IVIG Approved (Mixed Emotions)

[tapiash]

My sons IVIG was approved. I thought I would be overwhelming with joy but I m not. I am scared and second guessing my decision. I have read so any negative posts about IVIG. My son is currently on steroids and extremely hyper. He also overheats in 80 degree weather. I am thinking I would rather pursue IVIG than keep him on steroids. Maybe I am just nervous about the procedure in general. It is a scary process. those who have had Ivig, please chime in. Did any of you feel the same way?

[Fixit]

i just rejected for ins...and even though i wasn't expecting approval, i am upset...

and if i got approval, i know i would feel exactly like you do.!!!

 

PS...what did you get approval based on????

Edited June 29, 2010 by Fixit

[tapiash]

i just rejected for ins...and even though i wasn't expecting approval, i am upset...

and if i got approval, i know i would feel exactly like you do.!!!

 

PS...what did you get approval based on????

 

Sorry to hear you were denied. Keep fighting. So many emotions we deal with on a daliy basis. It is tough. I am not positive but I think it was auto immune deficiency and encephalitis. My doctor also wrote a letter to the insurance company stating it was medically necessary. Coram health also pulled strings. We are having the procedure done in NM and our doctor is in Ca. Where do you live?

[Fixit]

i just rejected for ins...and even though i wasn't expecting approval, i am upset...

and if i got approval, i know i would feel exactly like you do.!!!

 

PS...what did you get approval based on????

 

Sorry to hear you were denied. Keep fighting. So many emotions we deal with on a daliy basis. It is tough. I am not positive but I think it was auto immune deficiency and encephalitis. My doctor also wrote a letter to the insurance company stating it was medically necessary. Coram health also pulled strings. We are having the procedure done in NM and our doctor is in Ca. Where do you live?

 

There is a Coram pretty close to us.....

the coordinator seemed like he would help...he called the ins and said he needed a local doc to order...WE are in the valley of non-believers(with the not so secret eyeroll greeting)...ATlanta GA

[peglem]

My sons IVIG was approved. I thought I would be overwhelming with joy but I m not. I am scared and second guessing my decision. I have read so any negative posts about IVIG. My son is currently on steroids and extremely hyper. He also overheats in 80 degree weather. I am thinking I would rather pursue IVIG than keep him on steroids. Maybe I am just nervous about the procedure in general. It is a scary process. those who have had Ivig, please chime in. Did any of you feel the same way?

What I decided is w/o IVIG, my daughter was certain to have more horrible exacerbations. I knew that IVIG might make things worse before better and there was no guarantee that it would cause improvement either. But, because of the 1st certainty, I had to try anyway. We did not see nearly the degree of negative reaction that many on the forum have- but maybe that's because we didn't have much room to go deeper in the "worse" direction. Its been a boon for us, and looks like we are headed for monthly.

[jayjay]

My sons IVIG was approved. I thought I would be overwhelming with joy but I m not. I am scared and second guessing my decision. I have read so any negative posts about IVIG. My son is currently on steroids and extremely hyper. He also overheats in 80 degree weather. I am thinking I would rather pursue IVIG than keep him on steroids. Maybe I am just nervous about the procedure in general. It is a scary process. those who have had Ivig, please chime in. Did any of you feel the same way?

We are probably one of the negative posts you are talking about. He is almost 5 weeks out. Our problem was we just could not keep him well after IVIG. The stomach bug and a sinus infection hit him hard right after it. It didn't even get a chance to work. We seem to be having some improvment the last couple of days, not perfect, but going in the right direction. Not sure if it is the IVIG kicking in or the new antibiotic. Even with our slow progress, I would do it again if insurance approved it. We are still fighting that fight. He will also be having a T&A soon. I feel like I have to do everything I can to get my son back. All of this is so hard and scary. I am constantly second guessing myself. I just know that with our situation, we had to do it, it was bad enough to feel like we really didn't have a choice.

[tapiash]

My sons IVIG was approved. I thought I would be overwhelming with joy but I m not. I am scared and second guessing my decision. I have read so any negative posts about IVIG. My son is currently on steroids and extremely hyper. He also overheats in 80 degree weather. I am thinking I would rather pursue IVIG than keep him on steroids. Maybe I am just nervous about the procedure in general. It is a scary process. those who have had Ivig, please chime in. Did any of you feel the same way?

We are probably one of the negative posts you are talking about. He is almost 5 weeks out. Our problem was we just could not keep him well after IVIG. The stomach bug and a sinus infection hit him hard right after it. It didn't even get a chance to work. We seem to be having some improvment the last couple of days, not perfect, but going in the right direction. Not sure if it is the IVIG kicking in or the new antibiotic. Even with our slow progress, I would do it again if insurance approved it. We are still fighting that fight. He will also be having a T&A soon. I feel like I have to do everything I can to get my son back. All of this is so hard and scary. I am constantly second guessing myself. I just know that with our situation, we had to do it, it was bad enough to feel like we really didn't have a choice.

 

I am so sorry to hear about your son but I am glad you are starting to see some improvements. If you are like me, anything positive is a step in the right direction. For us the insurance approval was a breeze. I did absolutely nothing to get approved. Our pediatrician handled it all. It was nice. I almost feel guilty feeling the way I do because so many on this forum have been denied approval. We will go through with it, but I am just nervous and scared. PANDAS has taken a toll on our entire family. I pray we are on our way to recovery. I hope your family is on its way to recovery also.

[Buster]

I know exactly this feeling and this was a topic of considerable discussion in our family both before, during and after IVIG. This disease is a funny disease -- full of self-doubt for parents, hoping we're making the right choices. The notion of exposing our child to potentially an unknown virus or disease from the blood product (IVIG) caused significant concerns. Post IVIG -- especially the first 2 weeks -- we really wondered if we did the right things. The symptoms were terrible afterwards.

 

Despite knowing that this could happen, we weren't really mentally prepared for it (okay, I wasn't -- dw says she was). It really made us wonder whether we had made the right choice. Then week 3 came along and everything got way better and then 6 months of calm. I'm sure some doctor will say that it was all a coincident, but frankly 1 month post IVIG was when I really understood how bad things had been and was so grateful for the decision we made.

 

Bottom line, line up your support folks -- make sure you and your spouse are well aligned -- get a few of us on the board in your fast PMs. Be prepared that doubt will creep in, but you've done all the research, you are following the best advice possible, IVIG is well tolerated by most and although there is exposure -- the risk benefit analysis is really where you should focus. If you've got good clinical evidence for PANDAS, if the symptoms are getting bad enough you don't see antibiotics or other things improving situation, then IVIG is the discussion point. At least at the moment you have the option.

 

Wishing you the best,

 

Buster

 

My sons IVIG was approved. I thought I would be overwhelming with joy but I m not. I am scared and second guessing my decision. I have read so any negative posts about IVIG. My son is currently on steroids and extremely hyper. He also overheats in 80 degree weather. I am thinking I would rather pursue IVIG than keep him on steroids. Maybe I am just nervous about the procedure in general. It is a scary process. those who have had Ivig, please chime in. Did any of you feel the same way?

[momaine]

Buster , This was timely for me to read as we are ten days post ivig and I was in need of reading something positive. thanks for posting it. Things are definitely worse right now but we've also stopped Advil, Prednisone, and augmentin, and considering those changes, not so bad really. Dd is still on Zith, and celexa, as well as singulair and fluconizole for the yeast. Some things are harder that were easier and some things a little less sever, but overall, despite the fact that some things are worse, her emotions are more stable than I would expect with this level of repeating going on. Looking forward to posting more as things progress.

Angela

 

I know exactly this feeling and this was a topic of considerable discussion in our family both before, during and after IVIG. This disease is a funny disease -- full of self-doubt for parents, hoping we're making the right choices. The notion of exposing our child to potentially an unknown virus or disease from the blood product (IVIG) caused significant concerns. Post IVIG -- especially the first 2 weeks -- we really wondered if we did the right things. The symptoms were terrible afterwards.

 

Despite knowing that this could happen, we weren't really mentally prepared for it (okay, I wasn't -- dw says she was). It really made us wonder whether we had made the right choice. Then week 3 came along and everything got way better and then 6 months of calm. I'm sure some doctor will say that it was all a coincident, but frankly 1 month post IVIG was when I really understood how bad things had been and was so grateful for the decision we made.

 

Bottom line, line up your support folks -- make sure you and your spouse are well aligned -- get a few of us on the board in your fast PMs. Be prepared that doubt will creep in, but you've done all the research, you are following the best advice possible, IVIG is well tolerated by most and although there is exposure -- the risk benefit analysis is really where you should focus. If you've got good clinical evidence for PANDAS, if the symptoms are getting bad enough you don't see antibiotics or other things improving situation, then IVIG is the discussion point. At least at the moment you have the option.

 

Wishing you the best,

 

Buster

 

My sons IVIG was approved. I thought I would be overwhelming with joy but I m not. I am scared and second guessing my decision. I have read so any negative posts about IVIG. My son is currently on steroids and extremely hyper. He also overheats in 80 degree weather. I am thinking I would rather pursue IVIG than keep him on steroids. Maybe I am just nervous about the procedure in general. It is a scary process. those who have had Ivig, please chime in. Did any of you feel the same way?

[thereishope]

tapiash, You've been through a whirlwind of emotions lately. Having those tell you it may not be PANDAS, to having the Cunningham test done and get your confirmation, and now IVIG. Take a deep breath, remember the turmoil you and your family has been through. Remember the good times before PANDAS surfaced, remember the worst PANDAS has given you and I think your gut will tell you what to do and you will find your answer and feel better making it.

 

If/when you do IVIG, ask what antibiotics will be prescribed as a preventative measure post procedure and post on here what the answer is.

Edited July 5, 2010 by Vickie

[laurenjohnsonsmom]

Tapiash,

 

Our story has some similarities to Buster's as with Lauren, almost 3 weeks to the day we unexpectedly saw Lauren's social anxiety/anxiety drastically improve instantly almost 90+% from her "norm". Prior to her "sneezing" manifestation last fall Lauren suffered from severe social anxiety/general anxiety but we had no idea it was PANDAS related (didnt even know what PANDAS was-bears?) until we saw this drastic improvement after her first ivig. That was a "bonus" to say the least, on top of the fact that the ivig stopped her sneezing tics in their tracks! With that said, when you see backslides (mild or severe, long lived or short, new tics and/or turning back the pages you say.."what the "blank" was I thinking"!?!

 

As far as having to make this decision I can tell you I can soooo relate as it is the worst feeling in the world to decide on a medical procedure (even with low risks) that nobodys quite sure will work or not. When Lauren was sneezing every other breath (completely non-fuctioning) I was desperate/would have done anything (hence why we were on tv). Luckily the antibiotics and steroids slowed things down by about 50% quickly but at 50% percent you have to ask yourself, "is the glass half empty or half full"? We chose ivig for many reasons (Lauren was not sustaining her improvement as we decreased the steroids, we felt the antibiotics/steroids were only treating the symptoms not eradicating the immune assault on her body and Lauren's IGg levels were low/immune compromised) but we chose this route most importantly because we made the decision collectively "with" her doctor in who we trust (even though he or anyone else doesn't have all the answers yet in this mysterious disease). 

 

As a mother you worry and will only blame yourself if things don't turn out as expected but if you don't try you will always wonder "what if". Know in your heart that your doing the best with you know for your daughter and feel confident in your decision even when you're not confident in the outcome. You're doing your very best. It's a terrible burden and decision to make as so many of us already have and will continue to in the future but know you're not alone in the club and we all support you in whatever decision you make. Best of luck to you and your family.

 

Lynn

www.pandasresourcenetwork.org

"educate, communicate, cure"

 

I know exactly this feeling and this was a topic of considerable discussion in our family both before, during and after IVIG. This disease is a funny disease -- full of self-doubt for parents, hoping we're making the right choices. The notion of exposing our child to potentially an unknown virus or disease from the blood product (IVIG) caused significant concerns. Post IVIG -- especially the first 2 weeks -- we really wondered if we did the right things. The symptoms were terrible afterwards.

 

Despite knowing that this could happen, we weren't really mentally prepared for it (okay, I wasn't -- dw says she was). It really made us wonder whether we had made the right choice. Then week 3 came along and everything got way better and then 6 months of calm. I'm sure some doctor will say that it was all a coincident, but frankly 1 month post IVIG was when I really understood how bad things had been and was so grateful for the decision we made.

 

Bottom line, line up your support folks -- make sure you and your spouse are well aligned -- get a few of us on the board in your fast PMs. Be prepared that doubt will creep in, but you've done all the research, you are following the best advice possible, IVIG is well tolerated by most and although there is exposure -- the risk benefit analysis is really where you should focus. If you've got good clinical evidence for PANDAS, if the symptoms are getting bad enough you don't see antibiotics or other things improving situation, then IVIG is the discussion point. At least at the moment you have the option.

 

Wishing you the best,

 

Buster

 

My sons IVIG was approved. I thought I would be overwhelming with joy but I m not. I am scared and second guessing my decision. I have read so any negative posts about IVIG. My son is currently on steroids and extremely hyper. He also overheats in 80 degree weather. I am thinking I would rather pursue IVIG than keep him on steroids. Maybe I am just nervous about the procedure in general. It is a scary process. those who have had Ivig, please chime in. Did any of you feel the same way?