Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Everytime I get very sick - to the point where I'm so dehydrated that I have to go to the hospital - they inevitably diagnose me as having " starvation induced acidosis. " Since this is such a rare condition, doctors always just assume I have suddenly developed diabetes because I " spill ketones in my urine. " But from what I understand, when my body is under distress, it burns my little wimpy muscles instead of my way too plentious fat reserves like it's supposed to. This is one of the reason I have such a hard time dieting. There is a very fine line between too many calories and too little. Jenn > > can anyone tell me if this is an sma related/common problem? I had to spend > 3 days in the hospital and that was the conclusion. I'm attributing most of it > to having no time to take care of myself anymore, but wondered if it has > ever happened to any of you. > > > Amy > Wife to Will 11/3/95 > Mama to Olivia Isabelle 9/18/03 > & > Phineas Maximilian 11/30/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 I go into this when I dont eat. I generally start to shake considerably and go into a daze... getting sugar into me, and then even a small dose of food pulls me right out of it though. --- jennifer <nekrosys@...> wrote: > Everytime I get very sick - to the point where I'm > so > dehydrated that I have to go to the hospital - they > inevitably diagnose me as having " starvation induced > > acidosis. " Since this is such a rare condition, > doctors > always just assume I have suddenly developed > diabetes > because I " spill ketones in my urine. " But from > what I > understand, when my body is under distress, it burns > > my little wimpy muscles instead of my way too > plentious > fat reserves like it's supposed to. This is one of > the > reason I have such a hard time dieting. There is a > very > fine line between too many calories and too little. > > Jenn > > > > > > can anyone tell me if this is an sma > related/common problem? I had to spend > > 3 days in the hospital and that was the > conclusion. I'm attributing most of it > > to having no time to take care of myself anymore, > but wondered if it has > > ever happened to any of you. > > > > > > Amy > > Wife to Will 11/3/95 > > Mama to Olivia Isabelle 9/18/03 > > & > > Phineas Maximilian 11/30/05 > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2006 Report Share Posted September 24, 2006 Amy, What exactly were your symptoms? Kimi In a message dated 9/21/2006 4:30:36 P.M. Eastern Daylight Time, blueyedaze@... writes: can anyone tell me if this is an sma related/common problem? I had to spend 3 days in the hospital and that was the conclusion. I'm attributing most of it to having no time to take care of myself anymore, but wondered if it has ever happened to any of you. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2006 Report Share Posted September 24, 2006 In a message dated 9/24/2006 2:04:13 PM Eastern Standard Time, Ksmile96@... om writes: What exactly were your symptoms? At first, I was just dry heaving and very nauseous. When I decided to go to the ER, I was short of breath and my heart was killing me. The specifics are kind of a blur because I was in and out of conciousness, but my BP was very low, 83/34 w/a pulse of 160 at its highest. They gave me sodium chloride (I think?) which made my potassium drop way down, so I had to endure 8 hours of a burning IV. Amy Wife to Will 11/3/95 Mama to Olivia Isabelle 9/18/03 & Phineas Maximilian 11/30/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 Metabolic acidosis/ketosis acidosis isn't *necessarily* an SMA related problem. However, individuals with SMA are slightly more prone to it. Simple explanation: when your body runs out of " fuel " in your digestive system (fasting; especially during the night) it turns to its glycogen reserves. Unfortunately, the body stores glycogen primarily in its muscles & liver. SMA = significantly less muscle mass than the average person = significantly less glycogen stores than the average person. When the body goes for its stockpiles of glycogen in the muscles, and finds that they aren't there, it begins to break down the liver & the rest of the body in an attempt to continue metabolism. This is very, VERY bad ;D Luckily, acidosis can EASILY be avoided. You just need to take certain steps to ensure that your body always has sufficient glycogen stores. 1) Eat, eat, eat. If you're really sick, eat more; even if it's hard to keep food down. Make sure that you're taking in enough fuel for your body. Count calories -- talk to a dietitian. Figure out how your average caloric intake compares to what a body your size/weight needs to function. If you don't get enough in your normal diet, try supplementing your calories with something like ScandiShake or Ensure. 2) If you tend to eat dinner way before you go to sleep, consider taking a heavy load of carbohydrates right before bed. Carbos break down into sugars during digestion, and a stomach full of them will prevent fasting while you sleep. The easiest way to do this is to mix about a tablespoon of cornstarch into a glass of milk and drink that before you go to sleep. 3) Try not to ever skip breakfast. After a night of fasting, you need some serious replenishment or else you'll be creeping towards acidosis. > > can anyone tell me if this is an sma related/common problem? I had to spend > 3 days in the hospital and that was the conclusion. I'm attributing most of it > to having no time to take care of myself anymore, but wondered if it has > ever happened to any of you. > > > Amy > Wife to Will 11/3/95 > Mama to Olivia Isabelle 9/18/03 > & > Phineas Maximilian 11/30/05 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Sorry I " m so late in replying. Our computer has been down and JUST got fixed yesterday. Anyway... Metabolic acidosis is very common in the smaller or weaker folks w/ SMA. Technically speaking, those with SMA are not supposed to go for more than 2-3 hours (some even less) w/out taking in calories. That's why many of our kids are on continuous feeds. There is tons of info about it on SMA support's site ( www.smasupport.com ) Good luck! Love and Hugs Jeni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 I almost died from anion gap metabolic acidosis last year. Mine was caused by some pschotic waiter randomly spiking the wine with antifreeze at a resturante I ate at. He was mad at his boss and figured making customers sick would be great revenge and get bad publicity on the resturant. {is that twisted or what?} The hospital I ended up in wrongly assumed that I " must've been suicidal because of having SMA " {idiots should not be given medical degrees}. After my 4 day coma an nice phychiatric doctor asked me a lot of very gently worded questions on how " worthless life must be for me " . Once suicide was ruled out that I did not drink antifreeze on purpose. It was then wrongly assumed that my PCA must've done it instead. {not true either}. Anyway get your medical records and read them over carefully. Look to see if any toxicology screenings were done while you were hospitalized. Get to some gastro doctors outside of the hospital network you went to for another perspective and opinion. Diabetes can cause metabolic acidosis. Some people with SMA on ATP Suppliments, Gabapentin, Neurontin, Depakote, and Carnival are also getting metabolic acidosis from these meds damaging their pancreases. Research doctors don't like that info getting around however. Metabolic acidosis is NOT a common side effect or process of SMA. Please don't take this the wrong way, but when you say you don't have time to take care of yourself- hun you gotta make time. There are some things you just can't comprimise with and still be healthy. You have loved ones who need you. Don't fool yourself into self neglect. Nobody will benifit from your health being destroyed. Take Care and Get Well fast. > > can anyone tell me if this is an sma related/common problem? I had to spend > 3 days in the hospital and that was the conclusion. I'm attributing most of it > to having no time to take care of myself anymore, but wondered if it has > ever happened to any of you. > > > Amy > Wife to Will 11/3/95 > Mama to Olivia Isabelle 9/18/03 > & > Phineas Maximilian 11/30/05 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 In a message dated 10/1/2006 10:03:27 PM Eastern Standard Time, mom2armybratz@... writes: Metabolic acidosis is very common in the smaller or weaker folks w/ SMA. Technically speaking, those with SMA are not supposed to go for more than 2-3 hours (some even less) w/out taking in calories. That's why many of our kids are on continuous feeds. There is tons of info about it on SMA support's site ( www.smasupport.Metab Wow, that sucks! Do you know if getting a g-tube requires general anesthesia? Amy Wife to Will 11/3/95 Mama to Olivia Isabelle 9/18/03 & Phineas Maximilian 11/30/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 In a message dated 10/2/2006 4:41:53 PM Eastern Standard Time, charmedcripchic@... writes: Please don't take this the wrong way, but when you say you don't have time to take care of yourself- hun you gotta make time. There are some things you just can't comprimise with and still be healthy. You have loved ones who need you. Don't fool yourself into self neglect. Nobody will benifit from your health being destroyed. It was definitely a wake up call, that's for sure! I've been making adjustments so I can take better care of myself. Amy Wife to Will 11/3/95 Mama to Olivia Isabelle 9/18/03 & Phineas Maximilian 11/30/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Darlin I think you need to check your facts a bit. First I'll address the meds issue.... Gabapentin IS neurontin Carni-Val IS Depakote ( aka depakene aka valproic acid) + carnitore metabolic acidosis is not a side effect of these meds. Pancreatitis can be caused if the carnitore is not given with the valproic acid. Metabolic acidosis IS common in younger/weaker folks w/ SMA. They don't have the muscle mass (or sometimes even the fat stores) to handle any sort of fasting. It has been proven that the weaker children go into " fasting mode " after 2-3 hours- Several hours less than the typical subject. If you've recently lost a lot of strength or been ill, I would highly recommend going on continuous feeds (if you have a tube) or snacking every hour or two. Go check out SMA support and even some of the FSMA stuff. It's all there. charmedcripchic <charmedcripchic@...> wrote: { Some people with SMA on ATP Suppliments, Gabapentin, Neurontin, Depakote, and Carnival are also getting metabolic acidosis from these meds damaging their pancreases. Research doctors don't like that info getting around however. Metabolic acidosis is NOT a common side effect or process of SMA. Recent Activity 3 New Members Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Jenifer, We appreciate your knowledge but I think your opening sentence was a little harsh. Maybe you could be provide your help with a kinder tone. Thanks! Beth Re: Re: metabolic acidosis Darlin I think you need to check your facts a bit. First I'll address the meds issue.... Gabapentin IS neurontin Carni-Val IS Depakote ( aka depakene aka valproic acid) + carnitore metabolic acidosis is not a side effect of these meds. Pancreatitis can be caused if the carnitore is not given with the valproic acid. Metabolic acidosis IS common in younger/weaker folks w/ SMA. They don't have the muscle mass (or sometimes even the fat stores) to handle any sort of fasting. It has been proven that the weaker children go into " fasting mode " after 2-3 hours- Several hours less than the typical subject. If you've recently lost a lot of strength or been ill, I would highly recommend going on continuous feeds (if you have a tube) or snacking every hour or two. Go check out SMA support and even some of the FSMA stuff. It's all there. charmedcripchic <charmedcripchic@...> wrote: { Some people with SMA on ATP Suppliments, Gabapentin, Neurontin, Depakote, and Carnival are also getting metabolic acidosis from these meds damaging their pancreases. Research doctors don't like that info getting around however. Metabolic acidosis is NOT a common side effect or process of SMA. Recent Activity 3 New Members Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 I'm sharing my real experiences here and trying to help because I know how horrible it feels to have metabolic acidosis and I don't wish anyone to go through what I did. My fault for giving a shit for somebody elses suffering instead of holding grudges, silly ole me. I know what carnival is a combination of. And yes I know that gabapentin and neurontin are the same drug. I mentioned the list of medications because not every one knows all of the diferent drug names. I've had plenty of people tell me, " Oh I'm not taking gabapentin. I'm on neurontin. " - so that's why I wrote things out the way I did. I know what I'm talking about from first hand experience and from the advisement of a number of doctors who don't have hidden agendas when it comes to the side effects of the medications being used for experimental SMA treatments. I had pancreatitis {years before I was poisoned at a resturant} while taking these medications CORRECTLY. It went away when I discontinued these medications at my doctors advise. If these drugs can't cause pancreatitis than why is it mentioned in the eight medication references I looked it up in? And why did my pancreatic enzymes go back to normal after the only change I made was discontinuing the meds? Look up side effects of these medications yourself in an unbiased medication reference. Pancreatitis Can Happen from these medications. It's a rare side effect but it can happen. Metabolic acidosis and pancreatitis can happen together. Sometimes they do sometimes they don't. A lot of things can cause metabolic acidosis including gal stones, diabeties, alcoholism, anorexia, etc. When anyone is hospitalized the focus is always on getting your health stabalized and sending you home. It's just the way it is with our health care system. Out patient visits to specialist are the way to track down what's going on and prevention and treatments. FYI- No I do not have a feeding tube and I didn't get pancreatitis or metabolic acidosis from lack of calories. As the saying goes, When your only tool is a hammer everything looks like a nail. > > > { > > > > > > Some people with SMA on ATP Suppliments, Gabapentin, Neurontin, > Depakote, and Carnival are also getting metabolic acidosis from these > meds damaging their pancreases. Research doctors don't like that > info getting around however. > > Metabolic acidosis is NOT a common side effect or process of SMA. > > > Recent Activity > > 3 > New Members > > Visit Your Group > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 In a message dated 10/4/2006 7:49:52 PM Eastern Standard Time, charmedcripchic@... writes: I was informed by my physicians that yes you do have to get knocked out with general anaesthesia in order to get a permanent feeding tube. They also told me it would take less than 15 mins. While I had anion gap metabolic acidosis in August 05, I had a temporary feeding tube put in via my nose with only novicaine sprayed into my nostril first. It did the job and honestly did not hurt at all. Since you've brought children into the world, correct me if I'm wrong, but if you need a feeding tube, IMHO I think you'd be able to get through a feeding tube surgery alright. Anything that keeps you away from any -God Forbid- other matabolic acidosis attack is a risk worth taking. Blueyedaze/Amy, I know we've had diferences in the past but please, please, please, know that I wish you a full recovery and I pray for you to be healthy. You have many people who care about you, your well being, quality of life and a husband and little ones who need you. Please hang in there, know we care, and do whatever you have to do to recover. Thanks! I don't hold grudges (or at least try not to , so no worries. I'm just such a baby about the whole intubation nonsense when it comes to general anesthesia, so I've really got some thinking to do. I may just invest in some more Scandishake and go that route for a while. Amy Wife to Will 11/3/95 Mama to Olivia Isabelle 9/18/03 & Phineas Maximilian 11/30/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 I was informed by my physicians that yes you do have to get knocked out with general anaesthesia in order to get a permanent feeding tube. They also told me it would take less than 15 mins. While I had anion gap metabolic acidosis in August 05, I had a temporary feeding tube put in via my nose with only novicaine sprayed into my nostril first. It did the job and honestly did not hurt at all. Since you've brought children into the world, correct me if I'm wrong, but if you need a feeding tube, IMHO I think you'd be able to get through a feeding tube surgery alright. Anything that keeps you away from any -God Forbid- other matabolic acidosis attack is a risk worth taking. Blueyedaze/Amy, I know we've had diferences in the past but please, please, please, know that I wish you a full recovery and I pray for you to be healthy. You have many people who care about you, your well being, quality of life and a husband and little ones who need you. Please hang in there, know we care, and do whatever you have to do to recover. God bless & God speed. > > > In a message dated 10/1/2006 10:03:27 PM Eastern Standard Time, > mom2armybratz@... writes: > > Metabolic acidosis is very common in the smaller or weaker folks w/ SMA. > Technically speaking, those with SMA are not supposed to go for more than 2-3 > hours (some even less) w/out taking in calories. That's why many of our kids > are on continuous feeds. There is tons of info about it on SMA support's site ( > www.smasupport.Metab > > > Wow, that sucks! Do you know if getting a g-tube requires general > anesthesia? > > > Amy > Wife to Will 11/3/95 > Mama to Olivia Isabelle 9/18/03 > & > Phineas Maximilian 11/30/05 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 I don't see you as 'scarediness' at all over surgery and intubation. I see you as being realistic. When I was told about feeding tuble surgeries, The doctors did tell me that they'd do general anaestetia as lightly as possible and the proceedure itself is quick {under 20 mins}. Anyone with SMA has to carefully choose what's best for them. A feeding tube, part time, full time, or not at all. There's been a lot of debates over feeding tubes at the SMA world confrence {especially in 2002} over feeding tubes backing up causing aspiration and pnuemonia in peple with SMA. But then again choking on food can pose the same problem {that's how my brother with SMA's life ended in 1973}. As far as the no feeding tube option goes- Oh skandishakes An excellent calory booster. 900 calories a packet as opposed to 250 per can of Ensures, Boost, etc. Have you heard of or tried skandi sprinkles? They're like shaking out a salt shaker over what ever you want to eat but there's not really any taste to them. It's a little harder to count your calory intake with the sprinkles but your adding in more calories to your meal and that's what's needed anyway and all. Please let me know where you get skandishake supplies. Around here nobody has a clue and I've had to get samples from my pulmonary clinic {not a reliable way to get supplies}. Also have any doctors tried any meds that can get your appetite reved up? Like Megace or Marinol {a.k.a. legal pot/weed extract in a pill}? Even some antidepressants help give you 'munchy mania' so it's just easier to gain weight. This obviously would be if appetite is a problem not is weight loss is happening from other issues. Your mileage may vary as the saying goes. What ever you decide on its yours and nobody elses choice. No pun intended but follow your gut feelings on this. When all is said and done it's your mind body and sanity that has to deal with these things at the end of the day. Wishing you the best. charmed/amy > > > In a message dated 10/4/2006 7:49:52 PM Eastern Standard Time, > charmedcripchic@... writes: > > > > > I was informed by my physicians that yes you do have to get knocked > out with general anaesthesia in order to get a permanent feeding > tube. They also told me it would take less than 15 mins. > > While I had anion gap metabolic acidosis in August 05, I had a > temporary feeding tube put in via my nose with only novicaine sprayed > into my nostril first. It did the job and honestly did not hurt at > all. > > Since you've brought children into the world, correct me if I'm > wrong, but if you need a feeding tube, IMHO I think you'd be able to > get through a feeding tube surgery alright. > > Anything that keeps you away from any -God Forbid- other matabolic > acidosis attack is a risk worth taking. > > Blueyedaze/Amy, I know we've had diferences in the past but please, > please, please, know that I wish you a full recovery and I pray for > you to be healthy. You have many people who care about you, your > well being, quality of life and a husband and little ones who need > you. Please hang in there, know we care, and do whatever you have to > do to recover. > > > > > > > Thanks! I don't hold grudges (or at least try not to , so no worries. > > I'm just such a baby about the whole intubation nonsense when it comes to > general anesthesia, so I've really got some thinking to do. I may just invest in > some more Scandishake and go that route for a while. > > > Amy > Wife to Will 11/3/95 > Mama to Olivia Isabelle 9/18/03 > & > Phineas Maximilian 11/30/05 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 I am in the process of trying to gain weight...I've been working with a nutritionist that I'm really happy with. I am 38 years old, about 4'11 " , still ambulatory, and I weigh about 70 pounds. My appetite is varied, but my weight rarely fluctuates, so I usually don't pay much attention to it. I used to be obsessed with my weight when I was younger. Now I am going to a pulmonary/neuromuscular clinic, and the doctors there are " overhauling " me...a bi-pap for the first time, breath- stacking exercises, a bone density test that revealed severe osteoporosis in my hips, and the addition of nine supplements to my " diet. " All of this has happened in the span of about six weeks. I feel worse now than when I walked into that office. (grin) It was a joke but unfortunately its true. I'm struggling with severe fatigue right now. But I also came down with a virus two weeks ago, so that is part of it. I think also my body is trying to adjust to all the supplements. So I won't list all the supplements unless someone wants me to, but the ones that are supposed to be specifically for weight gain, as far as I know anyway, are: pure whey isolate protein, MCT oil, L- carnitine, and Co enzyme Q10. I make one shake a day with these and a few other of the supplements, and 8 ounces of milk. The isolate protein comes in vanilla or chocolate flavor, so the taste is ok. This is not like a scandishake that is very high in calories, and its not a full nutrition source like Ensure. These supplements are designed to stimulate my appetite so I will eat more. Its working, and I'm not even drinking a shake every day. I am starving every two hours!! Its great, but its also not so great because I get so hungry that I feel weak. I don't usually eat a lot of calories, so I think I need to increase my calories as well as the amount of food I consume. Does that make sense? I don't like the way I'm feeling right now, but I'm determined to hang in there with it. The nutritionist says my body is depleted right now from the virus, the antibiotics, the sleeping problems, and the adjustment to the supplements. He says I will start to feel better. Its very hard to get all this in every day, and I am not able to take everything he wants me to on a daily basis. But I am working on it. I hope this long post has been helpful to someone. (grin) Dina > > > > > > In a message dated 10/4/2006 7:49:52 PM Eastern Standard Time, > > charmedcripchic@ writes: > > > > > > > > > > I was informed by my physicians that yes you do have to get knocked > > out with general anaesthesia in order to get a permanent feeding > > tube. They also told me it would take less than 15 mins. > > > > While I had anion gap metabolic acidosis in August 05, I had a > > temporary feeding tube put in via my nose with only novicaine > sprayed > > into my nostril first. It did the job and honestly did not hurt at > > all. > > > > Since you've brought children into the world, correct me if I'm > > wrong, but if you need a feeding tube, IMHO I think you'd be able > to > > get through a feeding tube surgery alright. > > > > Anything that keeps you away from any -God Forbid- other matabolic > > acidosis attack is a risk worth taking. > > > > Blueyedaze/Amy, I know we've had diferences in the past but > please, > > please, please, know that I wish you a full recovery and I pray > for > > you to be healthy. You have many people who care about you, your > > well being, quality of life and a husband and little ones who need > > you. Please hang in there, know we care, and do whatever you have > to > > do to recover. > > > > > > > > > > > > > > Thanks! I don't hold grudges (or at least try not to , so no > worries. > > > > I'm just such a baby about the whole intubation nonsense when it > comes to > > general anesthesia, so I've really got some thinking to do. I may > just invest in > > some more Scandishake and go that route for a while. > > > > > > Amy > > Wife to Will 11/3/95 > > Mama to Olivia Isabelle 9/18/03 > > & > > Phineas Maximilian 11/30/05 > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 In a message dated 10/6/2006 4:38:43 PM Eastern Standard Time, charmedcripchic@... writes: There's been a lot of debates over feeding tubes at the SMA world confrence {especially in 2002} over feeding tubes backing up causing aspiration and pnuemonia in peple with SMA. But then again choking on food can pose the same problem {that's how my brother with SMA's life ended in 1973}. As far as the no feeding tube option goes- Oh skandishakes An excellent calory booster. 900 calories a packet as opposed to 250 per can of Ensures, Boost, etc. Have you heard of or tried skandi sprinkles? They're like shaking out a salt shaker over what ever you want to eat but there's not really any taste to them. It's a little harder to count your calory intake with the sprinkles but your adding in more calories to your meal and that's what's needed anyway and all. Please let me know where you get skandishake supplies. Around here nobody has a clue and I've had to get samples from my pulmonary clinic {not a reliable way to get supplies}. Also have any doctors tried any meds that can get your appetite reved up? Like Megace or Marinol {a.k.a. legal pot/weed extract in a pill}? Even some antidepressants help give you 'munchy mania' so it's just easier to gain weight. This obviously would be if appetite is a problem not is weight loss is happening from other issues. Your mileage may vary as the saying goes. What ever you decide on its yours and nobody elses choice. No pun intended but follow your gut feelings on this. When all is said and done it's your mind body and sanity that has to deal with these things at the end of the day. Luckily, I'm generally okay swallowing whatever I eat. It was (well, is) kind of just a matter of slowing down enough to eat an entire meal since it takes me twice as long as most people. Where are you from again? I'm in NY and use CVS Pharmacy. They don't stock Scandishake, but ordered it for me. I got a free sample of the sprinkles when I was pregnant with Phin, but only ended up using it a handful of times. Appetite-wise, I vary by day. Some days, I literally graze constantly. Other days, I can eat maybe a full meal and a snack. I guess I'm too picky. Back in the day when I used to smoke weed daily (no lectures, people) I ate much more, so the marinol IS a neat idea. Thankfully, I haven't *lost* weight, I just can't put any on and I have no reserves for when I get sick. =P Amy Wife to Will 11/3/95 Mama to Olivia Isabelle 9/18/03 & Phineas Maximilian 11/30/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Hi Dina, I wondered if you are allergic to one or more of the new things you are taking. If you feel worse than you did before, that's not good. Just a thought. L dinaa68 wrote: > I am in the process of trying to gain weight...I've been working > with a nutritionist that I'm really happy with. > > I am 38 years old, about 4'11 " , still ambulatory, and I weigh about > 70 pounds. My appetite is varied, but my weight rarely fluctuates, > so I usually don't pay much attention to it. I used to be obsessed > with my weight when I was younger. > > Now I am going to a pulmonary/neuromuscular clinic, and the doctors > there are " overhauling " me...a bi-pap for the first time, breath- > stacking exercises, a bone density test that revealed severe > osteoporosis in my hips, and the addition of nine supplements to > my " diet. " All of this has happened in the span of about six weeks. > I feel worse now than when I walked into that office. (grin) > > It was a joke but unfortunately its true. I'm struggling with severe > fatigue right now. But I also came down with a virus two weeks ago, > so that is part of it. I think also my body is trying to adjust to > all the supplements. > > So I won't list all the supplements unless someone wants me to, but > the ones that are supposed to be specifically for weight gain, as > far as I know anyway, are: pure whey isolate protein, MCT oil, L- > carnitine, and Co enzyme Q10. I make one shake a day with these and > a few other of the supplements, and 8 ounces of milk. The isolate > protein comes in vanilla or chocolate flavor, so the taste is ok. > This is not like a scandishake that is very high in calories, and > its not a full nutrition source like Ensure. These supplements are > designed to stimulate my appetite so I will eat more. > > Its working, and I'm not even drinking a shake every day. I am > starving every two hours!! Its great, but its also not so great > because I get so hungry that I feel weak. I don't usually eat a lot > of calories, so I think I need to increase my calories as well as > the amount of food I consume. Does that make sense? > > I don't like the way I'm feeling right now, but I'm determined to > hang in there with it. The nutritionist says my body is depleted > right now from the virus, the antibiotics, the sleeping problems, > and the adjustment to the supplements. He says I will start to feel > better. > > Its very hard to get all this in every day, and I am not able to > take everything he wants me to on a daily basis. But I am working on > it. I hope this long post has been helpful to someone. (grin) > > Dina > > > > > > > > > > > In a message dated 10/4/2006 7:49:52 PM Eastern Standard Time, > > > charmedcripchic@ writes: > > > > > > > > > > > > > > > I was informed by my physicians that yes you do have to get > knocked > > > out with general anaesthesia in order to get a permanent > feeding > > > tube. They also told me it would take less than 15 mins. > > > > > > While I had anion gap metabolic acidosis in August 05, I had a > > > temporary feeding tube put in via my nose with only novicaine > > sprayed > > > into my nostril first. It did the job and honestly did not hurt > at > > > all. > > > > > > Since you've brought children into the world, correct me if I'm > > > wrong, but if you need a feeding tube, IMHO I think you'd be > able > > to > > > get through a feeding tube surgery alright. > > > > > > Anything that keeps you away from any -God Forbid- other > matabolic > > > acidosis attack is a risk worth taking. > > > > > > Blueyedaze/Amy, I know we've had diferences in the past but > > please, > > > please, please, know that I wish you a full recovery and I pray > > for > > > you to be healthy. You have many people who care about you, > your > > > well being, quality of life and a husband and little ones who > need > > > you. Please hang in there, know we care, and do whatever you > have > > to > > > do to recover. > > > > > > > > > > > > > > > > > > > > > Thanks! I don't hold grudges (or at least try not to , so no > > worries. > > > > > > I'm just such a baby about the whole intubation nonsense when it > > comes to > > > general anesthesia, so I've really got some thinking to do. I > may > > just invest in > > > some more Scandishake and go that route for a while. > > > > > > > > > Amy > > > Wife to Will 11/3/95 > > > Mama to Olivia Isabelle 9/18/03 > > > & > > > Phineas Maximilian 11/30/05 > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2006 Report Share Posted October 8, 2006 Scandishake--> http://www.scandipharm.com/productsunitedstates.php?lang=1 Order 2 or more cases and you get free shipping. L blueyedaze@... wrote: > > In a message dated 10/6/2006 4:38:43 PM Eastern Standard Time, > charmedcripchic@... <mailto:charmedcripchic%40> writes: > > There's been a lot of debates over feeding tubes at the SMA world > confrence {especially in 2002} over feeding tubes backing up causing > aspiration and pnuemonia in peple with SMA. But then again choking > on food can pose the same problem {that's how my brother with SMA's > life ended in 1973}. > > As far as the no feeding tube option goes- Oh skandishakes An > excellent calory booster. 900 calories a packet as opposed to 250 > per can of Ensures, Boost, etc. > > Have you heard of or tried skandi sprinkles? They're like shaking > out a salt shaker over what ever you want to eat but there's not > really any taste to them. It's a little harder to count your calory > intake with the sprinkles but your adding in more calories to your > meal and that's what's needed anyway and all. > > Please let me know where you get skandishake supplies. Around here > nobody has a clue and I've had to get samples from my pulmonary > clinic {not a reliable way to get supplies}. > > Also have any doctors tried any meds that can get your appetite reved > up? Like Megace or Marinol {a.k.a. legal pot/weed extract in a > pill}? Even some antidepressants help give you 'munchy mania' so > it's just easier to gain weight. This obviously would be if appetite > is a problem not is weight loss is happening from other issues. > > Your mileage may vary as the saying goes. > > What ever you decide on its yours and nobody elses choice. No pun > intended but follow your gut feelings on this. When all is said and > done it's your mind body and sanity that has to deal with these > things at the end of the day. > > Luckily, I'm generally okay swallowing whatever I eat. It was (well, is) > kind of just a matter of slowing down enough to eat an entire meal > since it > takes me twice as long as most people. > > Where are you from again? I'm in NY and use CVS Pharmacy. They don't > stock > Scandishake, but ordered it for me. I got a free sample of the > sprinkles when I > was pregnant with Phin, but only ended up using it a handful of times. > > Appetite-wise, I vary by day. Some days, I literally graze constantly. > Other > days, I can eat maybe a full meal and a snack. I guess I'm too picky. > Back > in the day when I used to smoke weed daily (no lectures, people) I ate > much > more, so the marinol IS a neat idea. Thankfully, I haven't *lost* > weight, I just > can't put any on and I have no reserves for when I get sick. =P > > Amy > Wife to Will 11/3/95 > Mama to Olivia Isabelle 9/18/03 > & > Phineas Maximilian 11/30/05 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 It can be caused but a whole lot of things but basically it means his blood PH is messed up. Its commonly caused by uncontrolled diabetes, severe dehydration and respiratory or kidney issues. I hope you have answers by now and he's on the mend:) metabolic acidosis > Short and sweet question as I & #39;m typing from my blackberry. Max is in > the hospital and has a significant metabolic acidosis.his serum bicarb was > 11 and the blood gas bicarb was 8 . Can someone help to expain what & #39;s > going on/? > Thanks Missy > www.Caringbridge.com/boggiokids > > > > ________________________________________________________________________________\ ____ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > ------------------------------------ > > 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. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 I have no information for you, but just wanted you to know that you are in our thoughts and prayers. Hoping things are better. Hang in there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 Missy, trust your Mama's intuition! You knew something was up last night! @...: kristin-smith@...: Wed, 23 Apr 2008 16:46:43 +0000Subject: Re: metabolic acidosis I have no information for you, but just wanted you to know that you are in our thoughts and prayers. Hoping things are better. Hang in there![Non-text portions of this message have been removed] _________________________________________________________________ Make i'm yours. Create a custom banner to support your cause. http://im.live.com/Messenger/IM/Contribute/Default.aspx?source=TXT_TAGHM_MSN_Mak\ e_IM_Yours Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Metabolic Acidosis The body functions optimally when it is in equilibrium. When it goes out of equilibrium and becomes more acidic you will have consequences. Learn more about Metabolic Acidosis and what you can do to decrease it effects. http://www.bodybuilding.com/fun/beast35.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 The body is remarkably adept at maintaining acidity. If it were not, you would die very quickly. Certain pathologies such as cancer can affect this equilibrium. Diet will not. Metabolic Acidosis Metabolic Acidosis The body functions optimally when it is in equilibrium. When it goes out of equilibrium and becomes more acidic you will have consequences. Learn more about Metabolic Acidosis and what you can do to decrease it effects. http://www.bodybuilding.com/fun/beast35.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 What us important is blood PH, not urine PH. The body maintains a blood PH within an extremely tight range. Nothing you eat will affect that. Re: Metabolic Acidosis As measured by saliva and/or urine with ph strips, it is easy to effect it. I do it all the time. Yes the body tries to maintain its prefered ph, but to do that, it uses minerals to buffer the acids from normal metabolism. If it isn't getting them from the diet, it will leach it out of tissues and bone. Also, different food types can hinder or help the body maintain its ph. You can demonstrate this to yourself by measuring your ph after eating a lot of, oh say, sugar or meat. I also do that all the time. Also check your ph after ingesting a 1/4 teaspoon of sodium bicarbonate...there is a big difference. Metabolic Acidosis Metabolic Acidosis The body functions optimally when it is in equilibrium. When it goes out of equilibrium and becomes more acidic you will have consequences. Learn more about Metabolic Acidosis and what you can do to decrease it effects. http://www.bodybuilding.com/fun/beast35.htm Quote Link to comment Share on other sites More sharing options...
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