Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 We had severe side effects from IV that gave flu like symptoms that lasted about 3 weeks, it wasn't fun:( We switched to sub-q 3 years ago and haven't looked back. The only side effects we've had are mild-moderate site reactions (itching and redness) that have reduced over the years. I love sub-q and refuse to go back to IV. 9 CVID ________________________________ From: <stacy171@...> Sent: Wed, May 11, 2011 6:53:46 AM Subject: IVIG to subq We just can't seem to control the IVIG side effects. My son had aseptic meningitis with the first infusion. They switched products, slowed down the rate to a max of 25 ml/hr and premeditated with IV fluids prior to the infusion, benadryl and ibuprofen. He still gets a bad headache with vomiting at some point after the infusion (1-4 days post). Continuous ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't fun. We even tried IV steroids this time and he still got a headache. So we're starting on subq in a week. Please tell me this is much more tolerable! Do you still premeditate for subq? 7yo CVID ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 had very few side effects with Vivaglobin SubQ (mostly local site reactions), but has been on Hizentra for 2 months and requires premeds with Naproxen and prelone 20 mg to prevent migraine (already on max antihistamines). He did not require prelone with viva. His side effects with one dose of IVIG was headache and malaise for over a week. He does have significant migraine problems this spring, so it is probably not totally due to the Hizentra... I think that you will have much better luck with subQ. Mindy, mom to , 9, CVID (I may have told you this already > We just can't seem to control the IVIG side effects. My son had aseptic > meningitis with the first infusion. They switched products, slowed down > the rate to a max of 25 ml/hr and premeditated with IV fluids prior to the > infusion, benadryl and ibuprofen. He still gets a bad headache with > vomiting at some point after the infusion (1-4 days post). Continuous > ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't > fun. We even tried IV steroids this time and he still got a headache. > > So we're starting on subq in a week. Please tell me this is much more > tolerable! Do you still premeditate for subq? > > > 7yo CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 HI, I WENT THROUGHT THAT WITH MY 3 KIDS. WE GAVE THEM ZERTCH WHICH HELPED. BUT THEN WE SWITCHED TO SUB Q AND THAT ALL GOES AWAY. MIGHT AS YOUR DR. ITS GREAT. From: [mailto: ] On Behalf Of mindy@... Sent: Wednesday, May 11, 2011 9:45 AM Subject: Re: IVIG to subq had very few side effects with Vivaglobin SubQ (mostly local site reactions), but has been on Hizentra for 2 months and requires premeds with Naproxen and prelone 20 mg to prevent migraine (already on max antihistamines). He did not require prelone with viva. His side effects with one dose of IVIG was headache and malaise for over a week. He does have significant migraine problems this spring, so it is probably not totally due to the Hizentra... I think that you will have much better luck with subQ. Mindy, mom to , 9, CVID (I may have told you this already > We just can't seem to control the IVIG side effects. My son had aseptic > meningitis with the first infusion. They switched products, slowed down > the rate to a max of 25 ml/hr and premeditated with IV fluids prior to the > infusion, benadryl and ibuprofen. He still gets a bad headache with > vomiting at some point after the infusion (1-4 days post). Continuous > ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't > fun. We even tried IV steroids this time and he still got a headache. > > So we're starting on subq in a week. Please tell me this is much more > tolerable! Do you still premeditate for subq? > > > 7yo CVID > > _____ No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1375 / Virus Database: 1500/3630 - Release Date: 05/11/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 HI, I WENT THROUGHT THAT WITH MY 3 KIDS. WE GAVE THEM ZERTCH WHICH HELPED. BUT THEN WE SWITCHED TO SUB Q AND THAT ALL GOES AWAY. MIGHT AS YOUR DR. ITS GREAT. From: [mailto: ] On Behalf Of mindy@... Sent: Wednesday, May 11, 2011 9:45 AM Subject: Re: IVIG to subq had very few side effects with Vivaglobin SubQ (mostly local site reactions), but has been on Hizentra for 2 months and requires premeds with Naproxen and prelone 20 mg to prevent migraine (already on max antihistamines). He did not require prelone with viva. His side effects with one dose of IVIG was headache and malaise for over a week. He does have significant migraine problems this spring, so it is probably not totally due to the Hizentra... I think that you will have much better luck with subQ. Mindy, mom to , 9, CVID (I may have told you this already > We just can't seem to control the IVIG side effects. My son had aseptic > meningitis with the first infusion. They switched products, slowed down > the rate to a max of 25 ml/hr and premeditated with IV fluids prior to the > infusion, benadryl and ibuprofen. He still gets a bad headache with > vomiting at some point after the infusion (1-4 days post). Continuous > ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't > fun. We even tried IV steroids this time and he still got a headache. > > So we're starting on subq in a week. Please tell me this is much more > tolerable! Do you still premeditate for subq? > > > 7yo CVID > > _____ No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1375 / Virus Database: 1500/3630 - Release Date: 05/11/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Isn't the Hizentra a more concentrated product? Wouldn't it be better to switch to a lower concentration product? ________________________________ From: " mindy@... " <mindy@...> Sent: Wed, May 11, 2011 7:44:30 AM Subject: Re: IVIG to subq had very few side effects with Vivaglobin SubQ (mostly local site reactions), but has been on Hizentra for 2 months and requires premeds with Naproxen and prelone 20 mg to prevent migraine (already on max antihistamines). He did not require prelone with viva. His side effects with one dose of IVIG was headache and malaise for over a week. He does have significant migraine problems this spring, so it is probably not totally due to the Hizentra... I think that you will have much better luck with subQ. Mindy, mom to , 9, CVID (I may have told you this already > We just can't seem to control the IVIG side effects. My son had aseptic > meningitis with the first infusion. They switched products, slowed down > the rate to a max of 25 ml/hr and premeditated with IV fluids prior to the > infusion, benadryl and ibuprofen. He still gets a bad headache with > vomiting at some point after the infusion (1-4 days post). Continuous > ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't > fun. We even tried IV steroids this time and he still got a headache. > > So we're starting on subq in a week. Please tell me this is much more > tolerable! Do you still premeditate for subq? > > > 7yo CVID > > ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Isn't the Hizentra a more concentrated product? Wouldn't it be better to switch to a lower concentration product? ________________________________ From: " mindy@... " <mindy@...> Sent: Wed, May 11, 2011 7:44:30 AM Subject: Re: IVIG to subq had very few side effects with Vivaglobin SubQ (mostly local site reactions), but has been on Hizentra for 2 months and requires premeds with Naproxen and prelone 20 mg to prevent migraine (already on max antihistamines). He did not require prelone with viva. His side effects with one dose of IVIG was headache and malaise for over a week. He does have significant migraine problems this spring, so it is probably not totally due to the Hizentra... I think that you will have much better luck with subQ. Mindy, mom to , 9, CVID (I may have told you this already > We just can't seem to control the IVIG side effects. My son had aseptic > meningitis with the first infusion. They switched products, slowed down > the rate to a max of 25 ml/hr and premeditated with IV fluids prior to the > infusion, benadryl and ibuprofen. He still gets a bad headache with > vomiting at some point after the infusion (1-4 days post). Continuous > ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't > fun. We even tried IV steroids this time and he still got a headache. > > So we're starting on subq in a week. Please tell me this is much more > tolerable! Do you still premeditate for subq? > > > 7yo CVID > > ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Vivaglobin is no longer available in our area. Is there another subcutaneous product available? The doctor wanted to continue Hizentra for three months and see if his migraines were better with the premed. He has been sicker on Hizentra than Viva (still on antibiotics, two months now; changed again yesterday). Mindy, mom to , 9, CVID > Isn't the Hizentra a more concentrated product? Wouldn't it be better to > switch > to a lower concentration product? > > > > > > > ________________________________ > From: " mindy@... " <mindy@...> > > Sent: Wed, May 11, 2011 7:44:30 AM > Subject: Re: IVIG to subq > > had very few side effects with Vivaglobin SubQ (mostly local site > reactions), but has been on Hizentra for 2 months and requires premeds > with Naproxen and prelone 20 mg to prevent migraine (already on max > antihistamines). He did not require prelone with viva. His side effects > with one dose of IVIG was headache and malaise for over a week. He does > have significant migraine problems this spring, so it is probably not > totally due to the Hizentra... > > I think that you will have much better luck with subQ. > > Mindy, mom to , 9, CVID (I may have told you this already > >> We just can't seem to control the IVIG side effects. My son had aseptic >> meningitis with the first infusion. They switched products, slowed down >> the rate to a max of 25 ml/hr and premeditated with IV fluids prior to >> the >> infusion, benadryl and ibuprofen. He still gets a bad headache with >> vomiting at some point after the infusion (1-4 days post). Continuous >> ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't >> fun. We even tried IV steroids this time and he still got a headache. >> >> So we're starting on subq in a week. Please tell me this is much more >> tolerable! Do you still premeditate for subq? >> >> >> 7yo CVID >> >> > > > > > ------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole > responsibility of the poster and should not be taken as professional > advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Macey has been on Hizentra for almost a month now with no problems. Les has only ever been on Hizentra and done fine. Many patients have strong reactions to their first ever dose due to the bacteria always having free reign and then finally being attacted by the passive antibodies in the product. Macey had an anaphylactic reaction her first time (January 1998). After that we did work with the rate, used Solumedrol and Benadryl IV and ran IV fluids before and after infusion. No luck with reducing reactions. Had to work with blood pressures like 60/30 and headaches that made her vomit. Plus she was having to get it every 3 weeks to maintain any type of trough level. Finally in 2004 when subq came out we were immediately switched over during the trials. No premeds now. No systemic reactions. Always some redness from the tegaderm site but nothing more than what a regular bandaid leaves. Les also has required no premeds and his first every infusion (which happened to be subq) was reaction free. Incidentally Macey has Crohn's and during her IVIG days was doing quite better than now that she's on subq. She's had more flares since being on subq. Guess that IV dose zapped her gut alot better than the trickle effect that subq does. Ursula mom to Macey (16,CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 My daughter has been on Ivig for 2 yrs. She has always had side effects with each infusion. Hers starts 48 hrs after infusion with an extremely bad headache, vomiting, back ache and 102 - 104 fevers. We also premedicate and do the IV fluids at home with the infusion. The strange thing is that I may have found a way to fix this. On May 1st when she had her IVIG she had also been dealing with a staph infection. Right after she finished the infusion her nurse suggested we take her into the er because the staph had progressed and she had a high fever and chills. When we got there they put her on IV Rocephin right away. The thing is, is that she never got any of her side effects. On the 2nd day after infusion she had a slight headache but nothing major and no vomiting or fever. So I really think that the antibiotic helped with the side effects. Just a little but of info... IVIG to subq We just can't seem to control the IVIG side effects. My son had aseptic meningitis with the first infusion. They switched products, slowed down the rate to a max of 25 ml/hr and premeditated with IV fluids prior to the infusion, benadryl and ibuprofen. He still gets a bad headache with vomiting at some point after the infusion (1-4 days post). Continuous ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't fun. We even tried IV steroids this time and he still got a headache. So we're starting on subq in a week. Please tell me this is much more tolerable! Do you still premeditate for subq? 7yo CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Here's my take on reactions. Macey's reactions were always immediate. Always less than half the bottle had pumped in before the reactions started. IV medicine is immediate. That's one the advantage of using IV meds over oral meds. The affect of the medicine is seen quickly. If you are reacting to the actual medicine given IV it has hit the system and already started the process almost immediately. Symptoms that start more than 24 hours later to me are symptoms stemming from an infection being attacked by the passive antibodies in the gammaglobulin. Antibiotics will treat whatever infection is there either dormant or active. It could even be a colonized infection that gets zapped with the IVIG and then rears its ugly head when it can't fight over the newly injected antibodies any more. Hence the delayed reaction. But I really think that IVIG gets a bad rap for being tagged responsible for symptoms that happen more than 24 hours later. Macey would sometimes have symptoms (even as strong as headaches and body aches) the weekend after her friday infusion but I could always track them back to someone in the clinic who gave her something (virus/bacteria wise) or sure enough within the week she would culture or blood work for an infection. Just a thought from our 14 years. Ursula mom to Macey (16,CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 We do not medicate with ANYTHING just do it. It is amazingly better for my son. BARBIE ________________________________ From: Roach <ksroach4@...> " " < > Sent: Wed, May 11, 2011 8:45:19 AM Subject: RE: IVIG to subq My daughter has been on Ivig for 2 yrs. She has always had side effects with each infusion. Hers starts 48 hrs after infusion with an extremely bad headache, vomiting, back ache and 102 - 104 fevers. We also premedicate and do the IV fluids at home with the infusion. The strange thing is that I may have found a way to fix this. On May 1st when she had her IVIG she had also been dealing with a staph infection. Right after she finished the infusion her nurse suggested we take her into the er because the staph had progressed and she had a high fever and chills. When we got there they put her on IV Rocephin right away. The thing is, is that she never got any of her side effects. On the 2nd day after infusion she had a slight headache but nothing major and no vomiting or fever. So I really think that the antibiotic helped with the side effects. Just a little but of info... IVIG to subq We just can't seem to control the IVIG side effects. My son had aseptic meningitis with the first infusion. They switched products, slowed down the rate to a max of 25 ml/hr and premeditated with IV fluids prior to the infusion, benadryl and ibuprofen. He still gets a bad headache with vomiting at some point after the infusion (1-4 days post). Continuous ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't fun. We even tried IV steroids this time and he still got a headache. So we're starting on subq in a week. Please tell me this is much more tolerable! Do you still premeditate for subq? 7yo CVID ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 That is reassuring, thank you. However, that & #39;s exactly my biggest concern - my son has bowel inflammation and villous blunting. No clear diagnosis other than enterocolitis. The IVIG does seem to be helping the bowel problems a lot. A couple of weeks ago he had 10 days of diarrhea and we went to the ER to rule-out bacteria/viruses as much as possible. Everything was negative but the GI doctor would not treat him with steroids for a likely IBD flare (we were using lots of ibuprofen for the IVIG and headaches so I was pretty sure it was IBD). He wanted to rescope him just to make sure. My son had a scope a few months ago so this seemed insane to me. It was terribly frustrating because I had a kid in pain and no one wanted to do anything. I decided to change his diet back to soft foods and he got better slowly. Our immunologist spoke to the GI doc about this, so hopefully it will be better next time. But man, I don & #39;t want to deal with more bowel issues, either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 My son & #39;s headaches start as soon as we stop ibuprofen. So, if we did 1 day of ibuprofen, the headache was the next day. The next time we did 2 days of ibuprofen and the headache was on day 3. The next time we did 3 days and of course headache on day 4. If I could ask, how would headaches and ibuprofen relate to infections/antibodies? I & #39;ve vaguely heard of immune complexes in the brain but I don & #39;t get it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Could be sinus related? Ursula On May 11, 2011, at 1:08 PM, <stacy171@...> wrote: > My son & #39;s headaches start as soon as we stop ibuprofen. So, if we did 1 day of ibuprofen, the headache was the next day. The next time we did 2 days of ibuprofen and the headache was on day 3. The next time we did 3 days and of course headache on day 4. > > If I could ask, how would headaches and ibuprofen relate to infections/antibodies? I & #39;ve vaguely heard of immune complexes in the brain but I don & #39;t get it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Macey is not alloed ibuprofen. Too caustic to the gut. Tylenol only. IV toradol can work for headaches or macey will take Lortab. Depends on what she rates the pain. Ursula Mom to Macey (16, CVID) On May 11, 2011, at 12:57 PM, <stacy171@...> wrote: > That is reassuring, thank you. However, that & #39;s exactly my biggest concern - my son has bowel inflammation and villous blunting. No clear diagnosis other than enterocolitis. The IVIG does seem to be helping the bowel problems a lot. A couple of weeks ago he had 10 days of diarrhea and we went to the ER to rule-out bacteria/viruses as much as possible. Everything was negative but the GI doctor would not treat him with steroids for a likely IBD flare (we were using lots of ibuprofen for the IVIG and headaches so I was pretty sure it was IBD). He wanted to rescope him just to make sure. My son had a scope a few months ago so this seemed insane to me. It was terribly frustrating because I had a kid in pain and no one wanted to do anything. I decided to change his diet back to soft foods and he got better slowly. Our immunologist spoke to the GI doc about this, so hopefully it will be better next time. > > But man, I don & #39;t want to deal with more bowel issues, either. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 I have another theory from our Immunologist about IVig. He says that the Gamma crosses the blood brain barrier since it is a blood product. The product has fragment cells that the body had a hard time assimilating and that is what he says causes the headaches. So Ibubrofen is an Anti-inflammatory med so it keeps the inflammation down thus reducing the swelling and or irritation in the brain, vessels and meninges of the spine. Who knows what is correct but CLEARLY there is irritation from something that causes the headaches. He also believes increased fluids helps to reduce this. SubQ is absorbed more slowly and the body is able to assimilate more slowly thus less problems. BARBIE ________________________________ From: <stacy171@...> Sent: Wed, May 11, 2011 9:57:04 AM Subject: Re: IVIG to subq That is reassuring, thank you. However, that & #39;s exactly my biggest concern - my son has bowel inflammation and villous blunting. No clear diagnosis other than enterocolitis. The IVIG does seem to be helping the bowel problems a lot. A couple of weeks ago he had 10 days of diarrhea and we went to the ER to rule-out bacteria/viruses as much as possible. Everything was negative but the GI doctor would not treat him with steroids for a likely IBD flare (we were using lots of ibuprofen for the IVIG and headaches so I was pretty sure it was IBD). He wanted to rescope him just to make sure. My son had a scope a few months ago so this seemed insane to me. It was terribly frustrating because I had a kid in pain and no one wanted to do anything. I decided to change his diet back to soft foods and he got better slowly. Our immunologist spoke to the GI doc about this, so hopefully it will be better next time. But man, I don & #39;t want to deal with more bowel issues, either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 My son just switched from IVIG to SubQ, the nurse came out this morning for our first Subq and tried his belly for 2 sites and the needles would not stay in, every time my son breathed the needles would go in and out. she is coming back this afternoon to try his upper thighs, he had headache and nausea from IVIG so we thought this would work better for him, but so far all it has done is make him very upset! Any advice would be appreciated, Thanks  Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus of the eyes. From: Barbara Jimenez <mother5590@...> Subject: Re: IVIG to subq Date: Wednesday, May 11, 2011, 2:04 PM  I have another theory from our Immunologist about IVig. He says that the Gamma crosses the blood brain barrier since it is a blood product. The product has fragment cells that the body had a hard time assimilating and that is what he says causes the headaches. So Ibubrofen is an Anti-inflammatory med so it keeps the inflammation down thus reducing the swelling and or irritation in the brain, vessels and meninges of the spine. Who knows what is correct but CLEARLY there is irritation from something that causes the headaches. He also believes increased fluids helps to reduce this. SubQ is absorbed more slowly and the body is able to assimilate more slowly thus less problems. BARBIE ________________________________ From: <stacy171@...> Sent: Wed, May 11, 2011 9:57:04 AM Subject: Re: IVIG to subq That is reassuring, thank you. However, that & #39;s exactly my biggest concern - my son has bowel inflammation and villous blunting. No clear diagnosis other than enterocolitis. The IVIG does seem to be helping the bowel problems a lot. A couple of weeks ago he had 10 days of diarrhea and we went to the ER to rule-out bacteria/viruses as much as possible. Everything was negative but the GI doctor would not treat him with steroids for a likely IBD flare (we were using lots of ibuprofen for the IVIG and headaches so I was pretty sure it was IBD). He wanted to rescope him just to make sure. My son had a scope a few months ago so this seemed insane to me. It was terribly frustrating because I had a kid in pain and no one wanted to do anything. I decided to change his diet back to soft foods and he got better slowly. Our immunologist spoke to the GI doc about this, so hopefully it will be better next time. But man, I don & #39;t want to deal with more bowel issues, either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 My son likes his love handles MUCH better ( more fat and he does not have to look at it.) He also may need a larger needle. a 9mm instead of a 6mm but she also may not have good technique and is not pushing it all the way in especially if she has not done too many or he is upset. Sometime when I insert my sons it requires a second push to get it in far enough but I just watch that it is flush with the skin. Good hydration also helps so encourage him to drink before she comes back. And use the EMLA so he can tolerate it better. BARBIE ________________________________ From: Weiss <bwkw98@...> Sent: Wed, May 11, 2011 12:26:24 PM Subject: Re: IVIG to subq My son just switched from IVIG to SubQ, the nurse came out this morning for our first Subq and tried his belly for 2 sites and the needles would not stay in, every time my son breathed the needles would go in and out. she is coming back this afternoon to try his upper thighs, he had headache and nausea from IVIG so we thought this would work better for him, but so far all it has done is make him very upset! Any advice would be appreciated, Thanks Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus of the eyes. From: Barbara Jimenez <mother5590@...> Subject: Re: IVIG to subq Date: Wednesday, May 11, 2011, 2:04 PM I have another theory from our Immunologist about IVig. He says that the Gamma crosses the blood brain barrier since it is a blood product. The product has fragment cells that the body had a hard time assimilating and that is what he says causes the headaches. So Ibubrofen is an Anti-inflammatory med so it keeps the inflammation down thus reducing the swelling and or irritation in the brain, vessels and meninges of the spine. Who knows what is correct but CLEARLY there is irritation from something that causes the headaches. He also believes increased fluids helps to reduce this. SubQ is absorbed more slowly and the body is able to assimilate more slowly thus less problems. BARBIE ________________________________ From: <stacy171@...> Sent: Wed, May 11, 2011 9:57:04 AM Subject: Re: IVIG to subq That is reassuring, thank you. However, that & #39;s exactly my biggest concern - my son has bowel inflammation and villous blunting. No clear diagnosis other than enterocolitis. The IVIG does seem to be helping the bowel problems a lot. A couple of weeks ago he had 10 days of diarrhea and we went to the ER to rule-out bacteria/viruses as much as possible. Everything was negative but the GI doctor would not treat him with steroids for a likely IBD flare (we were using lots of ibuprofen for the IVIG and headaches so I was pretty sure it was IBD). He wanted to rescope him just to make sure. My son had a scope a few months ago so this seemed insane to me. It was terribly frustrating because I had a kid in pain and no one wanted to do anything. I decided to change his diet back to soft foods and he got better slowly. Our immunologist spoke to the GI doc about this, so hopefully it will be better next time. But man, I don & #39;t want to deal with more bowel issues, either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Thanks Barbie, I hope all goes well this afternoon too, I think Subq is going to be so much better for my son, we just have to get the technique down that works for him. From: Barbara Jimenez <mother5590@...> Subject: Re: IVIG to subq Date: Wednesday, May 11, 2011, 2:04 PM I have another theory from our Immunologist about IVig. He says that the Gamma crosses the blood brain barrier since it is a blood product. The product has fragment cells that the body had a hard time assimilating and that is what he says causes the headaches. So Ibubrofen is an Anti-inflammatory med so it keeps the inflammation down thus reducing the swelling and or irritation in the brain, vessels and meninges of the spine. Who knows what is correct but CLEARLY there is irritation from something that causes the headaches. He also believes increased fluids helps to reduce this. SubQ is absorbed more slowly and the body is able to assimilate more slowly thus less problems. BARBIE ________________________________ From: <stacy171@...> Sent: Wed, May 11, 2011 9:57:04 AM Subject: Re: IVIG to subq That is reassuring, thank you. However, that & #39;s exactly my biggest concern - my son has bowel inflammation and villous blunting. No clear diagnosis other than enterocolitis. The IVIG does seem to be helping the bowel problems a lot. A couple of weeks ago he had 10 days of diarrhea and we went to the ER to rule-out bacteria/viruses as much as possible. Everything was negative but the GI doctor would not treat him with steroids for a likely IBD flare (we were using lots of ibuprofen for the IVIG and headaches so I was pretty sure it was IBD). He wanted to rescope him just to make sure. My son had a scope a few months ago so this seemed insane to me. It was terribly frustrating because I had a kid in pain and no one wanted to do anything. I decided to change his diet back to soft foods and he got better slowly. Our immunologist spoke to the GI doc about this, so hopefully it will be better next time. But man, I don & #39;t want to deal with more bowel issues, either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 longer needle length? maybe 9mm? Ursula On Wed, May 11, 2011 at 3:26 PM, Weiss <bwkw98@...> wrote: > > > My son just switched from IVIG to SubQ, the nurse came out this morning for > our first Subq and tried his belly for 2 sites and the needles would not > stay in, every time my son breathed the needles would go in and out. she is > coming back this afternoon to try his upper thighs, he had headache and > nausea from IVIG so we thought this would work better for him, but so far > all it has done is make him very upset! Any advice would be appreciated, > Thanks > > Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus of > the eyes. > > > > From: Barbara Jimenez <mother5590@...> > Subject: Re: IVIG to subq > > Date: Wednesday, May 11, 2011, 2:04 PM > > > > I have another theory from our Immunologist about IVig. He says that the > Gamma > crosses the blood brain barrier since it is a blood product. The product > has > fragment cells that the body had a hard time assimilating and that is what > he > says causes the headaches. So Ibubrofen is an Anti-inflammatory med so it > keeps > the inflammation down thus reducing the swelling and or irritation in the > brain, > vessels and meninges of the spine. Who knows what is correct but CLEARLY > there > is irritation from something that causes the headaches. He also believes > increased fluids helps to reduce this. SubQ is absorbed more slowly and the > body > is able to assimilate more slowly thus less problems. > > BARBIE > > ________________________________ > From: <stacy171@...> > > Sent: Wed, May 11, 2011 9:57:04 AM > Subject: Re: IVIG to subq > > That is reassuring, thank you. However, that & #39;s exactly my biggest > concern - > my son has bowel inflammation and villous blunting. No clear diagnosis > other > than enterocolitis. The IVIG does seem to be helping the bowel problems a > lot. > A couple of weeks ago he had 10 days of diarrhea and we went to the ER to > rule-out bacteria/viruses as much as possible. Everything was negative but > the > GI doctor would not treat him with steroids for a likely IBD flare (we were > > using lots of ibuprofen for the IVIG and headaches so I was pretty sure it > was > IBD). He wanted to rescope him just to make sure. My son had a scope a few > months ago so this seemed insane to me. It was terribly frustrating because > I > had a kid in pain and no one wanted to do anything. I decided to change his > > diet back to soft foods and he got better slowly. Our immunologist spoke to > the > GI doc about this, so hopefully it will be better next time. > > But man, I don & #39;t want to deal with more bowel issues, either. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Yes, I think this is the immune complexes in the brain theory. Seems to make sense with what we are seeing. Kind of weird that he has to get that one bout of headache no matter how long we put it off with ibuprofen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 My son is 11 and we use the 27/9mm needles. The needles will tend to pop up a bit, but we use a gauze pad and then two strips of paper tape and make an X across them to hold them in place. Usually the plastic wing things will stick a bit eventually as well which helps hold it in. I hope you find something that works! > > > My son just switched from IVIG to SubQ, the nurse came out this morning for > our first Subq and tried his belly for 2 sites and the needles would not > stay in, every time my son breathed the needles would go in and out. she is > coming back this afternoon to try his upper thighs, he had headache and > nausea from IVIG so we thought this would work better for him, but so far > all it has done is make him very upset! Any advice would be appreciated, > Thanks > > Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus of > the eyes. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 My son cannot do anywhere but his thighs. He is now average-sized (used to be skinny when he first started), but his belly is bloated due to his GI issues; he just can't keep the needles in far enough there. He prefers inner thigh and on top of them (he does four needles, so two in each). He also has one site that just comes out every time, so I avoid that one area of his thigh. It is trial and error Good luck! Mindy, mom of , 9, CVID, autism plus (mito) > Thanks Barbie, I hope all goes well this afternoon too, I think Subq > is going to be so much better for my son, we just have to get the > technique down that works for him. > > > > From: Barbara Jimenez <mother5590@...> > Subject: Re: IVIG to subq > > Date: Wednesday, May 11, 2011, 2:04 PM > > I have another theory from our Immunologist about IVig. He says that the > Gamma > crosses the blood brain barrier since it is a blood product. The product > has > fragment cells that the body had a hard time assimilating and that is what > he > says causes the headaches. So Ibubrofen is an Anti-inflammatory med so it > keeps > the inflammation down thus reducing the swelling and or irritation in the > brain, > > vessels and meninges of the spine. Who knows what is correct but CLEARLY > there > is irritation from something that causes the headaches. He also believes > increased fluids helps to reduce this. SubQ is absorbed more slowly and > the body > > is able to assimilate more slowly thus less problems. > > BARBIE > > ________________________________ > From: <stacy171@...> > > Sent: Wed, May 11, 2011 9:57:04 AM > Subject: Re: IVIG to subq > > That is reassuring, thank you. However, that & #39;s exactly my biggest > concern - > my son has bowel inflammation and villous blunting. No clear diagnosis > other > than enterocolitis. The IVIG does seem to be helping the bowel problems a > lot. > A couple of weeks ago he had 10 days of diarrhea and we went to the ER to > rule-out bacteria/viruses as much as possible. Everything was negative but > the > GI doctor would not treat him with steroids for a likely IBD flare (we > were > using lots of ibuprofen for the IVIG and headaches so I was pretty sure it > was > IBD). He wanted to rescope him just to make sure. My son had a scope a few > months ago so this seemed insane to me. It was terribly frustrating > because I > had a kid in pain and no one wanted to do anything. I decided to change > his > diet back to soft foods and he got better slowly. Our immunologist spoke > to the > GI doc about this, so hopefully it will be better next time. > > But man, I don & #39;t want to deal with more bowel issues, either. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 sorry, Mindy, I must've missed your emails. Any chance your son had a biochemical work-up as a part of his mito diagnosis? I know that when we were looking at possible immunoglobin products, our immunologist had Dr. Kelley look at the stabilizers and suggest something suitable.  Hizentra is stabilized with proline so maybe it's a stabilizer issue?? I forget what vivaglobin uses as a stabilizer. You might want to consider the preservatives in Hizentra too. I believe they use some kind of preservative since it's not refridgerated. ________________________________ From: " mindy@... " <mindy@...> Sent: Wed, May 11, 2011 11:11:08 AM Subject: Re: IVIG to subq  Vivaglobin is no longer available in our area. Is there another subcutaneous product available? The doctor wanted to continue Hizentra for three months and see if his migraines were better with the premed. He has been sicker on Hizentra than Viva (still on antibiotics, two months-up now; changed again yesterday). Mindy, mom to , 9, CVID > Isn't the Hizentra a more concentrated product? Wouldn't it be better to > switch > to a lower concentration product? > > > > > > > ________________________________ > From: " mindy@... " <mindy@...> > > Sent: Wed, May 11, 2011 7:44:30 AM > Subject: Re: IVIG to subq > > had very few side effects with Vivaglobin SubQ (mostly local site > reactions), but has been on Hizentra for 2 months and requires premeds > with Naproxen and prelone 20 mg to prevent migraine (already on max > antihistamines). He did not require prelone with viva. His side effects > with one dose of IVIG was headache and malaise for over a week. He does > have significant migraine problems this spring, so it is probably not > totally due to the Hizentra... > > I think that you will have much better luck with subQ. > > Mindy, mom to , 9, CVID (I may have told you this already > >> We just can't seem to control the IVIG side effects. My son had aseptic >> meningitis with the first infusion. They switched products, slowed down >> the rate to a max of 25 ml/hr and premeditated with IV fluids prior to >> the >> infusion, benadryl and ibuprofen. He still gets a bad headache with >> vomiting at some point after the infusion (1-4 days post). Continuous >> ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't >> fun. We even tried IV steroids this time and he still got a headache. >> >> So we're starting on subq in a week. Please tell me this is much more >> tolerable! Do you still premeditate for subq? >> >> >> 7yo CVID >> >> > > > > > ------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole > responsibility of the poster and should not be taken as professional > advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Hi ! Poor little guy, those side effects make them feel awful and it seems like he had the worst. My son had a terrible case of aseptic meningitis with the IVIG about 1 1/2 years ago...he had a seizure, projectile vomiting, had to be hospitalized for a week....on IV steroids and boluses of IV fluids. He couldn't talk for days and had swelling in his brain on the CT scan. After that, he'd get IV fluids afterwards and a slower rate of the Gamunex, but I was always scared the same thing would happen again.... In Jan 2011, we switched to Hizentra subq....he tolerates it better, less headaches..no vomiting and no signs of the aseptic meningitis. We still premedicate with the Benadryl and Tylenol...........good luck, hugs! sue From: <stacy171@...> Subject: IVIG to subq Date: Wednesday, May 11, 2011, 1:53 PM  We just can't seem to control the IVIG side effects. My son had aseptic meningitis with the first infusion. They switched products, slowed down the rate to a max of 25 ml/hr and premeditated with IV fluids prior to the infusion, benadryl and ibuprofen. He still gets a bad headache with vomiting at some point after the infusion (1-4 days post). Continuous ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't fun. We even tried IV steroids this time and he still got a headache. So we're starting on subq in a week. Please tell me this is much more tolerable! Do you still premeditate for subq? 7yo CVID Quote Link to comment Share on other sites More sharing options...
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