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DS had his 4th HD IVIG two weeks ago. Last night he told me "why is this happening to me? It's getting worse!" He has been flipping out about little things and then kind of snapping out if it a few minutes later and saying "I'm sorry I flipped out, I don't know why I was so upset and I'm such an a$$".

 

Two questions:

1. Does this sound like maybe things are finally changing? Turning back the pages, etc?

 

2. I was supposed to start Reservatrol (Japanese knotweed, I believe) today? Should I hold off a few days?

 

Is there any documented info the turning the papes back? Anyone care to write an explanation?

I think I explained it to DH correctly.

 

Thanks as always,

T.Anna

DS15 - insomnia back a little too

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I know what you mean about what constitutes the "flipping back the pages". After our Ds had his IVIG, I was wondering the same thing. What I have understood is that you could see him exhibiting old behaviors that you have not seen in awhile. I did experience this with my Ds, but they were not totally linear. I was more like, "wow, have not seen that in awhile", and then it would go away. The amazing thing that I have experienced is that my ds's first symptoms were sudden bedwetting....and sure enough, in the past several weeks, his bedwetting has diminished about 90%. A far cry from 2 times a night. I don't understand this "flipping back the pages", but for some reason it seems to apply. I guess the first symptoms are the last to go is the working theory.

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I've been on this forum for almost 5 yrs and I still don't know what flipping of the pages is supposed to mean. Best I can tell, it's similar to a herx, a "worse before you get better" sort of phenomenon. That yes, you may see old behaviors you haven't seen in a while, maybe like reading a book backward. But I've yet to grasp any scientific explanation or even see it happen consistently among kids. Some kids seem to experience immediate relief, some see only very gradual improvement, some seem to have a horrible time of it. So I gave up. I have no idea what flipping of the pages is supposed to look like or mean.

 

As for the changes you see, it's interesting that you're at week 4. The half-life of donor antibodies is @3weeks. So physically, you may be seeing less and less donor antibodies having an effect on your son's own immune response. I think this may be why Dr B came up with his protocol of IVIG every 8 weeks. But just speculating and not saying whether it's a good idea or bad one.

 

IF what you're seeing is a "wearing off", then inflammation may be ramping up again, so I'd think starting an anti-inflammatory may be a good thing.

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I would suggest an anti-inflammatory as well.

 

I have seen significant decreases in raging and emotional lability within 20 minutes of dosing 3/4 tsp japanese knotweed tincture (DD was 75 lbs at the time) . Others have found ibuprofen to be helpful.

 

I don't think anti-inflammatories ever come amiss with our children.

Edited by rowingmom
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Glad I'm not the only one who doesn't understand the flipping back the pages. I looked for it with HD IVIG #1 and never quite got a handle on what it meant exactly or if we were experiencing it. DD seemed much better on day 1, but not as great on day 2. Then seemed pretty good for a while until we dropped her abx down to prophylactic dose, at which point she tanked. With HD IVIG #2 it was immediate, noticeable improvement. We're about two weeks out. I have no idea what accounts for the difference. It was a higher dose 2 g/kg over two days versus 1.5, she has been on tx dose of Augmentin for a year, and we're pumping her full of ibuprofen.

 

Hang in there.

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Thanks.

 

LLM, it was HD IVIG #4, but we are only today 2 weeks post IVIG, so prob. haven't reached half life yet.

 

RowingMom, thanks. I went to work before he was up (DH working from home) so I guess I'll try tomorrow am.

 

Qannie & Ifran, thanks! Really hoping that DS will see change and have more hope too.

 

Agnes26, DS is still on a ton of antibiotics, so hopefully we wont see regression.

 

 

Thanks again,

T.Anna

Edited by T.Anna
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