Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 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@...> Subject: IVIG Reaction Update 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 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@...> Subject: IVIG Reaction Update 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Sue, My son was given Prednisone, Benadryl and Tylenol as pre-meds. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Sue, My son was given Prednisone, Benadryl and Tylenol as pre-meds. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 , 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 50 is WAY>>>>>> too fast to be doing infusions for new patients. The body takes time to get use to the cells coming into it and crossing the blood brain barrier. Make them start less than 10 and increase slowing up to about a max of 25 or 35 at the most. I would talk to the doctor again about it so the orders are written that way. If the staff has not done these infusions they have NO idea how to give it. BARBIE ________________________________ From: <stacy171@...> Sent: Mon, January 3, 2011 4:51:30 PM Subject: Re: IVIG Reaction Update , 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Unfortunately, they definitely know what they are doing. The whole section of the floor was full of kids getting infusions. I think they rushed it due to nursing schedule conflict (our nurse expected to leave around 12pm and they started the infusion 2 hours late). I will make sure they are going slower next time! ________________________________ From: Barbara Jimenez <mother5590@...> Sent: Tue, January 4, 2011 2:44:53 PM Subject: Re: IVIG Reaction Update  50 is WAY>>>>>> too fast to be doing infusions for new patients. The body takes time to get use to the cells coming into it and crossing the blood brain barrier. Make them start less than 10 and increase slowing up to about a max of 25 or 35 at the most. I would talk to the doctor again about it so the orders are written that way. If the staff has not done these infusions they have NO idea how to give it. BARBIE ________________________________ From: <stacy171@...> Sent: Mon, January 3, 2011 4:51:30 PM Subject: Re: IVIG Reaction Update , 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 Quote Link to comment Share on other sites More sharing options...
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