Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 Autumn, I'm so sorry you're having such a difficult time. must feel terrible and without the docs being able to find some answers . . . ? I know (as does everyone else, I'm sure) what it's like to ask for answers & not get them. Hopefully they can find some things that will work for him quickly. I think in Mark's situation, you did emotionally what every mother would have done for their child. You avoided another traumatic situation, even if it meant not following drs orders. Now that you've faced that issue with the dr, I'm sure you'll come to some compromises with them to get the information they & you need to help Mark over this illness. Let us know how things are going. We all need to vent some times. You're in my prayers--along with the boys. God bless you. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 Autumn - sorry for the confusion, I was wondering if you knew of any journal references for IgA subclasses. Anything dealing with the clinical significance or anything else relating to human infections thanks. hope s feeling better and glad to hear that Mark's on the mend. Is the mycoplasmal test an IgG or IgM antibody test? Can they do it by PCR? I'm curious how its tested for with patients on IVIG. Since Dr. F has said Macey has had it in the past I would like to find a way to confirm it from now on. If its mycoplasmal pneumonia can that be confirmed by a blood test or would we need a sputum sample? Mycoplasm is something we've dealt with alot in the past so I'm curious at an actual test. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 Autumn - sorry for the confusion, I was wondering if you knew of any journal references for IgA subclasses. Anything dealing with the clinical significance or anything else relating to human infections thanks. hope s feeling better and glad to hear that Mark's on the mend. Is the mycoplasmal test an IgG or IgM antibody test? Can they do it by PCR? I'm curious how its tested for with patients on IVIG. Since Dr. F has said Macey has had it in the past I would like to find a way to confirm it from now on. If its mycoplasmal pneumonia can that be confirmed by a blood test or would we need a sputum sample? Mycoplasm is something we've dealt with alot in the past so I'm curious at an actual test. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 In a message dated 4/28/01 1:29:06 PM Pacific Daylight Time, uahollem@... writes: > le - hope things went well this weekend and had an amazing time Ursula, Thanks for asking. did a fabulous job! Yes Im a proud mom but he truly was incredible. He looked and sounded like he was meant to speak in front of 5,000 people! He received a standing obation. Several people came up to him afterwards to say how impressed they were. One lady has contacted us and will be doing a clown show for the kids at LPCH when is there for treatments. The highlight for him was when we arrived at the convention we went to the exhibits and trade show first. He had a badge on that recognized him as a winner. Some folks came up to us and said they had just read his peice and wanted him to meet someone. We followed them and were brought to the front of a massive line to meet Steve Young!...........Last year Steve Young donated $ to LPCH for the Forever Young Playroom and was there for the opening of it. was there but having treatments the doc promised he would be done in time to see Steve Young. Well the doctor forgot! One disappointed boy! .........Here is a year later being honored for writting about his treatments and who does he get to meet and talk to!!!!! Steve Young..... told him the story of how he missed him last year and Steve Young asked how he was doing. It brought this mom to tears.......Knowing God had his hand in this! I know God used this weekend to touch many lives! He will be reading his essay next Thursday for 300 people at our local City PTA Dinner. They gave us several programs with the winners essays in them, if you want one let me know. HAPPY BIRTHDAY MACEY!!! le 11 Selective Antibody Def., Syringomyelia, IVIG every 3 weeks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 - how long has been on allergy shots? I'm curious why they would test every 6 months to a year when I was told it would take up to 3 yrs of shots before she would be better with each allergen and possibly show a negative reaction. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 - how long has been on allergy shots? I'm curious why they would test every 6 months to a year when I was told it would take up to 3 yrs of shots before she would be better with each allergen and possibly show a negative reaction. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 usually has around 70 intradermals in his upper left arm. Scratch tests did not show the whole story on him. His reactions with the intradermals have been quite dramatic - he is severely allergic to nearly everything he is tested for, so he experiences a lot of discomfort and swelling while his brother and I do not. His reactions end up looking like large bee stings/mosquito bites and probably feel about the same. His whole arm tends to swell and redden immediately. Emla at least blocks some of the discomfort for him. Maybe there is something else like Emla that Macey can use since Emla bothers her? is currently getting 8 injections a week, they don't bother him at all. The testing once every six months to a year drives him nuts. His brother hates the four shots he gets each week, but the testing, back or arm, has never bothered him in the least. Maybe Macey won't have any problems at all. ---------------------- Conatser conatser@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 usually has around 70 intradermals in his upper left arm. Scratch tests did not show the whole story on him. His reactions with the intradermals have been quite dramatic - he is severely allergic to nearly everything he is tested for, so he experiences a lot of discomfort and swelling while his brother and I do not. His reactions end up looking like large bee stings/mosquito bites and probably feel about the same. His whole arm tends to swell and redden immediately. Emla at least blocks some of the discomfort for him. Maybe there is something else like Emla that Macey can use since Emla bothers her? is currently getting 8 injections a week, they don't bother him at all. The testing once every six months to a year drives him nuts. His brother hates the four shots he gets each week, but the testing, back or arm, has never bothered him in the least. Maybe Macey won't have any problems at all. ---------------------- Conatser conatser@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 > - how long has been on allergy shots? I'm curious why they would > test every 6 months to a year when I was told it would take up to 3 > yrs of shots before she would be better with each allergen and possibly show > a negative reaction. He was on three years as a young child and we (the family) decided to stop - it had turned into way too much trauma and no benefit at that time. He has been on now for 4 years. He still shows the same level of reactions to the tests, but healthwise he seems much better. No more major asthma attacks, uri's are much easier to control. The doctor's theory is that if we can control the things that aggrevate 's respiratory track, then his instance of infection will drop. It seems to be working pretty well. His doctor is extremely aggressive in his treatment, and it has worked well for our son. Couldn't tell you exactly why he tests so often, but I won't complain since he has helped so much. ---------------------- Conatser conatser@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 > - how long has been on allergy shots? I'm curious why they would > test every 6 months to a year when I was told it would take up to 3 > yrs of shots before she would be better with each allergen and possibly show > a negative reaction. He was on three years as a young child and we (the family) decided to stop - it had turned into way too much trauma and no benefit at that time. He has been on now for 4 years. He still shows the same level of reactions to the tests, but healthwise he seems much better. No more major asthma attacks, uri's are much easier to control. The doctor's theory is that if we can control the things that aggrevate 's respiratory track, then his instance of infection will drop. It seems to be working pretty well. His doctor is extremely aggressive in his treatment, and it has worked well for our son. Couldn't tell you exactly why he tests so often, but I won't complain since he has helped so much. ---------------------- Conatser conatser@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 Hi Ursula -- I need a new ISP (AOL's had their chance to fix their probs and I'm sick of it), but that's not going to happen right away as I'll have to research it. But sometime in the next week I'd like to rejoin the group as a totally new name, as this name for some reason cannot get into the archives, even though I've contacted Yahoo about it (they never responded). Or do you have another suggestion? When I try to get in to see all the mail I'm missing, it says I'm not a member. But when I try to rejoin it says I'm already a member! Cool! Thanks-- (mom to , age 2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 it could be your using the wrong password. In order to get in it would have to be right or you wouldn't be considered a member. When you tried to rejoin it recognized the email address and didn't care about the password. So it sounds like you have your user name right but maybe the wrong password. Good luck and I've had good success with AT & T and MSN ISP's. (This is not an endorsement by the moderator Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 it could be your using the wrong password. In order to get in it would have to be right or you wouldn't be considered a member. When you tried to rejoin it recognized the email address and didn't care about the password. So it sounds like you have your user name right but maybe the wrong password. Good luck and I've had good success with AT & T and MSN ISP's. (This is not an endorsement by the moderator Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 That's a good thought, but I had them send me my password and everything, just to make sure. ?????? Can you tell me what the monthly fees are for AT & T and MSN for unlimited access? Thanks! Oh, here's a fun one -- we're leaving this afternoon for Lake Geneva, Wisconsin, and feels warm. She does not have a fever, but she's a degree higher than normal for her for this time of day (she's usually 98.9 rectal in the morning). ????? We're still planning on going, will wait till last minute to change if totally necessary -- NO GUTS, NO GLORY, right??? It's only about an hour away so it's not like we can't just come home if we have to. Wish us luck! (mom to , age 2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 That's a good thought, but I had them send me my password and everything, just to make sure. ?????? Can you tell me what the monthly fees are for AT & T and MSN for unlimited access? Thanks! Oh, here's a fun one -- we're leaving this afternoon for Lake Geneva, Wisconsin, and feels warm. She does not have a fever, but she's a degree higher than normal for her for this time of day (she's usually 98.9 rectal in the morning). ????? We're still planning on going, will wait till last minute to change if totally necessary -- NO GUTS, NO GLORY, right??? It's only about an hour away so it's not like we can't just come home if we have to. Wish us luck! (mom to , age 2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 That's a good thought, but I had them send me my password and everything, just to make sure. ?????? Can you tell me what the monthly fees are for AT & T and MSN for unlimited access? Thanks! Oh, here's a fun one -- we're leaving this afternoon for Lake Geneva, Wisconsin, and feels warm. She does not have a fever, but she's a degree higher than normal for her for this time of day (she's usually 98.9 rectal in the morning). ????? We're still planning on going, will wait till last minute to change if totally necessary -- NO GUTS, NO GLORY, right??? It's only about an hour away so it's not like we can't just come home if we have to. Wish us luck! (mom to , age 2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 - AT & T is 22.00 unlimited. they have a special 4.95$ for 150 hours. MSN came free for a year with our new Dell computer but I've never gotten a busy signal and it comes with several email addresses and a neat browser. I think it runs about the same rate as AT & T though. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 - AT & T is 22.00 unlimited. they have a special 4.95$ for 150 hours. MSN came free for a year with our new Dell computer but I've never gotten a busy signal and it comes with several email addresses and a neat browser. I think it runs about the same rate as AT & T though. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 Ursula: I, too, am sorry I won't be able to meet you. But we all know health is #1, and MOMMY'S health is most important of all, because the Mommy has to take care of everybody else!! So take it easy and take care of yourself. (mom to , age 2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 Ursula: I, too, am sorry I won't be able to meet you. But we all know health is #1, and MOMMY'S health is most important of all, because the Mommy has to take care of everybody else!! So take it easy and take care of yourself. (mom to , age 2, polysaccharide antibody def, IgA def) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 Hi! Sarasota is on the west coast of Fla. Right on the gulf. My mom moved there 4 years ago, and each time we have visited, I fell in love w/ it even more! We are taking the chance and moving our family. Big risk, but I'm hoping it will be a better enviroment for my girls. Traci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 Hi! Sarasota is on the west coast of Fla. Right on the gulf. My mom moved there 4 years ago, and each time we have visited, I fell in love w/ it even more! We are taking the chance and moving our family. Big risk, but I'm hoping it will be a better enviroment for my girls. Traci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 Traci - We go to Destin every year, sometimes twice a year. Usually in March and again July 4th week. The Gulf coast is a wonderful place. Good luck Ursula Holleman uahollem@... and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 Traci - We go to Destin every year, sometimes twice a year. Usually in March and again July 4th week. The Gulf coast is a wonderful place. Good luck Ursula Holleman uahollem@... and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2001 Report Share Posted August 2, 2001 Please send it to all of us if you do not mind. Lucas is going into kindergarten and I am getting nowhere with the schools. I have all the regs but do not know if I have the energy to fight another battle. BARBIE Lucas 5 dysgamm, hypogamm, IVIG, selective antx def. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.