IVIG: how thorough of a cure has it been for you?

[momto2pandas]

I would love to see some actual "data" on IVIG outcomes in our group. Please post with your stories, as well!

 

Thanks!

[momto2pandas]

Oops - this was supposed to be a poll! What happened? I'll try again.

 

 

I would love to see some actual "data" on IVIG outcomes in our group. Please post with your stories, as well!

 

Thanks!

[melanie]

I would love to see some actual "data" on IVIG outcomes in our group. Please post with your stories, as well!

 

Thanks!

 

Can you add the ammount of IVIG used?

 

1g 1.5g 2g

 

I dont know how?

Melanie

[thereishope]

If you add anything else to the poll once it's started it deletes all info and won't let people revote.

[nevergiveup]

I like this poll and the question options. I think you will find that the results will be like swedos study, where most children improved. I believe in her study eighty percent after a year stated their kids were better or much better. (She didn't use cured, maybe an unrealistic expectation I do not know)

 

I would love to see some actual "data" on IVIG outcomes in our group. Please post with your stories, as well!

 

Thanks!

[dcmom]

I am really interested, and hope we have lots of responses.

 

My dd had plasma pheresis in October. Immediately after, her pandas symptoms were 110% gone.

 

Since then, she had the flu. Although she is still great- she has very minor flares when exposed to strep, and still has some pesky ocd issues.

 

We are considering high dose ivig for her- but right now are waiting to see how things go.

[sf_mom]

I wish it was 5 years from now and could say absolutely TIC free/no relapses. So far 110% in some areas and 95 to 98% (some transient TICS) in others. Until he is TIC free for years and there are no relapses or flares from exposures it is going to be difficult to say how effective IVIG was or anything else we are doing currently. He is much, much better in other areas that we didn't realize were related to PANDAS.

 

We are also consulting with a nutritionist that someone from this forum referred us to. In addition to IVIG we are doing high dose probiotics (helps to repair gut and manage ingested bacteria), Bentonite Clay (eliminate toxins), high dose B-12 (nerve damage) and fish oil.

 

I thought I'd include this article recently received about probiotics and its benefits.... its very interesting with regards to auto-immune and anti-inflammation disorders.

 

http://markbrudnak.com/Articles/probiotics...immune_anti.htm

 

-Wendy

[momto2pandas]

Can you expand upon the ways that he is better that you never knew were related to PANDAS? I have seen a bunch of people talk about that and always wonder to what exactly they are referring. I wonder if there are traits in myself and my kids that are related to PANDAS but that I don't recognize as such... I'm guessing there is a lot of that in my 3 year old that for now is "toddler stuff" but that I will come to recognize is more than that.

 

I wish it was 5 years from now and could say absolutely TIC free/no relapses. So far 110% in some areas and 95 to 98% (some transient TICS) in others. Until he is TIC free for years and there are no relapses or flares from exposures it is going to be difficult to say how effective IVIG was or anything else we are doing currently. He is much, much better in other areas that we didn't realize were related to PANDAS.

 

We are also consulting with a nutritionist that someone from this forum referred us to. In addition to IVIG we are doing high dose probiotics (helps to repair gut and manage ingested bacteria), Bentonite Clay (eliminate toxins), high dose B-12 (nerve damage) and fish oil.

 

I thought I'd include this article recently received about probiotics and its benefits.... its very interesting with regards to auto-immune and anti-inflammation disorders.

 

http://markbrudnak.com/Articles/probiotics...immune_anti.htm

 

-Wendy

[dcmom]

mom2pandas-

 

To answer your question about things improving that we didn't attribute to pandas. We had this also. DD had acute, debilitating onset at age 5 1/2. I now think maybe she had it mildly for the year or so before. She was a little bit rigid, inflexible in personality, stubborn, and always had to have things "just right". She is very smart but was always somewhat resistant to schoolwork, reading and writing. She was never as good as her sister in memorizing stuff- abc's, days of the week, song lyrics. This stuff was not part of her sudden onset- but it was gone immediately following plasma pheresis. Those few weeks after, she was actually an easy going kid, read a lot, and instantly memorized things we had been working on (without success) for months.

 

Most of those gains have stayed, except for the easygoing part. Since her relapse, she just hasn't gotten that flexibility back. I imagine it is a bit of "just right" ocd. It isn't a huge issue, though.

[sf_mom]

Its hard to explain... we feel he was sick much longer then we knew. We have seen huge improvement in restlessness, attention, ability to listen, reasoning, mood switching, temper, clarity, memory, vision, happiness, ability to laugh, kindness, etc. I don't know but its all the low level stuff that might be attributed to ADD, AD/HD type stuff.

 

He said to me the other day and more than once..... 'he has happiness in his heart'. He is a happy kid.

 

 

 

 

Can you expand upon the ways that he is better that you never knew were related to PANDAS? I have seen a bunch of people talk about that and always wonder to what exactly they are referring. I wonder if there are traits in myself and my kids that are related to PANDAS but that I don't recognize as such... I'm guessing there is a lot of that in my 3 year old that for now is "toddler stuff" but that I will come to recognize is more than that.

 

I wish it was 5 years from now and could say absolutely TIC free/no relapses. So far 110% in some areas and 95 to 98% (some transient TICS) in others. Until he is TIC free for years and there are no relapses or flares from exposures it is going to be difficult to say how effective IVIG was or anything else we are doing currently. He is much, much better in other areas that we didn't realize were related to PANDAS.

 

We are also consulting with a nutritionist that someone from this forum referred us to. In addition to IVIG we are doing high dose probiotics (helps to repair gut and manage ingested bacteria), Bentonite Clay (eliminate toxins), high dose B-12 (nerve damage) and fish oil.

 

I thought I'd include this article recently received about probiotics and its benefits.... its very interesting with regards to auto-immune and anti-inflammation disorders.

 

http://markbrudnak.com/Articles/probiotics...immune_anti.htm

 

-Wendy

[mama2alex]

I marked improved, but not cured. However, we are only 9 weeks post IVIG and I've been told full healing takes around a year. At this point, he is 70% better overall, but I can still see small reactions to colds, viruses. All in all, we are SO glad we got him IVIG- all our lives have drastically improved compared to last summer and fall.

[pixiesmommy]

We are 6 months post-IVIG now and have seen worlds of difference. I will post more and vote in the poll after we are finished with this bout of strep (our first post-IVIG) since I am not yet sure what this will bring on.

[sf_mom]

DC Mom,

 

I responded prior to reading your reply and it is amazing how we have seen similar improvement in certain areas. I would classify our son as easy going too. I often tell people 'PANDAS' is like PMSing 24/7, you are easily frustrated, mood switch, angry, think you are right, will argue any point, etc.

 

mom2pandas-

 

To answer your question about things improving that we didn't attribute to pandas. We had this also. DD had acute, debilitating onset at age 5 1/2. I now think maybe she had it mildly for the year or so before. She was a little bit rigid, inflexible in personality, stubborn, and always had to have things "just right". She is very smart but was always somewhat resistant to schoolwork, reading and writing. She was never as good as her sister in memorizing stuff- abc's, days of the week, song lyrics. This stuff was not part of her sudden onset- but it was gone immediately following plasma pheresis. Those few weeks after, she was actually an easy going kid, read a lot, and instantly memorized things we had been working on (without success) for months.

 

Most of those gains have stayed, except for the easygoing part. Since her relapse, she just hasn't gotten that flexibility back. I imagine it is a bit of "just right" ocd. It isn't a huge issue, though.

[momto2pandas]

Thanks so much for this info - this is exactly the kind of thing I have been wondering about. Both of my kids, although far from meeting any DSM criteria these days, have "personality" things that I wonder about constantly - ds6 is wound a little tight, judgmental, sensitive; ds3 has difficulty with some reading/writing stuff that he learns and loses, and doesn't listen well. For example, ds3 will write pretty well (for age 3) for a while, and then suddenly do mirror images or put letters out of order. He will read ok (simple words) for a while, and then completely forget the difference between"b" and "d" or fail to recognize his name. Granted he is 3 but my spidey sense tells me that something is going on. For both of them, all of this stuff varies in degree over time and my dh and I are are constantly analyzing "good days" and "bad days." Whether these traits are just "who they are" vs. part of a disease process has strong implications for how aggressively we want approach treatment.

 

Then there is the issue of GETTING treatment. What doctor will prescribe based on a 3 year old who sometimes writes his letters backwards or a 6 year old who can be too bossy, when by all accounts they are functioning well?

 

These things worry me constantly but I do have to say that, compared to how things could be and have been in the past, I'm very blessed to have kids who are doing as well as they are at least for now.

 

Fascinating stuff as it begs the question of where personality actually comes from. How much of neurotic-type personalities, gifts and difficulties in learning, etc. has actually to do with responses to immune challenges and immunologic history?

 

 

 

mom2pandas-

 

To answer your question about things improving that we didn't attribute to pandas. We had this also. DD had acute, debilitating onset at age 5 1/2. I now think maybe she had it mildly for the year or so before. She was a little bit rigid, inflexible in personality, stubborn, and always had to have things "just right". She is very smart but was always somewhat resistant to schoolwork, reading and writing. She was never as good as her sister in memorizing stuff- abc's, days of the week, song lyrics. This stuff was not part of her sudden onset- but it was gone immediately following plasma pheresis. Those few weeks after, she was actually an easy going kid, read a lot, and instantly memorized things we had been working on (without success) for months.

 

Most of those gains have stayed, except for the easygoing part. Since her relapse, she just hasn't gotten that flexibility back. I imagine it is a bit of "just right" ocd. It isn't a huge issue, though.

[dcmom]

Momto2pandas:

 

DD wrote lots of letters, and most numbers backwards, and had huge problems with the teen numbers. This literally changed in a week- post pex. All of a sudden, she could write to 100 perfectly, without help, knew the days of the week in order, and sat and read for over an hour.

 

I really felt, she learned everything, but wasn't able to get it all out, or transfer it to paper, during pandas. Immediately after pex, she tested very advanced in math.

 

We are now having some issues with b and d. She has some trouble with simple sight words- but can sound out really long words. We definately lost a little ground since plasma pheresis- but for the most part she is great.

 

Since your kids are doing well- it is hard to know what you could do. Have you thought of a steroid burst? I plan on trying one for my dd when school (and illness season) is over. I guess you just need to keep a close eye on them