Steroids during IVIG treatment?

[bulldog24]

Going to get IVIG for my son. His last 2 he didnt get steroids. He was fine. That was at another place. I am not digging the steroids since my son has Lyme.

 

Someone fill me in.

[peglem]

Mine gets IVIG every 3 weeks w/ no steroids either. But, my guess would be that steroids are given to ameliorate possible allergic reaction and to keep inflammation down. W/ High dose the inflammation part makes no sense to me because HD is supposed to be anti-inflammatory anyway, isn't it?

[bigmighty]

Funny. Steroids is what put DS into his current remission. In spite of remission, Dr. B. still wants to proceed with multiple IVIGs due to low overall IgG. He says that this will probably bring a return of the OCD and other PANDAS symptoms. We had heard that steroids during IVIG was a possibility, and inquired about it (as we hoped this would keep the current remission). Dr. B. said it was not possible for DS to have steroids with IVIG. Maybe his labs/circumstances are different. We actually want steroids with IVIG, but have been told it is not an option.

 

I found it interesting that we were warned that DS's PANDAS symptoms will likely all return with another round of IVIG. Another poster here said her DD is symptom free and Dr. B. wants to do a few more IVIGs, even though no problematic labs. If it is really true that more IVIG is likely to end the remission, what would be the benefit of doing that? I definitely am confused about some things.

[Kiera]

I'm presuming the steroid is just to reduce temporary inflammation that causes the headache post ivig like peglem said. As regards HD ivig being anti-inflammatory, yes it is, but we're talking over the long haul. HD IVIG can take months to do it's thing as healing takes place in the brain. I'm guessing it's just this facility's policy since most kids get the severe HA, you can always ask, and refuse since your ds doesn't seem to suffer from it. Good luck!

[Kimflow]

We too were struggling with the steroids/no steroids question. The info. I got back from others when I posted my question was that some use it, some don't. Lyme IgM bands 41 and 66 only came back positiv. Then we did CD 57 which was 24 highly suggestive of TBI. He already has autism and pandas that is unresponsive to abx. Then I read that CD 57 in young children is unreliable so on to get Igenex test done tomorrow for further comfirmation. Still we are lined up for IVIG next week for Pandas, synde. chorea. We have had some abx treatment for pandas/lyme and we have to help his immune system calm. He came back some from teh initial pandas strep throat episode but then the tonsillectomy has really screwed us up. Immune system in worse flare.

 

I think based on info. I have received through my searches and posts, we will be getting ordered iv steroid to prevent the possible headache. Was told that the 2 doses of steroids were not enough to flare Lyme. Sometimes no matter how much you research, it always feels like a roll of the dice.

 

I have to say I am not that comforted now that I see the one poster say Dr. B said IVIG will BRING pandasocd symptoms. back.

[bigmighty]

Kimflow - remember to hydrate like crazy before, during and after IVIG for about six to seven days in total. Like an extra 8 ounces of liquid every 90 minutes during waking hours.

[bulldog24]

I am hoping to talkmy way out of the steroids when we get there.

 

Otehrwise IDK.

 

I hate to say it like this but I would rather my son have a headache than get steroids.

 

I just dont think it makes sense.

 

This is with dr, b as well.

 

I am trying like heck to get IVIG around here but its not happening fast enough

[Kimflow]

Bigmighty,

 

Thanks for the water reminder. Any other tips......Ibuprofen and maybe Benadryl to prevent vomiting.

 

Don't worry...this weekend, I will write my list of things to remember to do...much like I did for his tonsillectomy.

The list keeps me on track during what could be stressful time and also it makes me feel like I have some control :-).

 

I can't say it enough times....the tonsillectomy really messed us up....(despite IV antibiotics intraop and also postop) .....maybe in the long run, it will have helped as there was still bunches of alpha strep and many other bacteria in there despite months of different antibiotics. Maybe it would serve as more proof for insurance company too that he has issues in case they balk at more IVIG or something like that. I just feel lucky that we HAVE that IVIG to follow up with. Maybe we are just getting worn out but he seems worse this tonsillectomy flare than he did the original flare. Our family is feeling the stress.

 

K

[bigmighty]

K - So sorry it turned out this way. DS has not had his tonsils removed because (even though we suspect that there is remaining infection) we just can't bring ourselves to rock the boat at this time. Maybe in the future, we will feel differently. Very glad you have the IVIG lined up.