Guest guest Posted July 9, 2001 Report Share Posted July 9, 2001 Eve, That's great news! As for the enzyme rash around the mouth, I just have my son wipe off his mouth after taking the enzymes in juice and he no longer has any redness. > Update! We were on vacation in Canada last week and was unable to > keep up with the GFCF diet, luckily I order more enzymes before our > trip! Also with 's suggestion on giving the enzymes 30 minutes > before meal it seem to help. My son had ate everything, pizza (I took > out the cheese), bread, regular Chinese food, cakes and etc! > There were only a few noticeable reactions with red ears and space > out, which only lasted about 10 to 15 minutes and it went away. I > also tried to open the capsule and mix the enzymes with some juice, > my son didn't like it but was manage to have him drink the whole > thing. With the loose enzymes it gave my son some rash around his > mouth therefore I had stop doing that. > > My son's BM was very normal. His speech seem to have improved > somehow, I am not sure the gain of speech was from the enzymes or > just being talkative with his cousin? My son also had got taller by > ½ " in the pass week (?) and may also gain some weight(? ). He was > much happier since he was able to eat what everybody else have but > actually he didn't like everything and is still a very picky eater. > > We are back home now and my son is back on his GFCF diet, he seem to > be OK with it too but now he knows that he is able to have other food > beside GFCF then I guess we will go off GFCF once in a while. > > Eve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2001 Report Share Posted July 9, 2001 Great Eve, I think it is so much easier for him just to know it is possible to eat what others have even if it is every now and then. If you mix in drink again, a straw might help more to wash all the enzymes down. Then take a last quick drink with something without enzymes in it. Glad the trip went well. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 I have been mixing the enzymes in my son's juice boxes for about 2 weeks, and he does not have any rash around the mouth. Is it because he drinks with a straw?? Huong > > Update! We were on vacation in Canada last week and was unable to > > keep up with the GFCF diet, luckily I order more enzymes before our > > trip! Also with 's suggestion on giving the enzymes 30 minutes > > before meal it seem to help. My son had ate everything, pizza (I > took > > out the cheese), bread, regular Chinese food, cakes and etc! > > There were only a few noticeable reactions with red ears and space > > out, which only lasted about 10 to 15 minutes and it went away. I > > also tried to open the capsule and mix the enzymes with some juice, > > my son didn't like it but was manage to have him drink the whole > > thing. With the loose enzymes it gave my son some rash around his > > mouth therefore I had stop doing that. > > > > My son's BM was very normal. His speech seem to have improved > > somehow, I am not sure the gain of speech was from the enzymes or > > just being talkative with his cousin? My son also had got taller by > > ½ " in the pass week (?) and may also gain some weight(? ). He was > > much happier since he was able to eat what everybody else have but > > actually he didn't like everything and is still a very picky eater. > > > > We are back home now and my son is back on his GFCF diet, he seem > to > > be OK with it too but now he knows that he is able to have other > food > > beside GFCF then I guess we will go off GFCF once in a while. > > > > Eve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Hi Shari, I'm sorry to hear about your travel troubles. Now I'm going to chastise you for a second. :-) A new and unexpected shortness of breath and difficulty breathing always warrants a trip to the ER. I know that I have clots at the forefront of my mind given my experience, but a long road trip followed by swollen and painful legs and shortness of breath could be indicators of a blood clot. I'm sorry that your doctors didn't seem to have any useful information for you when you told them of these symptoms, but I'm surprised that from what you said, they've dismissed these symptoms! You can always go to the ER still, you know. ~ G. www.cmlsupport.com www.upstairswindow.org [ ] update! Hello, I just wanted to give an update from my 6 month visit to MDACC. I just received a call from Dr. Faderl and my pcr was 0.04 and in January it was 0.01 which he said was ok and nothing to worry about at this time. So I guess i will have pcrs that bounce around a bit, or at least thats all I hope it is. As for side effects some seem to be getting worse for me. We drove from Houston back to ElDorado Ks in one day it takes about 10 hours. When we got home I could hardly walk I felt huge all over but mostly in my legs. It was so bad that I could hardly get in and out of the bathtub. I took 40mg of lasix and had to sit in a recliner for quite a few hours. It actually took about 5 days to really start feeling better. I also had alot of trouble breathing, just felt short of breath. Also for me the cramps have gotten worse. I always mention these things to both of my onc. but neither one ever is able to give me any new information to manage these problems so I have been trying to do the best i can. I found some compression socks that I wore home from the Hospital after having my gallbladder removed and thought that might help me to wear them when traveling or if I am on my feet more that usual. So for me the worst side effects are edema, cramps, a fatigue and sometimes shortness of breath. I was wondering what the limit is for taking lasix. If your doing really bad one day from traveling can you take more than one a day? I have'nt done it yet, but I should have asked when I was there and forgot. Other than a few problems I feel I am doing great and I just wanted to give an update. Blessings to everyone! Shari from Kansas dx feb 2003 ccr june 2003 july 17 2006 pcr 0.04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 At 10:14 PM 7/24/06 +0000, you wrote: > We drove from Houston back to ElDorado >Ks in one day it takes about 10 hours. When we got home I could >hardly walk I felt huge all over but mostly in my legs. It was so >bad that I could hardly get in and out of the bathtub. I took 40mg >of lasix and had to sit in a recliner for quite a few hours. Hi Shari, I don't have a big edema problem but I do have some ideas/suggestions for you. There are 2 reasons that you get a lot more swelling on your long trip home, especially in your legs. 1. is that you are not moving and it is muscle activity the moves fluid around in your body and prevents swelling......2. the legs are in a dependent position, lower than your heart, so there will be more swelling there. Again, gravity is pulling the fluid down and nothing is pumping it back up. You might prevent a significant amount of this is you stopped every hour, maybe at a rest stop, and walked for even 10 minutes. This is also a problem for people who are on long airline flights and it is recommended that they walk up and down the aisles. You could also lie down in the car some of the time so that you legs are not in a dependent position (if there is room for that). Also, knowing that this happened and caused so much problem for you, maybe make it a 2 day trip and enjoy something along the way. C. (retired physical therapist) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 -Thanks for chastising me, I probably need it. I am not very good at going to the emergency room unless I am in severe pain. I was only thinking about how tired I was and how bad I wanted to be home. We should have stopped in Gainesville TX to stay the night. Thats the halfway mark. I think I will go to my regular physcian to have things like that checked out. He has done more for me and listened to me more than either of my oncologist. Thanks for you suggestions. Shari -- In , " jennifer g " <jenniferg@...> wrote: > > Hi Shari, > > I'm sorry to hear about your travel troubles. Now I'm going to chastise > you for a second. :-) > > A new and unexpected shortness of breath and difficulty breathing always > warrants a trip to the ER. I know that I have clots at the forefront of > my mind given my experience, but a long road trip followed by swollen > and painful legs and shortness of breath could be indicators of a blood > clot. I'm sorry that your doctors didn't seem to have any useful > information for you when you told them of these symptoms, but I'm > surprised that from what you said, they've dismissed these symptoms! You > can always go to the ER still, you know. > > ~ G. > www.cmlsupport.com > www.upstairswindow.org > > > > > [ ] update! > > > Hello, I just wanted to give an update from my 6 month visit to > MDACC. > I just received a call from Dr. Faderl and my pcr was 0.04 and in > January it was 0.01 which he said was ok and nothing to worry about > at this time. So I guess i will have pcrs that bounce around a bit, > or at least thats all I hope it is. As for side effects some seem > to be getting worse for me. We drove from Houston back to ElDorado > Ks in one day it takes about 10 hours. When we got home I could > hardly walk I felt huge all over but mostly in my legs. It was so > bad that I could hardly get in and out of the bathtub. I took 40mg > of lasix and had to sit in a recliner for quite a few hours. It > actually took about 5 days to really start feeling better. I also > had alot of trouble breathing, just felt short of breath. Also for > me the cramps have gotten worse. I always mention these things to > both of my onc. but neither one ever is able to give me any new > information to manage these problems so I have been trying to do the > best i can. I found some compression socks that I wore home from > the Hospital after having my gallbladder removed and thought that > might help me to wear them when traveling or if I am on my feet more > that usual. So for me the worst side effects are edema, cramps, a > fatigue and sometimes shortness of breath. > I was wondering what the limit is for taking lasix. If your doing > really bad one day from traveling can you take more than one a day? > I have'nt done it yet, but I should have asked when I was there and > forgot. Other than a few problems I feel I am doing great and I > just wanted to give an update. > > Blessings to everyone! > > Shari from Kansas > dx feb 2003 > ccr june 2003 > july 17 2006 pcr 0.04 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 -Thanks for your help . I think your right we should have stopped for the night. I will do that next time. We have a smaller suv so I might try folding the seats dowm and laying in the back for part of the trip with my feet up. That seems to be the only thing that helps. Thanks again Shari -- In , Cogan <ncogan@...> wrote: > > At 10:14 PM 7/24/06 +0000, you wrote: > > We drove from Houston back to ElDorado > >Ks in one day it takes about 10 hours. When we got home I could > >hardly walk I felt huge all over but mostly in my legs. It was so > >bad that I could hardly get in and out of the bathtub. I took 40mg > >of lasix and had to sit in a recliner for quite a few hours. > > Hi Shari, > > I don't have a big edema problem but I do have some ideas/suggestions for > you. There are 2 reasons that you get a lot more swelling on your long trip > home, especially in your legs. 1. is that you are not moving and it is > muscle activity the moves fluid around in your body and prevents > swelling......2. the legs are in a dependent position, lower than your > heart, so there will be more swelling there. Again, gravity is pulling the > fluid down and nothing is pumping it back up. > > You might prevent a significant amount of this is you stopped every hour, > maybe at a rest stop, and walked for even 10 minutes. This is also a > problem for people who are on long airline flights and it is recommended > that they walk up and down the aisles. You could also lie down in the car > some of the time so that you legs are not in a dependent position (if there > is room for that). > > Also, knowing that this happened and caused so much problem for you, maybe > make it a 2 day trip and enjoy something along the way. > > C. (retired physical therapist) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 The arthritic bar soap arrived today. Will let you all know how it does on my Dad's hands. All of the soaps I ordered, are normal to a little larger than ordinary bar soap, so the prices are very fair. Blessings All, Joy Quote Link to comment Share on other sites More sharing options...
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