Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 Dale, Welcome back and Happy Easter! Hi from Dale > from Dale, Mom to Katy, CVID, age 16 > > I am SO far behind on messages -- but will keep working on it! I just > got home from a whirlwind college tour for Katy in Southern California. > She ended up totally exhausted and we skipped the last college because I > was afraid where the exhaustion would lead -- but the GREAT NEWS is that > she was able to do everything that everyone else did and keep up and > have fun and skip sleeping and talk all night and enjoyed Disneyland > with a group from 11 a.m. to 11 p.m. and still function!!!!! Although > when I picked her up on Sunday morning -- she was hardly coherent! All > she would say was " bed....sleep! " But she slept all day Sunday and > then spent a day at the mall with friends before collapsing again. > > Yes, college is a absolute posibility for all of those of you who are > wrestling with pre-schoolers!!! I let Katy investigate the academic > and social ends of the colleges, while I snooped around and met with > doctors and nurses in the student health centers. Both of Katy's #1 > and #2 colleges were willing to work with her needing IV's. That would > continue to be handled by Home Health Care Nurses coming into the dorm > every 28 days just like we do now. Then, the Student Health Center > wanted a protocol to be set up that would remind them to triage her to a > major hospital -- not the little local ones. There we would have a > primary care and a big name immunologist already set up to take care of > her. And because Student Health in both places is closed on weekends, > we would also have a protocol set up with Campus Safety, her Resident > Assistant, and Resident Director just to make sure she gets routed to > her main hospital and not the standard one down the street. Both of > the nurses were eager to be of service even though they were not > familiar with CVID. Both had dealt with chronic illness kids as well > as acute illness that required IV's and such in the dorms. So, they > made me feel very comfortable. When we get into the insurance > arrangements -- I may not feel quite as comfortable -- but, that can > wait until at least the end of summer!!! > > I got to meet Maurita and Tony and their lovely family. Their home just > overflows with joy and love and giggles and hugs! I was thrilled to be > surrounded by little ones who still spontaneously give " I love you's " > and free hugs. Thanks Maurita for your hospitality! I thoroughly > enjoyed myself! > > That's about all my news. I'm leaving again next week for a 3 day visit > with my son in Chicago. He just landed a research assistantship for the > summer -- so this visit has got to tide me over until the end of July. > When they grow it -- it happens really, really fast!!!! > > Wishing you all a joyous Easter season. I hope you are making some > preparations to celebrate this joyous time with your little ones and > teach them the Truth about Easter. The facts are recorded in > chapters 25-28, Mark chapters 15-16, Luke chapters 23 & 24, and > chapters 19 and 20. These are 4 different eyewitness accounts of the > same event - , Luke & were there to see for themselves and > Mark recorded 's account. May God richly bless your families at > this time. > > 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 April 19, 2001 Report Share Posted April 19, 2001 Dale: Thank you so much for your post. It was a good reminder to me of what it is that I want to teach my children...that life needs to be as near normal as possible for them and that they are going to have to learn to make-and live-with their own choices one day. Thank you again. -mom to ,8, Dysgammaglobulinemia, etc.; ,9; ,2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Dale: Your letter was beautiful. I'm going to print that one out and keep it in 's " file " for when I need to grab onto some hope. I was the one who talked about crying when seeing other " normal " kids, and I sure hope that eases soon. But seeing that others have travelled this road in front of me does give me hope. I love that story " Welcome to Holland " , I think someone posted it here once. I think of that when I'm down and it helps bring a smile to my face. I'm not " down " alot, so don't think that! It just creeps up on me sometimes. (mom to , age 2, antibody def, IgA def, partial T-cell def (CD3 & CD19) - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Dale, Thanks for asking and your prayers. Our little boy appears to be a stubborn one. For now he's staying put. I've had lots of contractions that don't seem to be doing any " work. " Keep us in your prayers--we can certainly use them. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01--and not here yet! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Dale, Thanks for asking and your prayers. Our little boy appears to be a stubborn one. For now he's staying put. I've had lots of contractions that don't seem to be doing any " work. " Keep us in your prayers--we can certainly use them. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01--and not here yet! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Dale, What is safety NET? and how would I know if Matt is enrolled? Gammimune is the ONLY IVIG he can take, and I flat refuse to let them give him anything else. He just got 20 grams Friday, and no one said anything about a shortage. Thanks for your help. , mom to Matt,13, with unknown immunodeficiency, IgG and IgA and subclass 1 and 2 deficient, ADD, asthma, multiple allergies, and IBS, and Libby,8, " normal " , except for the allergies and asthma! > from Dale, Mom to Katy, CVID, age 16 > > Well, I wasn't planning on it -- but spent all morning on the telephone > trying to locate Gammimune. Seems Bayer didn't produce for a couple of > months, but the word is that they will be up and running soon -- HOPE > HOPE. I'm praising the Lord for Safety NET!!! If you are not enrolled > and get IVIG -- you should have your doctor register you. That number > is 1-. > > , relax and celebrate the higher IgG's. We've learned to > celebrate everything possible. We'll worry about the other problems on > another day. Set it aside for now and celebrate with all your heart. > Then tomorrow, set up your own rules -- don't just quit protecting her > from things -- because you'll definitely get a sick child!!! Relax the > rules gradually. Just like introducing new foods to an infant -- do it > slowly enough that you can tell what is good and what is not. If she > stays well you can gradually introduce more new activities. > > Even if she's not needing IVIG, having no IgA puts her in the high risk > category for anything associated with the mucous membrane, i.e., stomach > bugs, lung & sinus stuff. So, I would think some precautions would > still stay in place -- Maurita deals with " just IgA " problems all the > time and it's a major nuisance to live with. She can probably better > tell you what she avoids and what she allows. > > I'm celebrating with you! > > In His service, > Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Dale, What is safety NET? and how would I know if Matt is enrolled? Gammimune is the ONLY IVIG he can take, and I flat refuse to let them give him anything else. He just got 20 grams Friday, and no one said anything about a shortage. Thanks for your help. , mom to Matt,13, with unknown immunodeficiency, IgG and IgA and subclass 1 and 2 deficient, ADD, asthma, multiple allergies, and IBS, and Libby,8, " normal " , except for the allergies and asthma! > from Dale, Mom to Katy, CVID, age 16 > > Well, I wasn't planning on it -- but spent all morning on the telephone > trying to locate Gammimune. Seems Bayer didn't produce for a couple of > months, but the word is that they will be up and running soon -- HOPE > HOPE. I'm praising the Lord for Safety NET!!! If you are not enrolled > and get IVIG -- you should have your doctor register you. That number > is 1-. > > , relax and celebrate the higher IgG's. We've learned to > celebrate everything possible. We'll worry about the other problems on > another day. Set it aside for now and celebrate with all your heart. > Then tomorrow, set up your own rules -- don't just quit protecting her > from things -- because you'll definitely get a sick child!!! Relax the > rules gradually. Just like introducing new foods to an infant -- do it > slowly enough that you can tell what is good and what is not. If she > stays well you can gradually introduce more new activities. > > Even if she's not needing IVIG, having no IgA puts her in the high risk > category for anything associated with the mucous membrane, i.e., stomach > bugs, lung & sinus stuff. So, I would think some precautions would > still stay in place -- Maurita deals with " just IgA " problems all the > time and it's a major nuisance to live with. She can probably better > tell you what she avoids and what she allows. > > I'm celebrating with you! > > In His service, > Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Dale, What is safety NET? and how would I know if Matt is enrolled? Gammimune is the ONLY IVIG he can take, and I flat refuse to let them give him anything else. He just got 20 grams Friday, and no one said anything about a shortage. Thanks for your help. , mom to Matt,13, with unknown immunodeficiency, IgG and IgA and subclass 1 and 2 deficient, ADD, asthma, multiple allergies, and IBS, and Libby,8, " normal " , except for the allergies and asthma! > from Dale, Mom to Katy, CVID, age 16 > > Well, I wasn't planning on it -- but spent all morning on the telephone > trying to locate Gammimune. Seems Bayer didn't produce for a couple of > months, but the word is that they will be up and running soon -- HOPE > HOPE. I'm praising the Lord for Safety NET!!! If you are not enrolled > and get IVIG -- you should have your doctor register you. That number > is 1-. > > , relax and celebrate the higher IgG's. We've learned to > celebrate everything possible. We'll worry about the other problems on > another day. Set it aside for now and celebrate with all your heart. > Then tomorrow, set up your own rules -- don't just quit protecting her > from things -- because you'll definitely get a sick child!!! Relax the > rules gradually. Just like introducing new foods to an infant -- do it > slowly enough that you can tell what is good and what is not. If she > stays well you can gradually introduce more new activities. > > Even if she's not needing IVIG, having no IgA puts her in the high risk > category for anything associated with the mucous membrane, i.e., stomach > bugs, lung & sinus stuff. So, I would think some precautions would > still stay in place -- Maurita deals with " just IgA " problems all the > time and it's a major nuisance to live with. She can probably better > tell you what she avoids and what she allows. > > I'm celebrating with you! > > In His service, > Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 from Dale, Mom to Katy, 16, CVID , The Safety Net program is designed to provide product to people with PID because gammaglobulin is being used for a lot of things besides PID that are NOT life/death issues. During the shortage a few years ago, it was set up by IDF so that they kept a small supply of each brand that pharmaceutical companies promised to them FIRST before anything else went to market. They also keep information on supply warehouses etc. So that essentially, if your pharmacy cannot locate product, you can call Safety Net and if anyone can get it -- they can. Then your pharmacy buys it from them. But you need to be aware that that is not a guarantee -- just a promise that they will call and fight for you and pull every string possible for you. In order to join , your doctor has to call IDF and request the paperwork for you. You can't join by yourself!! YUCK. That number is 1-. Once that paperwork is done, then your doctor can call anytime you are unable to find the right product. We've used them twice before about 3 years ago. Once they were able to ship immediately. Once we were about 4 days late for infusion -- but hey, some people had done without for weeks. The last I heard from my pharmacy was that Bayer was planning on shipping sometime next week. So, they must be up and running. said there would be an announcement today. But I don't know how we'd know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 from Dale, Mom to Katy, 16, CVID , The Safety Net program is designed to provide product to people with PID because gammaglobulin is being used for a lot of things besides PID that are NOT life/death issues. During the shortage a few years ago, it was set up by IDF so that they kept a small supply of each brand that pharmaceutical companies promised to them FIRST before anything else went to market. They also keep information on supply warehouses etc. So that essentially, if your pharmacy cannot locate product, you can call Safety Net and if anyone can get it -- they can. Then your pharmacy buys it from them. But you need to be aware that that is not a guarantee -- just a promise that they will call and fight for you and pull every string possible for you. In order to join , your doctor has to call IDF and request the paperwork for you. You can't join by yourself!! YUCK. That number is 1-. Once that paperwork is done, then your doctor can call anytime you are unable to find the right product. We've used them twice before about 3 years ago. Once they were able to ship immediately. Once we were about 4 days late for infusion -- but hey, some people had done without for weeks. The last I heard from my pharmacy was that Bayer was planning on shipping sometime next week. So, they must be up and running. said there would be an announcement today. But I don't know how we'd know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2001 Report Share Posted May 9, 2001 In a message dated 5/5/01 2:25:50 AM Pacific Daylight Time, dale@... writes: > Katy just doesn't want to pursue it anymore. > She has a headache every day of her life, some days worse than others. > Everytime we see a doctor they ask her about stress and depression Dale, Thank you for sharing. I can fully understand Katys position. Im ready to say enough.......we have ruled out the major threats and now it just seems that headaches are a part of the PID. sees a christian counselor every two weeks so the doctors have stopped bringing up depression and stress. She has been wonderful and helped talk thru hes why do I hurt questions. One of the best things we did was go into s ped when he was having a hard time understanding why did he hurt so much if the scan was clear. The ped spent 45 minutes and let ask question. He did not have all the answers and told that but it gave a better feeling about what was going on. felt more in control. I have some extra programs from the PTA convention with s peice in it. If you want I'll send you one. Let me know. When does Katy head to college? Thanks again le 11 Selective Antibody Def., Syringomyelia, IVIG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2001 Report Share Posted May 9, 2001 In a message dated 5/5/01 2:25:50 AM Pacific Daylight Time, dale@... writes: > Katy just doesn't want to pursue it anymore. > She has a headache every day of her life, some days worse than others. > Everytime we see a doctor they ask her about stress and depression Dale, Thank you for sharing. I can fully understand Katys position. Im ready to say enough.......we have ruled out the major threats and now it just seems that headaches are a part of the PID. sees a christian counselor every two weeks so the doctors have stopped bringing up depression and stress. She has been wonderful and helped talk thru hes why do I hurt questions. One of the best things we did was go into s ped when he was having a hard time understanding why did he hurt so much if the scan was clear. The ped spent 45 minutes and let ask question. He did not have all the answers and told that but it gave a better feeling about what was going on. felt more in control. I have some extra programs from the PTA convention with s peice in it. If you want I'll send you one. Let me know. When does Katy head to college? Thanks again le 11 Selective Antibody Def., Syringomyelia, IVIG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Sounds like the IV site may have gone through a nerve or irritated it. It may take a couple of weeks or even months to go away. As long as it does not impair her movement or does not seem to be an infection. From my experience it will go away. I also had a similar experience about 15 years ago. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Sounds like the IV site may have gone through a nerve or irritated it. It may take a couple of weeks or even months to go away. As long as it does not impair her movement or does not seem to be an infection. From my experience it will go away. I also had a similar experience about 15 years ago. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Sounds like the IV site may have gone through a nerve or irritated it. It may take a couple of weeks or even months to go away. As long as it does not impair her movement or does not seem to be an infection. From my experience it will go away. I also had a similar experience about 15 years ago. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Dale, Congratulations to Katy for surviving those SAT's. I sure remember the grueling test. I am sure she did great. I am sorry to hear about your mother. I hope that things get better and we are praying for her. I know how it is breaking in new doctors who are not familiar with the family''s health history especially when it is an extensive one. Thanks for sharing your experience with us about the train ride. Hopefully, ours won't be as eventful (healthwise). We are looking forward to seeing all the sights along the way. I just don't know how the girls are going to handle such a long ride. We have bought plenty to keep them busy. But, you know how many times a child can ask that magical question of " Are we almost there yet????? Belinda Rose, Mom to Allyssa and Cassie, 6 yrs old, igg immunodefficient, asthma, chronic sinusitis, IVIG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Thank you Dale. I'm still waiting for some answers in Sydni's case. Still not sure if she has PID's yet. If I can't get anywhere at the ENT on friday(and hopefully get IGG subclasses tested!) then I will call that #. You did give me a # of a person who consults, and when we spoke, he reassured me I was in the right direction. I wish things would move a little quicker! Thank you, Traci-Hayli & Sydni's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 Dale, Have a good time. Wish I could be there. Please share what you guys learn when you get back. Lorri( 111yrs CVID) Hi from Dale > from Dale, > > I'm almost packed -- great idea . Katy has donated some sorta' > spring green ribbon and I'll make them for everybody that sticks their > head in my door. PLEASE see me at the Marriott Waterfront Hotel or if > you see me around -- I'll be wearing a spring green bow on my name > tag!!! > > Yeah PEDPID!!! > > 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 June 21, 2001 Report Share Posted June 21, 2001 Dale, Have a good time. Wish I could be there. Please share what you guys learn when you get back. Lorri( 111yrs CVID) Hi from Dale > from Dale, > > I'm almost packed -- great idea . Katy has donated some sorta' > spring green ribbon and I'll make them for everybody that sticks their > head in my door. PLEASE see me at the Marriott Waterfront Hotel or if > you see me around -- I'll be wearing a spring green bow on my name > tag!!! > > Yeah PEDPID!!! > > 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 June 21, 2001 Report Share Posted June 21, 2001 Dale, Have a good time. Wish I could be there. Please share what you guys learn when you get back. Lorri( 111yrs CVID) Hi from Dale > from Dale, > > I'm almost packed -- great idea . Katy has donated some sorta' > spring green ribbon and I'll make them for everybody that sticks their > head in my door. PLEASE see me at the Marriott Waterfront Hotel or if > you see me around -- I'll be wearing a spring green bow on my name > tag!!! > > Yeah PEDPID!!! > > 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 3, 2001 Report Share Posted July 3, 2001 Hi Dale, I wanted to thank you for welcoming me into your special group. I must say that this conference was a true blessing for my girls and I. I was to say the least overwhelmed with the amount of people who are suffering the same way my daughter does. Chelsea got a double middle ear infection on the flight home and is still battling the " Goop " as we call it. We are hoping she can resolve this infection with augmenten otherwise it is back on Unysn IV every six hours. It was also a pleasure to meet your daughter she is beautiful and has your spirit. Thanks again for making us feel so special. Marlo Mom to Chelsea, IGAdef, IGM and Chronic Sinus, Ear and Reactive Airway Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 Hi Dale, I wanted to thank you for welcoming me into your special group. I must say that this conference was a true blessing for my girls and I. I was to say the least overwhelmed with the amount of people who are suffering the same way my daughter does. Chelsea got a double middle ear infection on the flight home and is still battling the " Goop " as we call it. We are hoping she can resolve this infection with augmenten otherwise it is back on Unysn IV every six hours. It was also a pleasure to meet your daughter she is beautiful and has your spirit. Thanks again for making us feel so special. Marlo Mom to Chelsea, IGAdef, IGM and Chronic Sinus, Ear and Reactive Airway Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 Hi Dale, I wanted to thank you for welcoming me into your special group. I must say that this conference was a true blessing for my girls and I. I was to say the least overwhelmed with the amount of people who are suffering the same way my daughter does. Chelsea got a double middle ear infection on the flight home and is still battling the " Goop " as we call it. We are hoping she can resolve this infection with augmenten otherwise it is back on Unysn IV every six hours. It was also a pleasure to meet your daughter she is beautiful and has your spirit. Thanks again for making us feel so special. Marlo Mom to Chelsea, IGAdef, IGM and Chronic Sinus, Ear and Reactive Airway Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2001 Report Share Posted July 4, 2001 In a message dated 7/4/01 3:49:08 PM Central Daylight Time, dale@... writes: > It was great seeing you > looking so good and I should remind you -- you haven't mentioned the > ROCK on your hand to this group!!!!! > > > , > > Are you hiding something?? > > Belinda Rose, > Mom to Allyssa (9) and Cassie (6) igg immunodefficient, asthma, chronic > Quote Link to comment Share on other sites More sharing options...
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...
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