IVIG

[P_Mom]

Hi everyone,

I hope all is going well. We are setting a date for IVIG for my younger son. Of course, this makes me nervous, but, also excited at the hope of relieving my son of this disorder. Please, for those who have done IVIG..what is your take on it? Do you feel it has helped your child? How was the overall experience?

 

Thank you!

 

Kelly

[amy s]

Hi everyone,

I hope all is going well. We are setting a date for IVIG for my younger son. Of course, this makes me nervous, but, also excited at the hope of relieving my son of this disorder. Please, for those who have done IVIG..what is your take on it? Do you feel it has helped your child? How was the overall experience?

 

Thank you!

 

Kelly

 

It is a nerve wracking decision to do IVIg. For us, it was a life saver and I am thrilled for my child. Today is her 2nd day back to school (full day and without me) and I am just so proud of her! She is almost completely back to her old self and our whole family is so much more relaxed and happy. It took us about 10 days to see REAL BIG improvement...but we saw some improvement in a couple days afterward. She was pretty fatigued for several weeks afterward and I'm not sure why but even maybe up to a month or more she seemed pretty fatigued. Her experiences during the IVIg were difficult, only because of some pretty bad raging going on (several docs & nurses in the immediate vicinity wanted to send her to a 'higher level of care') but our doc pushed for us to stay and continue it there. She was fatigued and irritable and nervous the whole time. Have him drink plenty of water in the days/weeks before and after! It is dehydrating. My dd had a pretty bad case of sudden constipation right in the week and a half afterward which must have been complicated by not enough water. My dd did not have any nausea or vomitting or headaches like other people talk about. Good luck! Keep us posted.

[michele]

Kelly. It has been awhile since we have heard from you here. Have things gotten worse with your boy? What are you currently doing? Have you gone to Chicago and seen Dr. K? Did you try the steroid burst yet? How did it go? Will Dr. K do the IVIG for him?

 

I really hope this works for you. There is a lot of activity on the IVIG lately on this board. It has really taken off in the past six months. I wonder why Sweedo is not supporting it as the treatment of choice yet? I have yet to find another Dr. then Dr. K wanting to take this action plan. I guess Dr's here in OH must be behind on the current research.

All the best.

Michele

Hi everyone,

I hope all is going well. We are setting a date for IVIG for my younger son. Of course, this makes me nervous, but, also excited at the hope of relieving my son of this disorder. Please, for those who have done IVIG..what is your take on it? Do you feel it has helped your child? How was the overall experience?

 

Thank you!

 

Kelly

 

It is a nerve wracking decision to do IVIg. For us, it was a life saver and I am thrilled for my child. Today is her 2nd day back to school (full day and without me) and I am just so proud of her! She is almost completely back to her old self and our whole family is so much more relaxed and happy. It took us about 10 days to see REAL BIG improvement...but we saw some improvement in a couple days afterward. She was pretty fatigued for several weeks afterward and I'm not sure why but even maybe up to a month or more she seemed pretty fatigued. Her experiences during the IVIg were difficult, only because of some pretty bad raging going on (several docs & nurses in the immediate vicinity wanted to send her to a 'higher level of care') but our doc pushed for us to stay and continue it there. She was fatigued and irritable and nervous the whole time. Have him drink plenty of water in the days/weeks before and after! It is dehydrating. My dd had a pretty bad case of sudden constipation right in the week and a half afterward which must have been complicated by not enough water. My dd did not have any nausea or vomitting or headaches like other people talk about. Good luck! Keep us posted.

[Pudgeo]

Kelly, Every child is so different.. My son had 3 IVIG and we only saw very minor symptom improvement. But I feel he had gone so long mis-diagnosed(over a year) and he was older, 10 yrs old. I really feel that anti-biotics should be tried first to regulate the immune system. IVIG is really a very safe medical procedure. Sarah