Re: IVIG Reaction Update

[Guest guest]

, are they changing anything for next time?  After my son's bout of

aseptic meningitis last month, they're doing IV fluids prior to the infusion,

motrin and benadryl.  I can't seem to get them to use steroids.  Also slowing

down the rate since they were up to 50ml/hr.  I frankly don't understand why

they would not use steroids. 

Wow, 36hrs post infusion?  My son started vomiting at 16hr post infusion. 

Maybe

I'll need to keep him home from school just in case.  What a pain, but the

immunoglobin does seem to be helping him.

________________________________

From: Herzberg <skgcifamily@...>

Sent: Mon, January 3, 2011 6:37:37 PM

Subject: RE: IVIG Reaction Update

 

Sue,

My son was given Prednisone, Benadryl and Tylenol as pre-I fmeds. He is 80lbs

and was given 40mg of the pred. Our max rate was 30ml/hr. I asked for a

fluid bolus ahead of time and our doctor acted like I was crazy so we didn’t

do it. His headache and stiff neck and also loss of balance and decreased

alertness started about 36 hours after we finished his infusion.

My son has to have his IVIG every 3 weeks so I’m not sure how ½ doses would

work with that. I hate to do it more often due to the trauma of the IV’s

(we’ve had tons of issues starting them lately), but I also don’t want him

getting really sick afterwards. I guess we will see what happens after this

next infusion and go from there. He had ½ doses a week apart to begin with

and had no after effects.

Thanks for the input. I hope your son has better luck on Hizentra!

_____

From: [mailto: ] On Behalf Of

Sue Bordelon

Sent: Monday, January 03, 2011 3:33 PM

Subject: Re: IVIG Reaction Update

My son had a reaction in March with severe headache etc...and then in April

after IVIG, developed aseptic meningitis....it started a few hours after the

IVIG was finished, after his port was de-accessed.

He got a severe headache, started having projectile vomiting, photophobia

(he couldn't stand any lights on), then he couldn't speak clearly and was

confused, and had ataxia, he couldn't walk straight. We took him to the ER,

he was worsening, and had a seizure!

They gave him 2 boluses of Normal Saline IV, IV steroids, admitted

him....continued the steroids and IV fluids for a few days. The brain CT

showed he had some swelling of his brain. He was very lethargic and this

continued for about 4 days, then he got better....was in the hospital for 5

days.

Since then he's had 1/2 dose of the IVIG every 14 days...instead of the

whole dose at once, and for a couple of doses after that was given IV

Hydrocortisone as a pre-med in addition to the Tylenol and Benadryl. The 1/2

dose has worked great, no more problems.

It was a very scary experience.

Now he is going to SCIG because he is scheduled for a pacemaker and the

cardiologist wants his port accessed as little as possible. So he is

switching to Hizentra.

Make sure they slow the rate even further and give a bolus of fluids before

the IVIG....did they order a steroid pre-med? Did the doc consider 1/2

dose twice a month? This really worked for my son.

Good luck, I hope it never happens again! Sue

From: Herzberg <skgcifamily@... <mailto:skgcifamily%40msn.com> >

Subject: IVIG Reaction Update

<mailto:%40>

Date: Monday, January 3, 2011, 6:28 PM

Thanks to everyone who responded. We ended up going to ER last night. He was

given compazine and Tylenol in addition to the ibuprofen. They did a blood

culture, sed rate and crp and blood count to make sure that was all within

range. It was so we did not have to do the spinal tap. He still has a

headache today, but the neck stiffness is better. I guess we will be

tweaking the infusion again next time.

Mom to Caelan 11