Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 Can SerenAid be mixed with food and still effective? Will AbsorbAid mixing with food help in addition to SerenAid? SerenAid is specifically for gluten and casein? mt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 Yes, SerenAid can be mixed with foods and still remain effective for several hours. High temperatures (too hot to touch) can inactivate the enzymes. You can certainly mix in any other enzyme product along with SerenAid. SerenAid will hydrolyze just about all food proteins, and does not specifically differentiate between different proteins. It was designed to break down as many types of food proteins as possible. Devin > Can SerenAid be mixed with food and still effective? > > Will AbsorbAid mixing with food help in addition to SerenAid? SerenAid is > specifically for gluten and casein? > > mt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Welcome JJ! I think you'll find that this is a very informative, supportive, and loving bunch. Good luck to you on your journey!! Lela B. Pre Op BMI 43 2-28-01 Dr. Sudan, Omaha, NE > Hello everyone, > > My name is JJ. I live in North Carolina and I am having the Duodenal > Switch on March 13th. I am looking forward to particpating on this list > and learning from it! > > JJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Welcome JJ! I think you'll find that this is a very informative, supportive, and loving bunch. Good luck to you on your journey!! Lela B. Pre Op BMI 43 2-28-01 Dr. Sudan, Omaha, NE > Hello everyone, > > My name is JJ. I live in North Carolina and I am having the Duodenal > Switch on March 13th. I am looking forward to particpating on this list > and learning from it! > > JJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Welcome JJ! I think you'll find that this is a very informative, supportive, and loving bunch. Good luck to you on your journey!! Lela B. Pre Op BMI 43 2-28-01 Dr. Sudan, Omaha, NE > Hello everyone, > > My name is JJ. I live in North Carolina and I am having the Duodenal > Switch on March 13th. I am looking forward to particpating on this list > and learning from it! > > JJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Thanks to everyone for my welcome!! =) Dr. in Winston Salem, N.C. will be performing my operation. Dorian, I see you are only 17 days out! How are you doing??? JJ dorian_dean@... wrote: > Welcome JJ! > > Glad to have you aboard our support group. Congratulations on your > soon upcoming surgery. Who are you having perform the procedure? > > Dorian > Open DS 2/06/01 > Dr. Elariny > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 I have never heard that Dr does the BPD/DS. In fact, quite the opposite. I'd be interested in knowing how he advertises this information.. I know he isn't on the DS surgeon's list. Can you say more about what he told you about the surgery he will be doing? in Seattle DS 1/5/01 295# BMI 47.6 2/5/01 265# BMI 42.8 Dr Welker - OHSU ----- Original Message ----- > Thanks to everyone for my welcome!! =) Dr. in Winston Salem, N.C. > will be performing my operation. Dorian, I see you are only 17 days out! > How are you doing??? > > JJ > > dorian_dean@... wrote: > > > Welcome JJ! > > > > Glad to have you aboard our support group. Congratulations on your > > soon upcoming surgery. Who are you having perform the procedure? > > > > Dorian > > Open DS 2/06/01 > > Dr. Elariny > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 > > > > I'd be interested in knowing how he advertises this information.. > > > > > > Sorry, I didnt answer this one... I don't know that he advertises at all, I > > went in asking for that surgery and asked if he performed it and he said yes. > > JJ Hi JJ- I'd proceed very carefully with this surgeon - and Melainie gave you some great advice on how to do it. I too had found a surgeon close to home who told me he could perform the DS. He even told me that he had a chance to work under the well known Dr. Gagner. When the surgery talk got specific, it turns out that he has performed the DS- but not on a bariatric patient - I would have been his first (he's performed the proceedure on cancer patients, quite a different thing) So now I have a consult scheduled with a surgeon from Dr. Gagner's group: Dr. Alfonse Pomp. Cohen Phila., PA BMI 60, age 39 Aetna USHC Consult w/Dr.Pomp 4-3-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Welcome Lynda, My husband has RP and when I found this group I was so impressed by the caring and knowledge of everyone. and so many others are a great source of info. I hope your aunt finds a good Dr. That is one of the most imp. first steps. B. At 09:27 PM 2/23/2001 EST, you wrote: >I'd like to welcome a new member to our group. Her name is Lynda Hegg. Her >aunt has RP and she is looking for information to help her. > >Lynda, as I've said before, this is a wonderful group and you will find all >kinds of information. Please feel free to ask all the questions you want, >this is how we all learn. > >Looking forward to getting to know you. > >Welcome > > > >DISCLAIMER!! >WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Welcome Lynda, My husband has RP and when I found this group I was so impressed by the caring and knowledge of everyone. and so many others are a great source of info. I hope your aunt finds a good Dr. That is one of the most imp. first steps. B. At 09:27 PM 2/23/2001 EST, you wrote: >I'd like to welcome a new member to our group. Her name is Lynda Hegg. Her >aunt has RP and she is looking for information to help her. > >Lynda, as I've said before, this is a wonderful group and you will find all >kinds of information. Please feel free to ask all the questions you want, >this is how we all learn. > >Looking forward to getting to know you. > >Welcome > > > >DISCLAIMER!! >WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Welcome Lynda, My husband has RP and when I found this group I was so impressed by the caring and knowledge of everyone. and so many others are a great source of info. I hope your aunt finds a good Dr. That is one of the most imp. first steps. B. At 09:27 PM 2/23/2001 EST, you wrote: >I'd like to welcome a new member to our group. Her name is Lynda Hegg. Her >aunt has RP and she is looking for information to help her. > >Lynda, as I've said before, this is a wonderful group and you will find all >kinds of information. Please feel free to ask all the questions you want, >this is how we all learn. > >Looking forward to getting to know you. > >Welcome > > > >DISCLAIMER!! >WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Dear Barbara, Thanks for the information about the shower seat. It seems likely that a strong person had to assist in holding him while he showered even using the seat. Is that so? Thanks also for the information on the syncope. Did Ken also make a strange buzzing noise (almost like snoring) during the time he was out? Pam does this and it can be scary for the caregiver. She is also completely unaware of the passage of time involved though it is rarely more than a few minutes. She also has no warning when it is to happen. A hug to you, Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Maureen, Don't underestimate the power of the medication. Rob participated in a clinical trial about a year and a half ago, and had to discontinue all his regular meds except florinef. Without them, primarily the midodrine, he was basically bedridden. When he was able to take them again he quickly became able to be up and around and resume his daily activities. Just for the record, he is 55 and was diagnosed almost 4 years ago. Although the disease has progressed, he is still able to be up, exercise every day, attend the symphony, theater, movies and to travel. He does not use a wheelchair or walker. His symptoms are primarily autonomic, and are controlled as much as possible by medication. (He takes 37 pills a day!) We realize he is very fortunate to be doing this well, but my point in telling you this is that it IS possible to have SDS/MSA and still have a decent quality of life. Another thing you should note -- if Pam is able to get her bp up through meds and/or salt, she will probably need some pysical therapy to strengthen her muscles. Even a few weeks of being bedridden weakens the muscles a great deal. Carol & Rob > Dear Barbara, > > How right you are that patients are often not told of the salt > requirement with Florinef! Pam was told generally to increase her salt > useage, but was never told of its relation to Florinef nor was it given > more than a passing reference. I will be certain to bring the suggestions > you have made to her attention. Thanks to the files on the website I had > already come across the refernces to Midocrine and discussed that with her > last night so she can being it up with her doctor. This medication was > never mentioned to her although from the published reports it sounds like > it would be worth a try. She would give anything if only SOMETHING, > anything would allow her to bed out of bed and able to do even minimal > kitchen chores an hour a day! I think what has most disheartened her has > been her rapid progress from one who cared for the house, the shopping and > cooking chores, even driving last March to her currently bedridden state. > If that could be alleviated only a short period each day, I am sure she > would feel more as if life were worth living. I know the medication is a > longshot, but at this point any hope at all is a boon. > > Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Dear Barbara, How right you are that patients are often not told of the salt requirement with Florinef! Pam was told generally to increase her salt useage, but was never told of its relation to Florinef nor was it given more than a passing reference. I will be certain to bring the suggestions you have made to her attention. Thanks to the files on the website I had already come across the refernces to Midocrine and discussed that with her last night so she can being it up with her doctor. This medication was never mentioned to her although from the published reports it sounds like it would be worth a try. She would give anything if only SOMETHING, anything would allow her to bed out of bed and able to do even minimal kitchen chores an hour a day! I think what has most disheartened her has been her rapid progress from one who cared for the house, the shopping and cooking chores, even driving last March to her currently bedridden state. If that could be alleviated only a short period each day, I am sure she would feel more as if life were worth living. I know the medication is a longshot, but at this point any hope at all is a boon. Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Dear Carol, Wow! That medicine sounds like a real posibility. Even if it worked just for a short time each day, Pam would be thrilled. I do realize it may not, but at this point anything is worth a trial. Your husband takes 37 pills a day? That sounds immense when contrasted with the few that Pam is taking. Currently she is on Sinemet (150 mg 3 times a day) and Florinef (.1mg 1 time a day). She also takes Synthroid once a day for the Graves' Disease. That is the entire regimen. Occasionally she takes an additional Sinemet 1/2 or full dosage, but feels very guilty about it as the doctor is so strict about what and how much she may take. It sounds to me as though there is room for improvement here somehow. You are right about the necessity for some physical therapy should she be able to get up again. I have suggested it and Hospice has offered it, but, due to the family situation, it has thus far been refused. I do not understand how my mother can stand in the way of these things, but she does. Her retort is that if Pam needs this much attention she can go to a nursing home. It seems to me that there is more that can be done for Pam if I can get some cooperation. It won't be easy and I will not be popular, but I am surely going to try to alter this situation. Thanks for the encouragement. I am so glad that Rob is doing so well! That gives me hope. Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 In a message dated 1/12/02 5:32:20 PM Pacific Standard Time, bookworm@... writes: << A friend had to come from 30 miles away to bring groceries or they all would have starved. Pam used to do all the cooking. My brother has tried, but it seems beyond him so now they are mainly eating TV dinners and pizza delivered. When I was there in August I started her on Ensure as she had lost more than 50 pounds and was not getting anywhere near appropriate nutrition. >> Dear Maureen and Pam, Is it possible for Pam, your brother and mother to be set up with a meals-on-wheels program? It sounds as though they may be eligible and could benefit greatly by some daily nutrition. It also might give Pam a welcome visit from someone who could spend a few minutes chatting. I am glad you found this group, Maureen. As a long-distance daughter of a dad with MSA I understand the feelings that you must be struggling with. We, in my family, are very fortunate to have my mom and some siblings available locally for my dad. I wish you and Pam all the best in coping with MSA and finding some relief for Pam's pain. Sincerely, Cindy V Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Maureen: Yes, to all your questions. It took a strong man to hold Ken on the toilet or in the shower. He did sometimes make a strange noise when he was out but not always. He usually was out for only a short time, but once he was out for fifteen minutes, and our doctor said to have the paramedics take him to the ER. Even then, they found nothing except his OH condition wrong. We treated Ken for Shy-Drager, but his brain tissue showed only Parkinson's and Diffuse Lewy Bodies. The variations in his Blood Pressure were as extreme as any I've heard about, but it was not MSA in the end. This is important because DLBD may act like MSA, but it has Dementia with it that responds most of the time to Aricept, and that was true for Ken. Love, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Dear Cindy, Thanks so much for your message. The " meals-on-wheels " is a good suggestion. I am not sure that my mother will go for it, but I will certainly mention it as a possibility they may want to consider. You are right that being far away from my sister at this time and trying to cope with all of this long-distance is very difficult and often frustrating. Half the time I end up feeling very guilty as though I ought to be there though I know that is not always possible. I will go there again in a couple of months although I would prefer to wait until they are through with the snow as I am very out of practice in driving in it and no longer have a wardrobe appropriate to winter climes. I have been in Florida for 23 years now and find cold weather rather intimidating. If Pam's situation should change markedly, however, I would be on the next flight out. How fortunate that you have family on the scene who are capable of handling your Dad's care so well. Yet being away from him must be hard for you also. I am finding that the cell phone with free long-distance every night and on weekends is very helpful. I used to call Pam several times a week, but now I can be in touch every night and that is wonderful for both of us. I already sense a change in her attitude now that she can count on talking to me every day. And I feel more at ease now that I can monitor her care even at a distance. She is getting a bath today and clean sheets so I am counting that as a victory. She will be so much more comfortable. best wishes to you and your family, Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Dear Carol, Thanks for providing Rob's medication regimen. Pam was very interested in what you had to say about this. As I thought, she had never been told about the requirement for salt tablets or equivalent with the Florinef and was very happy to know what Rob was taking so that she can discuss this with her doctor this week. She is also very interested in having her doctor speak with Dr. Freeman as you suggested. If you would be so kind as to pass on the number to me I will give it to her when we talk next. I think this could be very helpful to both Pam and her doctor. Thanks! Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 In a message dated 5/28/2002 6:44:27 AM Pacific Daylight Time, SissaKT@... writes: Welcome to the group . I am sure you will get a lot of help from this board. I have a 13 month old son with RSS & would be more than happy to talk with you!! > My name is and I have a 15 month old with RSS. I am a new > member to this group. I also have just recently learned about the > Magic Foundation. I would love to talk to anyone that will talk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Hi - I'm Nica, I am also a new member(about a month now)so I might not be the best information scource but I am really close to you in Gadsden, Al if you need to talk. My 9 month old daughter, McKenzie, was diagnosed last month so I have been doing a lot of information hunting too. Are you planning on going to the MAGIC convention in Chicago? We are really looking forward to learning a lot there. Good Luck Nica Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Hi , welcome. Questions? fire away, lol. We all started with loads of questions, soon you will be answering them for others. {{HUGS}} Steph (Mum to Darcy 30 months 7.5kg ~82cm RSS various minor physical malformations and Tessa 7).. oh, not close enough to talk, in Australia. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Hi Barbara, My name is Pat. I am, also, an RSS grandma. My grandson, , is 10 months old and weighs 9#11oz. We have only been dealing with RSS for about 7 months, was diagnosed when he was 3 months old. There are lots of people here more qualified to answer your questions. They've been dealing with RSS much longer than I have and they have children close to JD's age. I just wanted to let you know that you've hit the mother lode with this site. The people are friendly, helpful, supportive, and informative to the max! You couldn't have tried a better support group than this one! Try to be patient, smile, take a deep breath, and know that you are no longer alone! Pat (G-ma to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hi Barbara, Our son is 2 1/2 years old so there are some things that I can't help you with but at a start, where does JD live? There is a doctor in New York who takes care of many RSS children. If there is anyway for JD to get to New York, that would be the best place to start. If you email me directly I would be happy to give you her telephone number. Is JD still having problems eating? Has he been checked for reflux? I am hoping that one of the people with an older child will respond to you shortly with some other information. Judith, Steve, (RSS) and (non RSS) 2 1/2 year old twins > My name is Barbara. My grandson, JD is 11 years old. We have tried for > years to get information on RRS. I have so many questions and hope that > someone here can help. I viewed some of your darling little ones on the > photo page. It was like seeing my JD! I had a feeling of > hopefulness..yet despair. Had I known there was a support group, I would > have joined years ago! > JD barely weighs 50 lbs. Is this normal? Since he was a baby, he has > gagged when he trys to eat. Also, I am SO very concerned with his teeth. > They do not have room to grow and we have received advice from " pull his > permanent teeth " .. to " having his jaw bones broken " ? > Just last week, he was in Riley Childrens hospital for " tests " . (to > which we received NO answers again!) > Can anyone please, please offer advice or similiar circumstances, or > anything at all? > > Thank you, > Barbara > JD's Grammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 Welcome Jackie and congratulations on a great weight loss and your new bay coming:) HUGS, ROBIN, NY Age- 41 TTC#4 - OPEN RNY 10-18-02 378/246/170??? DR.EDWARD HIXSON SARANAC LAKE, NY Mom to: & 7 1/2 year twin boys and Madison age 4 1/2 yrs. Miscarraige August 2001 Miscarraige August 2003 Married to Pup: 15 years this Halloween : ) Quote Link to comment Share on other sites More sharing options...
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