DOES IVIG REALLY EVEN WORK?

[Rowens1214]

In ref to your heading question Does IVIG really even work?

 

We are 4 1/2 wks post IVIG- I was skeptical preIVIG but hopeful but yes def questioning will this really work for our son ( his age 9 , how long he had suffered, how nonfunctioning he was - it all worried me) and I can report that we are 100% thankful and have NO regrets of going thru with IVIG and the money we shelled out on it - would do it again in a heartbeat if time reversed. We are Not 100% recovered yet, not even close, placing a number on it is hard maybe 40% but seeing him be able to cope, not rage- he was nonfunctioning and I thought there was no way school was even going to happen until after summer- but he is going 2 hrs a day now ( : that is HUGE!! He still dislikes math , lol, but can do a page of math problems - you couldn't even mention the word math before without a meltdown! He is on no SSRI's anymore , he is not in any therapy anymore, and the biggest improvement I have had family tell me he just seems more peaceful and yes he does - even if he tics still, he is just more at peace. We will continue to fight for 100% recovery for him but so far we and everyone close to my son has been made a believer and absolutely amazed by what Dr K has given us back.

 

7 upmom, I so needed to read your response, I too am wondering if IVIG is the way to go with my 15 year old. We spoke with Dr. k 3 weeks ago and he feels like we should proceed with IVIG right away based on my sons age and the number of years we have been dealing with tics, OCD, rage sep anxiety..... (8yrs of not knowing what was going on) I still can not stop myself from wondering if he really has PANDAS or is this just classic TS, OCD, etc. My son had a really bad surge in rage attacks and OCD 5-6 weeks ago and did test postive for type F strep. He has been improving slowly since he has been on keflex. He is also on klonopin ( just last 4 weeks so he could get out of bed and cope) and celexa for the ocd and depression he is dealing with after struggling for 8 years. We have been trying to decide what to do since he has negative titers and we dont have any numbers from tests like the cummingham etc to base a PANDAS diagnoises on. Dr K feels like he is 90% sure my son has PANDAS just based on his history of symptons and illnesses. Dr. K said to hope for a 80% improvement based on his age and duration of symptons. I was discouraged at first but 80% is a huge number for us after all my son has endured. thanks for posting you experience.

[EAMom]

You could ask him. I think Sue Swedo would say (maybe not on the record, but she would say it off the record) that you son should be on abs...how long, we're not sure. Based on ARF, they keep upping the age recommendation (I think she talks about this in one of her talks....maybe the DAN! lecture?)

 

I've heard that Dr. Trifiletti has seen relapses o PANDAS kids in their early 20's.

 

Beyond that we don't know, since there are no 30-40 year olds that were diagnosed as pandas as kids (and treated)...the diagnosis hasn't been around that long.

[Fixit]

You could ask him. I think Sue Swedo would say (maybe not on the record, but she would say it off the record) that you son should be on abs...how long, we're not sure. Based on ARF, they keep upping the age recommendation (I think she talks about this in one of her talks....maybe the DAN! lecture?)

 

I've heard that Dr. Trifiletti has seen relapses o PANDAS kids in their early 20's.

 

Beyond that we don't know, since there are no 30-40 year olds that were diagnosed as pandas as kids (and treated)...the diagnosis hasn't been around that long.

 

 

do you know how doc t treated them.....did they get better?

[peglem]

In ref to your heading question Does IVIG really even work?

 

We are 4 1/2 wks post IVIG- I was skeptical preIVIG but hopeful but yes def questioning will this really work for our son ( his age 9 , how long he had suffered, how nonfunctioning he was - it all worried me) and I can report that we are 100% thankful and have NO regrets of going thru with IVIG and the money we shelled out on it - would do it again in a heartbeat if time reversed. We are Not 100% recovered yet, not even close, placing a number on it is hard maybe 40% but seeing him be able to cope, not rage- he was nonfunctioning and I thought there was no way school was even going to happen until after summer- but he is going 2 hrs a day now ( : that is HUGE!! He still dislikes math , lol, but can do a page of math problems - you couldn't even mention the word math before without a meltdown! He is on no SSRI's anymore , he is not in any therapy anymore, and the biggest improvement I have had family tell me he just seems more peaceful and yes he does - even if he tics still, he is just more at peace. We will continue to fight for 100% recovery for him but so far we and everyone close to my son has been made a believer and absolutely amazed by what Dr K has given us back.

Your post just oozes with infectious joy! I'm so happy to hear this!

[JAG10]

EAMom,

 

Do you think they need to be on full strength abx post ivig or the prophylactic dose? If full strength, for how long before you taper down dosage?

 

 

You could ask him. I think Sue Swedo would say (maybe not on the record, but she would say it off the record) that you son should be on abs...how long, we're not sure. Based on ARF, they keep upping the age recommendation (I think she talks about this in one of her talks....maybe the DAN! lecture?)

 

I've heard that Dr. Trifiletti has seen relapses o PANDAS kids in their early 20's.

 

Beyond that we don't know, since there are no 30-40 year olds that were diagnosed as pandas as kids (and treated)...the diagnosis hasn't been around that long.

[EAMom]

EAMom,

 

Do you think they need to be on full strength abx post ivig or the prophylactic dose? If full strength, for how long before you taper down dosage?

 

I think a lot of it depends on the child...it probably what would be safer is to keep them on full-strength for a couple of months at least, and then if things are going well, test out the waters with a lower dose.

[EAMom]

You could ask him. I think Sue Swedo would say (maybe not on the record, but she would say it off the record) that you son should be on abs...how long, we're not sure. Based on ARF, they keep upping the age recommendation (I think she talks about this in one of her talks....maybe the DAN! lecture?)

 

I've heard that Dr. Trifiletti has seen relapses o PANDAS kids in their early 20's.

 

Beyond that we don't know, since there are no 30-40 year olds that were diagnosed as pandas as kids (and treated)...the diagnosis hasn't been around that long.

 

 

do you know how doc t treated them.....did they get better?

 

don't know!

[cfrei]

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...

[faith]

I think the first poster phasmid, is asking if IVIG is worth it.....

 

To be fair, those that answered in the affirmative, are ones with more toward the severe or at least with kids who have many issues. if your child is 'non-functionable', then maybe its a no-brainer. but for those of us who teeter on the moderate to mild, well, ..... just don't know.

 

 

Just my two cents, but I am quite okay with those with more severe cases going forward with this, I would do the same. I think the problem comes in when the child is not as severe, a more moderate or even mild case. My own feeling is just seeing alot of setbacks, and yes, some worsening, even if temporary. hard to say what the right thing to do is. for me, we have no high titers (I know its not necessary) or even a big history of strep, past or present, so I am not presently comfortable that these treatements will help, or 'hinder'.....

 

Everyone who posts here deserves the truth from everyone, the good, the bad, and the ugly. And its basically up to the parent and doctor as to wether they should move forward for more advanced or aggressive treatment. I personally don't feel these treatments should be 'advocated' publically yet (and by public, I mean media)... just my opinion, don't beat me up. This is still between doctor and parent/patient. We are all here for support, and we should all be free to give it, but ultimately, it is a choice that may warrant taking alot of things into consideration. I also think that saying our kids deserve 100% is not necessarily a fair argument. While that is most definitely true (and we wouldn't be on these boards if we didn't think that).. but who is to say what is the thing that will top us out at 100%? Clearly, it has not turned that way for everyone...at least not yet.

 

And btw, Dr. T. may have seen 'relapses' of kids on abx who are now in their twenties, but I think the one you may be referring to is the case of a girl who did wonderfully on abx and got well, altho may have had some symptoms return, albet mild, when she started birth control pill at around 21 or 22. I pretty much know that for a fact, but you are only 'hearing' it from me.....

 

I'll end by saying thank you to all who have contributed (and continue to contribute) to helping the rest of us make informed decisions. I've said it before.....say it again.....no 'one size fits all'........

 

 

Faith

Edited May 19, 2010 by faith

[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

[MomWithOCDSon]

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!

[Johnsmom]

Way to go Tracie and 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

[Phasmid]

Thanks everyone for being willing to throw your two cents in. Everyone had such helpful insight, one way or the other. It comes down to just putting it all on the scale, filling out the "pros" and "cons" chart. It's going to be a difficult decision, but your input will really help me come to a decision. Thanks, everyone!

 

Mary

[Stephanie2]

Just wanted to say that my son's addiction is fishing in the lake in our backyard. I mean this past weekend he fished for 11 hours one day, only stopped to eat (don't normally allow this, but we had nothing else to do). Coincidentally, or not, by the end of the day I noticed many pandas symptoms crop up and then when I was tucking him in - BAM - sore throat, nausea, mild fever! I started zithro right away...

 

Point is...I do notice that when his pandas is under control, it is much easier to "avoid" fishing without a fight or meltdown. Personally, I think it is OCD related.

 

Stephanie

[ajcire]

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