Jump to content
ACN Latitudes Forums

Started IVIG with Dr. Bouboulis


Alex
 Share

Recommended Posts

Do you have Tricare insurance?? Just curious as we are active duty Navy and gave TriCare Standard. We are seeing Dr. Latimer on Wednesday to discuss plasmapherisis and plan on doing monthly ivig, also. Our daughter does have low IGg/immune suppresed. I am so excited that this could possible be one obstancle that might be to so difficult to navigate. We could use the break!

 

Good luck with the IVIG. We think Dr. Bouboulis us GREAT!

 

Lynn

 

Hi, did you see Dr. T? I would have thought plasmapharesis in immune compromised kids was a bad idea. He thinks so for my son who also has low IGG. Maybe do some IVIG monthly to build up immune system, then consider PEX, then back to IVIG?

 

Discuss, please, parents.

 

Michael

Link to comment
Share on other sites

  • Replies 45
  • Created
  • Last Reply

Top Posters In This Topic

Michael

My thoughts...in a crisis pex can provide more immediate relief then follow with ivig to support the immune system. Pex would get the bad stuff out and in a sense you could start over and give the ivig less work remaining. I am not a doctor and we have not done. Pex but are doing ivig for my daughter but I would consider it if she needed more immediate relief. Its so easy to hand out advice but tough when you are the one making the decision. What does dr T tell you to do? Has he seen your son at the hospital? If you want to start with ivig Dr Bouboulis in CT isn't too far from you and is very easy to work with. You could certainly call him for some advice too.

Good luck.

Do you have Tricare insurance?? Just curious as we are active duty Navy and gave TriCare Standard. We are seeing Dr. Latimer on Wednesday to discuss plasmapherisis and plan on doing monthly ivig, also. Our daughter does have low IGg/immune suppresed. I am so excited that this could possible be one obstancle that might be to so difficult to navigate. We could use the break!

 

Good luck with the IVIG. We think Dr. Bouboulis us GREAT!

 

Lynn

 

Hi, did you see Dr. T? I would have thought plasmapharesis in immune compromised kids was a bad idea. He thinks so for my son who also has low IGG. Maybe do some IVIG monthly to build up immune system, then consider PEX, then back to IVIG?

 

Discuss, please, parents.

 

Michael

Link to comment
Share on other sites

Discuss, please, parents.

 

Michael

 

 

:unsure: ...... I don't have any input re experience with any of this, but just reading off on this thread, there are three parents reporting not so good results after PEX, with something seemingly being the aggravator after the fact. My question, or rather comment, would be, isn't there always going to be something that could/would potentially compromise the child's immune system, I mean this is the world we live in, there are threats everywhere. I don't know if these are the real reason these kids didn't fare absolutely well after this treatment, but as a bystander (for lack of a better word), I guess I'm concerned.

 

Michael, since you state that yr doc feels PEX is not indicated for kids with low igg or iga, (I don't claim to know anything about this since we hve not had these tests and I have no idea what they really indicate), then somewhere in the back of my mind, I feel like is this just experimentation at this point? I don't see consistency here. For instance, peglem just got back from Dr. L. and apparently she did not give a go for PEX for her girl, altho I beleive she has low Igg's (I think). I don't understand what all this means. I almost feel like the protocol re PEX and IVIG is everchanging and its all a matter of who can or can't affort it, or if it is covered, or who pushes the most for it. don't really know. sorry to put this out there, but you said to discuss. and I think these things should be discussed. there are many of us on the sidelines kind of waiting for the consensus, if you will. What I greatly fear is that these treatments are still in the 'experimental' stage. I mean, the immunologist does these tests, okay, and then its found that the child has these low igg's or whatever, and it gives a thumbs up for IVIG, but my question is 'how exactly do these results tie into PANDAS?' ... I mean do the test results that indicate okay for IVIG, based on low immunity indicate the same reason why PANDAS kids need this? I thought PANDAS is where these kids mount 'too much' of an attack and too many antibodies are always present. so my question would be 'how to the two tie in"? I don't know if I'm explaining this correctly, but for me, it concerns me that those that are getting 'approved' for IVIG based on these results, are going forward because they believe it will help the PANDAS symptoms, but then we are not exactly seeing great results. So now it is said that you need more than one, or monthly....... :unsure: ..... is this just an ongoing experiment? .... plealse forgive me guys, for putting these thoughts out there, but I think someone has to.

 

one thing that stands out in my mind, and I can't recall the poster that said this, but it may have been Alex, maybe bubbasmom? (sorry, correct me if I'm wrong), but I do recall reading where they were scheduled to do IVIG (Ibelieve thru Dr. L.) and then they, over the phone, reminded her that their child did (or did not get sick alot) forget which, but doesn't matter, my point is that then Dr. L. agreed and then said you're right, maybe PEX would be better... what if the parent didn't mention that or clarify that? shouldn't the doctor have been more in the know of what would be the way to go for this child? .... I don't know, it kind of unnerved me that if the parent didn't mention this, they would have gone ahead with the first indication.

 

Faith

Link to comment
Share on other sites

Discuss, please, parents.

 

Michael

 

 

:unsure: ...... I don't have any input re experience with any of this, but just reading off on this thread, there are three parents reporting not so good results after PEX, with something seemingly being the aggravator after the fact. My question, or rather comment, would be, isn't there always going to be something that could/would potentially compromise the child's immune system, I mean this is the world we live in, there are threats everywhere. I don't know if these are the real reason these kids didn't fare absolutely well after this treatment, but as a bystander (for lack of a better word), I guess I'm concerned.

 

Michael, since you state that yr doc feels PEX is not indicated for kids with low igg or iga, (I don't claim to know anything about this since we hve not had these tests and I have no idea what they really indicate), then somewhere in the back of my mind, I feel like is this just experimentation at this point? I don't see consistency here. For instance, peglem just got back from Dr. L. and apparently she did not give a go for PEX for her girl, altho I beleive she has low Igg's (I think). I don't understand what all this means. I almost feel like the protocol re PEX and IVIG is everchanging and its all a matter of who can or can't affort it, or if it is covered, or who pushes the most for it. don't really know. sorry to put this out there, but you said to discuss. and I think these things should be discussed. there are many of us on the sidelines kind of waiting for the consensus, if you will. What I greatly fear is that these treatments are still in the 'experimental' stage. I mean, the immunologist does these tests, okay, and then its found that the child has these low igg's or whatever, and it gives a thumbs up for IVIG, but my question is 'how exactly do these results tie into PANDAS?' ... I mean do the test results that indicate okay for IVIG, based on low immunity indicate the same reason why PANDAS kids need this? I thought PANDAS is where these kids mount 'too much' of an attack and too many antibodies are always present. so my question would be 'how to the two tie in"? I don't know if I'm explaining this correctly, but for me, it concerns me that those that are getting 'approved' for IVIG based on these results, are going forward because they believe it will help the PANDAS symptoms, but then we are not exactly seeing great results. So now it is said that you need more than one, or monthly....... :unsure: ..... is this just an ongoing experiment? .... plealse forgive me guys, for putting these thoughts out there, but I think someone has to.

 

one thing that stands out in my mind, and I can't recall the poster that said this, but it may have been Alex, maybe bubbasmom? (sorry, correct me if I'm wrong), but I do recall reading where they were scheduled to do IVIG (Ibelieve thru Dr. L.) and then they, over the phone, reminded her that their child did (or did not get sick alot) forget which, but doesn't matter, my point is that then Dr. L. agreed and then said you're right, maybe PEX would be better... what if the parent didn't mention that or clarify that? shouldn't the doctor have been more in the know of what would be the way to go for this child? .... I don't know, it kind of unnerved me that if the parent didn't mention this, they would have gone ahead with the first indication.

 

Faith

 

 

Faith, I know IVIG is commonly given for those with severe immune deficiency issues. One woman told me a non-PANDAS neighbor got regular IVIG from age 7 to age 13 " and she's fine now." PANDAS or not, immune deficiency levels are something that needs to be dealt with.

I believe the PEX kids who went backwards or did not do well were immune deficient and needed to have levels boosted, before getting the PEX. (I could be wrong.) This is why I wanted to have this discussion.

Michael

Link to comment
Share on other sites

Yes, but is immune deficiency and PANDAS horses of a different color? what may be good for one issue, may not be for the other? get what I'm saying? does finding these low igg results mean anything if the child is not showing clinical symptomology of that deficiency?

 

and what about those that don't have immune deficiency? I mean, these workups thru the immuno were (I beleive) started as a result of 'looking for a reason for IVIG to be covered', (again I think). So I guess I am seriously wondering if these results indicate anything that might 'mesh' wiith the PANDAS issue.

 

why again, did the Dr. state that PEX would not be a good idea for your boy?

 

Faith

Link to comment
Share on other sites

Faith,

 

IVIG and PEX has worked for some of the kids, and others like my son may need more of one or both, possibly because of the low IGG, not sure. We did see good results after IVIG, and even better results and for a longer period of time with PEX, but our ENT doctor believes my son may be a strep carrier and the strep is in the sinus cavities, not as easy as removing the tonsils and adnoids if the strep is carried there. As I understand it, and I could be wrong, is that doing PEX would remove all the bad antibodies and then follwed up with IVIG, would give the body a better fighting chance of mounting a resistance against the bad antibodies with the IVIG infussion of good antibodies.

 

Linda

Link to comment
Share on other sites

Yes, but is immune deficiency and PANDAS horses of a different color? what may be good for one issue, may not be for the other? get what I'm saying? does finding these low igg results mean anything if the child is not showing clinical symptomology of that deficiency?

 

and what about those that don't have immune deficiency? I mean, these workups thru the immuno were (I beleive) started as a result of 'looking for a reason for IVIG to be covered', (again I think). So I guess I am seriously wondering if these results indicate anything that might 'mesh' wiith the PANDAS issue.

 

why again, did the Dr. state that PEX would not be a good idea for your boy?

 

Faith

 

Dr T said " Plasma exchange would weaken his immune system further."

 

I think the argument is you can't successfully treat PANDAS without successfully treating immune system issues, that PANDAS invades the brain because your immune system can't handle the s pyogenes infection and so it heads to the brain to do its mishigas.

Those without immune deficiency I think can cut right to the PEX if they feel it's okay, THEN deal with the immune deficiency issues that follow thru PEX and what have you.

My take anyway.

Michael

Link to comment
Share on other sites

Regarding pex and ivig-

 

unfortunately for all of us, the science is just not there yet for our kids. So, to some degree this is all experimentation. That being said, these medications and procedures themselves are not experimental. They seem to work for some kids, not for others, and for varying lengths of time.

 

My daughter had pex. She was extreme in the sense that she had an overnight onset, and had a lot of trouble functioning in daily life. Getting to school, and enjoying simple things became hard for her. We did antibiotics and steroids, she would improve, and then we would have another trigger. I vowed to pursue treatment aggressively. I pursued pex for Julia with Dr Latimer. Luckily, our insurance pre approved (although are now denying). At the time we went for pex for a few reasons: a family in my neighborhood had great success with it, many who had ivig on the board were relapsing or not seeing great improvement at the time, we wanted to avoid introducing a blood product if possible. This being said, we were, and still are, very open to the possibility of ivig in the future.

 

The pex showed us the real Julia. She was 110% immediately post procedure. Obviously it was not a cure, because a pandas episode was triggered by H1N1 not too long after. We were able to stop that episode immediately thanks to steroids. I do believe she is closer to her true baseline today, because of the pex.

 

I have heard Dr T and Dr B's concern about pex for immunecompromised patients. The HemOnc team at Georgetown did immune testing prior to pex, and Julia passed. I am sure if there was any concern for a child, they would discuss it with the parent. What was explained to us, was that pex removes the antibodies (good and bad) from the blood. It does NOT remove the immune memory. According to the docs there, the immune system is back to normal within a few weeks, and if exposed to something in the meantime- the immune memory would create antibodies. How does this differ if you are immune compromised- I am not sure?

 

Unfortunately, for the milder pandas kids, like my older daughter- the obstacles to these kinds of procedures are great. There are risks, they cost a lot, they are stressful, and there are no gaurantees. So I can imagine for parents of these kids, the constant agony of whether to pursue them or not. Most of the great docs for pandas, will help you get the treatment you want and your child needs. I doubt if any of them will say your only choice is to do this... or you must do this... Unfortunately, you need to evaluate the info, your child's condition, and do what feels right to you. Impossible, I know.

Link to comment
Share on other sites

For instance, peglem just got back from Dr. L. and apparently she did not give a go for PEX for her girl, altho I beleive she has low Igg's (I think). I don't understand what all this means. I almost feel like the protocol re PEX and IVIG is everchanging and its all a matter of who can or can't affort it, or if it is covered, or who pushes the most for it. don't really know. sorry to put this out there, but you said to discuss.

 

Yes, My daughter has low IgG. But, I think the reason for not doing PEX was more because she thought my daughter would pull out the line. I think she's got a point there- when we contemplated PEX, this was one of our concerns-also, getting our daughter to stay on the bed while the procedure is in progress. We'll have the same challenges with IVIG, I suppose, but we'll deal with it.

 

I think to a certain extent, the treatment for PANDAS is a bit experimental and it gets shaped as more is learned and more experience is gained. There isn't a standardized protocol. I actually appreciate the lack of "checklist" here. My daughter is wildly atypical and doc who we have seen that do the whole protocol checklist, cannot place her- so they don't know what to do, and do nothing. One of the things I liked about Dr. L is that she considered what would work for THIS child, not what works for THESE kids. My experience with DAN doctors has been the opposite- more a lets try what works with these kids-it can't hurt to try it scenario.

 

What is known about PANDAS is that there is an immune problem, but I don't think its necessarily a matter of over or under active immune system. First off, Science doesn't have a comprehensive understanding of the immune system, or autoimmunity. I know for us, we cannot wait for the research to be completed. My daughter needs help years ago...So, I want to try what may work, what makes sense to try based on the information we do have. We know she has abnormally high anti-D2 antibodies (it makes sense to me to remove them if we can). We know her antibodies are low. We suspect her immune regulation is poor- its suppose to knock out these rogue antibodies that are interacting w/ self tissue. So, if her own system is not working properly, it makes sense (to me), to give her immune system components from other people.

 

I want science to keep trying to find out why this happened to my daughter and to learn how to prevent this happening to others and more certain treatments for when it does happen-but, my daughter can't wait for that to happen.

The ball was dropped on PANDAS research- but the study that was done on PEX/IVIG did show that they were beneficial treatment for PANDAS. But the slice of PANDAS that was looked at was narrow- did not include a wide variety of PANDAS kids, and I know that my daughter certainly would not have qualified for that study.

Mostly, I think there needs to be a balance in medicine, between the art and science. I think its skewed right now in the direction of science. Doctors hesitate to try things that they believe may help a patient because it hasn't been proven yet in the laboratory. I think there needs to be more room for physician discretion so that I don't have to run half way around the world to get help for my daughter.

Link to comment
Share on other sites

Amen, sister! Testify!!! :unsure:

 

 

Mostly, I think there needs to be a balance in medicine, between the art and science. I think its skewed right now in the direction of science. Doctors hesitate to try things that they believe may help a patient because it hasn't been proven yet in the laboratory. I think there needs to be more room for physician discretion so that I don't have to run half way around the world to get help for my daughter.
Link to comment
Share on other sites

Amen, sister! Testify!!! :unsure:

 

 

Mostly, I think there needs to be a balance in medicine, between the art and science. I think its skewed right now in the direction of science. Doctors hesitate to try things that they believe may help a patient because it hasn't been proven yet in the laboratory. I think there needs to be more room for physician discretion so that I don't have to run half way around the world to get help for my daughter.

 

 

Yes,all very excellent points, Peglem. Thank you indeed.

Link to comment
Share on other sites

Lauren had "low-normal" total IGg when she was tested in late November. When she was retested less than 4 weeks later by Dr. Bouboulis, she had fallen out of normal range and into "high-abnormal" so as of that latter test, she wasn't "crazy low". We also don't also understand why some of these children actually become compromised or worsen with the onset of PANDAS. I agree with the comments from other parents that each child is different and needs to be treated individually. I personal recently began to theorize that different strains tend to react differently within our children. Some are “super-strains” causing RF or worse, causing multiple family member to manifest into PANDAS, some strains more resistant to Augmentin vs. Azith, etc...some causes the immune system to go "wacky"..or compromises it!

 

We will discuss our personal situation with Dr. Latimer this week and along with the recommendation of Dr. Bouboulis and Dr. Trifiletti, we will, as Lauren's parents, have to process the information, weigh the costs vs. benefits and make a decision, and live with that. If that decision work for our child. Yippee! If it doesn’t far so well, try, try, again!

 

 

Something else to consider...maybe some parents have made choices to do or not do both PEX and IVIG treatments because of financial costs and chose one over the other, and it wasn't the ideal choice but a sacrifice necessary. I really hope someday our children will get the treatment they need because it is need and parents won't be forced into "choosing one or the other" because that's all they can afford. As the medical/insurance community starts to embrace PANDAS and it is more accepted hopefully coverage will be more available, more of our sick children will have it done and we will learn more about how well it works in general. I envision a "PANDAS World" in the future where every pediatrician knows what it is, they quickly, accurately recognize and diagnose. They obtain cultures early on, so we can identify strains. There are diagnosis tools similar to what Madeline Cunningham is already doing in her research so it is no longer a "clinical diagnosis" and most importantly our children and their families will suffer less! We will get there, I am confident. There are too many strong, passionate parents that in the world and on this forum that will settle for nothing less!

 

Lynn

 

Do you have Tricare insurance?? Just curious as we are active duty Navy and gave TriCare Standard. We are seeing Dr. Latimer on Wednesday to discuss plasmapherisis and plan on doing monthly ivig, also. Our daughter does have low IGg/immune suppresed. I am so excited that this could possible be one obstancle that might be to so difficult to navigate. We could use the break!

 

Good luck with the IVIG. We think Dr. Bouboulis us GREAT!

 

Lynn

 

Hi, did you see Dr. T? I would have thought plasmapharesis in immune compromised kids was a bad idea. He thinks so for my son who also has low IGG. Maybe do some IVIG monthly to build up immune system, then consider PEX, then back to IVIG?

 

Discuss, please, parents.

 

Michael

Link to comment
Share on other sites

Regarding pex and ivig-

 

unfortunately for all of us, the science is just not there yet for our kids. So, to some degree this is all experimentation. That being said, these medications and procedures themselves are not experimental. They seem to work for some kids, not for others, and for varying lengths of time.

 

My daughter had pex. She was extreme in the sense that she had an overnight onset, and had a lot of trouble functioning in daily life. Getting to school, and enjoying simple things became hard for her. We did antibiotics and steroids, she would improve, and then we would have another trigger. I vowed to pursue treatment aggressively. I pursued pex for Julia with Dr Latimer. Luckily, our insurance pre approved (although are now denying). At the time we went for pex for a few reasons: a family in my neighborhood had great success with it, many who had ivig on the board were relapsing or not seeing great improvement at the time, we wanted to avoid introducing a blood product if possible. This being said, we were, and still are, very open to the possibility of ivig in the future.

 

The pex showed us the real Julia. She was 110% immediately post procedure. Obviously it was not a cure, because a pandas episode was triggered by H1N1 not too long after. We were able to stop that episode immediately thanks to steroids. I do believe she is closer to her true baseline today, because of the pex.

 

I have heard Dr T and Dr B's concern about pex for immunecompromised patients. The HemOnc team at Georgetown did immune testing prior to pex, and Julia passed. I am sure if there was any concern for a child, they would discuss it with the parent. What was explained to us, was that pex removes the antibodies (good and bad) from the blood. It does NOT remove the immune memory. According to the docs there, the immune system is back to normal within a few weeks, and if exposed to something in the meantime- the immune memory would create antibodies. How does this differ if you are immune compromised- I am not sure?

 

Unfortunately, for the milder pandas kids, like my older daughter- the obstacles to these kinds of procedures are great. There are risks, they cost a lot, they are stressful, and there are no gaurantees. So I can imagine for parents of these kids, the constant agony of whether to pursue them or not. Most of the great docs for pandas, will help you get the treatment you want and your child needs. I doubt if any of them will say your only choice is to do this... or you must do this... Unfortunately, you need to evaluate the info, your child's condition, and do what feels right to you. Impossible, I know.

 

dcmom

thank you, I think you explain in a nutshell what some of us are up against, and your last paragraph says it well. If my child was severe enough, I would probably move forward on the express train. Not saying he is mild, because we have struggles with multiple tics, ocd getting more prevalent, and all those other fun issues. however, he is functional, goes to school, is bright enough and social enough to go under the radar with most of these issues, altho a waxing of a tic can be somewhat noticeable. I've dealt with this stuff for years, and while I'd love for it to be a distant memory, I think my fear is not that it "won't work", my fear is that I will create more problems and possibly set up a scene for him to actually get worse. Some of the 'setbacks' or 'relapses' for some here (wether re steroid, IVIG, PEX, or whatever) have pushed a few farther back than they were before the treatment. We have good days and bad days here, without those treaments, so I struggle to understand if the reasons for these setbacks are conclusive. I'm petrified (and this is with all modalities, not just PANDAS treatments) of doing something that may make my child worse off than he was in the first place, for sure my husband wiould bury me in the backyard if I pushed for something that is not a guarantee, and the result was adverse. :P You guys know I like to fully understand things before I jump in. I wish we could know wht the right thing to do is, I don't even think these doctors really know for sure what the outcome would be. If they don't know what it will be, how do they know it won't be adverse? the gamble is very frightening to me.

 

Faith

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share


×
×
  • Create New...