Guest guest Posted February 13, 2012 Report Share Posted February 13, 2012 Good morning Group- I am what you would call a 'lurker.' I read all your posts/ replies and try to glean information/ insight. I know nobody knows who I am or my story but I think it's safe to assume that we all have something in common and we all could use some prayers/ advice/ support from one another. My son was diagnosed with PID when he was 6. He received IVIG every three weeks until he was around 10 when we 'trialed' him off. He failed and was restarted on the every three weeks protocal. Unfortunately, when he was restarted, his little body went into almost a shock state. His eyes got really glassy, he couldn't talk, he pretty much passed out. The IV was stopped until he came around and it was deemed necessary to stop the infusion for the day. When the nurse returned three weeks later, he tolerated it quite well. He continued to receive the IVIG without any problems and decided to 'trial' him off again in March of 2010. He was doing WONDERUL until the fall of 2011 when he received 4 sinus infections in a six month period. His immunologist performed post pneumovax titers and re-assesed his IGG levels and was foud to have fallen dramatically. His pneumovax titers all fell out of the 'responding' range and his IGG fell from 530 to 415 in less than a month. With that being said, his first IVIG in almost two years is scheduled for this Friday and I am a total mess. He is 18 now, by the way. I remember quite vividly how he responded when he was restarted years ago and I am so afraid he will have the same response. Thankfully, he will have the same nurse he has had since he started at age 6 but that doesn't put my fears to rest. The only saving grace is that my son doesn't remember what happened. With that being said, would you please keep us in your prayers this Friday as he is started back on is IVIG. I KNOW it's in his best interest. He is NOT happy at all about it; he doesn't feel 'normal' when he has to get IVIG every 3 weeks. He really struggles with it. He won't tell his G/F or anyone else. I can't imagine how he feels being 18 and facing something like this. He is by far the bravest young man I know! Thank you in advance for your prayers! Molly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2012 Report Share Posted February 13, 2012 You are so sweet, thank you Barbie. One of the main reasons for his 'trial' off in March 2010 was for HIS sake. I know he wouldn't do well, but HE needed to know it. When his first set of labs came back, the doc said he was borderline CVID and it was up to us whether to restart. I looked at him and told the doc that it was my son's decision. My son said no, so that's what we did. It wasn't long before he started to see that he was going downhill quickly. Then, we did his labs in January and he was totally shocked at how low is IGG level was and that his pneumovax titers had fallen as well. The doc told us both that he should start back on the IVIG and again, I looked at my son and said it was his choice. When he said yes, I sighed a HUGE sigh of relief. He is an adult now and he needs to take responsibility for his healtcare.He has also agreed to apply for a scholarship through the IDF; I was really happy he said he would do that. Interestingly, his best friend knows about his CVID, but not his G/F. But the G/F is new so I imagine he will tell her. My son tried subq but it didn't work for him. He was 5'10 " and weighed all of #130 so he would get two huge welts where the infusion was and it really hurt him a lot. It took HOURS for the subq route whereas his IVIG took less than 2 hours. Thankfully, he gets his IVIG at home, so nobody needs to know anything.It's nice to know I'm not the only person going through this. No offense meant, but golly, it seems so lonely sometimes. I found out that in my county, besides my son, there is only one other person who receives IVIG. At least that our county health nurse knows about. I think it would be terribly helpful if my son had someone his own age to talk to...someone he could relate to...unfortunately, he has turned to some shady friends to feel 'normal,' which means doing things he shouldn't. I'm pretty sure it's a matter of time before he realizes that his CVID doesn't define him.Thank you again Barbie.Molly > > From: mother5590@... > Date: Mon, 13 Feb 2012 10:11:33 -0800 > Subject: RE: Re: Lurker > > > I too have a teenager that refuses to tell his GF and even his best friend does not know. It is hard to know how to help him since he is still in such denial. He gets SubQ which means we can keep it pretty quiet since he does not have to go anywhere. I worry about his willingness to continue it after he turns 18. I have recently begun to step back on purpose with his Drs. and also will insisting on his infusions. He sometimes gets them late and I am not saying anything. I have notified his Drs but there is little I can do to make him. I feel that the natural consequences of feeling bad and getting sick will hopefully help him to begin doing them on time. He does get sick more often. I had him come to me for the first time last week and say MOM I NEED MY GAMMA. I feel it is better to have him mess up now when I can watch and help him than to wait and have him try this when he is 18. He is a LONG way from being willing to infuse himself. I feel your pain and worry. Barbie. Lucas CVID SUB Q weekly > > From: osdbmom@... > Date: Mon, 13 Feb 2012 15:38:38 +0000 > Subject: Re: Lurker > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi! I will keep him in my thoughts. I understand what you are saying...my 14 yr old also CVID (as well as my two youngest) and they are all on IVIG monthly and have been for years. My daughter will NOT tell her boyfriend about the CVID or the IVIG. I know he must wonder why she disappears to the hospital for a day every month, but she just says something vague like, " its for my asthma " (apparently, its ok to have asthma, but not cvid?) Its hard bc as they are getting older, they have to be able to make these decisions for themselves...but its hard to watch:( > > > > Over the years, my kids have had different reactions to IVIG. I would ask your nurse to run it very slowly, since its his first in several years, and also ask your dr about premeds, such as benedryl, tylenol, or a steroid drip (my youngest son has to do this prior to every infusion). Things like this can really help curb a reaction. Also, remind your son to drink a lot this week, its best if he's well hydrated before he starts his infusion. > > > > good luck, > > valarie > > mom to 3 w/cvid > > > > > > > > > > Good morning Group- > > > I am what you would call a 'lurker.' I read all your posts/ replies and try to glean information/ insight. I know nobody knows who I am or my story but I think it's safe to assume that we all have something in common and we all could use some prayers/ advice/ support from one another. > > > My son was diagnosed with PID when he was 6. He received IVIG every three weeks until he was around 10 when we 'trialed' him off. He failed and was restarted on the every three weeks protocal. Unfortunately, when he was restarted, his little body went into almost a shock state. His eyes got really glassy, he couldn't talk, he pretty much passed out. The IV was stopped until he came around and it was deemed necessary to stop the infusion for the day. When the nurse returned three weeks later, he tolerated it quite well. He continued to receive the IVIG without any problems and decided to 'trial' him off again in March of 2010. He was doing WONDERUL until the fall of 2011 when he received 4 sinus infections in a six month period. His immunologist performed post pneumovax titers and re-assesed his IGG levels and was foud to have fallen dramatically. His pneumovax titers all fell out of the 'responding' range and his IGG fell from 530 to 415 in less than a month. > > > With that being said, his first IVIG in almost two years is scheduled for this Friday and I am a total mess. He is 18 now, by the way. I remember quite vividly how he responded when he was restarted years ago and I am so afraid he will have the same response. Thankfully, he will have the same nurse he has had since he started at age 6 but that doesn't put my fears to rest. The only saving grace is that my son doesn't remember what happened. > > > With that being said, would you please keep us in your prayers this Friday as he is started back on is IVIG. I KNOW it's in his best interest. He is NOT happy at all about it; he doesn't feel 'normal' when he has to get IVIG every 3 weeks. He really struggles with it. He won't tell his G/F or anyone else. I can't imagine how he feels being 18 and facing something like this. > > > He is by far the bravest young man I know! > > > Thank you in advance for your prayers! > > > Molly > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2012 Report Share Posted February 13, 2012 I do not know if you have connected with IDF and gone to any of the conferences over the years. We have gone to several and even went to their teen weekend. It did make a HUGE difference for my son at the time. HE was 12 and REFUSED to be infused. You might encourage your son to look at the website. I know they have some teen and adult groups for young people to connect. Barbie From: sds44001@... Date: Mon, 13 Feb 2012 13:27:09 -0500 Subject: RE: Re: Lurker You are so sweet, thank you Barbie. One of the main reasons for his 'trial' off in March 2010 was for HIS sake. I know he wouldn't do well, but HE needed to know it. When his first set of labs came back, the doc said he was borderline CVID and it was up to us whether to restart. I looked at him and told the doc that it was my son's decision. My son said no, so that's what we did. It wasn't long before he started to see that he was going downhill quickly. Then, we did his labs in January and he was totally shocked at how low is IGG level was and that his pneumovax titers had fallen as well. The doc told us both that he should start back on the IVIG and again, I looked at my son and said it was his choice. When he said yes, I sighed a HUGE sigh of relief. He is an adult now and he needs to take responsibility for his healtcare.He has also agreed to apply for a scholarship through the IDF; I was really happy he said he would do that. Interestingly, his best friend knows about his CVID, but not his G/F. But the G/F is new so I imagine he will tell her. My son tried subq but it didn't work for him. He was 5'10 " and weighed all of #130 so he would get two huge welts where the infusion was and it really hurt him a lot. It took HOURS for the subq route whereas his IVIG took less than 2 hours. Thankfully, he gets his IVIG at home, so nobody needs to know anything.It's nice to know I'm not the only person going through this. No offense meant, but golly, it seems so lonely sometimes. I found out that in my county, besides my son, there is only one other person who receives IVIG. At least that our county health nurse knows about. I think it would be terribly helpful if my son had someone his own age to talk to...someone he could relate to...unfortunately, he has turned to some shady friends to feel 'normal,' which means doing things he shouldn't. I'm pretty sure it's a matter of time before he realizes that his CVID doesn't define him.Thank you again Barbie.Molly > > From: mother5590@... > Date: Mon, 13 Feb 2012 10:11:33 -0800 > Subject: RE: Re: Lurker > > > I too have a teenager that refuses to tell his GF and even his best friend does not know. It is hard to know how to help him since he is still in such denial. He gets SubQ which means we can keep it pretty quiet since he does not have to go anywhere. I worry about his willingness to continue it after he turns 18. I have recently begun to step back on purpose with his Drs. and also will insisting on his infusions. He sometimes gets them late and I am not saying anything. I have notified his Drs but there is little I can do to make him. I feel that the natural consequences of feeling bad and getting sick will hopefully help him to begin doing them on time. He does get sick more often. I had him come to me for the first time last week and say MOM I NEED MY GAMMA. I feel it is better to have him mess up now when I can watch and help him than to wait and have him try this when he is 18. He is a LONG way from being willing to infuse himself. I feel your pain and worry. Barbie. Lucas CVID SUB Q weekly > > From: osdbmom@... > Date: Mon, 13 Feb 2012 15:38:38 +0000 > Subject: Re: Lurker > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi! I will keep him in my thoughts. I understand what you are saying...my 14 yr old also CVID (as well as my two youngest) and they are all on IVIG monthly and have been for years. My daughter will NOT tell her boyfriend about the CVID or the IVIG. I know he must wonder why she disappears to the hospital for a day every month, but she just says something vague like, " its for my asthma " (apparently, its ok to have asthma, but not cvid?) Its hard bc as they are getting older, they have to be able to make these decisions for themselves...but its hard to watch:( > > > > Over the years, my kids have had different reactions to IVIG. I would ask your nurse to run it very slowly, since its his first in several years, and also ask your dr about premeds, such as benedryl, tylenol, or a steroid drip (my youngest son has to do this prior to every infusion). Things like this can really help curb a reaction. Also, remind your son to drink a lot this week, its best if he's well hydrated before he starts his infusion. > > > > good luck, > > valarie > > mom to 3 w/cvid > > > > > > > > > > Good morning Group- > > > I am what you would call a 'lurker.' I read all your posts/ replies and try to glean information/ insight. I know nobody knows who I am or my story but I think it's safe to assume that we all have something in common and we all could use some prayers/ advice/ support from one another. > > > My son was diagnosed with PID when he was 6. He received IVIG every three weeks until he was around 10 when we 'trialed' him off. He failed and was restarted on the every three weeks protocal. Unfortunately, when he was restarted, his little body went into almost a shock state. His eyes got really glassy, he couldn't talk, he pretty much passed out. The IV was stopped until he came around and it was deemed necessary to stop the infusion for the day. When the nurse returned three weeks later, he tolerated it quite well. He continued to receive the IVIG without any problems and decided to 'trial' him off again in March of 2010. He was doing WONDERUL until the fall of 2011 when he received 4 sinus infections in a six month period. His immunologist performed post pneumovax titers and re-assesed his IGG levels and was foud to have fallen dramatically. His pneumovax titers all fell out of the 'responding' range and his IGG fell from 530 to 415 in less than a month. > > > With that being said, his first IVIG in almost two years is scheduled for this Friday and I am a total mess. He is 18 now, by the way. I remember quite vividly how he responded when he was restarted years ago and I am so afraid he will have the same response. Thankfully, he will have the same nurse he has had since he started at age 6 but that doesn't put my fears to rest. The only saving grace is that my son doesn't remember what happened. > > > With that being said, would you please keep us in your prayers this Friday as he is started back on is IVIG. I KNOW it's in his best interest. He is NOT happy at all about it; he doesn't feel 'normal' when he has to get IVIG every 3 weeks. He really struggles with it. He won't tell his G/F or anyone else. I can't imagine how he feels being 18 and facing something like this. > > > He is by far the bravest young man I know! > > > Thank you in advance for your prayers! > > > Molly > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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