Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 from Dale, Mom to Katy, CVID, age 20 le, I've been swamped, too. So welcome back and eventually I'll take care of contacting -- I promise! Katy got home a few minutes ago and said the Gamunex went fine. She feels rotten -- but always does after IVIG. And she says it was no worse than usual. She's in her room sewing -- so that's better than I remember -- she used to sleep all day. In His service, Dale le wrote: >Dale, >Please have e mal again if he tried or can e mail him if you tell him where to send it. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 In a message dated 7/7/2004 7:43:11 PM Eastern Daylight Time, dale@... writes: Katy got home a few minutes ago and said the Gamunex went fine. Dale, that is GREAT news!!!! Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Dear le, After I attended the SubQ discussion group maybe 3 years ago -- I've been so excited about Sub-Q and think it would be perfect for anyone over 12 to do. I don't like the idea of Mom doing it at home to a little one for fear the little one would " hate " Mom. But, once they are old enough to do it themselves -- I think it would be fabulously freeing. When you listen to these ladies talk about doing it themselves and how little it slows them down and not having any " down " time to do it. They just plug it in and go -- some infuse while they jog, some while they practice piano, some say they just go on with life -- buying groceries, eating out, etc. One lady infuses at her office while she works. Doing gymnastics wouldn't be a good idea because of the pump-- but, watching a basketball game would be okay! I was really impressed. -- But Katy won't buy it. She says she'll certainly try it before she would a port but she'll do IVIG until they can't find veins. So, tell I'm proud of him for giving it a try -- and proud of his Mom for letting him! I REALLY do think it will be wonderful in about a year from now. But it takes awhile to get through the initial stages and increasing the amount to be infused, etc, and that's a hassle at the beginning. >Hows Katy doing on GammunX ? > She did fine last month at Stanford -- and today's #2 at home. So, totally uneventful -- BUT, I don't think she had as big of a " let down " after the 3rd week. I'll have to ask her about that. Instead of being down for a whole week, she's only been dragging a couple of days. May just be coincidence -- but looks better to me. >Do you have the dates for National Convention?? > June 23-25, 2005 --- are you on the IDF mailing list?? They sent out save the date cards and you should have gotten it. Call them if you didn't because you need to be getting their newsletters, etc. >I hope you are taking care of yourself > > I'm trying. It's hard with Katy home. I jump into the " mother " role. We're trying various medications. The first one didn't do anything. Then I started one on Monday that makes me feel great -- as long as I stayed flat in bed -- when I raised my head -- I have no blood pressure. She warned us that that might happen and said it will either pass in 3 days or to come back in. This is day 2 and it's better than yesterday, so I'm hopeful!!!!! Let me know about the SubQ. Oh, I tried to contact and my mail bounced as if his was full -- maybe they are on vacation, too. I'll see if I can find his mother's address somewhere -- I know I have it somewhere!!!!! In His service, Dale >le > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 I have to say that I think it depends on how long the child has been on IVIG and had any type of medical treatment. Unfortunately this condition tends to mature kids alot faster than they should have to. Macey is 9 and has done very well with handling the initial anxiety (lasted all of 2 treatments). She now helps me to set up the packages on the table (I won't let her open them or connect anything though for fear of touching an uncovered end of tubing). She puts the tegaderm on after I emla her sites and she takes the tape and needles off at the end. Which I promptly Sharps. Ursula Holleman mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Re: Dale > Dear le, > > After I attended the SubQ discussion group maybe 3 years ago -- I've > been so excited about Sub-Q and think it would be perfect for anyone > over 12 to do. I don't like the idea of Mom doing it at home to a > little one for fear the little one would " hate " Mom. But, once they are > old enough to do it themselves -- I think it would be fabulously > freeing. > In His service, > Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 from Dale, Mom to Katy, CVID, age 20 Ursula Holleman wrote: I have to say that I think it depends on how long the child has been on IVIG and had any type of medical treatment. Unfortunately this condition tends to mature kids alot faster than they should have to. Macey is 9 and has done very well with handling the initial anxiety (lasted all of 2 treatments). She now helps me to set up the packages on the table (I won't let her open them or connect anything though for fear of touching an uncovered end of tubing). She puts the tegaderm on after I emla her sites and she takes the tape and needles off at the end. Which I promptly Sharps. I repeat my apologies for sending a private letter to le to the group. She had expressed concern about doing it herself and I am merely stating that since is old enough to handle it all himself --there should be no fear on her part. I do not go into detail about the fear or whether it is valid, real or imagined since her son is over the age of 12. But I do acknowledge that it is a very real fear on the part of a lot of mothers. I would have clarified myself further had I intended the message to be read and then discussed by a larger audience -- so since I have made that mistake I will try to clarify it here. SubQ is used extensively in Europe even with newborns. There seems to be no adverse response to the maternal bond when moms administer subQ or any other medical procedure. Mothers have historically administered glucose shots, done asthma treatments, etc. with no adverse response to the materal relationship. However, the fact that Moms have that fear is a real one that I refuse to deny. My apologies once again. I am not saying that I say one thing is private and another publicly on the board. I'm saying that I thought that I was talking only to le and is obviously beyond the point of worrying about maternal bonding problems! If I can answer any other questions about my mistake -- I'll be happy to respond. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Hi Folks, le here. I am sorry about the mix up. I want everyone to know is excited about Sub Q. We learned more about it at the IDF Oregon Family retreat. They had a young girl demonstrate. Once saw that it was not what he thought (huge needle) He wanted to ask his immunologist if he could try it. I must admit it was different than what I had invisioned. I was also hesitant due to it being a weekly thing verses every three weeks.......ok selfish mom here!........But hearing all the benefits and talking to this young girl outweighs my hesitations! Thanks to IDF volunteeres like Dale we were able to get information to our immunologist on the protocol. Our Dr was very open to it and told if thats what he wants he thinks its great..........It would give a more " normal life " would not interfer with school.........He told to give him a couple of weeks as he looks into the protocol and then he would call us. So we are waiting for the call. I will let you know when we find out more. Thanks Dale for all you help le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 In a message dated 8/14/2004 10:43:13 AM Eastern Daylight Time, ercokat@... writes: I saw your name in the IDP newsletter! Your famous! I saw Brittany's DR.'s name and picture in there. (LOL) I have to tell you all about Brittany's IVIG last week. It was her fourth time. I spoke with the Dr. before her infusion about her brand of IVIG he has her on, Carimune containing high IGA and her having no IGA. He said it was a myth about it hurting her. That only a very small percentage of people have a reaction to it. He said a lot of his patients have no IGA and are in the same one as her and are doing fine. He also said it is almost always the infusion rate and the meds that they use to premedicate and after if needed. They slowed her rate down and gave her extra meds. She did better this time but I think it needs slowed down even more next time. She did get a bad migraine which they medicated her for. They gave her meds for it during and after to take home. For 3 days her headache lasted. So I want it slowed more next time. I am however confused on the IVIG brands that should be used on a IGA deficient person! I have just heard different from everyone else than my DR. Anyone want to comment on this?? Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hi Janet, I just saw your post. the only 2 brands of IVIG that should be used on an IgA def person are Polygam and Gammaguard. they are the only two with the lowest IgA content, all the others have quite a bit. The IDF has a newsletter called Clinical Focus, it has a chart of all the available IVIG products and the breakdown of what is in what etc. You can get a copy from the IDF and give it to Brittany's Dr. When just had( I know IgA is bad enough) IgA def, and we were going to start IVIG those are the only two we would accept for her. she is on Polygam now, even though she now has CVID. I hope this helps. mom to - CVID, asthma, gerd Re: Dale In a message dated 8/14/2004 10:43:13 AM Eastern Daylight Time, ercokat@...<mailto:ercokat@...> writes: I saw your name in the IDP newsletter! Your famous! I saw Brittany's DR.'s name and picture in there. (LOL) I have to tell you all about Brittany's IVIG last week. It was her fourth time. I spoke with the Dr. before her infusion about her brand of IVIG he has her on, Carimune containing high IGA and her having no IGA. He said it was a myth about it hurting her. That only a very small percentage of people have a reaction to it. He said a lot of his patients have no IGA and are in the same one as her and are doing fine. He also said it is almost always the infusion rate and the meds that they use to premedicate and after if needed. They slowed her rate down and gave her extra meds. She did better this time but I think it needs slowed down even more next time. She did get a bad migraine which they medicated her for. They gave her meds for it during and after to take home. For 3 days her headache lasted. So I want it slowed more next time. I am however confused on the IVIG brands that should be used on a IGA deficient person! I have just heard different from everyone else than my DR. Anyone want to comment on this?? Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Where on the website is the video? If my phone line can handle the download, I'd like to see it. God bless, Wenoka Dale I was looking at the Bayer website and guess what I saw? A video with you and your beautiful daughter Katy. I just want you to know it brought tears to my eyes to watch and hear your story! Thank you for the hope you have given me. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 from Dale, Mom to Katy, CVID, age 20 Thank you, Janet. I'll forward your note to Katy -- she wants so much to encourage others -- especially those Brittany's age. She's decided to go into art therapy in order to help chronically ill children cope with all the junk! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 from Dale, Mom to Katy, CVID, age 20 Wenoka and Janet -- I would like to know where to find it also. I have the video, but I didn't know it was available on-line. (I'd love for my extended family to see it and maybe they would understand Katy a little better!) In His service, dale Wenoka & wrote: >Where on the website is the video? If my phone line can handle the download, I'd like to see it. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 I am new to this site and have not posted yet but I watched the video online also. Here is the link: http://www.gamunex.com/patient-video.cfm I thought it was very informative and encouraging for those of us new to this and searching for a dx. I will post another thread with my introduction. Kristi Mom to Lawson - 29 months Lawson's Website: www.caringbridge.org/tn/lawson > > >Where on the website is the video? If my phone line can handle the download, I'd like to see it. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 _Patient - Patient Video_ (http://www.gamunex.com/Patient-Video.cfm) Here is is! Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 In a message dated 10/28/2004 1:44:49 PM Eastern Daylight Time, dale@... writes: She's decided to go into art therapy in order to help chronically ill children cope with all the junk! That is great! Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 In a message dated 10/28/2004 10:36:58 PM Eastern Daylight Time, zanggang@... writes: , I actually found my own family!. Janet, Nice looking family you have. What a nice surprise for you huh? Is he on Gammamune or Gammunex now? Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 I talked to DR H today and he said Gammamune is the same as Gammunex. I know from looking on their site and calling them on the phone that, this isn't exactly so. I called the IDF and talked with , and she said she wondered why he ordered it that way also. But, she felt comfortable letting Brittany start on it. She said she had been on it for 10 years and she switched and did fine. Now, she also said everyone is different as we all know. So ,she said sleep on it and makeup my mind in the morning. Now, If I can relax and sleep that would be good! Please keep us in your Prayers. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Dale, We just watched part of the video tonight. Katy sure is a beautiful young woman. I can see how proud you are of her. It's wonderful that she now wants to be a role model for others. Thanks for sharing with all of us. Quoting " BBsmart2@... " <BBsmart2@...>: > > > > > > _Patient - Patient Video_ (http://www.gamunex.com/Patient-Video.cfm) Here > > is is! > > > > Janet, mom to Brittany, CVID, age 13 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Hi All, In searching for Dale's video, I actually found my own family!. Same website only under patient stories not patient videos. (http://www.gamunex.com/Patient-Stories.cfm). I didn't even know it was there. is the little guy in our picture. Janet, mom to , age 7, XLA >From: lmschatz@... >Reply- > " " < > >Subject: Re: Dale >Date: Thu, 28 Oct 2004 20:39:26 -0500 > > >Dale, We just watched part of the video tonight. Katy sure is a beautiful >young woman. I can see how proud you are of her. It's wonderful that she >now >wants to be a role model for others. Thanks for sharing with all of us. > > > > >Quoting " BBsmart2@... " <BBsmart2@...>: > > > > > > > > > > > > > _Patient - Patient Video_ (http://www.gamunex.com/Patient-Video.cfm) >Here > > > > is is! > > > > > > > > Janet, mom to Brittany, CVID, age 13 > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Thanks Janet! Yes, all of the PID stuff was quite a surprise to us. You never know what is in store for you with your own children but sometimes the adopted ones come with surprises also. We've been on Gammune since we started almost 2 years ago but we moved last month and the new doctor switched us over to Gammunex. seems to be doing fine with it. Janet, mom to age 7, XLA >From: BBsmart2@... >Reply- > >Subject: Re: Dale >Date: Thu, 28 Oct 2004 22:59:29 EDT > > > >In a message dated 10/28/2004 10:36:58 PM Eastern Daylight Time, >zanggang@... writes: > >, I actually found my own family!. > > >Janet, Nice looking family you have. What a nice surprise for you huh? Is >he >on Gammamune or Gammunex now? > >Janet, mom to Brittany, CVID, age 13 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 from Dale, Mom to Katy, CVID, age 20 Kristi, I just looked at Lawson's website -- another baby I'd love to squeeze! You guys have the cutest babies!!!! Please write when you have time and let us know what stage of diagnosis you are in. ( I didn't take the time to read your journal history -- sorry). Let us know how we can help. In His service, Dale kwells2kids wrote: >I am new to this site and have not posted yet but I watched the >video online also. Here is the link: > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 from Dale, Mom to Katy, CVID, age 20 Janet, I'll be praying for you and Brittany tomorrow. Hope it all goes well. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 In a message dated 2/15/2005 4:39:45 PM Eastern Standard Time, dale@... writes: I know, I know -- I should call her back -- but why? I'm going to drive down and visit Katy on Thursday. She's really enjoying her classes this semester and is getting to do lots of art stuff. She sounds happier than she's been in a while. Let her call you. If it's something important she will call soon. Go visit Katy and have a great time with her. Glad to hear she is happy. Tell her hello from us and give her a hug. =) Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 In a message dated 2/15/2005 4:39:45 PM Eastern Standard Time, dale@... writes: I know, I know -- I should call her back -- but why? I'm going to drive down and visit Katy on Thursday. She's really enjoying her classes this semester and is getting to do lots of art stuff. She sounds happier than she's been in a while. Let her call you. If it's something important she will call soon. Go visit Katy and have a great time with her. Glad to hear she is happy. Tell her hello from us and give her a hug. =) Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 No! I'm getting ancy. But going off the heart medication has certainly improved my function. Go figure! Seems the medication I was on was decreasing my thyroid so that my TSH was more than double normal -- so what I was feeling was not heart so much as low thyroid. That has bounced back to a nice healthy level again once I stopped taking the medication. So, I have no idea what to expect from the MRI results -- she said she'd call me by the end of the week -- but for her that may mean " next week " . I HATE waiting -- but am feeling enough better that I really don't want to know if it's bad news! I know, I know -- I should call her back -- but why? I'm going to drive down and visit Katy on Thursday. She's really enjoying her classes this semester and is getting to do lots of art stuff. She sounds happier than she's been in a while. In His service, dale Wenoka & wrote: >Hey. Have you got the results from the MRI yet??? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 No! I'm getting ancy. But going off the heart medication has certainly improved my function. Go figure! Seems the medication I was on was decreasing my thyroid so that my TSH was more than double normal -- so what I was feeling was not heart so much as low thyroid. That has bounced back to a nice healthy level again once I stopped taking the medication. So, I have no idea what to expect from the MRI results -- she said she'd call me by the end of the week -- but for her that may mean " next week " . I HATE waiting -- but am feeling enough better that I really don't want to know if it's bad news! I know, I know -- I should call her back -- but why? I'm going to drive down and visit Katy on Thursday. She's really enjoying her classes this semester and is getting to do lots of art stuff. She sounds happier than she's been in a while. In His service, dale Wenoka & wrote: >Hey. Have you got the results from the MRI yet??? > > Quote Link to comment Share on other sites More sharing options...
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