Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 I belong to several different lists due to my son's developmental disability and immune system problems. One thing that Dr J. McCandless on the Autism-LDN (low dose naltraxone) board has recommended for autistic children due to their high prevelance of immune system problems is High dosages of vitamin D (particularly if you live were sunshine is less plentiful like me, Michigan) along with Epicor and Fucoidan (sp?) from VRP. She feels that getting vitamin D level up to about 90 along with use of these supplements will help either prevent flu or reduce severity. If you go to the autism list and post a question for her she is usually pretty quick about responding. She may also offer an opinion on whether LDN might in some way be of benefit as that is the focus of the list to which I belong. When younger (3, he's now 14), my son would get deathly ill with colds and such and would regress terribly...losing all speech and most cognative/educational gains. We have been doing IVIG since the age of 3 and he has recetnly been healthy enough to have a " typical " growth spurt (after being almost emaciatedly thin for years) where he put on close to 30# and gained almost 5 inches in height in less than a year. IVIG is, though, still needed as after about 3 weeks he starts to get more agitated, increased tics, poorer speech, worsened coordination...about 2-3 days following an IVIG infusion these symtpoms improve. Unfortunately for me, he did not get any kind of coverable diagnosis at a young age and my wife will not take him off the IVIG to test because she feels the losses could be permenent and she doesn't want to see him go down hill...so we pay out of pocket for about 15 grams every 3 weeks. At $2250, one of the things I was hopeing to find on these various lists was a less costly Ig source...my wife is a nurse and we do our own infusions and my son tolerates them well (he's into still...so when we do an infusion, he is " being repaired " ). Still hoping to find something to delay the point when we will no longer be able to aford this and will have to watch him deteriorate...sigh. Jon in MI From: kmr7275@... Date: Tue, 6 Oct 2009 17:50:12 +0000 Subject: Immunity Boost Hello everyone. As you probably can relate, I tend to get a LOT of kind advice on how to boost my daughter's immune system since she has an immune disorder. However, I did ask our immunologist about that. I wondered if you can really boost an immune system that genetically functions improperly. He said not really, and I have just kind of stuck with that. And let me just add, that Hannah does not have a deficiency and our doctor does not call it that. She has Hyper Ige, so she actually makes too much immunoglobulin. So, he classified it as an immune disorder. So, what do you all know about boosting an immune system that doesn't function properly. The reason I am asking is because my daughter cannot have the flu shot because she is VERY allergic to eggs, so people have been suggesting to boost her Vitamin C consumption. Thank you, Roach, mother of Hannah, 2, Hyper Ige Syndrome _________________________________________________________________ Hotmail: Powerful Free email with security by Microsoft. http://clk.atdmt.com/GBL/go/171222986/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Wow!! Thanks for the input. I just had one of those kind friends, advise Epicor to me. But you know, sometimes people are throwing so many brand names at you that you don't know what to do. But this was something I had never heard of and now you are the second to mention it to me. I will pray about that for sure. Thanks. Psalm 145:5 I will meditate on your majestic, glorious splendor and your wonderful miracles. From: JON FISHEL <jfishel@...> Subject: RE: Immunity Boost Date: Tuesday, October 6, 2009, 2:05 PM I belong to several different lists due to my son's developmental disability and immune system problems. One thing that Dr J. McCandless on the Autism-LDN (low dose naltraxone) board has recommended for autistic children due to their high prevelance of immune system problems is High dosages of vitamin D (particularly if you live were sunshine is less plentiful like me, Michigan) along with Epicor and Fucoidan (sp?) from VRP. She feels that getting vitamin D level up to about 90 along with use of these supplements will help either prevent flu or reduce severity. If you go to the autism list and post a question for her she is usually pretty quick about responding. She may also offer an opinion on whether LDN might in some way be of benefit as that is the focus of the list to which I belong. When younger (3, he's now 14), my son would get deathly ill with colds and such and would regress terribly...losing all speech and most cognative/education al gains. We have been doing IVIG since the age of 3 and he has recetnly been healthy enough to have a " typical " growth spurt (after being almost emaciatedly thin for years) where he put on close to 30# and gained almost 5 inches in height in less than a year. IVIG is, though, still needed as after about 3 weeks he starts to get more agitated, increased tics, poorer speech, worsened coordination. ..about 2-3 days following an IVIG infusion these symtpoms improve. Unfortunately for me, he did not get any kind of coverable diagnosis at a young age and my wife will not take him off the IVIG to test because she feels the losses could be permenent and she doesn't want to see him go down hill...so we pay out of pocket for about 15 grams every 3 weeks. At $2250, one of the things I was hopeing to find on these various lists was a less costly Ig source...my wife is a nurse and we do our own infusions and my son tolerates them well (he's into still...so when we do an infusion, he is " being repaired " ). Still hoping to find something to delay the point when we will no longer be able to aford this and will have to watch him deteriorate. ..sigh. Jon in MI groups (DOT) com From: kmr7275 (DOT) com Date: Tue, 6 Oct 2009 17:50:12 +0000 Subject: Immunity Boost Hello everyone. As you probably can relate, I tend to get a LOT of kind advice on how to boost my daughter's immune system since she has an immune disorder. However, I did ask our immunologist about that. I wondered if you can really boost an immune system that genetically functions improperly. He said not really, and I have just kind of stuck with that. And let me just add, that Hannah does not have a deficiency and our doctor does not call it that. She has Hyper Ige, so she actually makes too much immunoglobulin. So, he classified it as an immune disorder. So, what do you all know about boosting an immune system that doesn't function properly. The reason I am asking is because my daughter cannot have the flu shot because she is VERY allergic to eggs, so people have been suggesting to boost her Vitamin C consumption. Thank you, Roach, mother of Hannah, 2, Hyper Ige Syndrome ____________ _________ _________ _________ _________ _________ _ Hotmail: Powerful Free email with security by Microsoft. http://clk.atdmt. com/GBL/go/ 171222986/ direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Should you follow up on the Epicor & Focuidon, if you go to the autism-ldn list you can get a code from Dr McCandless that will get you a small discount on your first order. I didn't hear about this until after I had ordered so wanted to make sure you knew. I have been using these for a couple of weeks...no one in the house has been ill so I can't really say whether they are helping or not...and my son is homeschooled so his exposure comes only through family. I also should note that I am not in any way associated with VRP nor get anything for mentioning their products. I am just passing on someone else's ideas on the chance they will help. Good luck...jon From: kmr7275@... Date: Tue, 6 Oct 2009 12:19:00 -0700 Subject: RE: Immunity Boost Recent Activity 1 New MembersVisit Your Group Give Back for Good Get inspired by a good cause. Y! Toolbar Get it Free! easy 1-click access to your groups. Start a group in 3 easy steps. Connect with others. .. _________________________________________________________________ Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. http://clk.atdmt.com/GBL/go/171222985/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Can you tell me what the youngest age your child was when you first gave the Epicor? I went to the website, and it says that it has not been tested on children so I would need to ask my doctor first. I find it interesting that this product is not an immune booster, but a balancer, which is what we need. Anyway, since the website of the product maker, does not have child research, I wondered at what age you first started giving it. Thank you > > > Should you follow up on the Epicor & Focuidon, if you go to the autism-ldn list you can get a code from Dr McCandless that will get you a small discount on your first order. I didn't hear about this until after I had ordered so wanted to make sure you knew. > > > > I have been using these for a couple of weeks...no one in the house has been ill so I can't really say whether they are helping or not...and my son is homeschooled so his exposure comes only through family. > > > > I also should note that I am not in any way associated with VRP nor get anything for mentioning their products. I am just passing on someone else's ideas on the chance they will help. Good luck...jon > > > > From: kmr7275@... > Date: Tue, 6 Oct 2009 12:19:00 -0700 > Subject: RE: Immunity Boost > > > > > > > Recent Activity > > > 1 > New MembersVisit Your Group > > > > Give Back > for Good > > Get inspired > by a good cause. > > Y! Toolbar > Get it Free! > > easy 1-click access > to your groups. > > > Start a group > > in 3 easy steps. > Connect with others. > . > > > > > > > > _________________________________________________________________ > Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. > http://clk.atdmt.com/GBL/go/171222985/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 My son is 14 and we just started it two weeks ago. You might want to add the autism-ldn group on and try asking there. Dr McCandless recommended it to the group as a whole, so someone there has most certainly given it to children younger than my son. Dr McCandless might even have information on lower ages or recomendations. She also advocates Fucoidan and 5,000-10,000 iu vitamin D (to get to the 90 target) along with the Epicor. jon From: kmr7275@... Date: Tue, 6 Oct 2009 20:05:11 +0000 Subject: Re: Immunity Boost Can you tell me what the youngest age your child was when you first gave the Epicor? I went to the website, and it says that it has not been tested on children so I would need to ask my doctor first. I find it interesting that this product is not an immune booster, but a balancer, which is what we need. Anyway, since the website of the product maker, does not have child research, I wondered at what age you first started giving it. Thank you > > > Should you follow up on the Epicor & Focuidon, if you go to the autism-ldn list you can get a code from Dr McCandless that will get you a small discount on your first order. I didn't hear about this until after I had ordered so wanted to make sure you knew. > > > > I have been using these for a couple of weeks...no one in the house has been ill so I can't really say whether they are helping or not...and my son is homeschooled so his exposure comes only through family. > > > > I also should note that I am not in any way associated with VRP nor get anything for mentioning their products. I am just passing on someone else's ideas on the chance they will help. Good luck...jon > > > > From: kmr7275@... > Date: Tue, 6 Oct 2009 12:19:00 -0700 > Subject: RE: Immunity Boost > > > > > > > Recent Activity > > > 1 > New MembersVisit Your Group > > > > Give Back > for Good > > Get inspired > by a good cause. > > Y! Toolbar > Get it Free! > > easy 1-click access > to your groups. > > > Start a group > > in 3 easy steps. > Connect with others. > . > > > > > > > > __________________________________________________________ > Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. > http://clk.atdmt.com/GBL/go/171222985/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Have you checked with any of the manufacturers? I know that Baxter will give free if you cannot afford it. That is quite the burden to have to pay for it alone. Have you considered SubQ? It keeps the levels more stable and we have been able to actually reduce our dose since he seems to maintain his levels much better. Just some thoughts that might help reduce the cost. BARBIE From: JON FISHEL <jfishel@...> Subject: RE: Immunity Boost Date: Tuesday, October 6, 2009, 2:05 PM I belong to several different lists due to my son's developmental disability and immune system problems. One thing that Dr J. McCandless on the Autism-LDN (low dose naltraxone) board has recommended for autistic children due to their high prevelance of immune system problems is High dosages of vitamin D (particularly if you live were sunshine is less plentiful like me, Michigan) along with Epicor and Fucoidan (sp?) from VRP. She feels that getting vitamin D level up to about 90 along with use of these supplements will help either prevent flu or reduce severity. If you go to the autism list and post a question for her she is usually pretty quick about responding. She may also offer an opinion on whether LDN might in some way be of benefit as that is the focus of the list to which I belong. When younger (3, he's now 14), my son would get deathly ill with colds and such and would regress terribly...losing all speech and most cognative/education al gains. We have been doing IVIG since the age of 3 and he has recetnly been healthy enough to have a " typical " growth spurt (after being almost emaciatedly thin for years) where he put on close to 30# and gained almost 5 inches in height in less than a year. IVIG is, though, still needed as after about 3 weeks he starts to get more agitated, increased tics, poorer speech, worsened coordination. ..about 2-3 days following an IVIG infusion these symtpoms improve. Unfortunately for me, he did not get any kind of coverable diagnosis at a young age and my wife will not take him off the IVIG to test because she feels the losses could be permenent and she doesn't want to see him go down hill...so we pay out of pocket for about 15 grams every 3 weeks. At $2250, one of the things I was hopeing to find on these various lists was a less costly Ig source...my wife is a nurse and we do our own infusions and my son tolerates them well (he's into still...so when we do an infusion, he is " being repaired " ). Still hoping to find something to delay the point when we will no longer be able to aford this and will have to watch him deteriorate. ..sigh. Jon in MI groups (DOT) com From: kmr7275 (DOT) com Date: Tue, 6 Oct 2009 17:50:12 +0000 Subject: Immunity Boost Hello everyone. As you probably can relate, I tend to get a LOT of kind advice on how to boost my daughter's immune system since she has an immune disorder. However, I did ask our immunologist about that. I wondered if you can really boost an immune system that genetically functions improperly. He said not really, and I have just kind of stuck with that. And let me just add, that Hannah does not have a deficiency and our doctor does not call it that. She has Hyper Ige, so she actually makes too much immunoglobulin. So, he classified it as an immune disorder. So, what do you all know about boosting an immune system that doesn't function properly. The reason I am asking is because my daughter cannot have the flu shot because she is VERY allergic to eggs, so people have been suggesting to boost her Vitamin C consumption. Thank you, Roach, mother of Hannah, 2, Hyper Ige Syndrome ____________ _________ _________ _________ _________ _________ _ Hotmail: Powerful Free email with security by Microsoft. http://clk.atdmt. com/GBL/go/ 171222986/ direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 No,Baxter will not give it for fee just because it is not insurance covered. Since we are able to use our daughter's future college plans and nixing efforts to pay off our home in order to pay this tremendous expense, we have no " need " in their eyes. It doesn't matter that the stress is killing my wife or driving her nuts on other days. Nope, if you can come up with the money, you don't get help from anyone. sorry...guess that sounded bitter SubQ sonds so much more painful and time consuming than a quick IV...we actually do the IV's more frequently with the smaller dose rather than with longer time between larger doses for much the same reason jon From: mother5590@... Date: Tue, 6 Oct 2009 15:51:47 -0700 Subject: RE: Immunity Boost Have you checked with any of the manufacturers? I know that Baxter will give free if you cannot afford it. That is quite the burden to have to pay for it alone. Have you considered SubQ? It keeps the levels more stable and we have been able to actually reduce our dose since he seems to maintain his levels much better. Just some thoughts that might help reduce the cost. BARBIE From: JON FISHEL <jfishel@...> Subject: RE: Immunity Boost Date: Tuesday, October 6, 2009, 2:05 PM I belong to several different lists due to my son's developmental disability and immune system problems. One thing that Dr J. McCandless on the Autism-LDN (low dose naltraxone) board has recommended for autistic children due to their high prevelance of immune system problems is High dosages of vitamin D (particularly if you live were sunshine is less plentiful like me, Michigan) along with Epicor and Fucoidan (sp?) from VRP. She feels that getting vitamin D level up to about 90 along with use of these supplements will help either prevent flu or reduce severity. If you go to the autism list and post a question for her she is usually pretty quick about responding. She may also offer an opinion on whether LDN might in some way be of benefit as that is the focus of the list to which I belong. When younger (3, he's now 14), my son would get deathly ill with colds and such and would regress terribly...losing all speech and most cognative/education al gains. We have been doing IVIG since the age of 3 and he has recetnly been healthy enough to have a " typical " growth spurt (after being almost emaciatedly thin for years) where he put on close to 30# and gained almost 5 inches in height in less than a year. IVIG is, though, still needed as after about 3 weeks he starts to get more agitated, increased tics, poorer speech, worsened coordination. ..about 2-3 days following an IVIG infusion these symtpoms improve. Unfortunately for me, he did not get any kind of coverable diagnosis at a young age and my wife will not take him off the IVIG to test because she feels the losses could be permenent and she doesn't want to see him go down hill...so we pay out of pocket for about 15 grams every 3 weeks. At $2250, one of the things I was hopeing to find on these various lists was a less costly Ig source...my wife is a nurse and we do our own infusions and my son tolerates them well (he's into still...so when we do an infusion, he is " being repaired " ). Still hoping to find something to delay the point when we will no longer be able to aford this and will have to watch him deteriorate. ..sigh. Jon in MI groups (DOT) com From: kmr7275 (DOT) com Date: Tue, 6 Oct 2009 17:50:12 +0000 Subject: Immunity Boost Hello everyone. As you probably can relate, I tend to get a LOT of kind advice on how to boost my daughter's immune system since she has an immune disorder. However, I did ask our immunologist about that. I wondered if you can really boost an immune system that genetically functions improperly. He said not really, and I have just kind of stuck with that. And let me just add, that Hannah does not have a deficiency and our doctor does not call it that. She has Hyper Ige, so she actually makes too much immunoglobulin. So, he classified it as an immune disorder. So, what do you all know about boosting an immune system that doesn't function properly. The reason I am asking is because my daughter cannot have the flu shot because she is VERY allergic to eggs, so people have been suggesting to boost her Vitamin C consumption. Thank you, Roach, mother of Hannah, 2, Hyper Ige Syndrome ____________ _________ _________ _________ _________ _________ _ Hotmail: Powerful Free email with security by Microsoft. http://clk.atdmt. com/GBL/go/ 171222986/ direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 I understand you frustration and bitterness. So insurance does not pay why?? It is a very difficult position you are in at this time. I too have lost everything trying to pay for my sons and my daughters medical bills. I now am on SSDI for myself and my son is living in another state across the country because I cannot sell my house and he cannot get insurance in this state. It is exhausting trying to figure out how to make it all work. I am also an RN and it is mind boggling to see how complicated it can get. We LOVE sub Q and it does last longer in the tissues than IV. My son says it does not hurt very much after the first couple of times and the needles are tiny. For us the 3rd week of bottoming out and the side effects and potential risks are not worth staying with IV for us. BARBIE From: JON FISHEL <jfishelmsn (DOT) com> Subject: RE: Immunity Boost groups (DOT) com Date: Tuesday, October 6, 2009, 2:05 PM I belong to several different lists due to my son's developmental disability and immune system problems. One thing that Dr J. McCandless on the Autism-LDN (low dose naltraxone) board has recommended for autistic children due to their high prevelance of immune system problems is High dosages of vitamin D (particularly if you live were sunshine is less plentiful like me, Michigan) along with Epicor and Fucoidan (sp?) from VRP. She feels that getting vitamin D level up to about 90 along with use of these supplements will help either prevent flu or reduce severity. If you go to the autism list and post a question for her she is usually pretty quick about responding. She may also offer an opinion on whether LDN might in some way be of benefit as that is the focus of the list to which I belong. When younger (3, he's now 14), my son would get deathly ill with colds and such and would regress terribly...losing all speech and most cognative/education al gains. We have been doing IVIG since the age of 3 and he has recetnly been healthy enough to have a " typical " growth spurt (after being almost emaciatedly thin for years) where he put on close to 30# and gained almost 5 inches in height in less than a year. IVIG is, though, still needed as after about 3 weeks he starts to get more agitated, increased tics, poorer speech, worsened coordination. ..about 2-3 days following an IVIG infusion these symtpoms improve. Unfortunately for me, he did not get any kind of coverable diagnosis at a young age and my wife will not take him off the IVIG to test because she feels the losses could be permenent and she doesn't want to see him go down hill...so we pay out of pocket for about 15 grams every 3 weeks. At $2250, one of the things I was hopeing to find on these various lists was a less costly Ig source...my wife is a nurse and we do our own infusions and my son tolerates them well (he's into still...so when we do an infusion, he is " being repaired " ). Still hoping to find something to delay the point when we will no longer be able to aford this and will have to watch him deteriorate. ..sigh. Jon in MI groups (DOT) com From: kmr7275 (DOT) com Date: Tue, 6 Oct 2009 17:50:12 +0000 Subject: Immunity Boost Hello everyone. As you probably can relate, I tend to get a LOT of kind advice on how to boost my daughter's immune system since she has an immune disorder. However, I did ask our immunologist about that. I wondered if you can really boost an immune system that genetically functions improperly. He said not really, and I have just kind of stuck with that. And let me just add, that Hannah does not have a deficiency and our doctor does not call it that. She has Hyper Ige, so she actually makes too much immunoglobulin. So, he classified it as an immune disorder. So, what do you all know about boosting an immune system that doesn't function properly. The reason I am asking is because my daughter cannot have the flu shot because she is VERY allergic to eggs, so people have been suggesting to boost her Vitamin C consumption. Thank you, Roach, mother of Hannah, 2, Hyper Ige Syndrome ____________ _________ _________ _________ _________ _________ _ Hotmail: Powerful Free email with security by Microsoft. http://clk.atdmt. com/GBL/go/ 171222986/ direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 I'm coming out of lurkdom. :)Sub-q is less expensive (depending on the brand) and not painful. I just set up my daughter seconds ago and she felt nothing and is doing her homework. She's had many more well days with sq than ivig (IV was painful for her and led to panic attacks). Not sure people here can guide you toward getting ivig paid for but there are parents here whose kids have mito issues and understand the fear of decompensation from infections...and how ivig has helped. And can support you with trying sq...if you ever desire. Mom to dani cvid on sq Sent on the Now Network™ from my Sprint® BlackBerry Immunity Boost Hello everyone. As you probably can relate, I tend to get a LOT of kind advice on how to boost my daughter's immune system since she has an immune disorder. However, I did ask our immunologist about that. I wondered if you can really boost an immune system that genetically functions improperly. He said not really, and I have just kind of stuck with that. And let me just add, that Hannah does not have a deficiency and our doctor does not call it that. She has Hyper Ige, so she actually makes too much immunoglobulin. So, he classified it as an immune disorder. So, what do you all know about boosting an immune system that doesn't function properly. The reason I am asking is because my daughter cannot have the flu shot because she is VERY allergic to eggs, so people have been suggesting to boost her Vitamin C consumption. Thank you, Roach, mother of Hannah, 2, Hyper Ige Syndrome ____________ _________ _________ _________ _________ _________ _ Hotmail: Powerful Free email with security by Microsoft. http://clk.atdmt. com/GBL/go/ 171222986/ direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 My impression had been that subQ takes a fair amount of time. My son is extremely active...it is often difficult to deal with the relatively short time involved with IVIG even though he is very good about staying pretty still for the half hour or so it takes. I doubt he would tolerate a lenghty hook-up for subQ. I will have to look into it a bit more. I also thought I had seen information showing that the Ig typically used for subQ had a different and higher sugar content than the gammagard or gamunex we have used. As my son has had no adverse reactions to these, I am sensative to differences with alternative products. As far as insurance, I am sure you are all familiar enough with these diagnoses that you are aware how narrow the qualifying criteria are to have a " covered " diagnosis. In fact, the doctors we have been to recently are so ridiculously against going to bat for us despite the clear benefits my son has experienced that it is almost laughable. Without the magic qualifying diagnosis, we are out in the cold as far as insurance is concerned...so we work and work and work to pay, pay pay. Jon _________________________________________________________________ Hotmail: Trusted email with powerful SPAM protection. http://clk.atdmt.com/GBL/go/177141665/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 Hi When was first diagnosed we got all kinds of advice from people - Royal Jelly, vitamin supplements, green tea products, products to drink to clear out his lung infections... What I think and understand: Hyper IgE is an immune disorder (or deficiency). Our children's bodies just don't work the way a normal body's immune system does. The only thing that will boost their immune system is artificially tricking the body by immunoglobulin infusion. But this still isn't going to fix their bones from being prone to fractures, or stop the infections on their skin. The only treatments we do other than IVIG is antibiotics every day, Betaderm for skin infections, and vitamin D in the winter (even that is questionable, but I guess it can't hurt). A multi vitamin isn't going to hurt either, neither is vitamin C - ALL my children get these through the winter months. But vitamin C isn't going to fix Hannah's immune disorder - I wish it was that simple. I find that a lot of people, when told about my child's PID, have their 5 cents to put in and want so badly to offer a solution. What we really need is understanding, support, and listening. Re the flu shot - has the flu shot every fall, as do my other 2 kids and my husband and myself. There is discussion at Sick Kids whether this is even useful or not since he probably doesn't mount a significant antibody response and even if he did he probably doesn't maintain it for the flu season... but again, every little bit helps and it doesn't hurt (ok - it does hurt). Can you look into a flu shot without egg ? I don't know what they have in the US. Kim, mom to - age 7 with Hyper Ige (Job Syndrome) and on IVIG From: kmr7275@... Date: Tue, 6 Oct 2009 17:50:12 +0000 Subject: Immunity Boost Hello everyone. As you probably can relate, I tend to get a LOT of kind advice on how to boost my daughter's immune system since she has an immune disorder. However, I did ask our immunologist about that. I wondered if you can really boost an immune system that genetically functions improperly. He said not really, and I have just kind of stuck with that. And let me just add, that Hannah does not have a deficiency and our doctor does not call it that. She has Hyper Ige, so she actually makes too much immunoglobulin. So, he classified it as an immune disorder. So, what do you all know about boosting an immune system that doesn't function properly. The reason I am asking is because my daughter cannot have the flu shot because she is VERY allergic to eggs, so people have been suggesting to boost her Vitamin C consumption. Thank you, Roach, mother of Hannah, 2, Hyper Ige Syndrome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 Our subQ only takes about an hour each week. It goes in while my son plays video games and he does not complain generally. We do not use Vivaglobin but use the Baxter Product Gammaimmune S/D that is the usual 10% not the 16% that Vivaglobin has. We have been VERY happy with it. No redness or irritation at the site. My son does his in his love handle area of his hips. We have seen a great improvement in his infection rates as well as he does not dip and get the fatigue he use to the week before his infusion. We also have not had to go up on his dose but actually went down on it since his levels stay so good on SubQ. BARBIE From: JON FISHEL <jfishel@...> Subject: RE: Immunity Boost Date: Wednesday, October 7, 2009, 8:32 AM My impression had been that subQ takes a fair amount of time. My son is extremely active...it is often difficult to deal with the relatively short time involved with IVIG even though he is very good about staying pretty still for the half hour or so it takes. I doubt he would tolerate a lenghty hook-up for subQ. I will have to look into it a bit more. I also thought I had seen information showing that the Ig typically used for subQ had a different and higher sugar content than the gammagard or gamunex we have used. As my son has had no adverse reactions to these, I am sensative to differences with alternative products. As far as insurance, I am sure you are all familiar enough with these diagnoses that you are aware how narrow the qualifying criteria are to have a " covered " diagnosis. In fact, the doctors we have been to recently are so ridiculously against going to bat for us despite the clear benefits my son has experienced that it is almost laughable. Without the magic qualifying diagnosis, we are out in the cold as far as insurance is concerned... so we work and work and work to pay, pay pay. Jon ____________ _________ _________ _________ _________ _________ _ Hotmail: Trusted email with powerful SPAM protection. http://clk.atdmt. com/GBL/go/ 177141665/ direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 My son, Blake is 17. He is Autistic. We do sub-q 2 x's weelky. he gets 10 gram both times. It takes us 1 hr.s to do his. That sinot a lot of time. He has been doing sub-q with Gammagard S/D which is a 10% solution & goes in faster than VIVa. which is a 16 % solution. We had to go through Baxter and the FDA to get Gammagard S/D approved for Sub-Q. Blake has lots of sensory isses that almnost prevented us getting to do sub-q at home. I do all the work for him to have a very successful infusion. I am NOT a nurse. Blake also has a phobia of needles, but we have learned to talk him through it and we also do it after he gets his bedtime meds. that way he is quite relaxed & falls off to sleep. As far as the easiest way to pay.....Blake has both Insurance and SC Medicaid. When insurance doesn't pay,Medicaid picks up.....but since his Dad works at PFIZER they use caremarx for meds. all Blake meds & supplies are taken care of. They do not ask for levels or anything, they just fill the order after I call for the meds. & supplies. The supplies are paid for by Medicaid. THere is a waiver that you can try for where the Medicaid is offered under your son's own income....it is not based on Yours or your wife's income. it is called TEFRA. All stats have some form of this......Blake has had it since he was 3. All it states is that your child is better cared for at home and not in an institution and his care is cheaper at home!!! Might take some foot work, but it IS worth it & you WILL have IVIG or sub-q covered!!!! just my 2 cents worth One more thing, as far as Immune Boost.....make sure your dr. approves it for your immunocompromised child.....Ours will only allow blake to take the VIT. because his Vit. D deficiency is so severe he absolutel doen't absorb it from the sun or orally. His sia also taking Calcium tablets(paid for by medicaid) 3x's daily with 15 drops of Vit. A & D orally. The way it is sxplained to us...... " When a child has a known immunedeficieny, no matter how mild or how severe, you can't " Boost " what is NOT there. THere fore you bring more harm than good because some fo the " boost " meds are like giving your child poison....that last thing any of us want to do...... a child on IVIG or sub-q should NEVER be given suppliments unless a Dr. tells you it it safe to do so!!!! " Only offering what I have been told & learned over the past 17 yrs. , Mom to Blake, 17 Severe Combined Immunodeficiency with Complete T-Cell Dysfunction Severe Asthma, GERD Osteoporosis, Genetic ProthrombinDeffect, Autism(moderate) Sensory Intergrated Moteor Skills Delays and Auditory Sensory Delays http://www.caringbridge.org/visit/thetalesofblake " Children are like butterflies in the wind. Some fly higher than others, BUT each one flies the best they can!!!! " From: JON FISHEL <jfishel@...> Subject: RE: Immunity Boost Date: Wednesday, October 7, 2009, 9:32 AM My impression had been that subQ takes a fair amount of time. My son is extremely active...it is often difficult to deal with the relatively short time involved with IVIG even though he is very good about staying pretty still for the half hour or so it takes. I doubt he would tolerate a lenghty hook-up for subQ. I will have to look into it a bit more. I also thought I had seen information showing that the Ig typically used for subQ had a different and higher sugar content than the gammagard or gamunex we have used. As my son has had no adverse reactions to these, I am sensative to differences with alternative products. As far as insurance, I am sure you are all familiar enough with these diagnoses that you are aware how narrow the qualifying criteria are to have a " covered " diagnosis. In fact, the doctors we have been to recently are so ridiculously against going to bat for us despite the clear benefits my son has experienced that it is almost laughable. Without the magic qualifying diagnosis, we are out in the cold as far as insurance is concerned... so we work and work and work to pay, pay pay. Jon ____________ _________ _________ _________ _________ _________ _ Hotmail: Trusted email with powerful SPAM protection. http://clk.atdmt. com/GBL/go/ 177141665/ direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 Hi Kim. Thanks for your input. It helps to hear from someone in the same boat as me. I think I do understand the same things that you do. As of right now, we still have been doing really well on the antibiotics. There have been no skin infections or lung infections since we started them. But last winter, she was sick a LOT. It seemed like her little body was picking up everything it possibly could. So, right now, since that is all that we are experiencing, I am wanting to help her body at least, not pick up all of those things so much. I do understand that by giving her vitamin C and things like that, it will not help the skin infections, and lung infections and the bone problem. And I know she has an entirely different immune system, than my other kids. I just want to know that I am doing EVERYTHING I possibly can. So far, they have not put her in IVIG so, that is not even an option right now. I have contacted her immunologist about the Epicor that was mentioned and am waiting to hear back from her. What is neat about that product is that is supposed to balance the immune response. But again, I know it might not work quite the same in Hannah as it would other people. But as long as it doesn't hurt her, I figure why not give it a try. In the mean time, I think I will at least push the vitamin C and D. No, they do not make any eggless flu shots, which really stinks. They have tested her immune response to her other vaccinations, and they have all been good. The rest of our family is going to go ahead and get the flu shot and hopefully that will help things. Well, thanks again. > > > Hi > > > > When was first diagnosed we got all kinds of advice from people - Royal Jelly, vitamin supplements, green tea products, products to drink to clear out his lung infections... > > > > What I think and understand: Hyper IgE is an immune disorder (or deficiency). Our children's bodies just don't work the way a normal body's immune system does. The only thing that will boost their immune system is artificially tricking the body by immunoglobulin infusion. But this still isn't going to fix their bones from being prone to fractures, or stop the infections on their skin. > > > > The only treatments we do other than IVIG is antibiotics every day, Betaderm for skin infections, and vitamin D in the winter (even that is questionable, but I guess it can't hurt). A multi vitamin isn't going to hurt either, neither is vitamin C - ALL my children get these through the winter months. But vitamin C isn't going to fix Hannah's immune disorder - I wish it was that simple. > > > > I find that a lot of people, when told about my child's PID, have their 5 cents to put in and want so badly to offer a solution. What we really need is understanding, support, and listening. > > > > Re the flu shot - has the flu shot every fall, as do my other 2 kids and my husband and myself. There is discussion at Sick Kids whether this is even useful or not since he probably doesn't mount a significant antibody response and even if he did he probably doesn't maintain it for the flu season... but again, every little bit helps and it doesn't hurt (ok - it does hurt). Can you look into a flu shot without egg ? I don't know what they have in the US. > > > > Kim, mom to - age 7 with Hyper Ige (Job Syndrome) and on IVIG > > > > From: kmr7275@... > Date: Tue, 6 Oct 2009 17:50:12 +0000 > Subject: Immunity Boost > > > > > > Hello everyone. As you probably can relate, I tend to get a LOT of kind advice on how to boost my daughter's immune system since she has an immune disorder. However, I did ask our immunologist about that. I wondered if you can really boost an immune system that genetically functions improperly. He said not really, and I have just kind of stuck with that. And let me just add, that Hannah does not have a deficiency and our doctor does not call it that. She has Hyper Ige, so she actually makes too much immunoglobulin. So, he classified it as an immune disorder. So, what do you all know about boosting an immune system that doesn't function properly. The reason I am asking is because my daughter cannot have the flu shot because she is VERY allergic to eggs, so people have been suggesting to boost her Vitamin C consumption. > Thank you, > Roach, mother of Hannah, 2, Hyper Ige Syndrome > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 you may have already tried this.....but have you tried Childrens special health care services? the income guidelines are not as strict as straight Medicaids, and as for my kids, we've been lucky enough to have private ins(for the moment), plus medicaid, plus CSHCS. However, we didnt initially....and I was taking my check straight to Rite Aid every month! and I actually found this stuff out on my own and its saved us so much money!! I didnt know I could have medicaid as secondary or even CSHCS as third, but it works well and I have three kids on IVIG(we're in MI, too, we go to UM for infusions)at this point its covered 100%. valarie > > > I belong to several different lists due to my son's developmental disability and immune system problems. One thing that Dr J. McCandless on the Autism-LDN (low dose naltraxone) board has recommended for autistic children due to their high prevelance of immune system problems is High dosages of vitamin D (particularly if you live were sunshine is less plentiful like me, Michigan) along with Epicor and Fucoidan (sp?) from VRP. She feels that getting vitamin D level up to about 90 along with use of these supplements will help either prevent flu or reduce severity. If you go to the autism list and post a question for her she is usually pretty quick about responding. She may also offer an opinion on whether LDN might in some way be of benefit as that is the focus of the list to which I belong. > > > > When younger (3, he's now 14), my son would get deathly ill with colds and such and would regress terribly...losing all speech and most cognative/educational gains. We have been doing IVIG since the age of 3 and he has recetnly been healthy enough to have a " typical " growth spurt (after being almost emaciatedly thin for years) where he put on close to 30# and gained almost 5 inches in height in less than a year. IVIG is, though, still needed as after about 3 weeks he starts to get more agitated, increased tics, poorer speech, worsened coordination...about 2-3 days following an IVIG infusion these symtpoms improve. Unfortunately for me, he did not get any kind of coverable diagnosis at a young age and my wife will not take him off the IVIG to test because she feels the losses could be permenent and she doesn't want to see him go down hill...so we pay out of pocket for about 15 grams every 3 weeks. At $2250, one of the things I was hopeing to find on these various lists was a less costly Ig source...my wife is a nurse and we do our own infusions and my son tolerates them well (he's into still...so when we do an infusion, he is " being repaired " ). Still hoping to find something to delay the point when we will no longer be able to aford this and will have to watch him deteriorate...sigh. > > > > Jon in MI > > > > > > > From: kmr7275@... > Date: Tue, 6 Oct 2009 17:50:12 +0000 > Subject: Immunity Boost > > > > > > Hello everyone. As you probably can relate, I tend to get a LOT of kind advice on how to boost my daughter's immune system since she has an immune disorder. However, I did ask our immunologist about that. I wondered if you can really boost an immune system that genetically functions improperly. He said not really, and I have just kind of stuck with that. And let me just add, that Hannah does not have a deficiency and our doctor does not call it that. She has Hyper Ige, so she actually makes too much immunoglobulin. So, he classified it as an immune disorder. So, what do you all know about boosting an immune system that doesn't function properly. The reason I am asking is because my daughter cannot have the flu shot because she is VERY allergic to eggs, so people have been suggesting to boost her Vitamin C consumption. > Thank you, > Roach, mother of Hannah, 2, Hyper Ige Syndrome > > > > > > > > > > _________________________________________________________________ > Hotmail: Powerful Free email with security by Microsoft. > http://clk.atdmt.com/GBL/go/171222986/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 subq has been offered to us and at this time we're declining. My kids are 12,9, and 7, I talked it over with them and they all agree that they would rather do one short day a month than one day every week. Esp my daughter, she has some emotional issues that we've worked thru with IVIG, she is attached to her nurse:) and has a routine that we really dont want to rock right now. She says she doesnt want the IG in our house......she wants to leave the sick stuff at the hospital. So for now, we continue with all 3 on IVIG, once a month and this is what we've done for yrs. I think we are a minority, lol, I think everyone elses kids like subq. But I appreciate that we have the choice. valarie > > > My impression had been that subQ takes a fair amount of time. My son is extremely active...it is often difficult to deal with the relatively short time involved with IVIG even though he is very good about staying pretty still for the half hour or so it takes. I doubt he would tolerate a lenghty hook-up for subQ. I will have to look into it a bit more. I also thought I had seen information showing that the Ig typically used for subQ had a different and higher sugar content than the gammagard or gamunex we have used. As my son has had no adverse reactions to these, I am sensative to differences with alternative products. > > > > As far as insurance, I am sure you are all familiar enough with these diagnoses that you are aware how narrow the qualifying criteria are to have a " covered " diagnosis. In fact, the doctors we have been to recently are so ridiculously against going to bat for us despite the clear benefits my son has experienced that it is almost laughable. Without the magic qualifying diagnosis, we are out in the cold as far as insurance is concerned...so we work and work and work to pay, pay pay. > > > > Jon > > > > > > > > > > > > _________________________________________________________________ > Hotmail: Trusted email with powerful SPAM protection. > http://clk.atdmt.com/GBL/go/177141665/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 subq has been offered to us and at this time we're declining. My kids are 12,9, and 7, I talked it over with them and they all agree that they would rather do one short day a month than one day every week. Esp my daughter, she has some emotional issues that we've worked thru with IVIG, she is attached to her nurse:) and has a routine that we really dont want to rock right now. She says she doesnt want the IG in our house......she wants to leave the sick stuff at the hospital. So for now, we continue with all 3 on IVIG, once a month and this is what we've done for yrs. I think we are a minority, lol, I think everyone elses kids like subq. But I appreciate that we have the choice. valarie > > > My impression had been that subQ takes a fair amount of time. My son is extremely active...it is often difficult to deal with the relatively short time involved with IVIG even though he is very good about staying pretty still for the half hour or so it takes. I doubt he would tolerate a lenghty hook-up for subQ. I will have to look into it a bit more. I also thought I had seen information showing that the Ig typically used for subQ had a different and higher sugar content than the gammagard or gamunex we have used. As my son has had no adverse reactions to these, I am sensative to differences with alternative products. > > > > As far as insurance, I am sure you are all familiar enough with these diagnoses that you are aware how narrow the qualifying criteria are to have a " covered " diagnosis. In fact, the doctors we have been to recently are so ridiculously against going to bat for us despite the clear benefits my son has experienced that it is almost laughable. Without the magic qualifying diagnosis, we are out in the cold as far as insurance is concerned...so we work and work and work to pay, pay pay. > > > > Jon > > > > > > > > > > > > _________________________________________________________________ > Hotmail: Trusted email with powerful SPAM protection. > http://clk.atdmt.com/GBL/go/177141665/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 My son would not be able to tolerate subQ (couldn't possibly sit still for any length of time without being knocked out cold), so believe me I don't think you are the only one. He is very cooperative with the IV...we do it ourselves at home (wife is a nurse and I assist). Of course mom has a little stress about poking her own son...and when he points out that " ...the medicine is making a bubble in my skin... " because the butterfly has come out of the vein, it doesn't help mom's stress level. He also occasionally keeps up a banter about not liking shots or other comments that stress mom although he is cooperative the whole time, we get it done fairly rapidly and, like the Tank Engine, he proclaims that he " ...has been mended... " when we are through. Being autistic, his objections aren't what your NT children might have, but I understand. Jon From: osdbmom@... Date: Tue, 13 Oct 2009 19:01:19 +0000 Subject: Re: Immunity Boost subq has been offered to us and at this time we're declining. My kids are 12,9, and 7, I talked it over with them and they all agree that they would rather do one short day a month than one day every week. Esp my daughter, she has some emotional issues that we've worked thru with IVIG, she is attached to her nurse:) and has a routine that we really dont want to rock right now. She says she doesnt want the IG in our house......she wants to leave the sick stuff at the hospital. So for now, we continue with all 3 on IVIG, once a month and this is what we've done for yrs. I think we are a minority, lol, I think everyone elses kids like subq. But I appreciate that we have the choice. valarie Recent Activity 1 New MembersVisit Your Group Give Back for Good Get inspired by a good cause. Y! Toolbar Get it Free! easy 1-click access to your groups. Start a group in 3 easy steps. Connect with others. .. _________________________________________________________________ Hotmail: Powerful Free email with security by Microsoft. http://clk.atdmt.com/GBL/go/171222986/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 " ...and I was taking my check straight to Rite Aid every month! and I actually found this stuff out on my own and its saved us so much money!! I didnt know I could have medicaid as secondary or even CSHCS as third, but it works well and I have three kids on IVIG(we're in MI, too, we go to UM for infusions)at this point its covered 100%. valarie... " .. I have looked into that. The obstacle we have is that my son does not meet the classic criteria for a diagnosis which is covered. So despite all the evidence of improvement, becuase his Ig profiles when he was tested years ago do not meet a diagnosis criteria, we can't get coverage from anyone. Small world, My wife is a nurse at UofM hospital. She does all of our infusions at home. Do you have everything covered with this (nursing care in addition to the drug)? Jon _________________________________________________________________ Hotmail: Powerful Free email with security by Microsoft. http://clk.atdmt.com/GBL/go/171222986/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 , You do what is best for your kids. In my opinion, the fact that your kids feel like they were able to make the choice is awesome. There is so much that they can not control with this disease, that anything they can is a miracle. SubQ is not for everyone. We love it, but that is just us. has waffled about going back to IVIG for the same reasons you stated. (Except it was a 12 hour hospital day for us because of side effects.) Once he realized that he was in control of the decision, he chose to stick with the SubQ. You are doing a great job-keep up your good work Mom! Mom to -PIDD and Tori-sluggish Immune System. From: osdbmom@... Date: Tue, 13 Oct 2009 19:01:19 +0000 Subject: Re: Immunity Boost subq has been offered to us and at this time we're declining. My kids are 12,9, and 7, I talked it over with them and they all agree that they would rather do one short day a month than one day every week. Esp my daughter, she has some emotional issues that we've worked thru with IVIG, she is attached to her nurse:) and has a routine that we really dont want to rock right now. She says she doesnt want the IG in our house......she wants to leave the sick stuff at the hospital. So for now, we continue with all 3 on IVIG, once a month and this is what we've done for yrs. I think we are a minority, lol, I think everyone elses kids like subq. But I appreciate that we have the choice. valarie > > > My impression had been that subQ takes a fair amount of time. My son is extremely active...it is often difficult to deal with the relatively short time involved with IVIG even though he is very good about staying pretty still for the half hour or so it takes. I doubt he would tolerate a lenghty hook-up for subQ. I will have to look into it a bit more. I also thought I had seen information showing that the Ig typically used for subQ had a different and higher sugar content than the gammagard or gamunex we have used. As my son has had no adverse reactions to these, I am sensative to differences with alternative products. > > > > As far as insurance, I am sure you are all familiar enough with these diagnoses that you are aware how narrow the qualifying criteria are to have a " covered " diagnosis. In fact, the doctors we have been to recently are so ridiculously against going to bat for us despite the clear benefits my son has experienced that it is almost laughable. Without the magic qualifying diagnosis, we are out in the cold as far as insurance is concerned...so we work and work and work to pay, pay pay. > > > > Jon > > > > > > > > > > > > __________________________________________________________ > Hotmail: Trusted email with powerful SPAM protection. > http://clk.atdmt.com/GBL/go/177141665/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 , You do what is best for your kids. In my opinion, the fact that your kids feel like they were able to make the choice is awesome. There is so much that they can not control with this disease, that anything they can is a miracle. SubQ is not for everyone. We love it, but that is just us. has waffled about going back to IVIG for the same reasons you stated. (Except it was a 12 hour hospital day for us because of side effects.) Once he realized that he was in control of the decision, he chose to stick with the SubQ. You are doing a great job-keep up your good work Mom! Mom to -PIDD and Tori-sluggish Immune System. From: osdbmom@... Date: Tue, 13 Oct 2009 19:01:19 +0000 Subject: Re: Immunity Boost subq has been offered to us and at this time we're declining. My kids are 12,9, and 7, I talked it over with them and they all agree that they would rather do one short day a month than one day every week. Esp my daughter, she has some emotional issues that we've worked thru with IVIG, she is attached to her nurse:) and has a routine that we really dont want to rock right now. She says she doesnt want the IG in our house......she wants to leave the sick stuff at the hospital. So for now, we continue with all 3 on IVIG, once a month and this is what we've done for yrs. I think we are a minority, lol, I think everyone elses kids like subq. But I appreciate that we have the choice. valarie > > > My impression had been that subQ takes a fair amount of time. My son is extremely active...it is often difficult to deal with the relatively short time involved with IVIG even though he is very good about staying pretty still for the half hour or so it takes. I doubt he would tolerate a lenghty hook-up for subQ. I will have to look into it a bit more. I also thought I had seen information showing that the Ig typically used for subQ had a different and higher sugar content than the gammagard or gamunex we have used. As my son has had no adverse reactions to these, I am sensative to differences with alternative products. > > > > As far as insurance, I am sure you are all familiar enough with these diagnoses that you are aware how narrow the qualifying criteria are to have a " covered " diagnosis. In fact, the doctors we have been to recently are so ridiculously against going to bat for us despite the clear benefits my son has experienced that it is almost laughable. Without the magic qualifying diagnosis, we are out in the cold as far as insurance is concerned...so we work and work and work to pay, pay pay. > > > > Jon > > > > > > > > > > > > __________________________________________________________ > Hotmail: Trusted email with powerful SPAM protection. > http://clk.atdmt.com/GBL/go/177141665/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 ok, but straight medicaid doesnt have medical guidelines, only financial. You might still be able to get that as secondary. We also went the route of SSI. Although my kids were initially denied, we fought for three yrs and finally won. And the SSI comes with Medicaid, which was the reason we fought for it. We drive 70 miles often from where we live to UM. Even my littlest kid will tell me the nurses are better there than here(in that they mostly listen to him, and what he asks for, as in where he wants his IV, etc). The nurses in the peds infusion room ROCK. Im glad it works out for you to do them at home. valarie > > > " ...and I was taking my check straight to Rite Aid every month! and I actually found this stuff out on my own and its saved us so much money!! I didnt know I could have medicaid as secondary or even CSHCS as third, but it works well and I have three kids on IVIG(we're in MI, too, we go to UM for infusions)at this point its covered 100%. > > valarie... " > > > > .. > > > > I have looked into that. The obstacle we have is that my son does not meet the classic criteria for a diagnosis which is covered. So despite all the evidence of improvement, becuase his Ig profiles when he was tested years ago do not meet a diagnosis criteria, we can't get coverage from anyone. > > > > Small world, My wife is a nurse at UofM hospital. She does all of our infusions at home. Do you have everything covered with this (nursing care in addition to the drug)? > > > Jon > > > > > > > > > _________________________________________________________________ > Hotmail: Powerful Free email with security by Microsoft. > http://clk.atdmt.com/GBL/go/171222986/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 Valarie SS does not necessarily come with Medicaid. My son has SS but cannot get Medicaid because my SS money for my disability is too much. I have medicare but he can no longer get medicaid. I am over less than $100 per month but when my daughter graduated and I was down to one child then he lost his coverage. So you probably have it because of the # of children not because he qualifies. It also may differ in each state. BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Sun, October 18, 2009 10:03:57 AM Subject: Re: Immunity Boost ok, but straight medicaid doesnt have medical guidelines, only financial. You might still be able to get that as secondary. We also went the route of SSI. Although my kids were initially denied, we fought for three yrs and finally won. And the SSI comes with Medicaid, which was the reason we fought for it. We drive 70 miles often from where we live to UM. Even my littlest kid will tell me the nurses are better there than here(in that they mostly listen to him, and what he asks for, as in where he wants his IV, etc). The nurses in the peds infusion room ROCK. Im glad it works out for you to do them at home. valarie > > > " ...and I was taking my check straight to Rite Aid every month! and I actually found this stuff out on my own and its saved us so much money!! I didnt know I could have medicaid as secondary or even CSHCS as third, but it works well and I have three kids on IVIG(we're in MI, too, we go to UM for infusions)at this point its covered 100%. > > valarie... " > > > > .. > > > > I have looked into that. The obstacle we have is that my son does not meet the classic criteria for a diagnosis which is covered. So despite all the evidence of improvement, becuase his Ig profiles when he was tested years ago do not meet a diagnosis criteria, we can't get coverage from anyone. > > > > Small world, My wife is a nurse at UofM hospital. She does all of our infusions at home. Do you have everything covered with this (nursing care in addition to the drug)? > > > Jon > > > > > > > > > ____________ _________ _________ _________ _________ _________ _ > Hotmail: Powerful Free email with security by Microsoft. > http://clk.atdmt. com/GBL/go/ 171222986/ direct/01/ > > Quote Link to comment Share on other sites More sharing options...
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