DOES IVIG REALLY EVEN WORK?

[tpotter]

My boys are 14 and 17. We don't know for sure when 17 yo got sick, but we were lucky that 14 yo was more classic symptoms, and we found Dr. K, or we would never have figured out that 17 yo didn't just have "psychological problems", such as bipolar (he was already hospitalized once.) SSRI's did NOT help, and Dr. L. has testified to that at our Due Process hearing for school.

 

Now, for the part about the learning problems (focus, attention to task, memory, math problems, etc.) As I mentioned, we were in Due Process (3 years...and trust me it's NO fun...may just be wrapping up, and we didn't get everything!) It does get worse if you don't deal with it. This horrible disorder does affect their ability to think. When my DS 14 took his first round of abx in Jan 2008, his response was: "my brain is compartmentalizing." This was in response to my question..."do you feel differently?" because I could actually see a massive change!

 

After IVIG last June, we had a somewhat similar response, but when it was obvious he needed more (remember he has also been sick for 6 years now, and is post-pubescent,) we went with PEX. On the way home from IVIG, he suddenly started telling me how clear his brain was, how he suddenly was seriously interested in doing something that he couldn't even fathom doing the day before. It was even more dramatic after PEX. We are getting ready to repeat one of the two (preferably PEX, and then I'd like to followup with IVIG, to hopefully improve the T-cells, and close the blood brain barrier, but we're waiting on Dr. L. for final decision as to which.)

 

Anyway, in answer to your concerns:

 

1) yes, I believe IVIG does work, and if abx is not sufficient, then I would jump at it, if you can. PEX also works, and I believe works faster in many cases, because it cleans the toxins out of the blood. As I said, I would like to do PEX followed by IVIG.

 

2) I firmly believe that we owe it to our children to get whatever we can to help them (no it is not a "cure", but sure does help a lot.) School could get nearly impossible later, and I do believe you'll regret it if you don't do something now.

 

Good luck.

[P_Mom]

Did you get IVIG by Dr. L or K?? (tpotter)

Edited May 19, 2010 by P.Mom

[Phasmid]

Ok, just when I was starting to think we'd leave well enough alone I read this. You make some good points, and course your son's exclamations are wonderful to hear. Thanks! I hope he is still doing great.

 

Mary

[sf_mom]

He started treating when his best friend's child had sudden on-set. I believe that was at least 10 years ago. The majority of his patients have been PANDAS for the last 5/6. He treats approximately 4 children a week.

 

Does anyone know how long ago Dr. K's first IVIG patient was?

[Johnsmom]

t potter

 

thanks for posting this. My son is due for IVIG with dr K in mid june. I began to question it cuz we were doing so well. Well I spoke too soon. The past few days he has been just plain weird. Hyper, bad attitude, not making sense. it was always in the back of my head that he could get worse if we dont move ahead. Thank you again for setting me straight on IVIG. 28 days and counting........

 

johnsmom

 

My boys are 14 and 17. We don't know for sure when 17 yo got sick, but we were lucky that 14 yo was more classic symptoms, and we found Dr. K, or we would never have figured out that 17 yo didn't just have "psychological problems", such as bipolar (he was already hospitalized once.) SSRI's did NOT help, and Dr. L. has testified to that at our Due Process hearing for school.

 

Now, for the part about the learning problems (focus, attention to task, memory, math problems, etc.) As I mentioned, we were in Due Process (3 years...and trust me it's NO fun...may just be wrapping up, and we didn't get everything!) It does get worse if you don't deal with it. This horrible disorder does affect their ability to think. When my DS 14 took his first round of abx in Jan 2008, his response was: "my brain is compartmentalizing." This was in response to my question..."do you feel differently?" because I could actually see a massive change!

 

After IVIG last June, we had a somewhat similar response, but when it was obvious he needed more (remember he has also been sick for 6 years now, and is post-pubescent,) we went with PEX. On the way home from IVIG, he suddenly started telling me how clear his brain was, how he suddenly was seriously interested in doing something that he couldn't even fathom doing the day before. It was even more dramatic after PEX. We are getting ready to repeat one of the two (preferably PEX, and then I'd like to followup with IVIG, to hopefully improve the T-cells, and close the blood brain barrier, but we're waiting on Dr. L. for final decision as to which.)

 

Anyway, in answer to your concerns:

 

1) yes, I believe IVIG does work, and if abx is not sufficient, then I would jump at it, if you can. PEX also works, and I believe works faster in many cases, because it cleans the toxins out of the blood. As I said, I would like to do PEX followed by IVIG.

 

2) I firmly believe that we owe it to our children to get whatever we can to help them (no it is not a "cure", but sure does help a lot.) School could get nearly impossible later, and I do believe you'll regret it if you don't do something now.

 

Good luck.

[Doug]

Hello,

The only thing I can say is that going to Dr K was THE BEST THING WE DID for our daughter!!!!

IVIG has brought her back to 100% she is awesome and I pray that she stays that way dr k seems to think that she will.

Thank god for giving him the brains to be able to help our kids.

we are 14 weeks post ivig and going strong!

Tracie&Doug

100%?!?! This is awesome news! Remind me, please, how old is your DD? And what is your post-IVIG treatment? Are you on low-dose, prophylactic abx, or continuing on with high-dose like XR for a bit?

 

Thanks for the good news!

Our dd will be 6 in June

we are doing 1/2 teaspoon everyday for 1 year

of zith.

[ajcire]

I was more meaning that I was curious as to how long out from IVIG for pandas there is to go by long term effects... I guess that means about 10 years.

 

I am a mom of a kid with mild pandas. I feel like the implication is that if I don't do IVIG than I am not giving my child 100% but at the same time I just think that while people here are seeing some success with it, it keeps cropping up where some people are not. I just hate the implication that if I don't take my functioning child and do this that I am holding him back. Nobody really can say with 100% certainty what the right move is. It's one thing for people to say that for their child it worked and it was the right move and another to imply that by not doing this I am holding my child back from 100% There is no guarantee that this is the answer for everyone.

 

 

He started treating when his best friend's child had sudden on-set. I believe that was at least 10 years ago. The majority of his patients have been PANDAS for the last 5/6. He treats approximately 4 children a week.

 

Does anyone know how long ago Dr. K's first IVIG patient was?

[sf_mom]

You are right..... the research is not there yet and it is personal choice on behalf of your child and family situation to move forward with IVIG or more aggressive treatments or not.

 

I do recommend consulting with Dr. K to give you his perspective of what the implications are with antibiotic treatment alone long term for your child. That way you will be able to appropriately weigh the risks/benefits.

 

Just so you know, I am not implying you are holding your child back from 100%.... by not treating with IVIG. As you know, there are some 'Sammy Saving' for example that have seen 100% recovery and remission for six years on antibiotics alone. AND, some that have seen 100% recovery through more homeopathic methods. I'm working with a nutritionist currently that was able to successfully treat a child diagnosed with TS and is symptom free at 9 years of age. I am also praying like heck that I can appropriately pull my twins out of PANDAS without more aggressive treatments but the goal is 100%. I personally do not believe we need to settle for residual symptoms no matter how you get there.

 

AND, I've seen such huge changes in my child post treatment and want to share that experience with others so they too will have the confidence to move forward if need be with IVIG. As you know, some kids have been sick for a very long time and I will be the first to state 'RECOVERY' is not a smooth process either. For us, it was not one IVIG treatment but 3 IVIG treatments and I do not even rule out another treatment for the future. Just trying to provide hope that it is achievable for those that are worried about this particular treatment process for their child.

 

Hopefully, I'm making sense. I think my stating 'our children deserve 100%' has been a little misinterpreted. Its just been my personal mantra that has gotten us through this difficult time.

Edited May 19, 2010 by SF Mom

[tapiash]

Ok, I finally got an appt. with Dr. K. Should I spend the money? (Some of you must be laughing at me right now, seeing as how I have complained about not being able to contact him!) Especially if the child isn't severe?

 

The reasons I am doing this (as a follow up after phone consult with another doc) is this:

 

1. Even though he has no tics, and the ocd is mild (in comparison with all of your cases), he still has goofy fears (can't sleep alone, can't always go upstairs alone, depending on the day, although this got better (i think) after doing Biaxin last month.

2. School anxiety, math learning issues, severe short term memory issue, attention issue (when it comes to school work)

3. Want to find out from Dr. K. if doing something more drastic than antibiotics will "prevent" further episodes in the future (one year ago was his last severe bout with raging ocd/tics).

4. Need to find an answer for his addictive behavior, whether this is in fact a form of ocd (addicted to gaming, and will have complete melt if he doesn't get his fix)

 

I think Dr. K. is our last hope, before SSRI, counseling, jumping off bridges...

 

 

Does anyone know where I can go in Texas for IVIg. We are fixing to start the approval proces but I am not sure where to go. I would love to go somewhere there is a pediarician on call not just a center.

[Megs_Mom]

You are right..... the research is not there yet and it is personal choice on behalf of your child and family situation to move forward with IVIG or more aggressive treatments or not.

 

I do recommend consulting with Dr. K to give you his perspective of what the implications are with antibiotic treatment alone long term for your child. That way you will be able to appropriately weigh the risks/benefits.

 

Just so you know, I am not implying you are holding your child back from 100%.... by not treating with IVIG. As you know, there are some 'Sammy Saving' for example that have seen 100% recovery and remission for six years on antibiotics alone. AND, some that have seen 100% recovery through more homeopathic methods. I'm working with a nutritionist currently that was able to successfully treat a child diagnosed with TS and is symptom free at 9 years of age. I am also praying like heck that I can appropriately pull my twins out of PANDAS without more aggressive treatments but the goal is 100%. I personally do not believe we need to settle for residual symptoms no matter how you get there.

 

AND, I've seen such huge changes in my child post treatment and want to share that experience with others so they too will have the confidence to move forward if need be with IVIG. As you know, some kids have been sick for a very long time and I will be the first to state 'RECOVERY' is not a smooth process either. For us, it was not one IVIG treatment but 3 IVIG treatments and I do not even rule out another treatment for the future. Just trying to provide hope that it is achievable for those that are worried about this particular treatment process for their child.

 

Hopefully, I'm making sense. I think my stating 'our children deserve 100%' has been a little misinterpreted. Its just been my personal mantra that has gotten us through this difficult time.

 

I totally understood what you meant - but I am familiar with the conversations here about getting back to 100% baseline - nothing less. That is generally the goal that many of us that have had severe sudden onsets discuss as being the only acceptable end place. Now, we tend to hover around 95-98 with abx and therapy. I struggle a lot with what we need to do next, but am, in many ways, basically waiting to see if the you-know-what hits the fan again before being more aggressive. But I will admit that I worry about it a lot, and I still have that 100% in my brain - for her sake, I want her back to 100%. Acheivabilty many vary a little by child. If I were a doctor or researcher, I would likely be aiming for about 85% - the resultant issues being manageable if not perfect.

 

I do realize that you did not mean that ANY of us were not giving our child a 100% chance by choosing one medical option over another - some options are not even available to every child, although I hope that will change soon.

 

Also, for those parents with a child that has a mild case, I know what a struggle it can be to decide what to do if it is not dramatic PANDAS. I don't envy your decisions. For those of us whose kids went to heck and back again, well we tend to want medical treatment - the option to choose was taken from many of us. Our case is not the worst here - but even so, we would do anything to avoid that dark place again for our kids. It's often hard to explain what happened to them, without sounding overly dramatic. It can be really bad.

[EAMom]

For those of us whose kids went to heck and back again, well we tend to want medical treatment - the option to choose was taken from many of us. Our case is not the worst here - but even so, we would do anything to avoid that dark place again for our kids. It's often hard to explain what happened to them, without sounding overly dramatic. It can be really bad.

 

Beautifully said! It is so difficult to convey "the *&%$# that is PANDAS" to a non-PANDAS parent. One needs to live through it with your own child to really understand...

Edited May 19, 2010 by EAMom

[tpotter]

Dr. L. She's in-network, and only a 2 1/2 hour car ride. Insurance paid.

[tpotter]

Does anyone know where I can go in Texas for IVIg. We are fixing to start the approval proces but I am not sure where to go. I would love to go somewhere there is a pediarician on call not just a center.

 

 

 

There's an immunologist in the Dallas area I heard about. If you can't find him/her, contact me directly, and I'll check some sources, and find out for you.

[tpotter]

t potter

 

thanks for posting this. My son is due for IVIG with dr K in mid june. I began to question it cuz we were doing so well. Well I spoke too soon. The past few days he has been just plain weird. Hyper, bad attitude, not making sense. it was always in the back of my head that he could get worse if we dont move ahead. Thank you again for setting me straight on IVIG. 28 days and counting........

 

johnsmom

 

 

 

You're welcome.

[sf_mom]

Meg's Mom, thanks for saying so... sometimes my opinions can be strong and perhaps come across as 'absolutes' via the internet. I did feel the need to say it is 'my personal mantra'. I think/worry if 'I' fall into realm of acceptable symptoms we'll miss a very important opportunity to retreat. I too struggle with the last 2% recovery, it is slow at this point and the donor antibodies are waning fully as we approach the six month mark post treatment. BUT, rumor has it RECOVERY can take a very long time so I continue to pray.

 

ALSO, please remember I come from the perspective that 'most' OCD/TS is infection/auto-immune triggered based our personal experience. 5 children at playdate in 2007 exposed to child with ARF and all now PANDAS. It is #$%@ and back..... I never ever want to revisit and our son's case was considered mild. My friend's son who is not so mild (no tics) has also suffered greatly too.

Edited May 20, 2010 by SF Mom