Dr. K appt/WHITE PAPER

[GraceUnderPressure]

Just wanna be clear that Dr. K believes abx are the first course of treatment, without a doubt. It's just that he thinks you should go on/off abx to delay becoming an antibiotic "non-responder" as long as possible, and then you should go for IVIG. He instructed us to watch our son and put him back on abx at his next exacerbation, and as long as this keeps working, this is fine with him.

Oh! So Dr. K was saying that he is concerned about, & trying to avoid, the development of resistant bugs in our kids? That makes more sense to me now...

[KeithandElizabeth]

We consulted with Dr. K two times on behalf of both of my children and I have the utmost respect for him and all that he had done for all of these children who have suffered so much!

 

As in all illnesses, there is a learning curve and I think that we are at the forefront of that curve with PANDAS.

 

My biggest piece of advice to all new families and to all families who are still suffering is to check for lyme via IGENEX. I so wish we had done that at the beginning and it is so non-invasive compared to IVIG and PEX. Lyme, strep, mycoplasma and bartonella are all showing up in MANY of these children suffering from these neurological/psychological disorders. I think it is vital to rid the body of the chronic infections in order to heal our children and I do believe that if a child is suffering from lyme or mycoplasma and even just bartonella, the typical "PANDAS" treatment may not be the full solution.

 

 

Elizabeth

[MomWithOCDSon]

T.MOm....good point about the anti-inflammatory effects of antibiotics. I think there are 3 (or a combination of) possible benefits of long term antibiotics:

1) anti-inflammatory effects

2) prevent a NEW strep infection from taking place (just as with ARF)

3) treat lingering strep "hiding out" long term in the body (intracellular--sinuses, nose, wherever)...how long can strep hide out? It's not really known? Years? And bear in mind that PANDAs kids don't have a "normal" immune system so perhaps their immune systems aren't good at killing off every little last bit of strep...instead of attacking the strep, their immune system reacts by attacking their basal ganglia

 

Thanks TMom and EAMom. And not to be a broken record, but there IS potentially a fourth benefit to long-term antibiotics, at least of a certain class. There is ongoing research concerning the B-lactam class of antibiotics (of which Augmentin is a member) and their glutamate modulating characteristics. Since glutamate is now thought to be heavily involved in OCD, it seems viable that those PANDAS kids with OCD behavioral manifestations may be benefitting from this particular quality when taking Augmentin.

[ajcire]

This really almost gave me a little bit of peace. While I understand what people are saying as to who are we to say that 90% is ok instead of 100% but when I look at my son who is affected mildly as of now, it does not impact school, social or family and I have decided that 90% is just fine for my son. I don't really think any of us are 100% There will always be something. We all have issues but if it's not impacting the quality of our life.... and I know you might say who am I to judge if it is impacting my son but at the same time who am I to say it is. He seems happy, has friends, is succeeding in school. He doesn't even know he has an eye blink tic. The throat clearing he does very seldemly doesn't bother him and he doesn't attribute his moods to being a problem... and while I feel confident that when he gets a bit irrational on things that it is pandas coming into play (I can tell the regular 8 year old nonsense versus not with him) I don't feel it warrants other treatment at the moment that might or might not alter his system in a way that might or might not make him better or worse. We have our moments with him and we had a very rough patch at one point several years ago but still nothing compared to some what so many others have gone through.... he was on antibiotics which he has now no longer been on for almost a year.

 

I think that everyone handles different things differently... One child might not be bothered at all by a tic and another child might be devastated by a tic. I suspect that when Dr. K asks if it's interfering in those 3 categories that he is asking for how it is affecting that specific child in those 3 areas... some might need to go farther in treatment and others might not even with the same symptom.

 

I am confused... There are more than 2 people on the boards who have seen Dr. K who now say they have lyme.. and some I believe who spoke with him after the lyme diagnosis... Something is being missed along the way.. either he is questioning some of those lyme diagnosis to not be accurate or people aren't going back and letting him know after they get it?

 

 

 

 

Another interesting thing he said is that PANDAS patients should be evaluated on functioning in three ways: family, school, and social life. If one of those gets very debilitated, then it is time to advance the treatment to the next level. In our case, we will try abx again first, and if this is not sufficient, we will go for IVIG.

 

 

this statement kinda concerns me....as we are the cusp of all this learning...

and who is to deem what is acceptable for the childs future life other than 100% recovery....

that someone may say you are 90% and that is good enough.....i have a hard time with anyone making that decision for another human being...

 

i am not saying that that was what exactly intended by the statement...but as i've said before...who can say that person who has tics can drive a car they are functioning...but they have continuous facial tics...that is ok...what kind of job can they expect..as humans are judgemental by nature...who is to say what a person can live with that and not feel bad about themselvs, when they know that maybe if they had the opportunity to try ivig or pex that they might have FULL recovery.....

yet..lets go to a topic that was a little touchy... a woman has a mastecomy and gets recontructive surgery that is seen by no one but her and who she chooses....

 

 

sorry ....just being a little defensive!!!!!

[thereishope]

My son went quite awhile without being on antibiotics and staying in remission and strep free. Did Dr K give you any protocal to follow to help you deter another strep infection or another exacerbation?

 

My son did have t and a surgery. During the time of no abs and being in remission, he remained on Omega 3's, got a multivitamin and I gave Ibuprofen if I even thought anything seemed off. I also did get healthier with my family and no vaccinations. I also suggest contacting the school and getting calls when strep is in the class. My kids went for strep tests even if tehy were exposed since they are all asymptomatic. Often, they would give an antibiotic when wating for culture results.

 

Even while my son was well into remission, we did finally come to an agreement with a ped to add a low dose prophylactic antibiotic during the school year (HUGE deal in our state/city) and we now give a probiotic as well.

 

 

 

 

Just wanna be clear that Dr. K believes abx are the first course of treatment, without a doubt. It's just that he thinks you should go on/off abx to delay becoming an antibiotic "non-responder" as long as possible, and then you should go for IVIG. He instructed us to watch our son and put him back on abx at his next exacerbation, and as long as this keeps working, this is fine with him.

[danddd]

there is so much to think about, each kid really has a different path of recovery, with one or multiple causes and treatments. one thing i always think about is what my expectations are of the docs we see, and my expectations for each treatment. in my daughters case, after a year and a half of suffering and failure of psych meds and short term abx., i was not looking for a "cure", but just a bit of relief for her. we saw dr.k because we could not find any one local to help. so, my expectation was to hopefully get ivig, and some relief. i got it, and am so grateful. she is not 100%, or even 80%, but she is not violent and in a "danger zone". so i guess in trying to understand all this, we also have to factor in what the patient (parent) is expecting.

[EAMom]

there is so much to think about, each kid really has a different path of recovery, with one or multiple causes and treatments. one thing i always think about is what my expectations are of the docs we see, and my expectations for each treatment. in my daughters case, after a year and a half of suffering and failure of psych meds and short term abx., i was not looking for a "cure", but just a bit of relief for her. we saw dr.k because we could not find any one local to help. so, my expectation was to hopefully get ivig, and some relief. i got it, and am so grateful. she is not 100%, or even 80%, but she is not violent and in a "danger zone". so i guess in trying to understand all this, we also have to factor in what the patient (parent) is expecting.

 

That is another good point...if a child were in a research study and was deemed to be 80% improved, that treatment (for OCD) would be considered to be VERY effective.

 

However, as a parent who had a child at 0% (nurse discussing long term in-patient psychiatric care, hospitalized for anorexia nervosa, sucidal) certainly 80% (able to attend school, maintaining/gaining weight, yet still some symptoms remaining) at least initially, sounds like a wonderful thing. But, now that we're not in a crisis mode (and haven't been for quite a while), even at 90-95%, I'm still searching for what will get my child to 100% (and keep her there). Perhaps that is the difference between a doctor (or researcher) and a parent. One may consider 80% to be wonderful, the other (who lives with and loves the child) may have different hopes and expectations.

[Worried_Dad]

Really don't mean to belabor the point... but in our case, HD IVIG was not anti-inflammatory in a lasting way. Our son's worst exacerbation occurred after IVIG round 1. All 3 rounds were administered by Dr. K in Chicago.

 

So while this might be the theory - HD IVIG "resetting the immune system" to eliminate production of the offending autoantibodies - it doesn't work every time for every PANDAS child. It unquestionably does work sometime: there are parents on this forum who have joyfully reported full remission after just 1 IVIG. That's awesome. But, for us (and others on this forum), 1 round (or 2, or 3) didn't do the trick fully or permanently.

 

Again, there are so many factors at play here. In our case, we strongly suspect at least one other member of our family is a strep carrier and kept re-exposing our son. But that's a pretty good reason to be flexible in regard to longer-term abx, I think.

 

 

Regarding T.Mom's comment. .. . Dr. K did mention the anti-inflammatory nature of abx, and that that MAY be the factor that helps the kids while they are on abx, and that doctors/researchers don't really know yet. So high-dose IVIG is also anti-inflammatory, in a lasting way, right?

[Phasmid]

Very informative. Thanks for posting this. Will be hoping that your child does well without long term antibiotics. Funny- I have, myself, the gut feeling that it is best not to keep on prophylactic antibiotics, but treat infections immediately with 30 days of antibiotic then go off. That is what I have done with my son.

 

 

[EAMom]

Very informative. Thanks for posting this. Will be hoping that your child does well without long term antibiotics. Funny- I have, myself, the gut feeling that it is best not to keep on prophylactic antibiotics, but treat infections immediately with 30 days of antibiotic then go off. That is what I have done with my son.

 

Other things to consider:

1) exposure (are there siblings that bring home strep often) vs an only child that is home schooled

2) does the child relapse immediately when you go off abs?

3) how severe are your child's symptoms (some tics/mild ocd? or unable to function/attend school/eat/needs to be in mental institution)

 

For, us, our dd has had increased symptoms when we've tried to cut back on abs (decrease to 125mg/day), so going off wasn't even an option. The same thing happened to Saving Sammy during his first year, when they tried to cut back on Augmentin XR.

 

Also, we have a sibling who is a strep carrier (gets strep without symptoms)...so if there is lots of strep going around school we would be in a countinous exacerbation/exposure.

 

And if a child "recovers" well (and quickly) each time he/she gets strep (and symtpoms are "manageable") and then goes on 30 days of abs, that is one thing...but many parents find recovery after exacerbations long and difficult, so they understandably wouldn't be in a rush to go through that again.

 

And, also, don't forget that many parents cannot afford IVIG (even once), esp. if their insurance doesn't cover it.

[thereishope]

Exactly. In our case, I have 3 children that do not get symptoms of strep. So, the only way I know if one of my non-PANDAS kids need to get swabbed is if someone in their class has strep or if they infect their PANDAS sibling. If the latter happens, well, we're already in an exacerbation and the damage has been done.

 

Also, in our case, my PANDAS son has already had 3 assaults on his brain. Who knows how many more it can handle

 

Finally, with my son, exacerbation #2 included wanting to do self harm and no eating amongst so much more. He was non-functioning. The older he gets, the more I would worry he would actually follow through on self harm threats if they should happen again. Also, in #3 we had the residual OCD. Luckily, we overcame the residual but what if it becomes even more ingrained if it happens again....

 

 

Other things to consider:

1) exposure (are there siblings that bring home strep often) vs an only child that is home schooled

2) does the child relapse immediately when you go off abs?

3) how severe are your child's symptoms (some tics/mild ocd? or unable to function/attend school/eat/needs to be in mental institution)

 

[lyme_mom]

there is so much to think about, each kid really has a different path of recovery, with one or multiple causes and treatments. one thing i always think about is what my expectations are of the docs we see, and my expectations for each treatment. in my daughters case, after a year and a half of suffering and failure of psych meds and short term abx., i was not looking for a "cure", but just a bit of relief for her. we saw dr.k because we could not find any one local to help. so, my expectation was to hopefully get ivig, and some relief. i got it, and am so grateful. she is not 100%, or even 80%, but she is not violent and in a "danger zone". so i guess in trying to understand all this, we also have to factor in what the patient (parent) is expecting.

I have so much empathy for all you parents struggling with this everyday b/c we went through something similar when my kids were sick with lyme. Any child who has remaining symptoms and who is on a maintenance dose of antibiotics may have other infections at work. It is worth investigating b/c an antibiotic, even a low dose, could lessen lyme symptoms, for example, but not get rid of lyme (hence a child at 80 percent, not 100 percent). This is true with other infections like mycoplasma, bartonella, babesia etc. (for example azithro has some effect against babesia but it won't get rid of it alone). Shooting for 100 percent is a good idea b/c you might find another "cause" of the symptoms and reach a higher level of health. This is how they treat lyme and the coinfections. A child who has remaining symptoms in the lyme world is suspected of having a lingering infection and treatment continues and is adjusted based on WHAT those symptoms are. Does that make sense? I would see a llmd for an opinion if your child is not yet at 100 percent and you have been working on this a while. You have nothing to lose except the cost of the appointment and any tests.

[3boysmom]

Other things to consider:

1) exposure (are there siblings that bring home strep often) vs an only child that is home schooled

2) does the child relapse immediately when you go off abs?

3) how severe are your child's symptoms (some tics/mild ocd? or unable to function/attend school/eat/needs to be in mental institution)

 

For, us, our dd has had increased symptoms when we've tried to cut back on abs (decrease to 125mg/day), so going off wasn't even an option. The same thing happened to Saving Sammy during his first year, when they tried to cut back on Augmentin XR.

 

Also, we have a sibling who is a strep carrier (gets strep without symptoms)...so if there is lots of strep going around school we would be in a countinous exacerbation/exposure.

 

And if a child "recovers" well (and quickly) each time he/she gets strep (and symtpoms are "manageable") and then goes on 30 days of abs, that is one thing...but many parents find recovery after exacerbations long and difficult, so they understandably wouldn't be in a rush to go through that again.

 

And, also, don't forget that many parents cannot afford IVIG (even once), esp. if their insurance doesn't cover it.

 

 

Exactly. In our case, I have 3 children that do not get symptoms of strep. So, the only way I know if one of my non-PANDAS kids need to get swabbed is if someone in their class has strep or if they infect their PANDAS sibling. If the latter happens, well, we're already in an exacerbation and the damage has been done.

 

Also, in our case, my PANDAS son has already had 3 assaults on his brain. Who knows how many more it can handle

 

Finally, with my son, exacerbation #2 included wanting to do self harm and no eating amongst so much more. He was non-functioning. The older he gets, the more I would worry he would actually follow through on self harm threats if they should happen again. Also, in #3 we had the residual OCD. Luckily, we overcame the residual but what if it becomes even more ingrained if it happens again....

 

 

Other things to consider:

1) exposure (are there siblings that bring home strep often) vs an only child that is home schooled

2) does the child relapse immediately when you go off abs?

3) how severe are your child's symptoms (some tics/mild ocd? or unable to function/attend school/eat/needs to be in mental institution)

 

 

 

EAmom and Vicki...we are in the exact situation.

 

1) sibblings are carriers

2) symptoms come back as soon as we lower Augmentin

 

I am nervous that the White Paper will prevent us from getting antibiotics. I do not want to wait until he is "bad off" enough to pursue IVIG, he has been doing well on Augmentin.

 

Also, Dr. K sounds like a wonderful person, however, who really knows how all of our children are responding to different treatment!!!! Has anyone ever contacted the families of the diagnosed children and got any consensus on how our children are responding to the different treatments? Maybe so many of us have had fairly good recovery with the antibiotics that we have not needed to contact Dr. K. As for us we knew that IVIG was the direction he believed in, so we went with a Dr. with the long term antibiotics route to try first and have not needed (knock on wood) to pursue IVIG.

 

Also, as far as being asymptomatic....all 3 of our boys are asymptomatic to strep and we just got the 2 non PANDAS boys titers run. One has almost 500 and the other almost 800! The youngest has been swabbed and (rapid & 72 hour) ALWAYS negative. Last week the tonsils and adenoids came out and were cultured...positive for strep.

 

Given 14 days of Augmentin and the head and vocal tic as well as the hyper behavior...gone! Never a single sign of strep. I am curious what all of their Cunninghams tests will say. Had no idea that the youngest sons tics could be a sign of this illness until Dr. L asked. I mean he never had strep….I thought….the positive culture on the removed tonsils is the only place that a positive strep was ever detected. So, thank goodness we kept (and still is)the PANDAS son on antibiotics.

Edited December 5, 2010 by 3boysmom

[3boysmom]

Other things to consider:

1) exposure (are there siblings that bring home strep often) vs an only child that is home schooled

2) does the child relapse immediately when you go off abs?

3) how severe are your child's symptoms (some tics/mild ocd? or unable to function/attend school/eat/needs to be in mental institution)

 

For, us, our dd has had increased symptoms when we've tried to cut back on abs (decrease to 125mg/day), so going off wasn't even an option. The same thing happened to Saving Sammy during his first year, when they tried to cut back on Augmentin XR.

 

Also, we have a sibling who is a strep carrier (gets strep without symptoms)...so if there is lots of strep going around school we would be in a countinous exacerbation/exposure.

 

And if a child "recovers" well (and quickly) each time he/she gets strep (and symtpoms are "manageable") and then goes on 30 days of abs, that is one thing...but many parents find recovery after exacerbations long and difficult, so they understandably wouldn't be in a rush to go through that again.

 

And, also, don't forget that many parents cannot afford IVIG (even once), esp. if their insurance doesn't cover it.

 

 

Exactly. In our case, I have 3 children that do not get symptoms of strep. So, the only way I know if one of my non-PANDAS kids need to get swabbed is if someone in their class has strep or if they infect their PANDAS sibling. If the latter happens, well, we're already in an exacerbation and the damage has been done.

 

Also, in our case, my PANDAS son has already had 3 assaults on his brain. Who knows how many more it can handle

 

Finally, with my son, exacerbation #2 included wanting to do self harm and no eating amongst so much more. He was non-functioning. The older he gets, the more I would worry he would actually follow through on self harm threats if they should happen again. Also, in #3 we had the residual OCD. Luckily, we overcame the residual but what if it becomes even more ingrained if it happens again....

 

 

Other things to consider:

1) exposure (are there siblings that bring home strep often) vs an only child that is home schooled

2) does the child relapse immediately when you go off abs?

3) how severe are your child's symptoms (some tics/mild ocd? or unable to function/attend school/eat/needs to be in mental institution)

 

 

 

EAmom and Vicki...we are in the exact situation.

 

1) sibblings are carriers

2) symptoms come back as soon as we lower Augmentin

 

I am nervous that the White Paper will prevent us from getting antibiotics. I do not want to wait until he is "bad off" enough to pursue IVIG, he has been doing well on Augmentin.

 

Also, Dr. K sounds like a wonderful person, however, who really knows how all of our children are responding to different treatment!!!! Has anyone ever contacted the families of the diagnosed children and got any consensus on how our children are responding to the different treatments? Maybe so many of us have had fairly good recovery with the antibiotics that we have not needed to contact Dr. K. As for us we knew that IVIG was the direction he believed in, so we went with a Dr. with the long term antibiotics route to try first and have not needed (knock on wood) to pursue IVIG.

 

Also, as far as being asymptomatic....all 3 of our boys are asymptomatic to strep and we just got the 2 non PANDAS boys titers run. One has almost 500 and the other almost 800! The youngest has been swabbed and (rapid & 72 hour) ALWAYS negative. Last week the tonsils and adenoids came out and were cultured...positive for strep.

 

Given 14 days of Augmentin and the head and vocal tic as well as the hyper behavior...gone! Never a single sign of strep. I am curious what all of their Cunningham’s tests will say. Had no idea that the youngest son’s tics could be a sign of this illness until Dr. L asked. I mean he never had strep…I thought…the positive culture on the removed tonsils is the only place that a positive strep was ever detected. So, thank goodness we kept (and still keep)the PANDAS son on antibiotics.

 

I also wonder about the family that can not afford IVIG, does that leave that child with no opptions? OH, still so much to learn...but let's keep moving forward!

[thereishope]

Just to clarify, my son actually does not backslide off antibiotics. Not sure if I implied he does.