Low dose IVIG on 4/28

[Suzan]

dd8 had her low dose IVIG (4. per kg). The doc had us start reducing her zith (500 mg daily to 250 mg daily) on 5/6. I could see the negative difference by the next day and it's gotten worse. Separation anxiety, worry, ODC (excessive wiping, frantic need to have her space to be organized) not wanting her sister to touch her, leg pain. These were all good before reducing the zith.

 

She has testing at school this week so I increased the zith tonight and hopefully it will kick in fast enough so she can manage this week. The neuro will give another IVIG, this one an increased dose but still not Dr. K's dose yet.

 

I do have one question which is, after IVIG, could we still see a benefit (even at this low dose) later this month? Or would you assume that the inability to reduce the zith now indicates that it did not take?

 

Thanks,

 

Susan

[peglem]

My daughter had 2 LD IVIGs 3 weeks apart. She was fairly stable (or much better anyway) on 500mg zith every other day. After the 1st IVIG she got a little worse, we waited it out, and the 3rd week after she started improving. Then we had the 2nd one and it was really crash and burn. Not the worst she's ever been but much worse than before IVIG. We've not seen improvement and its been 4 weeks. We have not reduced abx. Her doc suspects that w/ her immune system being so lame, she's got chronic infections that we see no immune response to and the IVIG may be fighting that. So, now we are collecting a bunch of BM specimens because before he adjusts abx, he wants to make sure he knows what we are dealing with.

Anyway, she's scheduled for 1.5 mg/kg this Wednesday and Thursday. I'm tired.

[melanie]

My daughter had 2 LD IVIGs 3 weeks apart. She was fairly stable (or much better anyway) on 500mg zith every other day. After the 1st IVIG she got a little worse, we waited it out, and the 3rd week after she started improving. Then we had the 2nd one and it was really crash and burn. Not the worst she's ever been but much worse than before IVIG. We've not seen improvement and its been 4 weeks. We have not reduced abx. Her doc suspects that w/ her immune system being so lame, she's got chronic infections that we see no immune response to and the IVIG may be fighting that. So, now we are collecting a bunch of BM specimens because before he adjusts abx, he wants to make sure he knows what we are dealing with.

Anyway, she's scheduled for 1.5 mg/kg this Wednesday and Thursday. I'm tired.

 

 

Were having our 6th IV friday 1g so higher than some lower than others .I do see huge improvmrnts with danny .I think sometimes i forget how horrible things were.I almost had to send him to an institution because his rages were soooooo bad.there are still times when I think hes not getting enough because I read some stories on this site.I also realize that although Im not using Dr.Ks dosage my md is doing what she feels is the correct amout of IVIG for my son.So slow and steady progress is better than no progress.Danny is also on 250 mg azith and hes 140lbs and 16 yrs old.Lower than most on this site.I dont know what your md is plannning but if you dont trust him you must look elsewhere.I do question my md (she is insistant)that what shes doing is right so I have to believe 30 yrs of practice and all the board certs and all of her research says she knows what shes doing.

 

melanie

[mom md]

I think the IVIG way overides any immune modulating effects that the azith might be helping. Also the azith half life is 68 hours so you are not seeing the effect of decreasing the dose yet. I think you are seeing the post IVIG flare that indicates the IVIG is doing it's job. Our first flare lasted a good 7-10 days. Hang in there and know the increase in symptoms is actually a sign the IVIG is working.

[melanie]

Mommd

 

Are you saying that azith is less importrant if your doing the IVIG

Melanie

[Suzan]

I think the IVIG way overides any immune modulating effects that the azith might be helping. Also the azith half life is 68 hours so you are not seeing the effect of decreasing the dose yet. I think you are seeing the post IVIG flare that indicates the IVIG is doing it's job. Our first flare lasted a good 7-10 days. Hang in there and know the increase in symptoms is actually a sign the IVIG is working.

 

Shoot, really? I think I am just not understanding this. I increased her zith to try to get us through this week of testing at school. You think I should try again to reduce this weekend and see how she does?

 

Susan