Guest guest Posted September 20, 2003 Report Share Posted September 20, 2003 Marisa, it is a possibility that the pill has caused, or helped cause the pancreatitis as it is a side effect. I know I had one distinct case of pancreatitis caused by taking the pill as I think I started it too soon after being released from the hospital - I was back in the hospital within 2 days of restarting the pill, though I don't think it caused all my cases, as I still had them when I stopped taking the pill. This was before I was diagnosed as chronic and was only having acute cases of pancreatitis, though and I haven't taken the pill since I was diagnosed chronic so I don't know how it would affect someone with chronic pancreatitis. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Judi, I am sure you are going to get a lot of responses to this one. I can try to get the ball rolling. I don't think anyone really knows. In our case, our son is SGA but has no appetite. I think his is directly related to constant reflux. Anytime he eats, his stomach hurts. Didn't take him long to figure out that if he didn't eat, he didn't hurt. I know that Dr. Harbison discussed at convention that our kids can have genetic RSS or non genetic. It was her theory (correct me if I am wrong) that some of our kids had compromised intrauterine nutrition. Bad placenta, cord or something. So they grew with a decreased amount of nutrition, and their bodies and minds just learned that the nutrition wasn't there, so don't worry about it. Do with less. I remember distinctly Harbison saying our kids would make good Cave Babies since they would be crying for food that wasn't available. That hit home, because that is my son! Anyway, I know that is just one theory. But I do think that the complicated GI issues, reflux, delayed gastric emptying, bite and teeth problems all contribute to the problem. I am all for early intervention with speech and feeding, because now at the age of 7, we are trying to correct all the bad habits already formed. Sorry, caught me on my soap box this morning.... Beth H. Mom to Matt, 7 yrs, SGA > I was just wondering, what is the cause of children with RSS > refusal to eat? Is it painful,is it in their brain or what? I > sometimes feel that I am dealing with an infant with an eating > disorder like anorexia. It baffles me. knows enough to > cruise the furniture at 9 months, transitioned into sitting at 5 > months, and stands on her own. Can she be this smart, but not > realize when she is hungary? Any answers would be appreciated. > Thanks and prayers > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Judi, My son is 19 month old . He has been tcompletely tube fed since birth. I did try, with the help of a lactation consultant and OT, to breast feed him. He had good days and bad, but it wasn't adding up to anything, and just causing him and I both added stress. Plus, as we all know, they burn a lot of calories from breast and bottle feeding. Anyway, I don't really know why our kids do not eat. Maybe it is a brain thing, I don't know. But in my case, we knew that was not growing in the womb. And, I did read Beth's post and she said that Dr. H has mentioned something about the environment the child was in in the womb. Well, I KNOW this was not the case for . I had so many u/s while I was pregnant with him, and they saw that I had a three vein cord. Perfect for him to get the nutrition he needed. Also, once I had via c-section, they sent the placenta and 's cord blood for testing. They both came back normal, and adequite for him to get plenty of what he needed to grow as a normal baby should. Nothing was compromised within his environment while in the womb. Also, has been tested several times for reflux, and according to the tests, he does not have it. So, reflux evidently isn't the reason doesn't eat either. I do think it has something to do with GI and maybe delayed emptying. They just get full so quickly with so little and it sits and takes forever to digest. So, they don't ever really get hungry. I don't know. WHen was fed by a j tube, which goes into the intestines, he still wouldn't eat much by mouth. He would take three bites of baby food at themost, and that was it. He would take a few sips of water, too. Now that he is fed into his stomach 23 hours a day, we don't get the opportunity to try to feed him by mouth because he doesn't want anything. We have tried and he will gag or just spit up instantly. His stomach is never empty, so he doesn't want to eat at all. To end this long post, it would be interesting if someone could research why our kids don't eat. There is something underlying in all our kids that has to do with this syndrome, I am convinced. Not really the intrauterine environment. Maybe some did have a compromised environment, though, but I think there is more to it than that. Jodi R. 's mom 19 months, 14 lbs!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 -I also had several u/s while pregnant. Everything always looked normal. I even had a level 2. When was born, I knew instantly that she did not feed properly. I believe I was disregarded and the Drs. never heard me. My placenta came back normal also. It just struck me odd that my son was 9 lbs. 11 oz at birth and was 5 lbs. 11 oz. She eats about 20 oz. of formula a day(with a lot of struggle) and about a jar and a half of the Beechnut first advantage baby food. She is getting her g-tube in two weeks along with a genetic eval at CHOP. She was tested foe reflux and delayed emptying, but both tests were negative. She also had a negative chromosome test. Thanks for writing back. Judi mom to 9 months 12 lbs. and 25.6 inches -- In RSS-Support , " Jodi Rollison " wrote: > Judi, My son is 19 month old . He has been tcompletely tube > fed since birth. I did try, with the help of a lactation consultant > and OT, to breast feed him. He had good days and bad, but it wasn't > adding up to anything, and just causing him and I both added stress. > Plus, as we all know, they burn a lot of calories from breast and > bottle feeding. Anyway, I don't really know why our kids do not > eat. Maybe it is a brain thing, I don't know. But in my case, we > knew that was not growing in the womb. And, I did read Beth's > post and she said that Dr. H has mentioned something about the > environment the child was in in the womb. Well, I KNOW this was not > the case for . I had so many u/s while I was pregnant with > him, and they saw that I had a three vein cord. Perfect for him to > get the nutrition he needed. Also, once I had via c- section, > they sent the placenta and 's cord blood for testing. They > both came back normal, and adequite for him to get plenty of what he > needed to grow as a normal baby should. Nothing was compromised > within his environment while in the womb. > > Also, has been tested several times for reflux, and according > to the tests, he does not have it. So, reflux evidently isn't the > reason doesn't eat either. I do think it has something to do > with GI and maybe delayed emptying. They just get full so quickly > with so little and it sits and takes forever to digest. So, they > don't ever really get hungry. I don't know. WHen was fed by a > j tube, which goes into the intestines, he still wouldn't eat much by > mouth. He would take three bites of baby food at themost, and that > was it. He would take a few sips of water, too. Now that he is fed > into his stomach 23 hours a day, we don't get the opportunity to try > to feed him by mouth because he doesn't want anything. We have tried > and he will gag or just spit up instantly. His stomach is never > empty, so he doesn't want to eat at all. > > To end this long post, it would be interesting if someone could > research why our kids don't eat. There is something underlying in > all our kids that has to do with this syndrome, I am convinced. Not > really the intrauterine environment. Maybe some did have a > compromised environment, though, but I think there is more to it than > that. > > Jodi R. > 's mom 19 months, 14 lbs!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 -- Thanks for the info and for being on your soap box. - In RSS-Support , " millerkaitlyn " wrote: > Judi, > > I am sure you are going to get a lot of responses to this one. I > can try to get the ball rolling. I don't think anyone really knows. > > In our case, our son is SGA but has no appetite. I think his is > directly related to constant reflux. Anytime he eats, his stomach > hurts. Didn't take him long to figure out that if he didn't eat, he > didn't hurt. > > I know that Dr. Harbison discussed at convention that our kids can > have genetic RSS or non genetic. It was her theory (correct me if I > am wrong) that some of our kids had compromised intrauterine > nutrition. Bad placenta, cord or something. So they grew with a > decreased amount of nutrition, and their bodies and minds just > learned that the nutrition wasn't there, so don't worry about it. > Do with less. I remember distinctly Harbison saying our kids would > make good Cave Babies since they would be crying for food that > wasn't available. That hit home, because that is my son! > > Anyway, I know that is just one theory. But I do think that the > complicated GI issues, reflux, delayed gastric emptying, bite and > teeth problems all contribute to the problem. I am all for early > intervention with speech and feeding, because now at the age of 7, > we are trying to correct all the bad habits already formed. > > Sorry, caught me on my soap box this morning.... > > Beth H. > Mom to Matt, 7 yrs, SGA > > > > I was just wondering, what is the cause of children with RSS > > refusal to eat? Is it painful,is it in their brain or what? I > > sometimes feel that I am dealing with an infant with an eating > > disorder like anorexia. It baffles me. knows enough to > > cruise the furniture at 9 months, transitioned into sitting at 5 > > months, and stands on her own. Can she be this smart, but not > > realize when she is hungary? Any answers would be appreciated. > > Thanks and prayers > > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Beth wrote an incredibly insightly response. From the recent medical journal articles I finally got around to researching (I will put them in the MAGIC library), it appears that researchers agree with Dr. H and Beth. A combination of problems. First, intrauterine/genetic component. Body learns to survive on less, and not to expect more. Second, add to it the common gut dysmotility issues. Silent reflux, child learns it hurts to eat -- delayed gastric empyting, causing constipation, oh my tummy hurts and forget eating and my tummy is full all the time so I don't want to eat. Interestingly enough, one article, and I can't recall the specifics but BOY is it going to raise the roof at the convention, said that they found that the SGA children at the bottom third of weight and length (born the smallest and stayed the smallest) were among the MOST overweight as adults. This ties into the risk for SGA children of developing Syndrome x (cardiovascular issues, insulin resistance, etc). They raise again the theory that possibly because the child is too short, that their being overweight contributes to these problems. So, the theory goes, if the child uses GH to more normalize height, then as adults, their weight would be more proportionate and their risk for cardiov/diabetes would decrease. Hmm........ Jenn > I was just wondering, what is the cause of children with RSS > refusal to eat? Is it painful,is it in their brain or what? I > sometimes feel that I am dealing with an infant with an eating > disorder like anorexia. It baffles me. knows enough to > cruise the furniture at 9 months, transitioned into sitting at 5 > months, and stands on her own. Can she be this smart, but not > realize when she is hungary? Any answers would be appreciated. > Thanks and prayers > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Even banded shut, I was still able to fit the syringe tube in. My meds were liquid (liquid childrens' tylenol, liquid sudafed), and in the case of other meds (BCP and amitryptyline), my husband used a pill crusher and mixed them with the liquid meds. I didn't do any pills for quite awhile as they were pretty small and I didn't have enough feeling in my mouth to be able to tell whether they'd gone down my throat or gotten stuck between tongue & cheeks, for example! > > Hi all- > > I'm having upper/lower/genio on December 8. I know most people need > pain meds. How do you take them since I'll be banded shut? Are > they liquid? > > Thanks! > Casey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Even banded shut, I was still able to fit the syringe tube in. My meds were liquid (liquid childrens' tylenol, liquid sudafed), and in the case of other meds (BCP and amitryptyline), my husband used a pill crusher and mixed them with the liquid meds. I didn't do any pills for quite awhile as they were pretty small and I didn't have enough feeling in my mouth to be able to tell whether they'd gone down my throat or gotten stuck between tongue & cheeks, for example! > > Hi all- > > I'm having upper/lower/genio on December 8. I know most people need > pain meds. How do you take them since I'll be banded shut? Are > they liquid? > > Thanks! > Casey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 I was lucky enough to get liquid Vicodin. Then, of course, there was the Penecillin - yuck! The only pill I had was the steroid - which I found dissolved quicky in water, so I could drink that, too. > > Hi all- > > I'm having upper/lower/genio on December 8. I know most people need > pain meds. How do you take them since I'll be banded shut? Are > they liquid? > > Thanks! > Casey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 I was lucky enough to get liquid Vicodin. Then, of course, there was the Penecillin - yuck! The only pill I had was the steroid - which I found dissolved quicky in water, so I could drink that, too. > > Hi all- > > I'm having upper/lower/genio on December 8. I know most people need > pain meds. How do you take them since I'll be banded shut? Are > they liquid? > > Thanks! > Casey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 all of the meds--pain and penicillan can be liquid--all of mine are and I can't imagine a DR prescribing non liquid form--it would seem a pretty obviouse necessity. > > > > Hi all- > > > > I'm having upper/lower/genio on December 8. I know most people need > > pain meds. How do you take them since I'll be banded shut? Are > > they liquid? > > > > Thanks! > > Casey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 all of the meds--pain and penicillan can be liquid--all of mine are and I can't imagine a DR prescribing non liquid form--it would seem a pretty obviouse necessity. > > > > Hi all- > > > > I'm having upper/lower/genio on December 8. I know most people need > > pain meds. How do you take them since I'll be banded shut? Are > > they liquid? > > > > Thanks! > > Casey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 Hi I was just wondering where I can find out if the doc my son is seeing is recommened by Dr. Ponseti? Thanks Corrina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/physicians.html celestine843 celestine843@...> wrote: Hi I was just wondering where I can find out if the doc my son is seeing is recommened by Dr. Ponseti? Thanks Corrina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 Corinna, just fyi... whether or not a particular doctor is on the " list " or not, it's still important to make sure the complete protocol is being followed exactly. here's a " checklist " of questions and warning signs that can help you make sure.. http://pages.ivillage.com/ponseti_links/id13.html and Claire > > Hi I was just wondering where I can find out if the doc my son is > seeing is recommened by Dr. Ponseti? > Thanks > Corrina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 Exactly, our doc is on the list and I wouldn't necessarily recommend anyone go to him right now because he's modifying big time. So don't assume that because a doc is on the list that they're following the Method. That checklist is important. Kori At 10:22 AM 1/27/2005, you wrote: >Corinna, > >just fyi... whether or not a particular doctor is on the " list " or >not, it's still important to make sure the complete protocol is being >followed exactly. here's a " checklist " of questions and warning signs >that can help you make sure.. >http://pages.ivillage.com/ponseti_links/id13.html > > and Claire > > > > > > > > Hi I was just wondering where I can find out if the doc my son is > > seeing is recommened by Dr. Ponseti? > > Thanks > > Corrina > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.