 .

 

If you don't think there is much improvement on the pen (and it's been a couple of months or more) you might consider Azithromycin (or at least a 1 mo. trial). Azithromycin is what really helped our dd after 5 mo. of PANDAS/insane psychotic behavior (including anorexia nervosa). She didn't respond to Amoxicillin (2mo.) or a Cephalosporin (10 days, stronger version of Kelfex). The first antibiotic she was on, Augmentin (10 days), did seem to help, but not as completely as the Azithromycin. Also, the Azithromycin cleared her assymptomatic strep carrier younger sister of strep (Augmentin didn't work on her sister). My dd is quite normal now. I would consider her to be in remission. I think the Azithromycin works for dd b/c it gets intracellular strep. It is also anti-inflammatory and immunomodulating (cutting down on the abnormal autoimmune response). We saw an improvement in mood after about 3 days; after 10-14 days OCD/eating was better; after 1 mo. she was about 98% but still had some tics, "edginess"; after 2 mo. she was just about 100%. We also did Advil (200mg every morning for about 2mo.) with the Azithromycin. We think the Advil helped a bit as well (anti-inflammatory effects on her basal ganglia).

 

Dd is about 50 pounds and still gets 250mg/day Azithromycin prophylactically. The pediatric rheumatologist said to continue this for 1 year...and then we'll decide on the then step. For now she's doing great so we don't want to make any changes. She is also on a low dose of prozac (10mg/day), multi-vit, probiotic. (The prozac seems to be helping the mild social anxiety she had b-4 pandas, which is the main reason she is still on it. Also, she is doing well enough that we don't want to change anything for awhile.)

 

Anyway, I just thought I'd mention the Azithromycin in case you haven't noticed a big improvement on the Pennicillin. Not everyone responds to it but it has helped several people who post on this board.

 

I haven't heard of Carol Ann Ryser before but it is a good sign that she specializes in autoimmune dz and is PANDAS aware. Let us know how things go. Do be careful of the psych. drugs as I have read that pandas kids may be more sensitive to SSRI's (that was the case with us...we had a not so fun time with serotonin syndrome and Lexapro). It sometimes end up being a battle sorting how much weird behavior is from the PANDAS and how much is from side effects of psych. drugs (check out worried dad's Beware of Psych. Drugs post.)

 

Sorry for such a long post! Hang in there...I know things will get better.

EAmom

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Amy,

First just let me send you a great big ((((((HUG)))))). I can not imagine going through all of that in another country with no support. I am just so impressed that you have done as well as you have given the circumstances. IMHO, it sounds like an obvious case of PANDAS to me. Most of what you described could have been my PANDAS son in the beginning of his ordeal. My gosh for years we dealt with varying degrees of ocd and he took an SSRI for several years before we got the right treatment and have been able to wean him off. As for the titers, they are abnormal but that is common in PANDAS. Before we went to see Dr. Murphy my son's Anti-DNAse was 2,720 and his ASO was 1,040. I think that was what finally convinced my pediatrician that this was true PANDAS and outside her scope. The light I see for you is that it seems you have finally found a physician(s) who are on top of this and will offer appropriate, and aggressive treatment. You can hold on to that hope, when things seem hard. It seems for most, that just finding someone you can work with is often one of the most difficult parts of this journey. Many people here (myself included) have been in similair circumstances and have brought their children through it and are now seeing the rewards of their hard work. Try to hold on and know that this will get better. You are doing a great job of helping your daughter. She is lucky to have you for a mother. Be kind to yourself!

 

Dedee

 

Thank you Dedee for your reply! This has been one heck of a journey, as it sounds like you and others here are all too familiar with. Thank you again for the reply and (((hugs))) back to you.

Regards,

amy s

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Hi Amy,

 

Do you think the Penicillin is helping? How long has your dd been on it?

 

I recently posted an article about Amoxicillin failure in strep throat (amoxicillin is a stronger version of pen) here's the link: http://www.latitudes.org/forums/index.php?showtopic=3888 .

 

If you don't think there is much improvement on the pen (and it's been a couple of months or more) you might consider Azithromycin (or at least a 1 mo. trial). Azithromycin is what really helped our dd after 5 mo. of PANDAS/insane psychotic behavior (including anorexia nervosa). She didn't respond to Amoxicillin (2mo.) or a Cephalosporin (10 days, stronger version of Kelfex). The first antibiotic she was on, Augmentin (10 days), did seem to help, but not as completely as the Azithromycin. Also, the Azithromycin cleared her assymptomatic strep carrier younger sister of strep (Augmentin didn't work on her sister). My dd is quite normal now. I would consider her to be in remission. I think the Azithromycin works for dd b/c it gets intracellular strep. It is also anti-inflammatory and immunomodulating (cutting down on the abnormal autoimmune response). We saw an improvement in mood after about 3 days; after 10-14 days OCD/eating was better; after 1 mo. she was about 98% but still had some tics, "edginess"; after 2 mo. she was just about 100%. We also did Advil (200mg every morning for about 2mo.) with the Azithromycin. We think the Advil helped a bit as well (anti-inflammatory effects on her basal ganglia).

 

Dd is about 50 pounds and still gets 250mg/day Azithromycin prophylactically. The pediatric rheumatologist said to continue this for 1 year...and then we'll decide on the then step. For now she's doing great so we don't want to make any changes. She is also on a low dose of prozac (10mg/day), multi-vit, probiotic. (The prozac seems to be helping the mild social anxiety she had b-4 pandas, which is the main reason she is still on it. Also, she is doing well enough that we don't want to change anything for awhile.)

 

Anyway, I just thought I'd mention the Azithromycin in case you haven't noticed a big improvement on the Pennicillin. Not everyone responds to it but it has helped several people who post on this board.

 

I haven't heard of Carol Ann Ryser before but it is a good sign that she specializes in autoimmune dz and is PANDAS aware. Let us know how things go. Do be careful of the psych. drugs as I have read that pandas kids may be more sensitive to SSRI's (that was the case with us...we had a not so fun time with serotonin syndrome and Lexapro). It sometimes end up being a battle sorting how much weird behavior is from the PANDAS and how much is from side effects of psych. drugs (check out worried dad's Beware of Psych. Drugs post.)

 

Sorry for such a long post! Hang in there...I know things will get better.

EAmom

 

EAmom,

 

Thanks for the reply and the information. No, I don't think that the PCN is working as far as helping any symptoms. I am very heartened to hear that your dd is in remission! I am worried about serotonin syndrome very much and want her off these meds so bad. Risperadol is causing extreme weight gain and there is concern of diabetes with that med long term and who knows what the Zoloft is causing. I will research the Azithromycin as that sounds like it's worth a try. Dd is supposed to see a ped rheumatologist, infectious disease, and neurologist (another one) soon but I still don't know when as we are waiting for approval. We got the referral to see him, but are waiting on the Rheum to say 'yes' he'll see her. We have wasted so much time that if someone in our path doesn't know about PANDAS or believe in it or whatever, then I am not bothering with them and just going to move on to the next route.

 

So far we are very pleased with Dr. Ryser as she did about a 3 and half hour history and exam and ordered a LOT of tests. No plans are in place until all the results come back but she believes that she CAN help us, which is better than any of the multitude of docs have done. Oh, they all ordered a lot of tests too but they still just kept wanting to push us to someone else and looked at us with a blank stare.

 

By chance, do you or anyone else reading this, have any 'peer reviewed' research papers regarding the effectiveness of Azithromycin with PANDAS? You know that helps when you hand carry stuff like that in the office. Thanks again for the response and the good info!!!

Regards,

amy s

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Welcome amy,

 

I feel so much for you. It is so hard and when one feels like this is taking sooooo long to fix, it gets to be so draining. I'm so sorry you and your family have been through this, and hope this is the beginning to a brand new dd.

 

Keep us posted

 

God Bless,

CP

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Hi Amy - I am a friend of EaMom. Our children contracted PANDAS in the same area of town.

 

There are many references to the use of Azithromycin (Susan Swedo, Barbara Coffey) have referred to it in studies. Don't know how soon your apptmt. is - but I can dig the studies up for you if you need them.

 

From many conversations I've had with M.D.'s across the U.S. and families with PANDAS - penicillin don't cut it! You gotta try as Augmentin or Azithromycin. For the record, children with PANDAS-induced tics do not seem to improve as rapidly and steadly on these abs as do the PANDAS kids with psychiatric symptoms - don't know why.

 

I will email you privately as well. EAmom knows what she's talking about, by the way. We have worked thru this debate with many docs - I'll give you their info off-line.

 

Hang in there. Remember - you know this disease better than your doctors do. Not many have seen it or have the wherewithall to figure it out....but we'll help you!!!! Take care, diana

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Hi amy. I am glad you finally came out to post! You will get lots of great help here. It had to have been a nightmare to be abroad with your daughter going through this! We did do pen vk for a few months. It did not keep the PANDAS episodes away. Maybe it is not strong enough. Then we did augmentin. It also did not work for long. Now we are on omnicef which is a generic for cefdinir which is a Cephalosporin.

 

Diana if you or Buster can post the info on the use of azith it would be great. What do you think about Cephalosporin like cefdinir. It has helped my sons OCD, like his urgency to urinate. Do you think if it is working to hold off on the big antibiotic guns like azith or to give the azith a try now? I could take the research to his ped, she has not even tried to follow the PANDAS research and leaves it up to the specialists. However, I have not even found a immunologist specialist here wanting to use azith.

 

Michele

Hi Amy - I am a friend of EaMom. Our children contracted PANDAS in the same area of town.

 

There are many references to the use of Azithromycin (Susan Swedo, Barbara Coffey) have referred to it in studies. Don't know how soon your apptmt. is - but I can dig the studies up for you if you need them.

 

From many conversations I've had with M.D.'s across the U.S. and families with PANDAS - penicillin don't cut it! You gotta try as Augmentin or Azithromycin. For the record, children with PANDAS-induced tics do not seem to improve as rapidly and steadly on these abs as do the PANDAS kids with psychiatric symptoms - don't know why.

 

I will email you privately as well. EAmom knows what she's talking about, by the way. We have worked thru this debate with many docs - I'll give you their info off-line.

 

Hang in there. Remember - you know this disease better than your doctors do. Not many have seen it or have the wherewithall to figure it out....but we'll help you!!!! Take care, diana

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Thanks everyone for the warm welcome.

 

There's of course more to the story. She does have a odd movement that she does which has been going on for a year or so. I don't know if it is a complex tic or a compulsion. It is where she has this lick of her hand and then she has to touch it to several places on her body. The psychiatrist thinks it is part of her OCD. She doesn't know why she does it except to say that she thinks it has something to do with hair in her nose. I know that sounds weird. I am not at all familiar with tics and for some reason cannot wrap my head around what they are.

 

Here are some of her other OCD thoughts: besides the thought that she is going to kill me (through therapy we were able to change the word-age of this to 'silly thought'- it got too hard for me to hear over and over again and she easily was able change how she tattled as long as I knew what she meant by it.

 

she thinks she sticks her middle finger out (she does not and has never)

thinks she says 'bad words', she has not

thinks she smiles when she hears someones belly grumble (she does not, has never)

thinks she smiles when we pass a cemetery (she does not, has never)

thinks she smiles when someone coughs.

 

She will argue to the end that she did these things, even if you know for a fact she didn't. She is very upset by them all. I can wake her up from sound sleep..."honey, good morning, time to rise and shine" and she will sit straight up and say "mom, I just said a bad word". No amount of convincing works.

 

Our flight (very long) from Europe back to the states was terrible because every single time that someone on that plane coughed, she thought she smiled and she HAD to tell me so. Do you know how many 'coughs' there are on a full plane ride? She heard it even through head phones, and had to say it to me every single time...even if she heard someone cough..she'd say "mom, I just smiled when they coughed" and if someone else coughed in the middle of that sentence she had to say it again immediately after finishing the first sentence. That was a long flight.

 

Anyway, thanks for all the support and welcomes. I'm really glad I found this place.

Regards,

amy s

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Here's the Swedo with pen and Azithormycin study (both drugs work in the study)...

http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

 

I don't know why Pen. doesn't seem to work for most of the folks who post on this board yet it worked in the above study. Maybe if PANDAS symptoms are active (perhaps with intracellular strep, or a very inflamed basal ganglia) it doesn't get help much(in severe cases). But, perhaps Pen is effective at preventing a new strep infection if a child has had PANDAS episodes in the past but is currently fine.

 

Pen. didn't work in the an earlier study (where they just looked at Pen., not Azith.) but I think Swedo later figured out that was a compliance problem (kids weren't actually taking the liquid medicine).

 

Some kids also do well on Cephalosporins (eg Keflex) but that didn't help my dd. There is at least one poster who's child did better on Keflex but not Azithromycin. So, Azithormycin doesn't help everyone. I'll try to post more on Azithormycin later (or get Buster to).

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To date has there ever been a study saying IVIG or azith is the best treatment for PANDAS? I've seen the Sweedo study and it says Azith or Pen vk (not one over the other). Dr's here in Ohio have something against azith, some mid western resistance has been shown I guess. If these studies were publicized then Dr's would be more informed. Why isn't this happening? Is there any current research being done on the treatment of PANDAS, any studies under way? How many actual cases of IVIG working have been documented?

Here's the Swedo with pen and Azithormycin study (both drugs work in the study)...

http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

 

I don't know why Pen. doesn't seem to work for most of the folks who post on this board yet it worked in the above study. Maybe if PANDAS symptoms are active (perhaps with intracellular strep, or a very inflamed basal ganglia) it doesn't get help much(in severe cases). But, perhaps Pen is effective at preventing a new strep infection if a child has had PANDAS episodes in the past but is currently fine.

 

Pen. didn't work in the an earlier study (where they just looked at Pen., not Azith.) but I think Swedo later figured out that was a compliance problem (kids weren't actually taking the liquid medicine).

 

Some kids also do well on Cephalosporins (eg Keflex) but that didn't help my dd. There is at least one poster who's child did better on Keflex but not Azithromycin. So, Azithormycin doesn't help everyone. I'll try to post more on Azithormycin later (or get Buster to).

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Hi Amy - I am a friend of EaMom. Our children contracted PANDAS in the same area of town.

 

There are many references to the use of Azithromycin (Susan Swedo, Barbara Coffey) have referred to it in studies. Don't know how soon your apptmt. is - but I can dig the studies up for you if you need them.

 

From many conversations I've had with M.D.'s across the U.S. and families with PANDAS - penicillin don't cut it! You gotta try as Augmentin or Azithromycin. For the record, children with PANDAS-induced tics do not seem to improve as rapidly and steadly on these abs as do the PANDAS kids with psychiatric symptoms - don't know why.

 

I will email you privately as well. EAmom knows what she's talking about, by the way. We have worked thru this debate with many docs - I'll give you their info off-line.

 

Hang in there. Remember - you know this disease better than your doctors do. Not many have seen it or have the wherewithall to figure it out....but we'll help you!!!! Take care, diana

 

 

Diana,

 

Do you have any references to research/articles that cite children with PANDAS induced tics do not improve as rapidly and steady on antibiotics as PANDAS with psychiatric symptoms? I would be really interested in this and it would be helpful info to provide to the doctor. Thanks, Betty

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To date has there ever been a study saying IVIG or azith is the best treatment for PANDAS?

 

The best study that I've found about IVIG was Perlmutter's 1999 Lancet report: http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf where there was a demonstrated improvement of both IVIG and Plasma Exchange over Placebo in the decline of OCD symptoms. The followup actually offered IVIG to those who had placebo and again these had good results. There was a followup study on IVIG for OCD for non-PANDAS kids by Orvidas and Slattery (2001) that showed no improvement for non-PANDAS kids. I sure wish they had just repeated Perlmutter's test.

 

Incredibly, despite this begging for a followup experiment, there has been no followup study to test efficacy of IVIG on PANDAS vs non-PANDAS cases. Indeed the current NIMH site warns that IVIG should only be considered for severe cases and if anything recommends against it till there is more research (but hasn't funded any) -- grr.

 

There also hasn't been a followup to Swedo's azith vs pen study -- which seems incredible given the efficacy of both pen and azith. Swedo even comments that they had expected azithromycin to be a control in her study and hadn't expected it to work as well as the penicillin. There are several studies on certain strains of strep being able to go intracellular (i.e, where penicillin can't reach). Kaplan wrote an excellent paper on the efficacy of macrolides on getting intracellular strep in 2005 http://www.journals.uchicago.edu/doi/pdf/10.1086/508773.

 

At the same time there are numerous papers on resistance by strep (GABHS) to macrolides. For example,

http://www.journals.uchicago.edu/doi/pdf/10.1086/432480

and

http://www.journals.uchicago.edu/doi/abs/10.1086/320745

 

So it is a bit of a hit/miss. If penicillin can reach the strep, then it remains the preferred bactericidal option.

 

Now as to why is any of this working at all... well, that's really what's been on my mind for the last 2 months. Plasma Exchange removes antibodies. IVIG puts in antibodies. Penicillin is bactericidal to fast growing bacteria. Azithromycin is bacteriostatic to slow growing bacteria. Why should all of these show some efficacy (anecdotally or in clinical trials).

 

My best explanation is that PANDAS kids create an antibody with an idiotype for GlcNAc (see Kirvan 2006: http://www.csus.edu/bios/faculty/Kirvan/Ki...JNI_article.pdf ). I think most people suppress this antibody through either a T cell regulator or a B cell regulator (see http://content.jci.org/articles/view/37099).

 

The IVIG theory was about the introduction of an IgG antibody that was attacking the strep http://iai.asm.org/cgi/content/full/66/5/2279 . However, if so, why would also plasmapheresis work?

 

What seems to make the most sense is that the IgG is bringing in an anti-antibody (call it Fred) that attacks the GlcNAc idiotype antibody and prevents it from replicating. Thus IVIG works because it adds the regulatory antibody. Plasmapheresis works because it removes a bunch of the bad antibody. The exacerbations happen in PANDAS kids because the strep is active, the antibody replicates, attacks the strep (and neuronal tissue) and then declines in the blood stream as the strep is wiped out. I think azithromycin works by attacking any intracellular strep http://www.journals.uchicago.edu/doi/pdf/10.1086/508773 and also shifting the immune response (Th2 to Th1) thereby suppressing the replication of the antibody to the GlcNAc. I think this is also why prednisone seems to work (a strong immunosuppresant). Of course this is all just a theory.

 

As to why amoxicillin works, I think it just gets rid of the strep. After a period of time, the body stops replicating the antibody and the immune system settles down (we hope). In my dd case, I think we needed additional help to supress the immune response and reduce inflammation so azith worked better -- but without a clincial trial it is just anecdotal evidence.

 

 

Best regards,

 

Buster

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