Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi Ursula, Reglan is usually dosed at QID or 4x a day. Which could be interpreted to every 6 hours. But I find most docs dose it around meals. So as close to every 4-6 hours would be good but I think that blood levels will probably work themselves out. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi Ursula, Reglan is usually dosed at QID or 4x a day. Which could be interpreted to every 6 hours. But I find most docs dose it around meals. So as close to every 4-6 hours would be good but I think that blood levels will probably work themselves out. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi Ursula, Reglan is usually dosed at QID or 4x a day. Which could be interpreted to every 6 hours. But I find most docs dose it around meals. So as close to every 4-6 hours would be good but I think that blood levels will probably work themselves out. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Ursula, Mark has high cholesterol, most likely genetic...I have hereditary Hypercholesterolemia due to an over-production of Lipid A (also referred to as " Little A " ). I inherited it from my father and will have to take statin drugs for the reminder of my life. Mark has not been tested for this specific lipid but has had a base line done, which was high. Mark's immunologist knows a lot about Lipid A as it runs in his own family. He told me that Mark's PID did not play a role in it. Your question about Reglan is a good one. I was on Reglan up until recently ( I am now in a research study with Cisapride, which is no longer available on the market). I use to take it in the morning, at dinner and before bed to space it more evenly. The problem that I had with Reglan was that it made me extremely tired (it goes through the CNS). I would imagine if you gave it at 7:45 and then again at 10:45am that Macey could become quite tired from the doses being so close. I would certainly ask her GI about it. It is a very good point that you bring up. Autumn (Mom to Mark Cd5-Cd19 PID and ) questions > 1. Do any other Pumpkins have high cholesterol or high triglycerides? > > 2. For those on or have used Reglan, how far apart do doses have to be > spaced? I realize that you're supposed to give it 20-30 minutes before a > meal but if two meals are close together is it possible to give an overdose? > Macey eats breakfast around 7:45 am and her lunch at school is 10:45 (yes > isn't that awfully early). so she would be getting the doses 3 hrs apart. > Is that a problem? We haven't been giving the lunch dose because her reflux > wasn't that bad that it needed to require another trip to the office during > the day for another med dose. But last week her reflux started getting > worse. We upped her Pepcid before bed and now we need to add that 3rd dose > of Reglan in. > > Ursula - Macey's mom (5 yr old w/CVID) > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Ursula, Mark has high cholesterol, most likely genetic...I have hereditary Hypercholesterolemia due to an over-production of Lipid A (also referred to as " Little A " ). I inherited it from my father and will have to take statin drugs for the reminder of my life. Mark has not been tested for this specific lipid but has had a base line done, which was high. Mark's immunologist knows a lot about Lipid A as it runs in his own family. He told me that Mark's PID did not play a role in it. Your question about Reglan is a good one. I was on Reglan up until recently ( I am now in a research study with Cisapride, which is no longer available on the market). I use to take it in the morning, at dinner and before bed to space it more evenly. The problem that I had with Reglan was that it made me extremely tired (it goes through the CNS). I would imagine if you gave it at 7:45 and then again at 10:45am that Macey could become quite tired from the doses being so close. I would certainly ask her GI about it. It is a very good point that you bring up. Autumn (Mom to Mark Cd5-Cd19 PID and ) questions > 1. Do any other Pumpkins have high cholesterol or high triglycerides? > > 2. For those on or have used Reglan, how far apart do doses have to be > spaced? I realize that you're supposed to give it 20-30 minutes before a > meal but if two meals are close together is it possible to give an overdose? > Macey eats breakfast around 7:45 am and her lunch at school is 10:45 (yes > isn't that awfully early). so she would be getting the doses 3 hrs apart. > Is that a problem? We haven't been giving the lunch dose because her reflux > wasn't that bad that it needed to require another trip to the office during > the day for another med dose. But last week her reflux started getting > worse. We upped her Pepcid before bed and now we need to add that 3rd dose > of Reglan in. > > Ursula - Macey's mom (5 yr old w/CVID) > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Autumn - Macey's high cholesterol and high triglycerides is familial. Something to do with a defective or missing enzyme. Weird coincidence we studied about the Lipoprotein A problem tonight in Anatomy and Physiology. Les's mom has triglycerides around 1100 and cholesterol at about 400. So do most all of her siblings. Her mother died from CHF. Les needs a good physical, he hasn't had his checked in 7 yrs. Mine are actually low, cholesterol's around 90. Hadn't thought about the drowsiness. During the summer she is on the 3 doses and does fine but her lunch time is much later in the day (12:30 - 1:00) since I have control over it. We will be seeing the GI soon regarding another problem that came up today (another email entirely to itself) so I'll ask him then. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Autumn - Macey's high cholesterol and high triglycerides is familial. Something to do with a defective or missing enzyme. Weird coincidence we studied about the Lipoprotein A problem tonight in Anatomy and Physiology. Les's mom has triglycerides around 1100 and cholesterol at about 400. So do most all of her siblings. Her mother died from CHF. Les needs a good physical, he hasn't had his checked in 7 yrs. Mine are actually low, cholesterol's around 90. Hadn't thought about the drowsiness. During the summer she is on the 3 doses and does fine but her lunch time is much later in the day (12:30 - 1:00) since I have control over it. We will be seeing the GI soon regarding another problem that came up today (another email entirely to itself) so I'll ask him then. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Ursula, Tell Les to get in ASAP to get checked for this....it can be very serious. I don't want to scare you (I am sure you learned enough about Lipid A in your class), but if Les has this he will most likely need to be on a statin drug. Good luck and keep me posted. Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: questions > Autumn - Macey's high cholesterol and high triglycerides is familial. > Something to do with a defective or missing enzyme. Weird coincidence we > studied about the Lipoprotein A problem tonight in Anatomy and Physiology. > Les's mom has triglycerides around 1100 and cholesterol at about 400. So do > most all of her siblings. Her mother died from CHF. Les needs a good > physical, he hasn't had his checked in 7 yrs. Mine are actually low, > cholesterol's around 90. > > Hadn't thought about the drowsiness. During the summer she is on the 3 > doses and does fine but her lunch time is much later in the day (12:30 - > 1:00) since I have control over it. We will be seeing the GI soon regarding > another problem that came up today (another email entirely to itself) so > I'll ask him then. > > > Ursula - Macey's mom (5 yr old with CVID) > http://home.att.net/~maceyh > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Ursula, Tell Les to get in ASAP to get checked for this....it can be very serious. I don't want to scare you (I am sure you learned enough about Lipid A in your class), but if Les has this he will most likely need to be on a statin drug. Good luck and keep me posted. Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: questions > Autumn - Macey's high cholesterol and high triglycerides is familial. > Something to do with a defective or missing enzyme. Weird coincidence we > studied about the Lipoprotein A problem tonight in Anatomy and Physiology. > Les's mom has triglycerides around 1100 and cholesterol at about 400. So do > most all of her siblings. Her mother died from CHF. Les needs a good > physical, he hasn't had his checked in 7 yrs. Mine are actually low, > cholesterol's around 90. > > Hadn't thought about the drowsiness. During the summer she is on the 3 > doses and does fine but her lunch time is much later in the day (12:30 - > 1:00) since I have control over it. We will be seeing the GI soon regarding > another problem that came up today (another email entirely to itself) so > I'll ask him then. > > > Ursula - Macey's mom (5 yr old with CVID) > http://home.att.net/~maceyh > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Getting Les to the doctor is harder than pulling teeth. His work schedule over the last year hasn't helped matters. But... next week he goes to a different shift and we will be knocking on that docs doorsteps just you wait. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Getting Les to the doctor is harder than pulling teeth. His work schedule over the last year hasn't helped matters. But... next week he goes to a different shift and we will be knocking on that docs doorsteps just you wait. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Getting Les to the doctor is harder than pulling teeth. His work schedule over the last year hasn't helped matters. But... next week he goes to a different shift and we will be knocking on that docs doorsteps just you wait. Ursula - Macey's mom (5 yr old with CVID) http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Ursula, Les sounds a lot like my husband, lol!! Good Luck~ Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: questions > Getting Les to the doctor is harder than pulling teeth. His work schedule > over the last year hasn't helped matters. But... next week he goes to a > different shift and we will be knocking on that docs doorsteps just you > wait. > > > Ursula - Macey's mom (5 yr old with CVID) > http://home.att.net/~maceyh > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Ursula, Les sounds a lot like my husband, lol!! Good Luck~ Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: questions > Getting Les to the doctor is harder than pulling teeth. His work schedule > over the last year hasn't helped matters. But... next week he goes to a > different shift and we will be knocking on that docs doorsteps just you > wait. > > > Ursula - Macey's mom (5 yr old with CVID) > http://home.att.net/~maceyh > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2001 Report Share Posted April 25, 2001 Hi everyone! First, I would like to wish all the kids who are not so well lately, happy thoughts. I read many posts, but just don,t have much time to answer. My husband has been working a lot of overtime, and my kids are a handful. Thank you for answering my so many questions. This is still all so new, and I have yet to find out any answers. I keep getting drs. who stink! Sydni has been sick for almost a week. I thought it was from being at the sitters, but now I'm not sure. She started on Friday, the day after going to St. for the ENT checkup(which she was fine).Fri. AM, she was sick w/ sinuses. So I agree w/ what Ursula said. she could have picked something up there. Finally, lol, my question is, could this all be allergies?? She has had no fever, and her eyes have been tearing on and off. today, they have been fine, but she is still congested and has a mucous cough. I made an appt. for her on 5-15 to see a ped allergist. I called the ent, and he never returned my call!>very mad! I feel I am on my own w/ this kid. I still have no test results from immuno(hopefully tomorrow!) Long post, but i am just getting more frustrated. I'll do whatever I have to, but I need a reason first. Thanx for listening and if anyone has info, please let me know at your convience! Thanx again!! Traci-Sydni's wondering mom! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2001 Report Share Posted April 25, 2001 Hi everyone! First, I would like to wish all the kids who are not so well lately, happy thoughts. I read many posts, but just don,t have much time to answer. My husband has been working a lot of overtime, and my kids are a handful. Thank you for answering my so many questions. This is still all so new, and I have yet to find out any answers. I keep getting drs. who stink! Sydni has been sick for almost a week. I thought it was from being at the sitters, but now I'm not sure. She started on Friday, the day after going to St. for the ENT checkup(which she was fine).Fri. AM, she was sick w/ sinuses. So I agree w/ what Ursula said. she could have picked something up there. Finally, lol, my question is, could this all be allergies?? She has had no fever, and her eyes have been tearing on and off. today, they have been fine, but she is still congested and has a mucous cough. I made an appt. for her on 5-15 to see a ped allergist. I called the ent, and he never returned my call!>very mad! I feel I am on my own w/ this kid. I still have no test results from immuno(hopefully tomorrow!) Long post, but i am just getting more frustrated. I'll do whatever I have to, but I need a reason first. Thanx for listening and if anyone has info, please let me know at your convience! Thanx again!! Traci-Sydni's wondering mom! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2001 Report Share Posted April 25, 2001 Hi everyone! First, I would like to wish all the kids who are not so well lately, happy thoughts. I read many posts, but just don,t have much time to answer. My husband has been working a lot of overtime, and my kids are a handful. Thank you for answering my so many questions. This is still all so new, and I have yet to find out any answers. I keep getting drs. who stink! Sydni has been sick for almost a week. I thought it was from being at the sitters, but now I'm not sure. She started on Friday, the day after going to St. for the ENT checkup(which she was fine).Fri. AM, she was sick w/ sinuses. So I agree w/ what Ursula said. she could have picked something up there. Finally, lol, my question is, could this all be allergies?? She has had no fever, and her eyes have been tearing on and off. today, they have been fine, but she is still congested and has a mucous cough. I made an appt. for her on 5-15 to see a ped allergist. I called the ent, and he never returned my call!>very mad! I feel I am on my own w/ this kid. I still have no test results from immuno(hopefully tomorrow!) Long post, but i am just getting more frustrated. I'll do whatever I have to, but I need a reason first. Thanx for listening and if anyone has info, please let me know at your convience! Thanx again!! Traci-Sydni's wondering mom! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 > Is the pannelectomy or whatever it is called and the tummy tuck the > same procedure? And, may I dare ask, do they put drain tubes in after > that surgery? I tremble at that thought and many of you know why. > Can anyone tell me if they had an infection and how long they had > drainage? I am still draining, 86 days of draining fat. Wah.... ok > I am better now... but can anyone enlighten me on these things? > Kind regards, > Kinsey (fat drainer from Sacramento) ~~~~~~~~~` Kinsey, My drainage from my ds surgery went on for 92 days before it finally quit.I think from [?]can't spell the name..lol and I were in a contest,it took us so long to finally close up,but it finally did. I can honestly say that when dr.k pulled the drains from the hernia and tt it was nothing like pulling from the ds.I didn't hurt at all.I don't know about other people.I had 4 drains with the hernia and tt. I can also say that before the hernia surgery I ate like a horse, but now that dr.k fixed that I only eat like a pony..lol You can tell the difference in your eating,anyone else out there feel like that??? Take care and God bless, Pat in Taft Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 > Is the pannelectomy or whatever it is called and the tummy tuck the > same procedure? And, may I dare ask, do they put drain tubes in after > that surgery? I tremble at that thought and many of you know why. > Can anyone tell me if they had an infection and how long they had > drainage? I am still draining, 86 days of draining fat. Wah.... ok > I am better now... but can anyone enlighten me on these things? > Kind regards, > Kinsey (fat drainer from Sacramento) ~~~~~~~~~` Kinsey, My drainage from my ds surgery went on for 92 days before it finally quit.I think from [?]can't spell the name..lol and I were in a contest,it took us so long to finally close up,but it finally did. I can honestly say that when dr.k pulled the drains from the hernia and tt it was nothing like pulling from the ds.I didn't hurt at all.I don't know about other people.I had 4 drains with the hernia and tt. I can also say that before the hernia surgery I ate like a horse, but now that dr.k fixed that I only eat like a pony..lol You can tell the difference in your eating,anyone else out there feel like that??? Take care and God bless, Pat in Taft Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 > Is the pannelectomy or whatever it is called and the tummy tuck the > same procedure? And, may I dare ask, do they put drain tubes in after > that surgery? I tremble at that thought and many of you know why. > Can anyone tell me if they had an infection and how long they had > drainage? I am still draining, 86 days of draining fat. Wah.... ok > I am better now... but can anyone enlighten me on these things? > Kind regards, > Kinsey (fat drainer from Sacramento) ~~~~~~~~~` Kinsey, My drainage from my ds surgery went on for 92 days before it finally quit.I think from [?]can't spell the name..lol and I were in a contest,it took us so long to finally close up,but it finally did. I can honestly say that when dr.k pulled the drains from the hernia and tt it was nothing like pulling from the ds.I didn't hurt at all.I don't know about other people.I had 4 drains with the hernia and tt. I can also say that before the hernia surgery I ate like a horse, but now that dr.k fixed that I only eat like a pony..lol You can tell the difference in your eating,anyone else out there feel like that??? Take care and God bless, Pat in Taft Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Thank you so much this is perfect. Liz --- Tonya Hettler wrote: --------------------------------- Amy, OSEP's report to congress will have what you want in the Data tables http://www.ed.gov/offices/OSERS/OSEP/Products/OSEP2001AnlRpt/ Tonya Questions Okay - I'm having brain fog. Can someone help me to find information for one of our new members, Liz. She is curious about how Texas ranks based upon # of children with autism and how Texas is responding to their needs. What is it that so many other states are doing for children with autism that Texas is not? I have found the data from the Children's Defense Org but it does not break out the info based upon disability. Who can help me out here? http://www.childrensdefense.org/states/state_profiles.htm Amy " I don't suffer from stress.....I'm a carrier! " North Central Texas Federation of Families for Children's Mental Health (NCTFFCMH) Website: <http://pages.ivillage.com/nctffcmh/index.html> http://pages.ivillage.com/nctffcmh/index.html NCTFFCMH Email: nctffcmh.tx@... Amy A. Sosa Executive Director amy.sosa@... Phone: Fax: Cell: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Thank you so much this is perfect. Liz --- Tonya Hettler wrote: --------------------------------- Amy, OSEP's report to congress will have what you want in the Data tables http://www.ed.gov/offices/OSERS/OSEP/Products/OSEP2001AnlRpt/ Tonya Questions Okay - I'm having brain fog. Can someone help me to find information for one of our new members, Liz. She is curious about how Texas ranks based upon # of children with autism and how Texas is responding to their needs. What is it that so many other states are doing for children with autism that Texas is not? I have found the data from the Children's Defense Org but it does not break out the info based upon disability. Who can help me out here? http://www.childrensdefense.org/states/state_profiles.htm Amy " I don't suffer from stress.....I'm a carrier! " North Central Texas Federation of Families for Children's Mental Health (NCTFFCMH) Website: <http://pages.ivillage.com/nctffcmh/index.html> http://pages.ivillage.com/nctffcmh/index.html NCTFFCMH Email: nctffcmh.tx@... Amy A. Sosa Executive Director amy.sosa@... Phone: Fax: Cell: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Thank you so much this is perfect. Liz --- Tonya Hettler wrote: --------------------------------- Amy, OSEP's report to congress will have what you want in the Data tables http://www.ed.gov/offices/OSERS/OSEP/Products/OSEP2001AnlRpt/ Tonya Questions Okay - I'm having brain fog. Can someone help me to find information for one of our new members, Liz. She is curious about how Texas ranks based upon # of children with autism and how Texas is responding to their needs. What is it that so many other states are doing for children with autism that Texas is not? I have found the data from the Children's Defense Org but it does not break out the info based upon disability. Who can help me out here? http://www.childrensdefense.org/states/state_profiles.htm Amy " I don't suffer from stress.....I'm a carrier! " North Central Texas Federation of Families for Children's Mental Health (NCTFFCMH) Website: <http://pages.ivillage.com/nctffcmh/index.html> http://pages.ivillage.com/nctffcmh/index.html NCTFFCMH Email: nctffcmh.tx@... Amy A. Sosa Executive Director amy.sosa@... Phone: Fax: Cell: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi , To answer your first question, my son has aspergers and he has a slightly different smell about him also. I have a friend that said that her son also has a slightly different smell about him also. You are not alone. I have no idea why but maybe a doctor could help you. For your second question, I don't know how old you are or where you live but there are after school groups you can join or church youth groups that meet. You could be with other kids at these type of things. I have my son in Taekwondo Karate classes and he loves it. He doesn't have to talk to much to the other kids but he is with them doing the same thing. Your third question I can't answer, my son is only 9 1/2 . I would seek out a Psychiatrist if you are having those feelings. There are different medications that can stops those kind of feelings. No one should have to have feelings like that. Sally questions um i too suffer from aspergers disorder. i have a few questions.1) is an odor(like musty, unclean) normal. and yes i shower twice a day.2) how does one cope with aspergers. i do have friends in school, but how does one overcome the fact that noone is around outside of school(how does one have friends outside of school?).3) are suicidal thoughts typically associated with the disorder? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi , To answer your first question, my son has aspergers and he has a slightly different smell about him also. I have a friend that said that her son also has a slightly different smell about him also. You are not alone. I have no idea why but maybe a doctor could help you. For your second question, I don't know how old you are or where you live but there are after school groups you can join or church youth groups that meet. You could be with other kids at these type of things. I have my son in Taekwondo Karate classes and he loves it. He doesn't have to talk to much to the other kids but he is with them doing the same thing. Your third question I can't answer, my son is only 9 1/2 . I would seek out a Psychiatrist if you are having those feelings. There are different medications that can stops those kind of feelings. No one should have to have feelings like that. Sally questions um i too suffer from aspergers disorder. i have a few questions.1) is an odor(like musty, unclean) normal. and yes i shower twice a day.2) how does one cope with aspergers. i do have friends in school, but how does one overcome the fact that noone is around outside of school(how does one have friends outside of school?).3) are suicidal thoughts typically associated with the disorder? Quote Link to comment Share on other sites More sharing options...
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