Dr. K's presentation at OCF Conference

[justinekno]

It was explained to us by Dr. B. that given my son's lab results, family history and age (10), if we do nothing now, he may get worse in time. So even though right now we are only seeing tics (and some mild OCD) as our symptom, we are pursuing the option of IVIG for him. Our family history includes quite a bit of icky autoimmune diseases (on both sides) so if I can possibly help my son to avoid them, then I will do it.

 

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

Edited July 21, 2010 by justinekno

[EAMom]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

 

Part of your decision might be affected by the age of your child. If your child is younger, there is a lot of years where things could get go from not-so-bad to bad to worse. If your kid is older (11 or 12) and handling things well (schoolwork, social issues)... well then one might feel more comfortable about "riding things out" with "just" antibiotics.

Edited July 21, 2010 by EAMom

[sptcmom]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

 

Part of your decision might be affected by the age of your child. If your child is younger, there is a lot of years where things could get go from not-so-bad to bad to worse. If your kid is older (11 or 12) and handling things well (schoolwork, social issues)... well then one might feel more comfortable about "riding things out" with "just" antibiotics.

EA Mom, I have a question. Is this your experience or did your PANDAS doc advise this? When I spoke to Dr K, he said that the line of thought that puberty may help autoimmune issues resolve is only /may only be true for less that 50% of children afflicted and that IVIG was the way to go.This was because DS8 walked into Dr K's office 99% symptom free and we were earnestly discussing IVIG and future plans. I am very interested in getting any info about older children. My girlfriend is thinkig along the lines you are and her DD is 13 with mild PANDAS and Myco.

[kimballot]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

AJ I am with you on this one. It is so difficult to make this decision. I am not looking for perfection, but I also want my son to reach his fullest potential. I wish I could know what he would look like with IVIG to help make that decision. I am sure there are some children for whom ABX is enough. I am not sure if that is my son.

[JAG10]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

AJ I am with you on this one. It is so difficult to make this decision. I am not looking for perfection, but I also want my son to reach his fullest potential. I wish I could know what he would look like with IVIG to help make that decision. I am sure there are some children for whom ABX is enough. I am not sure if that is my son.

 

Please know that I ask this with the utmost respect and sincerity to those of you who are dealing with this dilemma. I know I can be fresh, but not in this instance.

 

Is it the risk or money that gives you pause? Both are totally valid considerations. If (everybody cross your fingers right now) we get to a point where all insurance covers all treatment options for our children, how would that influence your thought process? Some people view IVIG as a substantial risk and others...some risk, but not that much.

 

If you knew it would be paid for in totality, would that sway you toward giving it a try?

 

For me, with my younger dd7 in mind (who I'm on the fence about re:dx) I would have to see interference in typical, daily functioning to consider it, even if it is no cost to the family.

 

Looking at that silver lining, I would already know what to expect having gone through it with my older girl for whom I had no doubt in my decision.

Edited July 21, 2010 by JAG10

[Doug]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

you're making perfect sense and we think about that a lot. For us, it was the re-occurence of anorexia symptoms that made the choice easy. I think the points of exacerbation cause the choice points in treatment, not the calms between the storms. I am hoping we have years of calm before any other storms -- Everyone could use the break.

Yep,my dd 5 then stoped eating she said everything tasted like paint.

we had just had enough of it,called Dr.k on we were off to Chicago

a week later.

Tracie

[kimballot]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

AJ I am with you on this one. It is so difficult to make this decision. I am not looking for perfection, but I also want my son to reach his fullest potential. I wish I could know what he would look like with IVIG to help make that decision. I am sure there are some children for whom ABX is enough. I am not sure if that is my son.

 

Please know that I ask this with the utmost respect and sincerity to those of you who are dealing with this dilemma. I know I can be fresh, but not in this instance.

 

Is it the risk or money that gives you pause? Both are totally valid considerations. If (everybody cross your fingers right now) we get to a point where all insurance covers all treatment options for our children, how would that influence your thought process? Some people view IVIG as a substantial risk and others...some risk, but not that much.

 

If you knew it would be paid for in totality, would that sway you toward giving it a try?

 

For me, with my younger dd7 in mind (who I'm on the fence about re:dx) I would have to see interference in typical, daily functioning to consider it, even if it is no cost to the family.

 

Looking at that silver lining, I would already know what to expect having gone through it with my older girl for whom I had no doubt in my decision.

 

To be honest with you, in my case, it is not the personal out-of-pocket money that holds me back. My son has mild immune deficiencies and I think Dr. B would get it covered. If he needed it and it was not covered, I would still give it to him... so I can honestly say it is not the money in my case.

 

I do have concerns, though, about using medical dollars unnecessarily. Let's face it - just because insurance covers something it is not free - it just means that we all share the cost. I really make a conscious effort not to waste insurance dollars (I know that probably sounds odd- just a part of me). I also have concerns about using a donated tissue product unnecessarily. I don't want to be using IVIG on my son if it is not helping when people donated that blood to help people who really needed it. Does my son really need it? Should we be saving that for some of our kids who are much worse off? Again - I know that is very odd but it is something that I think about.

 

 

That being said... I honestly have slight concerns about the safety - though they are no more than the concerns I have whenever he has had a vaccination or when he has had surgery, so I don't think the safety is the issue for me either.

 

I think the biggest concern for me is stirring up the pot and making things worse. I worry about turning back the pages and not having them turn forward again. I worry about putting him through an exacerbation without any long-term benefit. If I did IVIG I really don't know if he would be any different than he is now. He has had this for so long I don't know what "baseline" is for him... and -honestly- I can accept him as he is right now and work with it....

 

But I think about what SF MOm says about not settling for anything less than "normal" and I don't want to sell him short. He is 13 now so I feel like time is running out. Only 1 more year until High School.

 

Right now I am reveling in the relative "normalcy" we are having after his sinus surgery. He wakes up happy every day - goes off to camp, and comes home tired and happy. He has friends, he has activities, and there are no tics or obvious OCD... but the night time is still iffy. He still has some trouble with sleeping or staying asleep... and I know we are only one germ away from another exacerbation.

 

So... would IVIG decrease the number or severity of exacerbations? Would it raise the level of his baseline to something even more functional? Those are the questions I need the crystal ball for.

Edited July 22, 2010 by kimballot

[3boysmom]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

AJ I am with you on this one. It is so difficult to make this decision. I am not looking for perfection, but I also want my son to reach his fullest potential. I wish I could know what he would look like with IVIG to help make that decision. I am sure there are some children for whom ABX is enough. I am not sure if that is my son.

 

Please know that I ask this with the utmost respect and sincerity to those of you who are dealing with this dilemma. I know I can be fresh, but not in this instance.

 

Is it the risk or money that gives you pause? Both are totally valid considerations. If (everybody cross your fingers right now) we get to a point where all insurance covers all treatment options for our children, how would that influence your thought process? Some people view IVIG as a substantial risk and others...some risk, but not that much.

 

If you knew it would be paid for in totality, would that sway you toward giving it a try?

 

For me, with my younger dd7 in mind (who I'm on the fence about re:dx) I would have to see interference in typical, daily functioning to consider it, even if it is no cost to the family.

 

Looking at that silver lining, I would already know what to expect having gone through it with my older girl for whom I had no doubt in my decision.

 

To be honest with you, in my case, it is not the personal out-of-pocket money that holds me back. My son has mild immune deficiencies and I think Dr. B would get it covered. If he needed it and it was not covered, I would still give it to him... so I can honestly say it is not the money in my case.

 

I do have concerns, though, about using medical dollars unnecessarily. Let's face it - just because insurance covers something it is not free - it just means that we all share the cost. I really make a conscious effort not to waste insurance dollars (I know that probably sounds odd- just a part of me). I also have concerns about using a donated tissue product unnecessarily. I don't want to be using IVIG on my son if it is not helping when people donated that blood to help people who really needed it. Does my son really need it? Should we be saving that for some of your kids who are much worse off? Again - I know that is very odd but it is something that I think about.

 

 

That being said... I honestly have slight concerns about the safety - though they are no more than the concerns I have whenever he has had a vaccination or when he has had surgery, so I don't think the safety is the issue for me either.

 

I think the biggest concern for me is stirring up the pot and making things worse. I worry about turning back the pages and not having them turn forward again. I worry about putting him through an exacerbation without any long-term benefit. If I did IVIG I really don't know if he would be any different than he is now. He has had this for so long I don't know what "baseline" is for him... and -honestly- I can accept him as he is right now and work with it....

 

But I think about what SF MOm says about not settling for anything less than "normal" and I don't want to sell him short. He is 13 now so I feel like time is running out. Only 1 more year until High School.

 

Right now I am reveling in the relative "normalcy" we are having after his sinus surgery. He wakes up happy every day - goes off to camp, and comes home tired and happy. He has friends, he has activities, and there are no tics or obvious OCD... but the night time is still iffy. He still has some trouble with sleeping or staying asleep... and I know we are only one germ away from another exacerbation.

 

So... would IVIG decrease the number or severity of exacerbations? Would it raise the level of his baseline to something even more functional? Those are the questions I need the crystal ball for.

 

 

 

We are so, so, very much in the same boat! It is absolutely not the money! In fact we have saved up for the IVIG for "just-in-case." For me it is about the fact that our ds10 is 95% better. It is so nice to hear him laugh again! How can I put him through this h..l all over again and for what reason? What am I hoping to get? But then if he can be 100%, I feel that I am being neglectful by not doing the IVIG. If IVIG's measurement of success is 75% of baseline, (I think I don't have that number exact) aren't we already there with the antibiotics? What if it turns back pages and we only get back to 85%? I will feel horrible that we didn't leave good enough alone and be grateful for the improvements that we did make. The thing that really holds me back is when I read that many are on their 3rd, 4th, or 6th IVIG. Then how is that considered working if it needs to be constant? So I go for the IVIG treatment in hopes of getting my child back when I already do have him mostly back? I know that he could relapse at any moment, but it sounds like that happens with IVIG also. It does seem that many of us are dealing with 10 year old boys and we are worried that we are reaching that "10 year" mark. That is why I was so interested in the comment about antibiotics on Dr. K's site. We had sudden overnight PANDAS and got on antibiotics after 3 months, but in all reality I can name 2 very small but odd times in the past after an illness and to be honest...after his 15month old shots....he was a bit in a fog ever since. Maybe he had asymptomatic strep during his shots and I didn't know.

 

Oh, here is a question I have wanted to ask: We get his blood ASO and Anti dnase tested every 2 months. Although they are going down, it is very slow. Began in January with ASO 1726 and Anti Dnase 1920. Every 2 months they seem to go down by only 200. Now after 6 months his ASO is 1292 and Anti Dnase is 1360. At the rate they are going down, we could be doing this for years and that does not account for re-exposure! When you do IVIG, does that set everything back to normal limits? Anti ASO 200 and ANti dnase 170?

 

I saw someone else post that there son will be attending a small private school for 5th grade with a ratio of 1 to 6! That is odd because our son will also attend 5th grade at a private school with only 6 to 8 other kids in his class. Thought about homeschooling but although my love and passion is teaching kids with needs, it is now what pays for my child that now has needs of his own. Ironic.

[JAG10]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

AJ I am with you on this one. It is so difficult to make this decision. I am not looking for perfection, but I also want my son to reach his fullest potential. I wish I could know what he would look like with IVIG to help make that decision. I am sure there are some children for whom ABX is enough. I am not sure if that is my son.

 

Please know that I ask this with the utmost respect and sincerity to those of you who are dealing with this dilemma. I know I can be fresh, but not in this instance.

 

Is it the risk or money that gives you pause? Both are totally valid considerations. If (everybody cross your fingers right now) we get to a point where all insurance covers all treatment options for our children, how would that influence your thought process? Some people view IVIG as a substantial risk and others...some risk, but not that much.

 

If you knew it would be paid for in totality, would that sway you toward giving it a try?

 

For me, with my younger dd7 in mind (who I'm on the fence about re:dx) I would have to see interference in typical, daily functioning to consider it, even if it is no cost to the family.

 

Looking at that silver lining, I would already know what to expect having gone through it with my older girl for whom I had no doubt in my decision.

 

To be honest with you, in my case, it is not the personal out-of-pocket money that holds me back. My son has mild immune deficiencies and I think Dr. B would get it covered. If he needed it and it was not covered, I would still give it to him... so I can honestly say it is not the money in my case.

 

I do have concerns, though, about using medical dollars unnecessarily. Let's face it - just because insurance covers something it is not free - it just means that we all share the cost. I really make a conscious effort not to waste insurance dollars (I know that probably sounds odd- just a part of me). I also have concerns about using a donated tissue product unnecessarily. I don't want to be using IVIG on my son if it is not helping when people donated that blood to help people who really needed it. Does my son really need it? Should we be saving that for some of your kids who are much worse off? Again - I know that is very odd but it is something that I think about.

 

 

That being said... I honestly have slight concerns about the safety - though they are no more than the concerns I have whenever he has had a vaccination or when he has had surgery, so I don't think the safety is the issue for me either.

 

I think the biggest concern for me is stirring up the pot and making things worse. I worry about turning back the pages and not having them turn forward again. I worry about putting him through an exacerbation without any long-term benefit. If I did IVIG I really don't know if he would be any different than he is now. He has had this for so long I don't know what "baseline" is for him... and -honestly- I can accept him as he is right now and work with it....

 

But I think about what SF MOm says about not settling for anything less than "normal" and I don't want to sell him short. He is 13 now so I feel like time is running out. Only 1 more year until High School.

 

Right now I am reveling in the relative "normalcy" we are having after his sinus surgery. He wakes up happy every day - goes off to camp, and comes home tired and happy. He has friends, he has activities, and there are no tics or obvious OCD... but the night time is still iffy. He still has some trouble with sleeping or staying asleep... and I know we are only one germ away from another exacerbation.

 

So... would IVIG decrease the number or severity of exacerbations? Would it raise the level of his baseline to something even more functional? Those are the questions I need the crystal ball for.

 

 

 

We are so, so, very much in the same boat! It is absolutely not the money! In fact we have saved up for the IVIG for "just-in-case." For me it is about the fact that our ds10 is 95% better. It is so nice to hear him laugh again! How can I put him through this h..l all over again and for what reason? What am I hoping to get? But then if he can be 100%, I feel that I am being neglectful by not doing the IVIG. If IVIG's measurement of success is 75% of baseline, (I think I don't have that number exact) aren't we already there with the antibiotics? What if it turns back pages and we only get back to 85%? I will feel horrible that we didn't leave good enough alone and be grateful for the improvements that we did make. The thing that really holds me back is when I read that many are on their 3rd, 4th, or 6th IVIG. Then how is that considered working if it needs to be constant? So I go for the IVIG treatment in hopes of getting my child back when I already do have him mostly back? I know that he could relapse at any moment, but it sounds like that happens with IVIG also. It does seem that many of us are dealing with 10 year old boys and we are worried that we are reaching that "10 year" mark. That is why I was so interested in the comment about antibiotics on Dr. K's site. We had sudden overnight PANDAS and got on antibiotics after 3 months, but in all reality I can name 2 very small but odd times in the past after an illness and to be honest...after his 15month old shots....he was a bit in a fog ever since. Maybe he had asymptomatic strep during his shots and I didn't know.

 

Oh, here is a question I have wanted to ask: We get his blood ASO and Anti dnase tested every 2 months. Although they are going down, it is very slow. Began in January with ASO 1726 and Anti Dnase 1920. Every 2 months they seem to go down by only 200. Now after 6 months his ASO is 1292 and Anti Dnase is 1360. At the rate they are going down, we could be doing this for years and that does not account for re-exposure! When you do IVIG, does that set everything back to normal limits? Anti ASO 200 and ANti dnase 170?

 

I saw someone else post that there son will be attending a small private school for 5th grade with a ratio of 1 to 6! That is odd because our son will also attend 5th grade at a private school with only 6 to 8 other kids in his class. Thought about homeschooling but although my love and passion is teaching kids with needs, it is now what pays for my child that now has needs of his own. Ironic.

 

 

-Ditto on the "entering 5th grade" child, but girl and absolutely needed IVIG

-Ditto on the working with cherubs w/special needs to pay for my own to go to private school

 

IVIG was 5/26-27, blood work from last week re:titers

 

Pre-ivig ASO= 448

Post-ivig ASO= 227

 

Pre DNAseB= >1360

Post DNAseB= 340

 

That was the good news.

 

Pre ivig myco p IGG = 1.63

Post ivig myco p IGG= 3.02

 

Pre ivig myco p IGM= 667

Post ivig myco p IGM= 764

 

Still trying to find out what this means, if anything.

[justinekno]

That was me posting about sending my son to a small private school. Maybe our kids are going to the same school! We homeschool now (for the past two years) and I am afraid that sending him back to school, even in a small setting, while he is still not "cured" is a recipe for trouble. But I also know he craves for the routine of school (his older brother went to public school) and I'm not sure I am doing such a great job with teaching him at home at the same time as trying to get him the medical help he needs. It's such a hard decision that we actually haven't even signed the contract yet because we are still on the fence. Where's that crystal ball that someone mentioned?!

 

 

I saw someone else post that there son will be attending a small private school for 5th grade with a ratio of 1 to 6! That is odd because our son will also attend 5th grade at a private school with only 6 to 8 other kids in his class. Thought about homeschooling but although my love and passion is teaching kids with needs, it is now what pays for my child that now has needs of his own. Ironic.

[3boysmom]

That was me posting about sending my son to a small private school. Maybe our kids are going to the same school! We homeschool now (for the past two years) and I am afraid that sending him back to school, even in a small setting, while he is still not "cured" is a recipe for trouble. But I also know he craves for the routine of school (his older brother went to public school) and I'm not sure I am doing such a great job with teaching him at home at the same time as trying to get him the medical help he needs. It's such a hard decision that we actually haven't even signed the contract yet because we are still on the fence. Where's that crystal ball that someone mentioned?!

 

 

I saw someone else post that there son will be attending a small private school for 5th grade with a ratio of 1 to 6! That is odd because our son will also attend 5th grade at a private school with only 6 to 8 other kids in his class. Thought about homeschooling but although my love and passion is teaching kids with needs, it is now what pays for my child that now has needs of his own. Ironic.

 

 

I worry about the same thing! We are using the Augmentin XR treatment, but feel that from hearing all the others' experience with this that it will not be "if" but "when" he relapses and has another episode...we will be off to Chicago.

 

We also have strange autoimune illnesses on both sides of the family!

 

Prayers to us all with the scary choices we all need to make and faith that God is guiding our decisions. BTW-His school is in Texas.

Edited July 22, 2010 by 3boysmom

[MomWithOCDSon]

We're another family with an "entering puberty" child (DS is 13). When this latest exacerbation hit last May, things went from bad to worse very quickly. We didn't latch onto PANDAS until October, and by that time school (7th grade) had started up, and DS was struggling horribly; we eventually took him out for about 6 weeks and home schooled him while the school got its act together with the IEP, and we tried to find some solution for DS that would at least get him functional again.

 

We finally found it in Augmentin XR. Is he 100% now, 9 months later? Unfortunately, no. He had an almost miraculous recovery to about 50% within the first 2 weeks of the Augmentin, and he has made generally slow, steady progress since, along with some "saw-toothed" back-sliding, particularly under times of stress. But he was able to return to school, gradually, attending full time by January. We've been able to trim back the psych drugs he'd been on for the last 5 years and continue to do so. He's returned to sharing activities with friends, stepping out to movies and restaurants, tackling exposures on a regular basis (his PANDAS behavioral manifestation is OCD, and a fairly even mix between "contamination" and "just right"). He still has upsets and triggers, but he musters through them quicker and quicker, and we've stopped trying to shelter him from the world and are increasingly pushing him out there, with all the triggers and fears, and supporting him while he figures out how to manage himself. I would say he's currently about 75%.

 

I should also mention that, not unlike many of the other kids here, he seems to have some comorbid behaviors, if not officially comorbid conditions. As LLM says about her son, our DS is twice exceptional: both intellectually gifted and struggling with certain processing issues. He has some Aspberger's traits, as well, which were present even prior to the exacerbation. And he has struggled with focus and attention, though the ADHD issues are definitely much more pronounced when the exacerbation/OCD is raging.

 

We met with Dr. K. in May and have great respect for him, his experience and his opinions. That being said, he can only respond to what he's seen, as Buster's said, and he generally sees folks when they get to or near that "IVIG tipping point." We were almost there ourselves . . . but not quite. He told us directly that we could take DS off of the abx, that it wasn't assisting him anymore; but we live with DS 24-7, and we know definitively that it is. It's not that we don't take Dr. K.'s opinion into consideration, but that we have to find a way of amalgamating his opinions and experiences with our own. At the IOCDF conference, I heard it continually, in session after session, from the doctors, therapists and researchers: "Yes, we are 'experts' in our respective fields. But YOU are THE expert with respect to your child. YOU must partner with us for the best possible outcome." I truly appreciate the acknowledgement and validation that we parents have very important roles to play here, and that our perspectives and experience are to be factored in.

 

If our DS were experiencing anorexia like some of the kids here, or self-harming or life threatening in some other way, or miserable and anxious 12+ hours out of every day, would we be ready for IVIG now? Probably. But as we continue to document improvement, and as DS continues to function, ever so gradually, better and better in the outside world, we'll stick with the abx. From what we've read here, IVIG is very rarely an "instantaneous" bringer of remission of the condition, and there seems to be at least some anecdotal evidence that its best, quickest efficacy just may be for those cases which are identified earlier and/or younger, not unlike the greater cases of efficacy for abx.

 

Meanwhile, we've gone at least 7 years, and possibly longer, without PANDAS intervention, so our road is likely to be long, no matter which treatment protocol we elect. So abx it is, at least for the time being. Should DS slide precipitously backward again at some point, then we'll have to re-evaluate.

 

 

I am very interested in getting any info about older children. My girlfriend is thinkig along the lines you are and her DD is 13 with mild PANDAS and Myco.

[3boysmom]

We're another family with an "entering puberty" child (DS is 13). When this latest exacerbation hit last May, things went from bad to worse very quickly. We didn't latch onto PANDAS until October, and by that time school (7th grade) had started up, and DS was struggling horribly; we eventually took him out for about 6 weeks and home schooled him while the school got its act together with the IEP, and we tried to find some solution for DS that would at least get him functional again.

 

We finally found it in Augmentin XR. Is he 100% now, 9 months later? Unfortunately, no. He had an almost miraculous recovery to about 50% within the first 2 weeks of the Augmentin, and he has made generally slow, steady progress since, along with some "saw-toothed" back-sliding, particularly under times of stress. But he was able to return to school, gradually, attending full time by January. We've been able to trim back the psych drugs he'd been on for the last 5 years and continue to do so. He's returned to sharing activities with friends, stepping out to movies and restaurants, tackling exposures on a regular basis (his PANDAS behavioral manifestation is OCD, and a fairly even mix between "contamination" and "just right"). He still has upsets and triggers, but he musters through them quicker and quicker, and we've stopped trying to shelter him from the world and are increasingly pushing him out there, with all the triggers and fears, and supporting him while he figures out how to manage himself. I would say he's currently about 75%.

 

I should also mention that, not unlike many of the other kids here, he seems to have some comorbid behaviors, if not officially comorbid conditions. As LLM says about her son, our DS is twice exceptional: both intellectually gifted and struggling with certain processing issues. He has some Aspberger's traits, as well, which were present even prior to the exacerbation. And he has struggled with focus and attention, though the ADHD issues are definitely much more pronounced when the exacerbation/OCD is raging.

 

We met with Dr. K. in May and have great respect for him, his experience and his opinions. That being said, he can only respond to what he's seen, as Buster's said, and he generally sees folks when they get to or near that "IVIG tipping point." We were almost there ourselves . . . but not quite. He told us directly that we could take DS off of the abx, that it wasn't assisting him anymore; but we live with DS 24-7, and we know definitively that it is. It's not that we don't take Dr. K.'s opinion into consideration, but that we have to find a way of amalgamating his opinions and experiences with our own. At the IOCDF conference, I heard it continually, in session after session, from the doctors, therapists and researchers: "Yes, we are 'experts' in our respective fields. But YOU are THE expert with respect to your child. YOU must partner with us for the best possible outcome." I truly appreciate the acknowledgement and validation that we parents have very important roles to play here, and that our perspectives and experience are to be factored in.

 

If our DS were experiencing anorexia like some of the kids here, or self-harming or life threatening in some other way, or miserable and anxious 12+ hours out of every day, would we be ready for IVIG now? Probably. But as we continue to document improvement, and as DS continues to function, ever so gradually, better and better in the outside world, we'll stick with the abx. From what we've read here, IVIG is very rarely an "instantaneous" bringer of remission of the condition, and there seems to be at least some anecdotal evidence that its best, quickest efficacy just may be for those cases which are identified earlier and/or younger, not unlike the greater cases of efficacy for abx.

 

Meanwhile, we've gone at least 7 years, and possibly longer, without PANDAS intervention, so our road is likely to be long, no matter which treatment protocol we elect. So abx it is, at least for the time being. Should DS slide precipitously backward again at some point, then we'll have to re-evaluate.

 

 

I am very interested in getting any info about older children. My girlfriend is thinkig along the lines you are and her DD is 13 with mild PANDAS and Myco.

 

 

 

Thank You!!!!! We are in the same boat and also with very mild Asperger's.

[ajcire]

Good questions:

 

My son is just about to turn 8. I do worry that many of you described your kids at 8 like I do mine but now years later things have progressed to more serious. I have lost plenty of sleep over worrying about this but realize without a crystal ball I will have to just take each day as it comes. I believe this all started very young for my son and the first concrete thing I can trace back to is when he was 2 and I brought him to the dr. one day when he woke up with a constant eye blink...which won't be a surprise for you to hear was diagnosed as a common childhood tic and I was told not to worry... I can go back even farther and tell you that there was always something a bit different even as a baby..quirky.. .that in the end was attributed to his brightness. I taught special ed (my class was children with autism) and while I saw some traits in him that sometimes made me nervous he was so clearly not on the spectrum.

 

EAMOM, no we have not tried a steroid taper. I'm not really sure I am even comfortable with that at this point. I don't know why.. maybe I'm just afraid of what I will learn. I don't know.

 

Would I do IVIG if it was free? I will definitely say that the cost plays a role in things for me... it was a big deal for me to get dh to agree to see a pandas dr. and double hard being it wasn't covered by insurance.... that said if my son was in a place that so many pandas children are I don't think that I would have to convince dh of anything. It's the fact that my son is totally functioning both at home and at school that makes this harder. If my son was going through the severe episodes so many children are I think this would be more clear cut. If he was not eating, it would be a no brainer that we had to do something. If he was unable to attend school, afterschool activities, have friends, we would of course be taking bigger actions. BUT since he is... I don't think we would be able to justify IVIG even if it was free. Just like Kimballot expressed... what if we did something that turned our fully functioning child into non functioning. What if the turning of pages brought us things worse than anything we have seen in him before. What if they didn't turn back. I too have it sitting in my head that we should accept nothing less than 100% but then I think, heck.. who is 100%. I mean we all have personality flaws, quirks, less than perfect qualities and it is what makes us who we are. I don't know. It definitely all scares me. I feel a little bit better that if something should take a sudden turn I at least will have an idea of where to start. I feel confident that it is pandas for my son, we did the cunningham test, we even had the high titers, we have the positive throat cultures... but there is even the what if I am totally wrong here thought too... yet deep down I do really feel strongly that this is pandas and we did see a neurologist who agreed.... but what if... what if I am just crazy.

Edited July 22, 2010 by ajcire

[mkur]

My son has a cousin who has pandas. He had RF when he was 4 and later got tics and pandas - mild case. He has 2 younger brothers and they all went to public school. His mom is science teacher. They did not do any treatment for pandas only treated ADHD symptoms. The family never caught strep again. (why and how?) He is 20 and in college. I hope this makes some of you feel a little better. The NIH believes you should do nothing unless you have severe symptoms - didn't work for my son. Why? I wish I knew. Everyone is looking for a crystal ball and all I want is a time travel machine.