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almost 1 week post ivig


danddd

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Hi everyone, dd9 had ivig a week ago. it went smooth, and just like you guys said, it was sooooo nice to finally have trust, and let the doc do all the work. she did have migranes and vomiting at night on second day, but she got through it. i dont really believe it but her rages are already much better. she is resisting the urge to hurt me when she gets mad! (but we have traded that in and got some depression and sadness). she played with her sister today too! taking all of the meds and supplements is the hardest part for her. one day it took her 3 hrs to take the augmentin!

 

on another note, i myself am realeasing all of the stress now through tears. i held it all in during the treatment. maybe i am crazy, but it feels a bit like post-partum depression.......sad yet happy, yet nervous of change. ivig is so odd. such a simple procedure, but so many emotions attached to it.

 

thanks,

danddd

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You are so right about the emotions!!! I remember after the 2nd day of IVIG dropping off the rental car at O'Hare and both of us taking the shuttle to the airport with feelings like Sally Field in Not Without My Daughter seeing the American flag at the embassy....ok a little dramatic, but the feelings are very dramatic. Such a long journey literally, emotionally, for many of us our kid's entire childhoods wondering and researching "What's wrong and why?"

 

How can you not feel like an emotional dishrag after that? Then the weeks start to go by and you realize, you and your child may have reached a turning point, but the journey continues, it's not just 'over.' But the hopelessness begins to shrink the more distance you put behind you.

 

Best wishes and prayers for recovery!

jill

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sending cyber hugs and positive healing thoughts your way to you and your dd and family. this is a tough time but you are seeing improvement already! that is so wonderful!!

 

i completely understand the "grieving/depression" thing. i too finally melted down when all was said and done. it was like i had to be the strong one holding it all together while along searching the internet for endless hours night and day; phone calls with no results to many doctors; faxes, emails, and fights. it was almost like IVIG was the finish line (well at least I hope we can be that fortunate) and we have completed the two year marathon and now we can relax a little (or at least for the first time in a long time try too!) it is just hard to let down our guard and think for a moment that they might actually be ok now....

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we saw dr.k, it was great. insurance already denied our request, so I will soon start the appeal. we were not expecting to be able to have it done before school, so we were surprised when it was offered. it happened so fast, i couldnt wait and fight ins. first. i will keep at them though, it is not fair what they do to families.

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