Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 I am having a hard time with it. Because all the literature I read says once it is diagnosed then their are few changes other than getting worse. What is out their that says that it gets better in Puberty that drives these guys? BARBIE From: Lloyd <nanlloyd@...> Subject: Re:I am " CONFUSED " Date: Monday, September 14, 2009, 9:44 AM 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...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 alot of anecdotal info mostly. Patients being diagnosed at puberty and some patients refusing treatment at puberty and doing ok without it. FInally the docs started sharing notes at conferences and decided there must be something interacting between hormones and the immune system. I am going to email an immunologist I know who holds to the " puberty " theory and see what they can forward to me. Macey would have been trialed off at puberty if her dad hadn't been diagnosed and we think now looking back that his mom has it. I am never one to say even with them diagnosed that Macey will have this for life but as long as she's symptomatic of CVID and having complications she's stuck with the stuff. She has had low numbers in the past but no symptoms and she got an 18 month honeymoon of sorts from her meds and infusions. I always believe that can happen again. Ursula Holleman mom to (16) and Macey (14) www.caringbridge.org/visit/maceyholleman From: mother5590@... Date: Mon, 14 Sep 2009 07:51:24 -0700 Subject: Re: Re:I am " CONFUSED " I am having a hard time with it. Because all the literature I read says once it is diagnosed then their are few changes other than getting worse. What is out their that says that it gets better in Puberty that drives these guys? BARBIE From: Lloyd <nanlloyd@...> Subject: Re:I am " CONFUSED " Date: Monday, September 14, 2009, 9:44 AM 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...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 thanks Ursula. I want to have hope but my issue is dealing with at child who is trying to figure out his life in the mental health arena as well. He has NO ability to transition so when we keep this yo yo going he just flips out on a regular basis. I have had to try to work him into ANY new things in life so taking him on and off makes CHAOS for all of us. He then feels back and panics and thinks he is going to die. It is SOOO tough to know how to work with him. I allow him to be " normal " but he has NO choices with his Gamma because he has put up such a fight in the past. ( remember we have had to hospitalize him 2x because he refused to do his treatments) I guess I could let him go off and see what happens and let him see it for himself again. He got a flu 2x last year in one month with a temp of 104 and vomiting etc and you would have thought he was dying he was so distraught by it. I just got a call from his dad in WA state and he is refusing to go to the Karate class that he signed up for they are in the car and he is pitching a hissy fit. It is SOOO hard because he will just sit at home and do nothing. SAD more than anything. ANXIETY is the pits. BARBIE From: Lloyd <nanlloydbellsouth (DOT) net> Subject: Re:I am " CONFUSED " groups (DOT) com Date: Monday, September 14, 2009, 9:44 AM 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...
Guest guest Posted September 15, 2009 Report Share Posted September 15, 2009 I've heard it said that thinking the immune system might " start up on it's own " is like saying I hope the patient with the amputated foot will grow a new one. > > 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...
Guest guest Posted September 15, 2009 Report Share Posted September 15, 2009 christine . . this is the link to the AAAAI's Tool kit for IVIG. the 8 principals paper was a part of the tool kit http://www.aaaai.org/members/resources/initiatives/ivig.stm > > > > > > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 Hi I had an MRI & x ray done in September. I went to see a scoliosis specialist Dr. Antonacci at Mt. Sinai in NYC. I had a bugling disc at L4 and mild DDD at L4- L5 S1. He said everything look okay and that the pain I was experiencing was from myofasical trigger points in my lower back. Basically I didn't have anything to worry about. Recommended physical therapy and possible epic dural injections for pain. I went back to my general doctor who felt that I need to see a neurologist and physical therapist. He seem way more concerned that I was suffering from type of nerve inflamation or damaged and wanted to rule it out. I still been having pain on the left side of my lower back, thigh and big toe. I went to see the doctor who would be in charge of the physical therapy. He sent me right away for pain management and I gave in and got epic dural injections. The injections did relieve the pain and for the first time in over a year... I can walk down stairs like a normal person. Both the GP and physical therapist doctors have stated that they believe I will have to have surgery some where down the road to repair the nerves in in the L4-S1 region. I am confused because the specialist stated I was in good shape . Who do I trust? Where do I go from here? Is the nerve inflammation/damage a result of fusion above or just something else.... What do I do next? Ellen Quote Link to comment Share on other sites More sharing options...
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