Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Thanks Dale, I really appreciate all the knowledge you share Lorri hi from Dale > from Dale, Mom to Katy, 17, CVID > > made it home safely! > > Lorri, your pediatrician could call the Consulting Immunologist program > at IDF. They won't talk to you, but they'll talk to your pediatrician > or whoever is covering for your immunologist. That service is free and > the number is Monday through Friday 9-5 EST. > > Or you can call the National Immunization program at 1- and > talk with them. > > Hope that helps. > > In His service, > Dale > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Dear Dale: Thank you for taking the time to respond to my story. I have no idea what they have planned for my son, all I know is I am sure he is just as ready as I am for whatever it will be. He is a tough kid, and will adjust to whatever they need to do in order to make him feel better. My brother is fine now, and yes had the IM shots monthly. Unfortunantly my son seems to be coming down with something yet again..... you know it HAS been a week that he has felt good. BUT here comes the massive dhyarrea that usually clues me in that we are going at it again. I love this group so far. I just never pictured myself being a single mom of 23 and raising an ill infant. Thank you for your support, as well as anyone else who has responded with love and affection towards me and my son. You don't know what it means coming from people who understand rather than just the friends and family, who pat you on the head, tell you that you are going to be fine and then tell you in the same breath that it must be hard. I love you all so far and I just met you!! I know that this will keep going, and I am SOOOOO glad I found you guys! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Dear Dale: Thank you for taking the time to respond to my story. I have no idea what they have planned for my son, all I know is I am sure he is just as ready as I am for whatever it will be. He is a tough kid, and will adjust to whatever they need to do in order to make him feel better. My brother is fine now, and yes had the IM shots monthly. Unfortunantly my son seems to be coming down with something yet again..... you know it HAS been a week that he has felt good. BUT here comes the massive dhyarrea that usually clues me in that we are going at it again. I love this group so far. I just never pictured myself being a single mom of 23 and raising an ill infant. Thank you for your support, as well as anyone else who has responded with love and affection towards me and my son. You don't know what it means coming from people who understand rather than just the friends and family, who pat you on the head, tell you that you are going to be fine and then tell you in the same breath that it must be hard. I love you all so far and I just met you!! I know that this will keep going, and I am SOOOOO glad I found you guys! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2001 Report Share Posted July 28, 2001 Dear Dale, I felt the need to tell you you're an inspiration to us all!! You're words are very comforting to read. Your post to le was wonderful! I hope I someday have it in me to be so assured and peaceful. Traci, mom to Hayli(4 1/2) & Sydni (16 1/2 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2001 Report Share Posted July 28, 2001 Dear Dale, I felt the need to tell you you're an inspiration to us all!! You're words are very comforting to read. Your post to le was wonderful! I hope I someday have it in me to be so assured and peaceful. Traci, mom to Hayli(4 1/2) & Sydni (16 1/2 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Dale, Thanks for your post. It just confirmed to me that I am doing the right thing. Several years ago the lord laid on my heart that I need to treat just like I treat Rebekah(her sister). I was having a hard time doing this. I had many fights between my girls, many tears from no matter what the reason was. I agree these kids have more trouble then other kids and have more to deal with but what I have learned is they need to learn now how to deal with everything so they can deal with everything and even more as adults. When is tired and cranky or complaining I tell her I understand but go to your room and rest, or write in you journal but I don't like the way you are acting right now. It is ok to be mad, tired, or whatever but it is what you do with that that matters. We all need to learn how to control our emotions, anger etc. That is what life is all about. Dale I had started to question if I was being a real unfeeling person because would tell me I don't care about her. I knew then and now I am sure I am doing the right thing. Thanks Dale :Lorri ( 11 CVID) Hi from Dale > from Dale, Mom to Katy, CVID, age 17 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Dale/Sara Hi! Yes, we've been home a little over a week, i havent' spent much time on the computer. We started school today, so i've been busy doing last minute prep stuff. We will head off to Tuolomne Meadows in about a week and a half. I " m starting abx today, i've been well for 3 weeks--hurrah!!!!!!!!!, the boys are doing well, they've been off everything (except the reflux meds) for a couple of weeks. Such an unusual and marvelous respite for us!! Sara--where are you in KS? My mom is there, i'm sure she is the root of our family's ID--she is not yet diagnosed, but fits the textbook profile of CVID. I would love to hook her up with you if she is within shooting distance (she's in SE KS). THank you!! May God give each of you strength to deal with your pumpkins, especially to those of you in such difficult stages right now. Sorry to not encourage you by name, i am keeping up, i just tend to lurk most of the time. Take care , everyone! warmly, Maurita (IgA def),mama to Wesley (sel. IgA def), , and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Dale/Sara Hi! Yes, we've been home a little over a week, i havent' spent much time on the computer. We started school today, so i've been busy doing last minute prep stuff. We will head off to Tuolomne Meadows in about a week and a half. I " m starting abx today, i've been well for 3 weeks--hurrah!!!!!!!!!, the boys are doing well, they've been off everything (except the reflux meds) for a couple of weeks. Such an unusual and marvelous respite for us!! Sara--where are you in KS? My mom is there, i'm sure she is the root of our family's ID--she is not yet diagnosed, but fits the textbook profile of CVID. I would love to hook her up with you if she is within shooting distance (she's in SE KS). THank you!! May God give each of you strength to deal with your pumpkins, especially to those of you in such difficult stages right now. Sorry to not encourage you by name, i am keeping up, i just tend to lurk most of the time. Take care , everyone! warmly, Maurita (IgA def),mama to Wesley (sel. IgA def), , and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Dale/Sara Hi! Yes, we've been home a little over a week, i havent' spent much time on the computer. We started school today, so i've been busy doing last minute prep stuff. We will head off to Tuolomne Meadows in about a week and a half. I " m starting abx today, i've been well for 3 weeks--hurrah!!!!!!!!!, the boys are doing well, they've been off everything (except the reflux meds) for a couple of weeks. Such an unusual and marvelous respite for us!! Sara--where are you in KS? My mom is there, i'm sure she is the root of our family's ID--she is not yet diagnosed, but fits the textbook profile of CVID. I would love to hook her up with you if she is within shooting distance (she's in SE KS). THank you!! May God give each of you strength to deal with your pumpkins, especially to those of you in such difficult stages right now. Sorry to not encourage you by name, i am keeping up, i just tend to lurk most of the time. Take care , everyone! warmly, Maurita (IgA def),mama to Wesley (sel. IgA def), , and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Also there is a new liquid out called Orapred which is grape flavored Prednisone. I've heard it is much better tasting. -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ http://groups.yahoo.com/group/PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Also there is a new liquid out called Orapred which is grape flavored Prednisone. I've heard it is much better tasting. -- Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ http://groups.yahoo.com/group/PedPI D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 The ORapred is actually more bitter per Lucas. I tasted it and it does have an awful after taste. IT is more concentrated 15mg/5ml. I am concerned that they have put coloring in it. We have taken him off and gone back to the other pred for now. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 The ORapred is actually more bitter per Lucas. I tasted it and it does have an awful after taste. IT is more concentrated 15mg/5ml. I am concerned that they have put coloring in it. We have taken him off and gone back to the other pred for now. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 The ORapred is actually more bitter per Lucas. I tasted it and it does have an awful after taste. IT is more concentrated 15mg/5ml. I am concerned that they have put coloring in it. We have taken him off and gone back to the other pred for now. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Now THAT is tacky. I don't have the right upgrade to use the rest of the site, so I didn't see anything except the trailer. Did you email the webmaster about it? Wenoka At 01:08 PM 08/03/2001 -0700, you wrote: >from dale, Mom to Katy, CVID, age 17 > >Here's the repeat of my letter. > >And yes, the trailer mentions being allergic -- but the " games " that >come with the web-site include one that you start the arcade type game >and try to reach a goal before your " immunity " runs out -- and you >die. Pleasant thought isn't it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Now THAT is tacky. I don't have the right upgrade to use the rest of the site, so I didn't see anything except the trailer. Did you email the webmaster about it? Wenoka At 01:08 PM 08/03/2001 -0700, you wrote: >from dale, Mom to Katy, CVID, age 17 > >Here's the repeat of my letter. > >And yes, the trailer mentions being allergic -- but the " games " that >come with the web-site include one that you start the arcade type game >and try to reach a goal before your " immunity " runs out -- and you >die. Pleasant thought isn't it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 That game on the website you mention sounds like it is just as pleasent as the movie?! This is ridiculous don't you agree?! Have to love society today! Single mom to son Dakota 16 mos. possible hypogammaglobulinemia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Dale, Thank you for that message. I really needed that. I have been pretty strong from the beginning, but now and then my nerves get the better of me and I start to fall apart. Everyone here is so helpful--THANKS. There are no local chapters in my area. I am in New Jersey. So this forum and the IDF are pretty much all I have. (Yes I did receive their material, thanks.) I would love to start a chapter in New Jersey but I feel that I still have too much to learn. Maybe someday. Again, it really does help to know that I am not a neurotic nut when I get so scared. Although meningitis is a big deal and I think I am allowed to be a little neurotic about that one.... By they way, do you know (or maybe Kimberley knows) is there a difference between viral meningitis and aseptic meningitis. I have been getting updates all morning from my neighbor and she says the current diagnosis is aseptic meningitis. They can't speak for earlier in the week (the spinal tap was only done yesterday), but she said it could have started out viral, but now, one week later they say aseptic. I already called the immuno and told him viral. He said he was going to arrange for an increased dose of IVIG for added protection on Tuesday. Should I call him back? When you look up viral meningitis it usually comes up Aseptic (Viral) Meningitis, so I assume they are the same???? If anyone knows, please post. I hate to call them again on a Saturday if I don't need to. Dale, it is very encouraging to know you daughter lives such a normal life. You seem to know her weak points and have learned to compensate for them. Hey, everyone has issues of some sort or another. Some with arthritis limitations, diabetic limitations etc. I guess we all make the best out of the cards we have been dealt. However bad, there always seems to be something worse... Thanks for the kind words. Kim - Mom to Nick, (XLA?/CVID?) and hi from Dale > from Dale, Mom to Katy, CVID, age 17 > > to all: the back is improving and I'm down to only 1 pain pill a day > and since I haven't had one yet today -- maybe I can keep my thoughts on > straight! > > Dear Kim, Welcome to the world of pedpid parenting! Very few of us > started out any differently than you are starting! When Katy was first > diagnosed my husband and I rushed to Stanford's Medical Library and > guess what -- found 10 year old information. Of course at the time we > didn't realize how quickly the field was changing and we braced for the > worst. We had so many urgent care and er visits that first couple of > years and they all turned out to be false alarms -- I felt like an idiot > -- but I also had SO MANY QUESTIONS!!!!! And I knew that my baby was > dying and no one was watching but me!!! Then I became so hostile toward > the doctors because they wouldn't answer my questions -- they seemed to > be evading the answers (my interpretation was that they were hiding > information -- in truth -- no one knows the answers -- everything is so > individualized and there's current research breaking every month or > so). I look back on those first 2 years and laugh out loud at how we > lived. I was a pathetic basketcase, Katy was a bundle of nerves. But I > kept reading and researching and becoming involved with IDF and reading > everything they put out. (If you are not receiving their material -- > call 1- and ask them to send you the Patient and Family Hand > Book and also the book " Our Immune System " for kids. Ask to be put on > their mailing list and find out who your local chapter leader is and > contact him or her!). Educate yourself, educate your family, educate > your kids, educate your teachers, and educate your doctors. > > Through 6 years of dealing with this disease the only thing I can tell > you is that Katy is unique. What bothers her doesn't bother other kids > -- what bothers other kids doesn't bother her. What bothers her at the > end of the IVIG month is different from what bothers her at the > beginning. Also, the longer you are on IVIG, the more normalized your > life will become. Katy seems to get better each year that she's been on > IVIG. I would say she is leading an absolutely normal life for a > teenager - but would put her on the lower energy level. If she uses up > too much energy -- she's got to rest to make it up or get sick. That's > pretty easy to deal with! > > Where did we come from -- Katy was born healthier than healthy. She was > a competing gymnast and still had energy to spare. At age 11 Katy quit > digesting food probably due to an advanced giardia infection (but that > was never proved). She had chronic fatigue so severely that she had > difficulty walking across the room. She had muscle and bone aches daily > and muscle cramps that were horrendous. She was staying in ear > infections and sinus infections and one eye or the other was always > blood red inflamed. We lost 3 years of school because she could not > retain information. It took us 2 years to get diagnosed, and another > year of testing before they would start IVIG. Then it took another year > of IVIG before we began to see drastic changes because her system was so > depleted. But she just keeps getting better and better. She's on a > full diet (just being careful to not expose herself to food poisoning, > etc). She's having a blast! She just walked in from a slumber party > and is headed straight to bed (typical teen). She's working a theatre > production tonight (a paid gig doing back stage tech). I never see her > because she's always on the go! > > I hope that helps some. You seem like you are on the right track. I > encourage you to find either an immunologist or a pediatrician that you > can 100% trust. That takes time! We chose our pediatrician. We tell > her everything -- our fears, our concerns, our worries. It's her job to > sort them out. Once I found Dr. Carmack, I've been able to define my > role as mother and researcher and reporter! All decisions are made > jointly unless I abdicate that. As Katy gets older -- she and Dr. > Carmack make the decisions and I'm pulling out of the loop. Katy plans > to go away to college next year -- so my days are numbered as her > medical liasion. > > Gotta get off this back -- God bless you as you begin this journey. > It's not easy, but God will guide you through it, if you will put your > trust in Him, and all of us have been there at the beginning!!! > > In His service, > Dale > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Dale I want to thank you for reminding me of this and as a single parent of two beautiful girls your words are so heartfelt. Thank you again for reminding my family of how important our faith is and to ALWAYS remember JESUS is the ROCK! Thanks Again and all my prayers go out to everyone! Marlo, Mom to Brittany (10) Chelsea (6) IGA def, Chronic sinus, Chronic Ear disease and Reactive airway.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Dale I want to thank you for reminding me of this and as a single parent of two beautiful girls your words are so heartfelt. Thank you again for reminding my family of how important our faith is and to ALWAYS remember JESUS is the ROCK! Thanks Again and all my prayers go out to everyone! Marlo, Mom to Brittany (10) Chelsea (6) IGA def, Chronic sinus, Chronic Ear disease and Reactive airway.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 My prayers are with all of America today. Hi from Dale I'm thinking of an old, old hymn, it says: " In times like these you need a Savior. In times like these you need an anchor; Be very sure, be very sure, your anchor holds and grips the Solid Rock. That Rock is Jesus, Yes, he's the One, This Rock is Jesus, The only One! I'm very sure, so very sure, My anchor holds and grips the Solid Rock! " We live in crazy times. Hug those kids and teach them that their only security is found in Jesus Christ. I have several close friends who work in the World Trade Center -- but this I know -- if they are no longer here -- they are in Heaven because their anchor was based in Jesus. I love you all -- please excuse me from deviating from the subject of PID. If anyone wants to talk off-group, please feel free to e-mail me privately. In His service, Dale This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 My prayers are with all of America today. Hi from Dale I'm thinking of an old, old hymn, it says: " In times like these you need a Savior. In times like these you need an anchor; Be very sure, be very sure, your anchor holds and grips the Solid Rock. That Rock is Jesus, Yes, he's the One, This Rock is Jesus, The only One! I'm very sure, so very sure, My anchor holds and grips the Solid Rock! " We live in crazy times. Hug those kids and teach them that their only security is found in Jesus Christ. I have several close friends who work in the World Trade Center -- but this I know -- if they are no longer here -- they are in Heaven because their anchor was based in Jesus. I love you all -- please excuse me from deviating from the subject of PID. If anyone wants to talk off-group, please feel free to e-mail me privately. In His service, Dale This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 My prayers are with all of America today. Hi from Dale I'm thinking of an old, old hymn, it says: " In times like these you need a Savior. In times like these you need an anchor; Be very sure, be very sure, your anchor holds and grips the Solid Rock. That Rock is Jesus, Yes, he's the One, This Rock is Jesus, The only One! I'm very sure, so very sure, My anchor holds and grips the Solid Rock! " We live in crazy times. Hug those kids and teach them that their only security is found in Jesus Christ. I have several close friends who work in the World Trade Center -- but this I know -- if they are no longer here -- they are in Heaven because their anchor was based in Jesus. I love you all -- please excuse me from deviating from the subject of PID. If anyone wants to talk off-group, please feel free to e-mail me privately. In His service, Dale This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Dale, I do not have your private e-mail; however, I would like to express my condolences at the loss of you friends if they were in one of the buildings. Amen to your hymn. This truly is a crazy world and it seems unfair at times. Hi from Dale > I'm thinking of an old, old hymn, it says: " In times like these you > need a Savior. In times like these you need an anchor; Be very sure, > be very sure, your anchor holds and grips the Solid Rock. That Rock is > Jesus, Yes, he's the One, This Rock is Jesus, The only One! I'm very > sure, so very sure, My anchor holds and grips the Solid Rock! " > > We live in crazy times. Hug those kids and teach them that their only > security is found in Jesus Christ. I have several close friends who > work in the World Trade Center -- but this I know -- if they are no > longer here -- they are in Heaven because their anchor was based in > Jesus. > > I love you all -- please excuse me from deviating from the subject of > PID. > If anyone wants to talk off-group, please feel free to e-mail me > privately. > > In His service, > Dale > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Dale, I do not have your private e-mail; however, I would like to express my condolences at the loss of you friends if they were in one of the buildings. Amen to your hymn. This truly is a crazy world and it seems unfair at times. Hi from Dale > I'm thinking of an old, old hymn, it says: " In times like these you > need a Savior. In times like these you need an anchor; Be very sure, > be very sure, your anchor holds and grips the Solid Rock. That Rock is > Jesus, Yes, he's the One, This Rock is Jesus, The only One! I'm very > sure, so very sure, My anchor holds and grips the Solid Rock! " > > We live in crazy times. Hug those kids and teach them that their only > security is found in Jesus Christ. I have several close friends who > work in the World Trade Center -- but this I know -- if they are no > longer here -- they are in Heaven because their anchor was based in > Jesus. > > I love you all -- please excuse me from deviating from the subject of > PID. > If anyone wants to talk off-group, please feel free to e-mail me > privately. > > In His service, > Dale > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
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