method of IVig
-
-
May 3, 2008 at 3:19 am
Josh will be started monthly IVig soon. I am wondering what kind of IV line are most common when you how regular IV treatment. PICC lines, Portacaths or restarting peripheral line each month? A second question is if any one uses any alternative treatment with traditional or alone.
JoAnn -
May 3, 2008 at 10:31 am
Hi JoAnn,
Kevin is 11, we have a port, much easier than when we used to gain venous access monthly. Usually by the third day a vein would blow and we would have to start a new iv. With the port (after the first month of surgery and swelling goes down) the stick is pretty uneventful with some emla cream. Everything is under the skin, as opposed to a broviac which has a little tube that stays out. Other than the scar on his chest and the small mark on his neck, you would not even notice the unit. It is a little bigger than a 2 liter soda bottle cap.We don’s take any other alternative meds, not even supplements, but we do eat alot of strawberries as they aid in inflamation reduction, or so I have read. Can’t beleive everything you read!
Once you start ivig, there will be other over the counter meds to help with the reactions you sometimes get from ivig. We take 2 reg. str. tylenol, benadryl, and aleve around the clock, all 4 days and 2 days post. Of course a slow flo rate and fluids too. Good luck, with every monthly infusion it gets easier and is now starting to just be a regular cycle in our lives, no choice, it has to be done, so we just try to make the best of it.
Dawn Kevies mom -
May 3, 2008 at 10:31 am
Hi JoAnn,
Kevin is 11, we have a port, much easier than when we used to gain venous access monthly. Usually by the third day a vein would blow and we would have to start a new iv. With the port (after the first month of surgery and swelling goes down) the stick is pretty uneventful with some emla cream. Everything is under the skin, as opposed to a broviac which has a little tube that stays out. Other than the scar on his chest and the small mark on his neck, you would not even notice the unit. It is a little bigger than a 2 liter soda bottle cap.We don’s take any other alternative meds, not even supplements, but we do eat alot of strawberries as they aid in inflamation reduction, or so I have read. Can’t beleive everything you read!
Once you start ivig, there will be other over the counter meds to help with the reactions you sometimes get from ivig. We take 2 reg. str. tylenol, benadryl, and aleve around the clock, all 4 days and 2 days post. Of course a slow flo rate and fluids too. Good luck, with every monthly infusion it gets easier and is now starting to just be a regular cycle in our lives, no choice, it has to be done, so we just try to make the best of it.
Dawn Kevies mom -
May 3, 2008 at 10:38 am
If I remember correctly he was relapsing after 24 days. Why is he only getting IVIG 1 time a month? Did you talk to his dr about doing IV solumedrol instead of oral prednisone? I ask because prednisone has MANY bad more bad side effects than solumedrol.
As for your questions…
Each person has their own preference as to how they get their IVIG. Emily has a port because she is a VERY hard stick. It would take 7 attempts to get a good IV on her.
I think it’s something that you need to present all of the options to Josh about & ask which he would like best at this time.
Personally, since he is 15 & just starting on this road, I would do IV’s each time. If after awhile he doesn’t want to do them anymore then I would suggest exploring getting a port.
Many people here take vitamins daily. You need to talk with is dr’s before adding any vitamins to the mix though.
I’ve read that Green Tea helps with inflammation so Emily drinks a green tea called Fuze. It’s in a tall glass bottle in the regular grocery store. It goes on sale a lot for $1 a bottle. I drink it too & it helps make my skin look really nice. Josh might like that benefits, since he is a teenager.
Good luck,
Kelly
-
