Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Breezy (11 yr. old girl) was to start the infusion over 2 mos. ago I am getting the run around. The specialist said the ped. dr. would order it the ped. dr said the specialist was to order it I've left messages for both and here we are 3 mos. later and nothing does anyone have any suggestions Laurie (Breanna 11 yr. old girl IGG deficient) Laurie L . DeSouto l.desouto@... 203-730-1556- home office 203-942-9513 - cell phone 203-797-8961 - fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 from Dale, Mom to Katy, CVID, age 20 Laurie, I don't know if it will help, but when we were in that in-between stage, I wrote a letter to Katy's pediatrician and just stated clearly that I considered her to be the primary doctor and that I would rely on her for making all the judgment calls -- that even though we would be seeing a lot of specialist -- she would order ALL blood work, she would order ALL prescriptions, etc so that everything would be under one doctor. I told her that I believed strongly that there was danger in having a lot of different specialists ordering a lot of different stuff and that I wanted her to be the PRIMARY CARE GIVER for my daughter and asked if she was comfortable doing that. It changed our relationship immediately. She took charge and we told specialists that they had to send their reports to her and that she would make the final decisions on what we allowed to be done to Katy. It worked well for us for several years until Katy got too old for a pediatrician. Now, if you choose to use your pediatrician for this, I would like to send your doctor some information about IVIG -- he/she's probably not feeling really secure about how to order it and which brand, etc. You can either send me your address or your doctor's address -- OR you can call IDF at 1-800-296-4433. The information you should request is a " 'Primary Care Physicians packet' like the one Phyllis sent to Dale Weatherford " . I'll be glad to mail it to your doctor (or to you) or you can order it through the IDF main office. I would definitely draw the line with one or the other of these doctors. But for your information, the new Immunologist that Katy saw at UCLA doesn't want to order the IVIG, handle any infections, deal with any problems, etc. She just wants Katy to come in and get her levels checked once a year and report to her. I'm not paying for her to do that!! -- so, she's back to just using a primary care doctor and we'll see an immunologist if and only if she gets in trouble. Hope something works to get this show on the road! In His service, Dale Laurie wrote: >Breezy (11 yr. old girl) was to start the infusion over 2 mos. ago I am >getting the run around. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Dale thank you so much for your reply that is a great idea and I would well come any information that you could send me or my ped as I know she feels scared about ordering the at home therapy my address is Laurie DeSouto 34Whippoorwill Road Bethel, CT 06801 again thank you Laurie L . DeSouto l.desouto@... 203-730-1556- home office 203-942-9513 - cell phone 203-797-8961 - fax -- Re: infusion therap from Dale, Mom to Katy, CVID, age 20 Laurie, I don't know if it will help, but when we were in that in-between stage, I wrote a letter to Katy's pediatrician and just stated clearly that I considered her to be the primary doctor and that I would rely on her for making all the judgment calls -- that even though we would be seeing a lot of specialist -- she would order ALL blood work, she would order ALL prescriptions, etc so that everything would be under one doctor. I told her that I believed strongly that there was danger in having a lot of different specialists ordering a lot of different stuff and that I wanted her to be the PRIMARY CARE GIVER for my daughter and asked if she was comfortable doing that. It changed our relationship immediately. She took charge and we told specialists that they had to send their reports to her and that she would make the final decisions on what we allowed to be done to Katy. It worked well for us for several years until Katy got too old for a pediatrician. Now, if you choose to use your pediatrician for this, I would like to send your doctor some information about IVIG -- he/she's probably not feeling really secure about how to order it and which brand, etc. You can either send me your address or your doctor's address -- OR you can call IDF at 1-800-296-4433. The information you should request is a " 'Primary Care Physicians packet' like the one Phyllis sent to Dale Weatherford " . I'll be glad to mail it to your doctor (or to you) or you can order it through the IDF main office. I would definitely draw the line with one or the other of these doctors. But for your information, the new Immunologist that Katy saw at UCLA doesn't want to order the IVIG, handle any infections, deal with any problems, etc. She just wants Katy to come in and get her levels checked once a year and report to her. I'm not paying for her to do that!! -- so, she's back to just using a primary care doctor and we'll see an immunologist if and only if she gets in trouble. Hope something works to get this show on the road! In His service, Dale Laurie wrote: >Breezy (11 yr. old girl) was to start the infusion over 2 mos. ago I am >getting the run around. > 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. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: http://groups. com/group//messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 from Dale, Mom to Katy, CVID, age 20 I just put it in the mail. Didn't enclose a note -- because it's time for the mail lady to run. I still recommend that you call IDF and give them your doctor's address and ask them to put her on their mailing list to continue to receive their newsletter with updates. Also, you'll want to be on their mailing list and register Breezy as a new patient. Hopefully, you can get some action going. We wait forever for the diagnosis and then to have to wait more is not fun! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Laurie, here, I just saw your post and thought I would add my 2 cents in. , our 8 y.o. dtr has just started with therapy, actually she had her 3rd infusion today. Our pediatrician is the one who does it all now, blood work, taking care of infections and ordering and overseeing her IGIV. Our dtr had been Sel IgA def, until her last tests showed CVID. The immunologist and pulmonologist send all their records to the ped and she oversees everything. She is using the IDF Physicians help with any questions( dosing, side effects, pre meds etc) and it is working out well. I'm sure she wouldn't mind speaking to your dtr's ped just for moral support etc. I do agree with Dale, your ped should contact the IDF for help. Our ped said they have been great to work with. mom to Re: infusion therap from Dale, Mom to Katy, CVID, age 20 Laurie, I don't know if it will help, but when we were in that in-between stage, I wrote a letter to Katy's pediatrician and just stated clearly that I considered her to be the primary doctor and that I would rely on her for making all the judgment calls -- that even though we would be seeing a lot of specialist -- she would order ALL blood work, she would order ALL prescriptions, etc so that everything would be under one doctor. I told her that I believed strongly that there was danger in having a lot of different specialists ordering a lot of different stuff and that I wanted her to be the PRIMARY CARE GIVER for my daughter and asked if she was comfortable doing that. It changed our relationship immediately. She took charge and we told specialists that they had to send their reports to her and that she would make the final decisions on what we allowed to be done to Katy. It worked well for us for several years until Katy got too old for a pediatrician. Now, if you choose to use your pediatrician for this, I would like to send your doctor some information about IVIG -- he/she's probably not feeling really secure about how to order it and which brand, etc. You can either send me your address or your doctor's address -- OR you can call IDF at 1-800-296-4433. The information you should request is a " 'Primary Care Physicians packet' like the one Phyllis sent to Dale Weatherford " . I'll be glad to mail it to your doctor (or to you) or you can order it through the IDF main office. I would definitely draw the line with one or the other of these doctors. But for your information, the new Immunologist that Katy saw at UCLA doesn't want to order the IVIG, handle any infections, deal with any problems, etc. She just wants Katy to come in and get her levels checked once a year and report to her. I'm not paying for her to do that!! -- so, she's back to just using a primary care doctor and we'll see an immunologist if and only if she gets in trouble. Hope something works to get this show on the road! In His service, Dale Laurie wrote: >Breezy (11 yr. old girl) was to start the infusion over 2 mos. ago I am >getting the run around. > 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. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: http://groups.<http://groups./> com/group//messages Quote Link to comment Share on other sites More sharing options...
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