Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 I know there are a couple of families on the list but I do not know which ones hopefully someone will speak up. But I have never heard of gamma globulin causing any kind of wt issues. Is he on any other meds that might be causing it? ( seizure meds, behavioral meds??) BARBIE ________________________________ From: " Gee223@... " <Gee223@...> Sent: Sunday, January 25, 2009 10:46:44 PM Subject: Need some help Hi My son is receiving IVIG once amonth at UCLA. He also was just DX with a mitochondrial disease. My question is..... Do any of you have kids with Mitochondrial disease and are doing IVIG? My son has gained a lot of weight from being failure to thrive to now just really needing to keep an eye in his weight gain as it is not good for a muscle disese. Have any of your children gained lots of weight fast from IVIG? Anyone with Mito issues as well in the same situation we are? Thanks in advance, ************ **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola. com/promoclk/ 100000075x121585 5013x1201028747/ aol?redir= http://www. freecreditreport .com/pm/default. aspx?sc=668072% 26hmpgID= 62%26bcd= De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 perhaps steroids? Need some help Hi My son is receiving IVIG once amonth at UCLA. He also was just DX with a mitochondrial disease. My question is..... Do any of you have kids with Mitochondrial disease and are doing IVIG? My son has gained a lot of weight from being failure to thrive to now just really needing to keep an eye in his weight gain as it is not good for a muscle disese. Have any of your children gained lots of weight fast from IVIG? Anyone with Mito issues as well in the same situation we are? Thanks in advance, ************ **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola. com/promoclk/ 100000075x121585 5013x1201028747/ aol?redir= http://www. freecreditreport .com/pm/default. aspx?sc=668072% 26hmpgID= 62%26bcd= De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Its pretty common for them to start gaining weight once they start on IVIG, gained I think it was 10 lbs in the 1st 5 months after no growth for over a year. Its because the body is no longer putting all its energy into fighting germs that it has time to work on normal growth issues. Weight gain is a GOOD sign! Anyway, how have you altered his diet due to the mito? I know we had to switch to the high carb/ low fat/protein and Lilly started growing pretty fast after that. It could just be the new diet you have him on. (assuming you changed his diet already) Need some help > Hi My son is receiving IVIG once amonth at UCLA. He also was just DX with > a > mitochondrial disease. My question is..... Do any of you have kids with > Mitochondrial disease and are doing IVIG? My son has gained a lot of > weight from > being failure to thrive to now just really needing to keep an eye in his > weight > gain as it is not good for a muscle disese. Have any of your children > gained > lots of weight fast from IVIG? Anyone with Mito issues as well in the same > situation we are? Thanks in advance, > **************A Good Credit Score is 700 or Above. See yours in just 2 > easy > steps! > (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De > cemailfooterNO62) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Many FTT/PID kids gain weight on IVIG (for some of the reasons Barbie mentioned) but this is usually a good sign for your " typical " PIDer. Your situation may differ due to mito and there are a few other supermoms here with dx of PID and mito. (Some do subcutaneous IgG therapy at home). Perhaps they'll chime in. And the docs might have more insights. its hard to imagine that monthly premed (ie steroid) would cause such a profound effect...but evey child is different. Can you tell me if UCLA dx'd the mito and how? Thanks, Mom to CVIDer, 7 Sent on the Now Network™ from my Sprint® BlackBerry Need some help Hi My son is receiving IVIG once amonth at UCLA. He also was just DX with a mitochondrial disease. My question is..... Do any of you have kids with Mitochondrial disease and are doing IVIG? My son has gained a lot of weight from being failure to thrive to now just really needing to keep an eye in his weight gain as it is not good for a muscle disese. Have any of your children gained lots of weight fast from IVIG? Anyone with Mito issues as well in the same situation we are? Thanks in advance, **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 YES, There are several children on here believed to have a mito disease. Blakeis 16. He has SCID with complete T-Cell Dysfunction he is alos autistic ans has OCD?ODD He has been getting IVIG/Sub-Q IgG Therapy since the age of 5!! Kids with Mito have to have larger amt of IVIG due to the neurological part of the brain. There are children/adluts who get high amt.s of IgG due to seizure and neuro problems & tehy seem tod fine with it(Blake goes to the blood clinic and we see this all the time!!!!) With Blake they have not ruled out Mit...but I am really not in favor of adding anothere DX if we area already doing all taht is out there for him!!! Mom to Blake One week away from 17.....OH NO!!! " Children are like butterflies in the wind. Some fly higher than others, BUT each one flies the best they can!!!! " From: Gee223@... <Gee223@...> Subject: Need some help Date: Sunday, January 25, 2009, 11:46 PM Hi My son is receiving IVIG once amonth at UCLA. He also was just DX with a mitochondrial disease. My question is..... Do any of you have kids with Mitochondrial disease and are doing IVIG? My son has gained a lot of weight from being failure to thrive to now just really needing to keep an eye in his weight gain as it is not good for a muscle disese. Have any of your children gained lots of weight fast from IVIG? Anyone with Mito issues as well in the same situation we are? Thanks in advance, ************ **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola. com/promoclk/ 100000075x121585 5013x1201028747/ aol?redir= http://www. freecreditreport .com/pm/default. aspx?sc=668072% 26hmpgID= 62%26bcd= De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Are you using steroids to premedicate? gained TONS of weight at first because of the amount of steroids needed. Switched to SubQ and now he is too skinny! LOL @...: Gee223@...: Sun, 25 Jan 2009 23:46:44 -0500Subject: Need some help Hi My son is receiving IVIG once amonth at UCLA. He also was just DX with a mitochondrial disease. My question is..... Do any of you have kids with Mitochondrial disease and are doing IVIG? My son has gained a lot of weight from being failure to thrive to now just really needing to keep an eye in his weight gain as it is not good for a muscle disese. Have any of your children gained lots of weight fast from IVIG? Anyone with Mito issues as well in the same situation we are? Thanks in advance, **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=Decemailfoo\ terNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Hi. My boys do not have a mito disease, but there are a few families on our SDS list who have mito diseases. I could pass your email along to them and ask if they could help? Do you want me to do that? You are more than welcome to join the list, too. It is the shwachmansyndrome list. Peace be with you, Pattie Without life, liberty and the pursuit of happiness are not possible. Family Website: www.shwachman.50megs.com Homeschool Blog: www.catholicmomof3.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Hi, that would be great but what is a SDS group? Thanks, **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Is your 5000 still under warranty? I'd get that variable speed "wobble" fixed before it runs out (if it is still under warranty). You could get the new 5200 so you have something to use while the 5000 is in for repairs!Hmmm, the 5000 and the 5200 perform about the same, but the 5200 has BPA-free containers - would that do it? Blessings,Lea Ann SavageSatellite Beach, FL(321) 773-7088 (home)(321-961-9219 (cell)))><'>www.VitamixLady.comwww..com<))>< On Sep 15, 2011, at 2:39 PM, Ross wrote: I've had my vitamix 5000 since they first came out and I have 2 containers for it the wet the dry and the 32 ounce wet. Now for the help part I am going to the Big e next week and kind of thought I would like to buy a new 5200 my old one runs fine just is a little quirky on the slowest variable speeds ,( probably nothing more than a dirty contact ) How or what can I tell my wife that would sound reasonable of why I need antoher vitamix ? Thanks ps I know I want one or make that two Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 how about accidentally dropping it into a sink full of water? O:)On Thu, Sep 15, 2011 at 2:12 PM, Lea Ann Savage <lsavage@...> wrote: Is your 5000 still under warranty? I'd get that variable speed " wobble " fixed before it runs out (if it is still under warranty). You could get the new 5200 so you have something to use while the 5000 is in for repairs! Hmmm, the 5000 and the 5200 perform about the same, but the 5200 has BPA-free containers - would that do it? Blessings, Lea Ann SavageSatellite Beach, FL(321) 773-7088 (home)(321-961-9219 (cell) ))><'>www.VitamixLady.comwww..com<))>< On Sep 15, 2011, at 2:39 PM, Ross wrote: I've had my vitamix 5000 since they first came out and I have 2 containers for it the wet the dry and the 32 ounce wet. Now for the help part I am going to the Big e next week and kind of thought I would like to buy a new 5200 my old one runs fine just is a little quirky on the slowest variable speeds ,( probably nothing more than a dirty contact ) How or what can I tell my wife that would sound reasonable of why I need antoher vitamix ? Thanks ps I know I want one or make that two -- --------------------------- Jablonski Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Ha Ha Ha HA HA HA - that cracked me up ! :-) Blessings,Lea Ann SavageSatellite Beach, FL(321) 773-7088 (home)(321-961-9219 (cell)))><'>www.VitamixLady.comwww..com<))>< On Sep 15, 2011, at 5:55 PM, Jablonski wrote: how about accidentally dropping it into a sink full of water? O:)On Thu, Sep 15, 2011 at 2:12 PM, Lea Ann Savage <lsavage@...> wrote: Is your 5000 still under warranty? I'd get that variable speed "wobble" fixed before it runs out (if it is still under warranty). You could get the new 5200 so you have something to use while the 5000 is in for repairs! Hmmm, the 5000 and the 5200 perform about the same, but the 5200 has BPA-free containers - would that do it? Blessings, Lea Ann SavageSatellite Beach, FL(321) 773-7088 (home)(321-961-9219 (cell) ))><'>www.VitamixLady.comwww..com<))>< On Sep 15, 2011, at 2:39 PM, Ross wrote: I've had my vitamix 5000 since they first came out and I have 2 containers for it the wet the dry and the 32 ounce wet. Now for the help part I am going to the Big e next week and kind of thought I would like to buy a new 5200 my old one runs fine just is a little quirky on the slowest variable speeds ,( probably nothing more than a dirty contact ) How or what can I tell my wife that would sound reasonable of why I need antoher vitamix ? Thanks ps I know I want one or make that two -- --------------------------- Jablonski Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Lea Ann, couldn't get a trade in credit on his 5000? Personally, I would likely sell it on craigslist and put the money towards a new one, but best to know all the options? I've had my vitamix 5000 since they first came out and I have 2 containers for it the wet the dry and the 32 ounce wet. Now for the help part I am going to the Big e next week and kind of thought I would like to buy a new 5200 my old one runs fine just is a little quirky on the slowest variable speeds ,( probably nothing more than a dirty contact ) How or what can I tell my wife that would sound reasonable of why I need antoher vitamix ? Thanks ps I know I want one or make that two -- --------------------------- Jablonski Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Ross, I know your wife......... Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Hi everyone, I have been pretty I've had achalasia for the last 2 years, but just got diagnosed officially today. Since Sat night I have not been able to keep down any food or any liquid even water. I have been to the hospital several times - so far they have done an endoscopy and manometry and determined it was definitely achalasia. Finally tonight they decided to get me in for the botox injection instead of sending me home again without being able to eat or drink at all (i have lost 20 lbs in 4 days). As soon as I got out I had a drink of water and it came right back up. Has anyone else had it where botox didnt help at all? Does it take some time to start working? At this point I'm tempted to just go into the ER, but not too sure. What makes all this worse is that I don't have insurance and won't get it through work for another 3 months Any info on the botox and why it might not be working would be awesome and any suggestions on what I should do/try next Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Hello. I would suggest that you ask your doctor about dilations. That may be a choice, the doctor may know if it would be effective for you. ________________________________ From: cooleyjn <cooleyjn@...> achalasia Sent: Thursday, June 14, 2012 7:20 PM Subject: Need some help  Hi everyone, I have been pretty I've had achalasia for the last 2 years, but just got diagnosed officially today. Since Sat night I have not been able to keep down any food or any liquid even water. I have been to the hospital several times - so far they have done an endoscopy and manometry and determined it was definitely achalasia. Finally tonight they decided to get me in for the botox injection instead of sending me home again without being able to eat or drink at all (i have lost 20 lbs in 4 days). As soon as I got out I had a drink of water and it came right back up. Has anyone else had it where botox didnt help at all? Does it take some time to start working? At this point I'm tempted to just go into the ER, but not too sure. What makes all this worse is that I don't have insurance and won't get it through work for another 3 months Any info on the botox and why it might not be working would be awesome and any suggestions on what I should do/try next Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 Just be aware you have two things going on here. Achalasia affects the muscle contractions that get food down your esophagus. Often it makes the process go backwards so food goes down partway and then reverses and it comes back up. Or a bolus of food just stops halfway down giving the sensation something is stuck. The other thing achalasia affects is the group of nerves that relaxes to open the bottom part of your esophagus (LES). This nerve plexus starts to die so when you swallow the esophagus only opens part way. Eventually the nerve plexus stops functioning and the LES can't relax to open at all. Botox, dilation and surgery only work for the second problem-they force the LES to open to allow food to get into your stomach. They don't help with the swallowing itself (although after surgery, when my esophagus was no longer getting irritated from food and drugs sitting in for hours, almost all of my swallowing problems disappeared). So you could drink some water and, if it could get to the bottom of your esophagus, it could get into your stomach because the Botox has opened the LES. However, right now ineffective muscle contractions aren't letting the water get down that far. Before I had my surgery I found very cold liquids made swallowing impossible. Nothing could go down for an hour afterward. Drinking warm or hot drinks helped the process. From what I've read everyone seems to be different about this. What helps some makes others worse so you will have to experiment to see what works for you. I know carbonated drinks help some people. Dehydration is going to be a big problem if you can't drink so make very sure you have someone watching you. When you can drink try diluted Gator-aid; it contains electrolytes and the sugar your body needs. Make every drop count. The loss of weight you have experienced so far has been mainly water not fat. Takes longer to burn fat off. Once you can drink again you will regain the water weight. See a surgeon as soon as you can. Most surgeons will also require a barium swallow so they can observe your esophagus and LES in action and see how dilated your esophagus is. > > Hi everyone, I have been pretty I've had achalasia for the last 2 years, but just got diagnosed officially today. Since Sat night I have not been able to keep down any food or any liquid even water. I have been to the hospital several times - so far they have done an endoscopy and manometry and determined it was definitely achalasia. Finally tonight they decided to get me in for the botox injection instead of sending me home again without being able to eat or drink at all (i have lost 20 lbs in 4 days). As soon as I got out I had a drink of water and it came right back up. Has anyone else had it where botox didnt help at all? Does it take some time to start working? > > At this point I'm tempted to just go into the ER, but not too sure. What makes all this worse is that I don't have insurance and won't get it through work for another 3 months > > Any info on the botox and why it might not be working would be awesome and any suggestions on what I should do/try next > Quote Link to comment Share on other sites More sharing options...
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