Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Uh-Oh! Barbara, My bet is, tomorrow you are going to be, Barbara, who is very sore and wondering how just doing most of the instruction tape, most of the workout #1 and 5 minutes of Ab Rocker could make a person so sore when it didn't seem like much of a workout! :-) ~Karma Barbara - who did most of the instruction tape - most of Work out 1 and5 minutes on Ab Rocker - Wow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 How neat Barbara, I have a 10 lb Pug who settles herself on my stomach when I do crunches. So I aim to kiss her nose each time I crunch. I literally have to throw her off as she isn't going to budge. Isn't it nice to have such cute and " helpful " personal trainers? Keep well, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 To answer your questions. It has been my experience that I personally work that pelvic tilt in anytime I feel coordinated enough to get it worked in to what I am doing. I think it is personal preference. I like to work my entire body any chance I get. As for the time of the hold and lift, I again think it depends on what you are doing. If I am sitting at the computer doing my breaths and working my legs or squeezing my tush, then I can hold for a long time. If I am standing working my legs, then I can't hold it all that long. If I am laying on my back, I can't get as good a vacuum going, but can hold it. I think it is different for each person. Sometimes Rashelle can hold longer than me on the video. I think it is because she is cheating! (No offense intended) She is taking time to talk instead of doing the blow, sniff, PUH, vacuum, work or flex! She stops to talk, (reminding us what we should be doing) then, she does what we are doing! LOL! That gives her an unfair time thing. We have already started holding before she starts, so she can go longer. LOL! Sounds like I am complaining doesn't it. I'm not really. Just kind of chuckling and sharing aloud. I don't have puppies licking me, just little ones who suddenly want to carry on a long detailed conversation about something that they feel is very important, like what color should they color this? Or some other very important thing to a 4 or 2 year old! ~Karma I AM CONFUSED From: Barbara <broller@...> Hi everyone,I have been doing the Workout 1 this week - got my tapes on Monday.Here are my questions.1. When doing the arm positions should you also be doing the pelvictilt?2. Does it seem that the time of the hold and lift is different in somepositions. Sometimes I have to breath much sooner than Rashelle, thensometimes I could hold longer.For a little smile today, imagine me doing floor positions with a 1 yearold toy poodle thinking it is time to give mommy kisses. It is hard tohold a lift with a 10 pound poodle sitting on your chest and kissing -kissing - kissing.I have been attempting to combine breathing with my ab rocker, but can'tfigure if I should do one crunch with each lift, or try to do several.Any suggestions!Barbara - who did most of the instruction tape - most of Work out 1 and5 minutes on Ab Rocker - Wow! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Karma, I'm so glad you wrote this as I was noticing that sitting down I can hold my breath much longer also. AND it seems easier for me to do everything lying on the floor or sitting. Standing seems to be hardest for me to control the hold and lift. Go figure. Nice to know we can be so different but still reap benefits from the same program. I did my 40 breaths, mostly lying on the floor trying to work stomach and then about 15-20 crunches on the Ab-Twister with the breath. To answer the question that you asked Barbara, I do the breath and lift etc. and then do as many crunches as I can before gasping and then start over. I would guess really what works for you. Hope everyone is having a great day. God bless, Bonnie <As for the time of the hold and lift, I again think it depends on what you are doing. If I am sitting at the computer doing my breaths and working my legs or squeezing my tush, then I can hold for a long time. If I am standing working my legs, then I can't hold it all that long. If I am laying on my back, I can't get as good a vacuum going, but can hold it. I think it is different for each person.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Hi Karma, You are great. You answered this for me, and did such a great job. As for holding as long as I do, you are right that if I was talking I would not be holding, but also remember I have been doing this in some form for over 20 years. The idea is not to try to do everything exactly as I do, but as much as you can as an individual. That is why I say, "hold it as long as YOU can comfortably." Karma, thanks again for helping Bonnie, and I am sure others who are here at the lists. Your willingness to help and the willingness of others is what makes these lists so important. Take care, Rashelle You are welcome to visit us at http://www.angelmagic.com or http://www.lifelift.comjoin our discussion group at LifeLift-subscribeonelist I AM CONFUSED From: Barbara <broller@...> Hi everyone,I have been doing the Workout 1 this week - got my tapes on Monday.Here are my questions.1. When doing the arm positions should you also be doing the pelvictilt?2. Does it seem that the time of the hold and lift is different in somepositions. Sometimes I have to breath much sooner than Rashelle, thensometimes I could hold longer.For a little smile today, imagine me doing floor positions with a 1 yearold toy poodle thinking it is time to give mommy kisses. It is hard tohold a lift with a 10 pound poodle sitting on your chest and kissing -kissing - kissing.I have been attempting to combine breathing with my ab rocker, but can'tfigure if I should do one crunch with each lift, or try to do several.Any suggestions!Barbara - who did most of the instruction tape - most of Work out 1 and5 minutes on Ab Rocker - Wow! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Hi Barbara, I think Karma answered this very well, but I wanted to say thanks for the cute image of you and your dog. Very sweet. Can we call this our first Life Lift doggie? Take care, Rashelle You are welcome to visit us at http://www.angelmagic.com or http://www.lifelift.comjoin our discussion group at LifeLift-subscribeonelist I AM CONFUSED From: Barbara <broller@...> Hi everyone,I have been doing the Workout 1 this week - got my tapes on Monday.Here are my questions.1. When doing the arm positions should you also be doing the pelvictilt?2. Does it seem that the time of the hold and lift is different in somepositions. Sometimes I have to breath much sooner than Rashelle, thensometimes I could hold longer.For a little smile today, imagine me doing floor positions with a 1 yearold toy poodle thinking it is time to give mommy kisses. It is hard tohold a lift with a 10 pound poodle sitting on your chest and kissing -kissing - kissing.I have been attempting to combine breathing with my ab rocker, but can'tfigure if I should do one crunch with each lift, or try to do several.Any suggestions!Barbara - who did most of the instruction tape - most of Work out 1 and5 minutes on Ab Rocker - Wow! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Hi Rashelle, Yes, Brutie Boy can be our first LL puppy, but I will have Baby Girl working out with me also, from March 23 to April 10 while my Mom visits in Chicago - such a shame I don't have a video camera! (;-) Barbara BTW, whoever it was that said I would be sore tomorrow was wrong - I am already feeling it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 , That's hilarious! My pups run the other way when I do LL! Kate :~) Re: I AM CONFUSED > From: SunHawk269@... > > How neat Barbara, > > I have a 10 lb Pug who settles herself on my stomach when I do crunches. So > I aim to kiss her nose each time I crunch. I literally have to throw her off > as she isn't going to budge. Isn't it nice to have such cute and " helpful " > personal trainers? > > Keep well, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2005 Report Share Posted August 31, 2005 Hi, I know I've read here & in other groups from parents who use melatonin and I know many of the kids are on meds, mostly SSRIs in this group I guess. I guess since both SSRIs and melatonin have something to do with serotonin, there might be something as to the effect with the 2 together. I have read somewhere about taking slow-release melatonin and an SSRI as okay. Was probably something I read in some research or lab results type thing (so many people took this/that, results were...etc). I'd researched melatonin not too long ago and bought some but none of us have yet tried it; I have NO trouble going to sleep usually, LOL, but thought the kids & I might after our " summer hours " we'd been keeping and school starting, etc. I got the 1 mg sublingual type though, for under the tongue, faster-acting. So slow- release I guess would be the regular tablet. ( is off Celexa now, is med free) I bought some melatonin liquid YEARS ago and gave to when his OCD was worse but I wasn't consistent about it, his OCD was bad those first months, etc., and I couldn't tell if he was getting any effect from it so I just stopped it. He wasn't on any prescribed medication though. Well - I'm no help! But I believe Kathy R and a few others here have used melatonin at one time or another with their children while on medication. > My daughter and I are both on 50 mg of Zoloft. I have had trouble > sleeping over these past couple of months, so I went to my doctor and > she said to try Benadryl or Melatonin. I have been using Melatonin > periodically and it seems to help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 Jeff, My daughter is also on 50 mg Zoloft. She hasnt had any trouble sleeping but I know that when we got the prescription the doctor told us that depending on how it affects her, we could give her the zoloft at a different time of day. Like my daughter takes hers in the morning and they said if it makes her sleepy, have her take it at night. Just an option. Good luck. Barb >From: " Jeff " <shiffra@...> >Reply- >< > >Subject: I am confused >Date: Wed, 31 Aug 2005 15:50:10 -0700 > >My daughter and I are both on 50 mg of Zoloft. I have had trouble >sleeping over these past couple of months, so I went to my doctor and >she said to try Benadryl or Melatonin. I have been using Melatonin >periodically and it seems to help. > > > >My daughter has also had a hard time falling asleep, so I asked her >psychiatrist if I could give her Melatonin. She said no, because it >interacts with Zoloft. Has anyone else heard that? I just hate giving >her Benadryl on a consistent basis. It just seems wrong to me. For >whatever reason, I would be more comfortable giving her Melatonin. > > > >Someone, please advise. > > > >Thank you! > > > >LKS > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 My daughter has taken melatonin while on an SSRI, but this was a few years back and perhaps since then a warning with SSRIs has been introduced? In any case my daughter had no bad side effects from this OTC supplement. At the time I hadn't heard of it, it was suggested by her pdoc. She has also taken Benedryl for long periods along with an SSRI. Both her pediatrician and pdoc suggested this to help make her drowsy back before her symptoms were under control and she tended to lie in bed for hours, obsessing and anxious. Both said she could take it long-term and also take more than indicated on the package for allergies--though I never gave her an extra amount. Her pdoc wanted us to try this before he considered other medications for sleep for her. Kathy R. in Indiana ----- Original Message ----- From: " " <@...> > Hi, I know I've read here & in other groups from parents who use > melatonin and I know many of the kids are on meds, mostly SSRIs in > this group I guess. > > I guess since both SSRIs and melatonin have something to do with > serotonin, there might be something as to the effect with the 2 > together. I have read somewhere about taking slow-release melatonin > and an SSRI as okay. Was probably something I read in some research > or lab results type thing (so many people took this/that, results > were...etc). I'd researched melatonin not too long ago and bought > some but none of us have yet tried it; I have NO trouble going to > sleep usually, LOL, but thought the kids & I might after our " summer > hours " we'd been keeping and school starting, etc. I got the 1 mg > sublingual type though, for under the tongue, faster-acting. So slow- > release I guess would be the regular tablet. ( is off Celexa > now, is med free) > > I bought some melatonin liquid YEARS ago and gave to when his > OCD was worse but I wasn't consistent about it, his OCD was bad those > first months, etc., and I couldn't tell if he was getting any effect > from it so I just stopped it. He wasn't on any prescribed medication > though. > > Well - I'm no help! But I believe Kathy R and a few others here have > used melatonin at one time or another with their children while on > medication. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2009 Report Share Posted September 12, 2009 Barbie- I have no answers. I wish I did, but I can understand your frustration! You just found a compromise that works. How can they change that? I am praying! From: mother5590@... Date: Sat, 12 Sep 2009 21:45:52 -0700 Subject: I am " CONFUSED " i had not had a chance to post since I got info from my ex husband on Friday. He said that he had taken my son into the Immunologist on Tuesday and he had mentioned that he would like to try a trial off period from his Gamma Globulin. WELL I freaked. For those of you that know my story. Lucas was started on IV Ig at age 3, and was on that until the summer that I moved here to OKlahoma at age 9. This same doctor trialed him off that summer. He was sick the entire summer on one antibiotic after the other. We got to Tulsa and drew his titers after waiting the 100 days and they all came back low or non existent. So the Immunologist here said we need to get him on right away. His first infusion was within a week of the testing. He has been on Sub ! since then and has had only a couple of infections and pneumonia once. Continues with some GI issues and sinus stuff but overall doing GREAT! EXCEPT in the mental health issue which has been a trial. We are finally getting to a point that he is accepting the infusions after several years of him fighting me HORRIBLy even to the point of hospitalization and calling the police because he was violent and refusing them. I finally was able to figure out with him that he did not want me to do them because " moms are suppose to love their kids not hurt them " So we started going into the Drs office and starting them there. So this summer he lost his insurance here in OK so I had to send him to WA to spend the summer with his dad until I can sell my house and move. Acreedo was suppose to do his infusions but bailed on us after a few weeks because they were not honest with me about not having a nurse available in our town. They wanted the business and thought they could get a nurse up there so told me they had one. So anyway they came 3 times and then said they would teach someone else> my daughter agreed (19yo) and began to do them. He did pretty well. Now she has moved to Idaho and so my ex is trying to do them. So far so good with some issues along the way. LOTS and LOTS of counseling and we hope the compliance will continue with maturity. SO.... here we are with the doctor talking about taking him off again. I have called and left him a message but he will not be in until next week. I am 2000 miles away and I am trying to figure out what to do. Why would he want to trial him off again. I was told that he thought he was doing very well and may not need it any longer. NOTHING has changed except that he has been on Sub Q and he is doing well. His levels are in the 1100 range . He was at the 1300 range and we reduced his dose last January., For him historically when he goes under 900 he gets sick. So have any of you had a doctor want to retest after only 3 years ???? I am really upset. Secondly why would he talk about this with FLU season coming AND in the middle of the winter??? My experience has been when this guy gets his mind made up he does want he wants which will be to withhold his gamma globlulin. I could take him to Seattle to get a second opinion which is what I think I am going to do anyway. Any suggestions on how to approach this??? One of the things I believe is that he is upset that he lost so much revenue with this kid. He use to do his infusions in his office but now we are doing them at home. All of his patients still do them IV and there is a good deal of revenue that comes from those cases. I was the one that insisted we try the Sub Q when we moved to Ok. He really did not give me a choice the last time even though I knew I was moving and was concerned about doing it over such a stressful summer. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 remind me again how old he is? Ursula Holleman mom to (16) and Macey (14) www.caringbridge.org/visit/maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 remind me again how old he is? Ursula Holleman mom to (16) and Macey (14) www.caringbridge.org/visit/maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 He is 13 and will be 14 in December. BARBIEÂ Â From: Ursula Holleman <uahollem@...> Subject: RE: I am " CONFUSED " Date: Sunday, September 13, 2009, 12:42 PM Â remind me again how old he is? Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 He is 13 and will be 14 in December. BARBIEÂ Â From: Ursula Holleman <uahollem@...> Subject: RE: I am " CONFUSED " Date: Sunday, September 13, 2009, 12:42 PM Â remind me again how old he is? Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 Thanks , I just reread my post and I did sound kind of panicked. But I guess I am. It has taken this many years to get him settled into the idea that he needs the infusions again and possibly for long term. He is really upsetting things by even talking about the possibility of going off. I do not know if he is trying to appease Lucas that he may have hope of being off or what. I just did not realize that they just keep testing. I am into " hope " but is not having infections on the Gamma mean that he is BETTER? Just does not make sense to me! BARBIEÂ Â From: laura smith <iamlaurasmith@...> Subject: RE: I am " CONFUSED " " healyh " < > Date: Sunday, September 13, 2009, 12:11 AM Â Barbie- I have no answers. I wish I did, but I can understand your frustration! You just found a compromise that works. How can they change that? I am praying! groups (DOT) com From: mother5590 (DOT) com Date: Sat, 12 Sep 2009 21:45:52 -0700 Subject: I am " CONFUSED " i had not had a chance to post since I got info from my ex husband on Friday. He said that he had taken my son into the Immunologist on Tuesday and he had mentioned that he would like to try a trial off period from his Gamma Globulin. WELL I freaked. For those of you that know my story. Lucas was started on IV Ig at age 3, and was on that until the summer that I moved here to OKlahoma at age 9. This same doctor trialed him off that summer. He was sick the entire summer on one antibiotic after the other. We got to Tulsa and drew his titers after waiting the 100 days and they all came back low or non existent. So the Immunologist here said we need to get him on right away. His first infusion was within a week of the testing. He has been on Sub ! since then and has had only a couple of infections and pneumonia once. Continues with some GI issues and sinus stuff but overall doing GREAT! EXCEPT in the mental health issue which has been a trial. We are finally getting to a point that he is accepting the infusions after several years of him fighting me HORRIBLy even to the point of hospitalization and calling the police because he was violent and refusing them. I finally was able to figure out with him that he did not want me to do them because " moms are suppose to love their kids not hurt them " So we started going into the Drs office and starting them there. So this summer he lost his insurance here in OK so I had to send him to WA to spend the summer with his dad until I can sell my house and move. Acreedo was suppose to do his infusions but bailed on us after a few weeks because they were not honest with me about not having a nurse available in our town. They wanted the business and thought they could get a nurse up there so told me they had one. So anyway they came 3 times and then said they would teach someone else> my daughter agreed (19yo) and began to do them. He did pretty well. Now she has moved to Idaho and so my ex is trying to do them. So far so good with some issues along the way. LOTS and LOTS of counseling and we hope the compliance will continue with maturity. SO.... here we are with the doctor talking about taking him off again. I have called and left him a message but he will not be in until next week. I am 2000 miles away and I am trying to figure out what to do. Why would he want to trial him off again. I was told that he thought he was doing very well and may not need it any longer. NOTHING has changed except that he has been on Sub Q and he is doing well. His levels are in the 1100 range . He was at the 1300 range and we reduced his dose last January., For him historically when he goes under 900 he gets sick. So have any of you had a doctor want to retest after only 3 years ???? I am really upset. Secondly why would he talk about this with FLU season coming AND in the middle of the winter??? My experience has been when this guy gets his mind made up he does want he wants which will be to withhold his gamma globlulin. I could take him to Seattle to get a second opinion which is what I think I am going to do anyway. Any suggestions on how to approach this??? One of the things I believe is that he is upset that he lost so much revenue with this kid. He use to do his infusions in his office but now we are doing them at home. All of his patients still do them IV and there is a good deal of revenue that comes from those cases. I was the one that insisted we try the Sub Q when we moved to Ok. He really did not give me a choice the last time even though I knew I was moving and was concerned about doing it over such a stressful summer. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 Thanks , I just reread my post and I did sound kind of panicked. But I guess I am. It has taken this many years to get him settled into the idea that he needs the infusions again and possibly for long term. He is really upsetting things by even talking about the possibility of going off. I do not know if he is trying to appease Lucas that he may have hope of being off or what. I just did not realize that they just keep testing. I am into " hope " but is not having infections on the Gamma mean that he is BETTER? Just does not make sense to me! BARBIEÂ Â From: laura smith <iamlaurasmith@...> Subject: RE: I am " CONFUSED " " healyh " < > Date: Sunday, September 13, 2009, 12:11 AM Â Barbie- I have no answers. I wish I did, but I can understand your frustration! You just found a compromise that works. How can they change that? I am praying! groups (DOT) com From: mother5590 (DOT) com Date: Sat, 12 Sep 2009 21:45:52 -0700 Subject: I am " CONFUSED " i had not had a chance to post since I got info from my ex husband on Friday. He said that he had taken my son into the Immunologist on Tuesday and he had mentioned that he would like to try a trial off period from his Gamma Globulin. WELL I freaked. For those of you that know my story. Lucas was started on IV Ig at age 3, and was on that until the summer that I moved here to OKlahoma at age 9. This same doctor trialed him off that summer. He was sick the entire summer on one antibiotic after the other. We got to Tulsa and drew his titers after waiting the 100 days and they all came back low or non existent. So the Immunologist here said we need to get him on right away. His first infusion was within a week of the testing. He has been on Sub ! since then and has had only a couple of infections and pneumonia once. Continues with some GI issues and sinus stuff but overall doing GREAT! EXCEPT in the mental health issue which has been a trial. We are finally getting to a point that he is accepting the infusions after several years of him fighting me HORRIBLy even to the point of hospitalization and calling the police because he was violent and refusing them. I finally was able to figure out with him that he did not want me to do them because " moms are suppose to love their kids not hurt them " So we started going into the Drs office and starting them there. So this summer he lost his insurance here in OK so I had to send him to WA to spend the summer with his dad until I can sell my house and move. Acreedo was suppose to do his infusions but bailed on us after a few weeks because they were not honest with me about not having a nurse available in our town. They wanted the business and thought they could get a nurse up there so told me they had one. So anyway they came 3 times and then said they would teach someone else> my daughter agreed (19yo) and began to do them. He did pretty well. Now she has moved to Idaho and so my ex is trying to do them. So far so good with some issues along the way. LOTS and LOTS of counseling and we hope the compliance will continue with maturity. SO.... here we are with the doctor talking about taking him off again. I have called and left him a message but he will not be in until next week. I am 2000 miles away and I am trying to figure out what to do. Why would he want to trial him off again. I was told that he thought he was doing very well and may not need it any longer. NOTHING has changed except that he has been on Sub Q and he is doing well. His levels are in the 1100 range . He was at the 1300 range and we reduced his dose last January., For him historically when he goes under 900 he gets sick. So have any of you had a doctor want to retest after only 3 years ???? I am really upset. Secondly why would he talk about this with FLU season coming AND in the middle of the winter??? My experience has been when this guy gets his mind made up he does want he wants which will be to withhold his gamma globlulin. I could take him to Seattle to get a second opinion which is what I think I am going to do anyway. Any suggestions on how to approach this??? One of the things I believe is that he is upset that he lost so much revenue with this kid. He use to do his infusions in his office but now we are doing them at home. All of his patients still do them IV and there is a good deal of revenue that comes from those cases. I was the one that insisted we try the Sub Q when we moved to Ok. He really did not give me a choice the last time even though I knew I was moving and was concerned about doing it over such a stressful summer. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 You might refer the physician to the American Academy of Allergy Asthma & Immunology (AAAAI)8 guiding principles for the safe, effective and appropriate use of IVIG for PI. " Guiding Principal 3: Frequency of IVIG treatment - IVIG is indicated as continuous replacement therapy for primary immunodeficiency. Treatment should not be interrupted once a definitive diagnosis has been established. " good luck > > From: laura smith <iamlaurasmith@...> > Subject: RE: I am " CONFUSED " > " healyh " < > > Date: Sunday, September 13, 2009, 12:11 AM > > > > > > > Â > > > > > > > > Barbie- > > > > I have no answers. I wish I did, but I can understand your frustration! You just found a compromise that works. How can they change that? I am praying! > > > > > > > > > > groups (DOT) com > > From: mother5590 (DOT) com > > Date: Sat, 12 Sep 2009 21:45:52 -0700 > > Subject: I am " CONFUSED " > > > > i had not had a chance to post since I got info from my ex husband on Friday. He said that he had taken my son into the Immunologist on Tuesday and he had mentioned that he would like to try a trial off period from his Gamma Globulin. WELL I freaked. For those of you that know my story. Lucas was started on IV Ig at age 3, and was on that until the summer that I moved here to OKlahoma at age 9. This same doctor trialed him off that summer. He was sick the entire summer on one antibiotic after the other. We got to Tulsa and drew his titers after waiting the 100 days and they all came back low or non existent. So the Immunologist here said we need to get him on right away. His first infusion was within a week of the testing. He has been on Sub ! since then and has had only a couple of infections and pneumonia once. Continues with some GI issues and sinus stuff but overall doing GREAT! EXCEPT in the mental health issue which has been a trial. We are > > finally getting to a point that he is accepting the infusions after several years of him fighting me HORRIBLy even to the point of hospitalization and calling the police because he was violent and refusing them. I finally was able to figure out with him that he did not want me to do them because " moms are suppose to love their kids not hurt them " So we started going into the Drs office and starting them there. So this summer he lost his insurance here in OK so I had to send him to WA to spend the summer with his dad until I can sell my house and move. Acreedo was suppose to do his infusions but bailed on us after a few weeks because they were not honest with me about not having a nurse available in our town. They wanted the business and thought they could get a nurse up there so told me they had one. So anyway they came 3 times and then said they would teach someone else> my daughter agreed (19yo) and began to do them. He did pretty well. Now she has > > moved to Idaho and so my ex is trying to do them. So far so good with some issues along the way. LOTS and LOTS of counseling and we hope the compliance will continue with maturity. SO.... here we are with the doctor talking about taking him off again. I have called and left him a message but he will not be in until next week. I am 2000 miles away and I am trying to figure out what to do. Why would he want to trial him off again. I was told that he thought he was doing very well and may not need it any longer. NOTHING has changed except that he has been on Sub Q and he is doing well. His levels are in the 1100 range . He was at the 1300 range and we reduced his dose last January., For him historically when he goes under 900 he gets sick. So have any of you had a doctor want to retest after only 3 years ???? I am really upset. Secondly why would he talk about this with FLU season coming AND in the middle of the winter??? My experience has been when this > > guy gets his mind made up he does want he wants which will be to withhold his gamma globlulin. I could take him to Seattle to get a second opinion which is what I think I am going to do anyway. Any suggestions on how to approach this??? One of the things I believe is that he is upset that he lost so much revenue with this kid. He use to do his infusions in his office but now we are doing them at home. All of his patients still do them IV and there is a good deal of revenue that comes from those cases. I was the one that insisted we try the Sub Q when we moved to Ok. He really did not give me a choice the last time even though I knew I was moving and was concerned about doing it over such a stressful summer. > > > > BARBIE > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 You might refer the physician to the American Academy of Allergy Asthma & Immunology (AAAAI)8 guiding principles for the safe, effective and appropriate use of IVIG for PI. " Guiding Principal 3: Frequency of IVIG treatment - IVIG is indicated as continuous replacement therapy for primary immunodeficiency. Treatment should not be interrupted once a definitive diagnosis has been established. " good luck > > From: laura smith <iamlaurasmith@...> > Subject: RE: I am " CONFUSED " > " healyh " < > > Date: Sunday, September 13, 2009, 12:11 AM > > > > > > > Â > > > > > > > > Barbie- > > > > I have no answers. I wish I did, but I can understand your frustration! You just found a compromise that works. How can they change that? I am praying! > > > > > > > > > > groups (DOT) com > > From: mother5590 (DOT) com > > Date: Sat, 12 Sep 2009 21:45:52 -0700 > > Subject: I am " CONFUSED " > > > > i had not had a chance to post since I got info from my ex husband on Friday. He said that he had taken my son into the Immunologist on Tuesday and he had mentioned that he would like to try a trial off period from his Gamma Globulin. WELL I freaked. For those of you that know my story. Lucas was started on IV Ig at age 3, and was on that until the summer that I moved here to OKlahoma at age 9. This same doctor trialed him off that summer. He was sick the entire summer on one antibiotic after the other. We got to Tulsa and drew his titers after waiting the 100 days and they all came back low or non existent. So the Immunologist here said we need to get him on right away. His first infusion was within a week of the testing. He has been on Sub ! since then and has had only a couple of infections and pneumonia once. Continues with some GI issues and sinus stuff but overall doing GREAT! EXCEPT in the mental health issue which has been a trial. We are > > finally getting to a point that he is accepting the infusions after several years of him fighting me HORRIBLy even to the point of hospitalization and calling the police because he was violent and refusing them. I finally was able to figure out with him that he did not want me to do them because " moms are suppose to love their kids not hurt them " So we started going into the Drs office and starting them there. So this summer he lost his insurance here in OK so I had to send him to WA to spend the summer with his dad until I can sell my house and move. Acreedo was suppose to do his infusions but bailed on us after a few weeks because they were not honest with me about not having a nurse available in our town. They wanted the business and thought they could get a nurse up there so told me they had one. So anyway they came 3 times and then said they would teach someone else> my daughter agreed (19yo) and began to do them. He did pretty well. Now she has > > moved to Idaho and so my ex is trying to do them. So far so good with some issues along the way. LOTS and LOTS of counseling and we hope the compliance will continue with maturity. SO.... here we are with the doctor talking about taking him off again. I have called and left him a message but he will not be in until next week. I am 2000 miles away and I am trying to figure out what to do. Why would he want to trial him off again. I was told that he thought he was doing very well and may not need it any longer. NOTHING has changed except that he has been on Sub Q and he is doing well. His levels are in the 1100 range . He was at the 1300 range and we reduced his dose last January., For him historically when he goes under 900 he gets sick. So have any of you had a doctor want to retest after only 3 years ???? I am really upset. Secondly why would he talk about this with FLU season coming AND in the middle of the winter??? My experience has been when this > > guy gets his mind made up he does want he wants which will be to withhold his gamma globlulin. I could take him to Seattle to get a second opinion which is what I think I am going to do anyway. Any suggestions on how to approach this??? One of the things I believe is that he is upset that he lost so much revenue with this kid. He use to do his infusions in his office but now we are doing them at home. All of his patients still do them IV and there is a good deal of revenue that comes from those cases. I was the one that insisted we try the Sub Q when we moved to Ok. He really did not give me a choice the last time even though I knew I was moving and was concerned about doing it over such a stressful summer. > > > > BARBIE > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Thanks Mark. I hope he will call me tomorrow but my experience is that he will not . I am in OK and it is frustrating to have him in WA state. I do have full custody so I may have to fly up there and take him to Seattle if my house does not sell before he decides to play his games. BARBIE  From: markleventhal <clevelandfather@...> Subject: Re: I am " CONFUSED " Date: Monday, September 14, 2009, 8:42 AM  You might refer the physician to the American Academy of Allergy Asthma & Immunology (AAAAI)8 guiding principles for the safe, effective and appropriate use of IVIG for PI. " Guiding Principal 3: Frequency of IVIG treatment - IVIG is indicated as continuous replacement therapy for primary immunodeficiency. Treatment should not be interrupted once a definitive diagnosis has been established. " good luck > > From: laura smith <iamlaurasmith@ ...> > Subject: RE: I am " CONFUSED " > " healyh " <groups (DOT) com> > Date: Sunday, September 13, 2009, 12:11 AM > > > > > > >  > > > > > > > > Barbie- > > > > I have no answers. I wish I did, but I can understand your frustration! You just found a compromise that works. How can they change that? I am praying! > > > > > > > > > > groups (DOT) com > > From: mother5590 (DOT) com > > Date: Sat, 12 Sep 2009 21:45:52 -0700 > > Subject: I am " CONFUSED " > > > > i had not had a chance to post since I got info from my ex husband on Friday. He said that he had taken my son into the Immunologist on Tuesday and he had mentioned that he would like to try a trial off period from his Gamma Globulin. WELL I freaked. For those of you that know my story. Lucas was started on IV Ig at age 3, and was on that until the summer that I moved here to OKlahoma at age 9. This same doctor trialed him off that summer. He was sick the entire summer on one antibiotic after the other. We got to Tulsa and drew his titers after waiting the 100 days and they all came back low or non existent. So the Immunologist here said we need to get him on right away. His first infusion was within a week of the testing. He has been on Sub ! since then and has had only a couple of infections and pneumonia once. Continues with some GI issues and sinus stuff but overall doing GREAT! EXCEPT in the mental health issue which has been a trial. We are > > finally getting to a point that he is accepting the infusions after several years of him fighting me HORRIBLy even to the point of hospitalization and calling the police because he was violent and refusing them. I finally was able to figure out with him that he did not want me to do them because " moms are suppose to love their kids not hurt them " So we started going into the Drs office and starting them there. So this summer he lost his insurance here in OK so I had to send him to WA to spend the summer with his dad until I can sell my house and move. Acreedo was suppose to do his infusions but bailed on us after a few weeks because they were not honest with me about not having a nurse available in our town. They wanted the business and thought they could get a nurse up there so told me they had one. So anyway they came 3 times and then said they would teach someone else> my daughter agreed (19yo) and began to do them. He did pretty well. Now she has > > moved to Idaho and so my ex is trying to do them. So far so good with some issues along the way. LOTS and LOTS of counseling and we hope the compliance will continue with maturity. SO.... here we are with the doctor talking about taking him off again. I have called and left him a message but he will not be in until next week. I am 2000 miles away and I am trying to figure out what to do. Why would he want to trial him off again. I was told that he thought he was doing very well and may not need it any longer. NOTHING has changed except that he has been on Sub Q and he is doing well. His levels are in the 1100 range . He was at the 1300 range and we reduced his dose last January., For him historically when he goes under 900 he gets sick. So have any of you had a doctor want to retest after only 3 years ???? I am really upset. Secondly why would he talk about this with FLU season coming AND in the middle of the winter??? My experience has been when this > > guy gets his mind made up he does want he wants which will be to withhold his gamma globlulin. I could take him to Seattle to get a second opinion which is what I think I am going to do anyway. Any suggestions on how to approach this??? One of the things I believe is that he is upset that he lost so much revenue with this kid. He use to do his infusions in his office but now we are doing them at home. All of his patients still do them IV and there is a good deal of revenue that comes from those cases. I was the one that insisted we try the Sub Q when we moved to Ok. He really did not give me a choice the last time even though I knew I was moving and was concerned about doing it over such a stressful summer. > > > > BARBIE > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Thanks Mark. I hope he will call me tomorrow but my experience is that he will not . I am in OK and it is frustrating to have him in WA state. I do have full custody so I may have to fly up there and take him to Seattle if my house does not sell before he decides to play his games. BARBIE  From: markleventhal <clevelandfather@...> Subject: Re: I am " CONFUSED " Date: Monday, September 14, 2009, 8:42 AM  You might refer the physician to the American Academy of Allergy Asthma & Immunology (AAAAI)8 guiding principles for the safe, effective and appropriate use of IVIG for PI. " Guiding Principal 3: Frequency of IVIG treatment - IVIG is indicated as continuous replacement therapy for primary immunodeficiency. Treatment should not be interrupted once a definitive diagnosis has been established. " good luck > > From: laura smith <iamlaurasmith@ ...> > Subject: RE: I am " CONFUSED " > " healyh " <groups (DOT) com> > Date: Sunday, September 13, 2009, 12:11 AM > > > > > > >  > > > > > > > > Barbie- > > > > I have no answers. I wish I did, but I can understand your frustration! You just found a compromise that works. How can they change that? I am praying! > > > > > > > > > > groups (DOT) com > > From: mother5590 (DOT) com > > Date: Sat, 12 Sep 2009 21:45:52 -0700 > > Subject: I am " CONFUSED " > > > > i had not had a chance to post since I got info from my ex husband on Friday. He said that he had taken my son into the Immunologist on Tuesday and he had mentioned that he would like to try a trial off period from his Gamma Globulin. WELL I freaked. For those of you that know my story. Lucas was started on IV Ig at age 3, and was on that until the summer that I moved here to OKlahoma at age 9. This same doctor trialed him off that summer. He was sick the entire summer on one antibiotic after the other. We got to Tulsa and drew his titers after waiting the 100 days and they all came back low or non existent. So the Immunologist here said we need to get him on right away. His first infusion was within a week of the testing. He has been on Sub ! since then and has had only a couple of infections and pneumonia once. Continues with some GI issues and sinus stuff but overall doing GREAT! EXCEPT in the mental health issue which has been a trial. We are > > finally getting to a point that he is accepting the infusions after several years of him fighting me HORRIBLy even to the point of hospitalization and calling the police because he was violent and refusing them. I finally was able to figure out with him that he did not want me to do them because " moms are suppose to love their kids not hurt them " So we started going into the Drs office and starting them there. So this summer he lost his insurance here in OK so I had to send him to WA to spend the summer with his dad until I can sell my house and move. Acreedo was suppose to do his infusions but bailed on us after a few weeks because they were not honest with me about not having a nurse available in our town. They wanted the business and thought they could get a nurse up there so told me they had one. So anyway they came 3 times and then said they would teach someone else> my daughter agreed (19yo) and began to do them. He did pretty well. Now she has > > moved to Idaho and so my ex is trying to do them. So far so good with some issues along the way. LOTS and LOTS of counseling and we hope the compliance will continue with maturity. SO.... here we are with the doctor talking about taking him off again. I have called and left him a message but he will not be in until next week. I am 2000 miles away and I am trying to figure out what to do. Why would he want to trial him off again. I was told that he thought he was doing very well and may not need it any longer. NOTHING has changed except that he has been on Sub Q and he is doing well. His levels are in the 1100 range . He was at the 1300 range and we reduced his dose last January., For him historically when he goes under 900 he gets sick. So have any of you had a doctor want to retest after only 3 years ???? I am really upset. Secondly why would he talk about this with FLU season coming AND in the middle of the winter??? My experience has been when this > > guy gets his mind made up he does want he wants which will be to withhold his gamma globlulin. I could take him to Seattle to get a second opinion which is what I think I am going to do anyway. Any suggestions on how to approach this??? One of the things I believe is that he is upset that he lost so much revenue with this kid. He use to do his infusions in his office but now we are doing them at home. All of his patients still do them IV and there is a good deal of revenue that comes from those cases. I was the one that insisted we try the Sub Q when we moved to Ok. He really did not give me a choice the last time even though I knew I was moving and was concerned about doing it over such a stressful summer. > > > > BARBIE > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Mark is there a link to that anywhere? On Mon, Sep 14, 2009 at 6:42 AM, markleventhal < clevelandfather@...> wrote: > > > You might refer the physician to the American Academy of Allergy Asthma & > Immunology (AAAAI)8 guiding principles for the safe, effective and > appropriate use of IVIG for PI. > > " Guiding Principal 3: Frequency of IVIG treatment - IVIG is indicated as > continuous replacement therapy for primary immunodeficiency. > Treatment should not be interrupted once a definitive diagnosis has been > established. " > > good luck > > > > > > > From: laura smith <iamlaurasmith@...> > > Subject: RE: I am " CONFUSED " > > " healyh " < <%40>> > > Date: Sunday, September 13, 2009, 12:11 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Barbie- > > > > > > > > I have no answers. I wish I did, but I can understand your frustration! > You just found a compromise that works. How can they change that? I am > praying! > > > > > > > > > > > > > > > > > > > > groups (DOT) com > > > > From: mother5590 (DOT) com > > > > Date: Sat, 12 Sep 2009 21:45:52 -0700 > > > > Subject: I am " CONFUSED " > > > > > > > > i had not had a chance to post since I got info from my ex husband on > Friday. He said that he had taken my son into the Immunologist on Tuesday > and he had mentioned that he would like to try a trial off period from his > Gamma Globulin. WELL I freaked. For those of you that know my story. Lucas > was started on IV Ig at age 3, and was on that until the summer that I moved > here to OKlahoma at age 9. This same doctor trialed him off that summer. He > was sick the entire summer on one antibiotic after the other. We got to > Tulsa and drew his titers after waiting the 100 days and they all came back > low or non existent. So the Immunologist here said we need to get him on > right away. His first infusion was within a week of the testing. He has been > on Sub ! since then and has had only a couple of infections and pneumonia > once. Continues with some GI issues and sinus stuff but overall doing GREAT! > EXCEPT in the mental health issue which has been a trial. We are > > > > finally getting to a point that he is accepting the infusions after > several years of him fighting me HORRIBLy even to the point of > hospitalization and calling the police because he was violent and refusing > them. I finally was able to figure out with him that he did not want me to > do them because " moms are suppose to love their kids not hurt them " So we > started going into the Drs office and starting them there. So this summer he > lost his insurance here in OK so I had to send him to WA to spend the summer > with his dad until I can sell my house and move. Acreedo was suppose to do > his infusions but bailed on us after a few weeks because they were not > honest with me about not having a nurse available in our town. They wanted > the business and thought they could get a nurse up there so told me they had > one. So anyway they came 3 times and then said they would teach someone > else> my daughter agreed (19yo) and began to do them. He did pretty well. > Now she has > > > > moved to Idaho and so my ex is trying to do them. So far so good with > some issues along the way. LOTS and LOTS of counseling and we hope the > compliance will continue with maturity. SO.... here we are with the doctor > talking about taking him off again. I have called and left him a message but > he will not be in until next week. I am 2000 miles away and I am trying to > figure out what to do. Why would he want to trial him off again. I was told > that he thought he was doing very well and may not need it any longer. > NOTHING has changed except that he has been on Sub Q and he is doing well. > His levels are in the 1100 range . He was at the 1300 range and we reduced > his dose last January., For him historically when he goes under 900 he gets > sick. So have any of you had a doctor want to retest after only 3 years ???? > I am really upset. Secondly why would he talk about this with FLU season > coming AND in the middle of the winter??? My experience has been when this > > > > guy gets his mind made up he does want he wants which will be to withhold > his gamma globlulin. I could take him to Seattle to get a second opinion > which is what I think I am going to do anyway. Any suggestions on how to > approach this??? One of the things I believe is that he is upset that he > lost so much revenue with this kid. He use to do his infusions in his office > but now we are doing them at home. All of his patients still do them IV and > there is a good deal of revenue that comes from those cases. I was the one > that insisted we try the Sub Q when we moved to Ok. He really did not give > me a choice the last time even though I knew I was moving and was concerned > about doing it over such a stressful summer. > > > > > > > > BARBIE > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Mark is there a link to that anywhere? On Mon, Sep 14, 2009 at 6:42 AM, markleventhal < clevelandfather@...> wrote: > > > You might refer the physician to the American Academy of Allergy Asthma & > Immunology (AAAAI)8 guiding principles for the safe, effective and > appropriate use of IVIG for PI. > > " Guiding Principal 3: Frequency of IVIG treatment - IVIG is indicated as > continuous replacement therapy for primary immunodeficiency. > Treatment should not be interrupted once a definitive diagnosis has been > established. " > > good luck > > > > > > > From: laura smith <iamlaurasmith@...> > > Subject: RE: I am " CONFUSED " > > " healyh " < <%40>> > > Date: Sunday, September 13, 2009, 12:11 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Barbie- > > > > > > > > I have no answers. I wish I did, but I can understand your frustration! > You just found a compromise that works. How can they change that? I am > praying! > > > > > > > > > > > > > > > > > > > > groups (DOT) com > > > > From: mother5590 (DOT) com > > > > Date: Sat, 12 Sep 2009 21:45:52 -0700 > > > > Subject: I am " CONFUSED " > > > > > > > > i had not had a chance to post since I got info from my ex husband on > Friday. He said that he had taken my son into the Immunologist on Tuesday > and he had mentioned that he would like to try a trial off period from his > Gamma Globulin. WELL I freaked. For those of you that know my story. Lucas > was started on IV Ig at age 3, and was on that until the summer that I moved > here to OKlahoma at age 9. This same doctor trialed him off that summer. He > was sick the entire summer on one antibiotic after the other. We got to > Tulsa and drew his titers after waiting the 100 days and they all came back > low or non existent. So the Immunologist here said we need to get him on > right away. His first infusion was within a week of the testing. He has been > on Sub ! since then and has had only a couple of infections and pneumonia > once. Continues with some GI issues and sinus stuff but overall doing GREAT! > EXCEPT in the mental health issue which has been a trial. We are > > > > finally getting to a point that he is accepting the infusions after > several years of him fighting me HORRIBLy even to the point of > hospitalization and calling the police because he was violent and refusing > them. I finally was able to figure out with him that he did not want me to > do them because " moms are suppose to love their kids not hurt them " So we > started going into the Drs office and starting them there. So this summer he > lost his insurance here in OK so I had to send him to WA to spend the summer > with his dad until I can sell my house and move. Acreedo was suppose to do > his infusions but bailed on us after a few weeks because they were not > honest with me about not having a nurse available in our town. They wanted > the business and thought they could get a nurse up there so told me they had > one. So anyway they came 3 times and then said they would teach someone > else> my daughter agreed (19yo) and began to do them. He did pretty well. > Now she has > > > > moved to Idaho and so my ex is trying to do them. So far so good with > some issues along the way. LOTS and LOTS of counseling and we hope the > compliance will continue with maturity. SO.... here we are with the doctor > talking about taking him off again. I have called and left him a message but > he will not be in until next week. I am 2000 miles away and I am trying to > figure out what to do. Why would he want to trial him off again. I was told > that he thought he was doing very well and may not need it any longer. > NOTHING has changed except that he has been on Sub Q and he is doing well. > His levels are in the 1100 range . He was at the 1300 range and we reduced > his dose last January., For him historically when he goes under 900 he gets > sick. So have any of you had a doctor want to retest after only 3 years ???? > I am really upset. Secondly why would he talk about this with FLU season > coming AND in the middle of the winter??? My experience has been when this > > > > guy gets his mind made up he does want he wants which will be to withhold > his gamma globlulin. I could take him to Seattle to get a second opinion > which is what I think I am going to do anyway. Any suggestions on how to > approach this??? One of the things I believe is that he is upset that he > lost so much revenue with this kid. He use to do his infusions in his office > but now we are doing them at home. All of his patients still do them IV and > there is a good deal of revenue that comes from those cases. I was the one > that insisted we try the Sub Q when we moved to Ok. He really did not give > me a choice the last time even though I knew I was moving and was concerned > about doing it over such a stressful summer. > > > > > > > > BARBIE > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 That was going to be us in the same situation this summer. If it hadn't been for me bringing up H1N1, Ashton would have been taken off this summer. It was only a couple of years ago they tried taking her off, but she got to the point she could hardly move off the couch. Her numbers dropped low, and they restarted her. Our dr keeps hoping that her system has started to kick in with her teenage body now. They tried when she first hit puberty, and want to do it again, as she has about hit her full height. I guess, since they don't really know much about CVID, they have to keep checking to see if someone actually starts producing on their own. That is all I can figure. L mom to Ashton 16 CVID, Asthma & Dyslexia and Marina 13 asthma Quote Link to comment Share on other sites More sharing options...
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