Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 : Have you got the CHARGE parent manual from the foundation? This may help you and the doctors go through a list of common areas. Your comments do resonate in the CHARGE population. Endocrinology and growth hormones are an area addressed in the manual. Ear infections and/or deep infection to mastoid or sinus area much reported in CHARGE. re: digestion - if you discribe the types of foods or formula etc. many parents can help with suggestions, yes there are food allergies common to CHARGE (milk, wheat, gluten) Also, many parents will suggest digestive engimes have helped their children; Also delayed gastric stomach emtpy, piloric stenosis, all these things are common in CHARGE. You don't mention heart- this is something you may want to have Dr.'s look at ( I do recall cases in CHARGE where as the child grows, the aberant artery closes around the esophagus, very difficult to detect). re: urine test- there is a specific test to consider for kidney reflux, many parents didn't find answers until this specific test. (VLUG?) This is all from list-memory and not a professional expose. You don't mention communication or techniques you are using, this is my area. Hopefully we can all help with this, so Chandra may begin to indicate differences in pain. So much to consider. Waiting is not good......parents KNOW, be pushy to get the answers ASAP! Ann Gloyn, Deafblind and Special Education Specialist, CHARGE advocate charge33584 wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 : Have you got the CHARGE parent manual from the foundation? This may help you and the doctors go through a list of common areas. Your comments do resonate in the CHARGE population. Endocrinology and growth hormones are an area addressed in the manual. Ear infections and/or deep infection to mastoid or sinus area much reported in CHARGE. re: digestion - if you discribe the types of foods or formula etc. many parents can help with suggestions, yes there are food allergies common to CHARGE (milk, wheat, gluten) Also, many parents will suggest digestive engimes have helped their children; Also delayed gastric stomach emtpy, piloric stenosis, all these things are common in CHARGE. You don't mention heart- this is something you may want to have Dr.'s look at ( I do recall cases in CHARGE where as the child grows, the aberant artery closes around the esophagus, very difficult to detect). re: urine test- there is a specific test to consider for kidney reflux, many parents didn't find answers until this specific test. (VLUG?) This is all from list-memory and not a professional expose. You don't mention communication or techniques you are using, this is my area. Hopefully we can all help with this, so Chandra may begin to indicate differences in pain. So much to consider. Waiting is not good......parents KNOW, be pushy to get the answers ASAP! Ann Gloyn, Deafblind and Special Education Specialist, CHARGE advocate charge33584 wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 : Have you got the CHARGE parent manual from the foundation? This may help you and the doctors go through a list of common areas. Your comments do resonate in the CHARGE population. Endocrinology and growth hormones are an area addressed in the manual. Ear infections and/or deep infection to mastoid or sinus area much reported in CHARGE. re: digestion - if you discribe the types of foods or formula etc. many parents can help with suggestions, yes there are food allergies common to CHARGE (milk, wheat, gluten) Also, many parents will suggest digestive engimes have helped their children; Also delayed gastric stomach emtpy, piloric stenosis, all these things are common in CHARGE. You don't mention heart- this is something you may want to have Dr.'s look at ( I do recall cases in CHARGE where as the child grows, the aberant artery closes around the esophagus, very difficult to detect). re: urine test- there is a specific test to consider for kidney reflux, many parents didn't find answers until this specific test. (VLUG?) This is all from list-memory and not a professional expose. You don't mention communication or techniques you are using, this is my area. Hopefully we can all help with this, so Chandra may begin to indicate differences in pain. So much to consider. Waiting is not good......parents KNOW, be pushy to get the answers ASAP! Ann Gloyn, Deafblind and Special Education Specialist, CHARGE advocate charge33584 wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Hi , A suggestion is abdominal migraine. My daughter suffers from these. They cause excruciating stomach pain, vomiting if she is fed and can go for days and days. They can occur weekly, monthly, daily even. What I notice with my daughter is when one is about to start, she will seem very well, unusually well, for the 24 hours beforehand, and then go down like a ton of bricks. Other symptoms are pallor, chilly skin and either great restlessness or else lethargy. Hope this helps, as there are some quite good treatments for them. Marea Howe A frustrating mystery > Dear Group, > > I sent a message about Chandra possibly needing a G-tube. I would > like your help with suggestions about why she might be losing weight > as well. > As with most CHARGE children, Chandra is growing slowly. She is > 3 years and 2 months old and had reached nearly 23 pounds before she > began to lose weight. She is now a under 21 pounds. She has never > had a big appetite, but she was following her own gradual growth > curve for the most part. At the beginning of the summer, she began > to eat less than her average each day. She would eat 1/2 to 3/4 of > her normal amount most days, but a normal amount a few days a week. > This started a very slow, gradual decline in her weigh and she lost a > few ounces over the summer. Her doctor was not concerned, but > suggested we increase the calories in her food, which we did. We > didn't weigh her often enough to see if that helped. > By September, things took a turn for the worse. In early > September, Chandra began crying and screaming for 6 days straight. > She would cry for hours, then calm down for a period, they cry > again. At times she was screaming as though she had gotten her hand > slammed in a door or something. She refused to eat anything for a > day and 1/2, drank very little and did not sleep well at all. We > thought it might be gas, stomach cramps, constipation, but the > pediatrician could find nothing. We brought her to a > gastroenterologist and she found nothing during a routine > examination. The pediatrician suspected a urniary tract infection, > but could not get enough urine to test, so she said to watch Chandra > closely and see what happened. > After the 6 days of crying, eating little or nothing, and > getting little sleep, Chandra was back to her normal cheerful self. > We thought it was over. One week later, she started again. She > cried for hours, refused to eat, slept poorly, all the symptoms > again. The pediatrician suspected an ear infection, though her ears > seemed clear. We gave her a 10 day course of antibiotics. Four days > after she started them she calmed down, was happy and eating okay, > then on the day of the last dose she began round 3. She went on > crying, not eating, and sleeping poorly for 5 days, though this time > she seemed to be in less pain. She came out of it and was happy and > eating again for a week until this past Monday night when round 4 > began. This time as well she seems fussy and upset but not in real > pain. She is still fussing this morning. Yesterday she began eating > very well, then threw up in the afternoon and did not eat again the > rest of the day. She has not vomited much at all during these > episodes. She stayed up past midnight, but finally slept okay until > around 7:00 am. > This past Tuesday, we had an endoscopy done to check for ulcers > or other problems in her esophagus or stomach. Nothing was visible, > but we are awaiting the results of a biopsy. The gastroenterologist > suggested we consult a neurologist. We are also looking into food > allergies, though we have not changed her diet for over a year, and > we are going to have an endocrinologist check her hormones. > All these tests will take a while to schedule and run, and we > can't let her keep dropping weight so fast in the mean time. It is > obvious to us that something is causing her great distress and this > makes her stop eating which leads to the weight loss. If we find out > what is causing her to be so upset, she would eat again and avoid the > G-tube. More importantly, we want to find out what is causing her so > much distress. It is very difficult to watch your child suffer day > after day when you can do nothing but hold her and comfort her. We > don't want to get her a G-tube only to have her continue crying > periodically for a week straight. We are hoping someone has had a > similar experience and can help us point the doctors in the right > direction. Any help you can give would be appreciated. > Sorry for going on so long. > > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Hi , A suggestion is abdominal migraine. My daughter suffers from these. They cause excruciating stomach pain, vomiting if she is fed and can go for days and days. They can occur weekly, monthly, daily even. What I notice with my daughter is when one is about to start, she will seem very well, unusually well, for the 24 hours beforehand, and then go down like a ton of bricks. Other symptoms are pallor, chilly skin and either great restlessness or else lethargy. Hope this helps, as there are some quite good treatments for them. Marea Howe A frustrating mystery > Dear Group, > > I sent a message about Chandra possibly needing a G-tube. I would > like your help with suggestions about why she might be losing weight > as well. > As with most CHARGE children, Chandra is growing slowly. She is > 3 years and 2 months old and had reached nearly 23 pounds before she > began to lose weight. She is now a under 21 pounds. She has never > had a big appetite, but she was following her own gradual growth > curve for the most part. At the beginning of the summer, she began > to eat less than her average each day. She would eat 1/2 to 3/4 of > her normal amount most days, but a normal amount a few days a week. > This started a very slow, gradual decline in her weigh and she lost a > few ounces over the summer. Her doctor was not concerned, but > suggested we increase the calories in her food, which we did. We > didn't weigh her often enough to see if that helped. > By September, things took a turn for the worse. In early > September, Chandra began crying and screaming for 6 days straight. > She would cry for hours, then calm down for a period, they cry > again. At times she was screaming as though she had gotten her hand > slammed in a door or something. She refused to eat anything for a > day and 1/2, drank very little and did not sleep well at all. We > thought it might be gas, stomach cramps, constipation, but the > pediatrician could find nothing. We brought her to a > gastroenterologist and she found nothing during a routine > examination. The pediatrician suspected a urniary tract infection, > but could not get enough urine to test, so she said to watch Chandra > closely and see what happened. > After the 6 days of crying, eating little or nothing, and > getting little sleep, Chandra was back to her normal cheerful self. > We thought it was over. One week later, she started again. She > cried for hours, refused to eat, slept poorly, all the symptoms > again. The pediatrician suspected an ear infection, though her ears > seemed clear. We gave her a 10 day course of antibiotics. Four days > after she started them she calmed down, was happy and eating okay, > then on the day of the last dose she began round 3. She went on > crying, not eating, and sleeping poorly for 5 days, though this time > she seemed to be in less pain. She came out of it and was happy and > eating again for a week until this past Monday night when round 4 > began. This time as well she seems fussy and upset but not in real > pain. She is still fussing this morning. Yesterday she began eating > very well, then threw up in the afternoon and did not eat again the > rest of the day. She has not vomited much at all during these > episodes. She stayed up past midnight, but finally slept okay until > around 7:00 am. > This past Tuesday, we had an endoscopy done to check for ulcers > or other problems in her esophagus or stomach. Nothing was visible, > but we are awaiting the results of a biopsy. The gastroenterologist > suggested we consult a neurologist. We are also looking into food > allergies, though we have not changed her diet for over a year, and > we are going to have an endocrinologist check her hormones. > All these tests will take a while to schedule and run, and we > can't let her keep dropping weight so fast in the mean time. It is > obvious to us that something is causing her great distress and this > makes her stop eating which leads to the weight loss. If we find out > what is causing her to be so upset, she would eat again and avoid the > G-tube. More importantly, we want to find out what is causing her so > much distress. It is very difficult to watch your child suffer day > after day when you can do nothing but hold her and comfort her. We > don't want to get her a G-tube only to have her continue crying > periodically for a week straight. We are hoping someone has had a > similar experience and can help us point the doctors in the right > direction. Any help you can give would be appreciated. > Sorry for going on so long. > > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Ann, Thank you for your suggestions. We don't think the problem is ear or sinus infections. The pediatrician checked for that several times. Chandra had surgery for bilateral choanal atresia so her nasal passages have been widened to a more normal size. Chandra's heart is fine, though she had surgery for PDA and I assume the heart surgeon would have noticed any unusual arteries at the time. Unfortunately, the surgeon damaged Chandra's left phrenic nerve during the proceedure, paralyzing the left side of her diaphragm. Despite our efforts to give her time to recover on her own, we had no choice but to allow a different surgeon to plicate the left side of Chandra's diaphragm. An agonizing decision which was forced by Chandra's inablility to breath off a ventilator. She had been on the ventilator since birth due to the choanal atresia, and it had begun to damage her throat. If we had waited, the ENT said she would soon need a tracheotomy. All this happened in her first 2 months of life and gave us a great aversion to being forced into decisions about surgery. Chandra was checked for kidney reflux when she was in the NICU. They performed one test in which they gave her a diuretic then waited to measure her urine output. After waiting the alloted time and then wondering why there was no urine output, some genius realized that he had not taken the clamp off the urine catheter. The second proper test showed no kidney reflux. As for food allergies, Chandra may have developed an allergy to a food she has been eating for some time. We haven't changed her diet in over two years. She eats jars of baby food, fruits and vegetables, no meats, and a mixture we make up ourselves. We mix Isomil soy powder, oatmeal cereal, ground fresh apples, ground prunes (for constipation), ground Monteray jack cheese (for fat and protein), ground avocado (for fat) and each bottle gets a whole ground boiled egg. We add enough water to make it into a thin slurry and feed it to her by bottle with a wide slot cut in the nipple. This is her morning breakfast and, if she is hungry, her evening snack. Chandra has never shown any allergy to cheese or yogurt before, and we have not added any new types of baby foods in the last few weeks. Also, if it was a food allergy, why is it so periodic? Chandra's pediatrician and gastroenterologist have followed her since she was a few months old and left the NICU. They are both kind doctors and are concerned about Chandra. Both know her history, her diet, and her previous illnesses and both are stumped. That makes it all the more difficult to deal with. As for communication, Chandra is very limited. We have been trying to teach her sign language since she came home from the NICU at 3 and 1/2 months. Her hearing is fine and her vision is moderately good, though she has colobomas. Her cognitive abilities were at the 8-12 month level when she was tested in mid summer. She seems to understand a few words and signals for juice or food, but inconsistently. She will choose between food items or clothes when presented with choices and refuse to take the one she has not chosen so we think she is developing cognitively, though very slowly. She either does not understand, or does not respond to questions about where she is hurting. During the past two episodes, Chandra has mostly been fussy rather than seeming to show signs of real pain. She is not sleeping well or eating much which would make her very cranky, but something is keeping her from eating and sleeping. She will usually calm down if we hold her and rock her and will often fall asleep in minutes, only to rouse and cry as soon as we try to lay her in her crib. I spent much of today holding her and trying to let her sleep for brief periods, but at other times she was smiling and happy. We are awaiting more test results on Monday and will proceed from there. We have no problem being pushy. We quickly took charge of Chandra's care when she was in the NICU, much to the annoyance of some of her neonatologists. They wanted to proceed with dispatch but we forced them to fully inform us about what they were recommending and especially to tell us about the long term consequences of the proceedures. We were amazed at how little the neonatologists knew about the long term effects of diaphragm plication, or other things they said Chandra had to have done. We were also frustrated at how long it took them to bring us someone who did know. So many specialists concerned with their own small part of our daughter that many failed to see that she was a new human life who might live for 80 years or more with the consequences of the decisions and the mistakes they made in her first weeks of existence. They were so caught up in keeping her alive that they could not see that, bit by bit, they were taking away parts of her life whether through surgeries or by dispassionately informing us of what each in turn found was wrong with our baby girl. We are loath to give up any more of Chandra's life to a g-tube, even if it is relatiely minor and only temporary, but, once again, we may have no choice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 I have a friend whose child has CHARGE, but she is not on this list. Can I forward this message to her? They have experienced major abdominal trials, unfortunately it has often been caused by bowel obstructions not caught on x-ray. They think they have ruled out obstruction and get sent home and have cycles like you describe until she ends up with emergency surgery. I hope this is not the case for Chandra. On a more hopeful note, I agree with the possibility of abdominal migraine. Fortunately for us Dylan's longest was 36 hours. It took us a year to figure out the cause. Now we give advil at the first sign and he starts feeling better immediately. Before we knew it was heartbreaking. He would be feeling great, then all of a sudden he would begin gagging (he has a fundoplication so can't vomit), and crying, then he would go limp, if I moved at all he would start the crying and gagging again, vomiting through his tube. He would be pale with a cold sweat and very limp. Dylan also has trouble with constipation / megacolon and I believe the constipation and abdominal migraines are related. Hope you find some answers soon and can avoid surgery!!!!!! Kim Lauger ---------- > >To: CHARGE >Subject: A frustrating mystery >Date: Sun, Oct 20, 2002, 5:46 AM > > Dear Group, > > I sent a message about Chandra possibly needing a G-tube. I would > like your help with suggestions about why she might be losing weight > as well. > As with most CHARGE children, Chandra is growing slowly. She is > 3 years and 2 months old and had reached nearly 23 pounds before she > began to lose weight. She is now a under 21 pounds. She has never > had a big appetite, but she was following her own gradual growth > curve for the most part. At the beginning of the summer, she began > to eat less than her average each day. She would eat 1/2 to 3/4 of > her normal amount most days, but a normal amount a few days a week. > This started a very slow, gradual decline in her weigh and she lost a > few ounces over the summer. Her doctor was not concerned, but > suggested we increase the calories in her food, which we did. We > didn't weigh her often enough to see if that helped. > By September, things took a turn for the worse. In early > September, Chandra began crying and screaming for 6 days straight. > She would cry for hours, then calm down for a period, they cry > again. At times she was screaming as though she had gotten her hand > slammed in a door or something. She refused to eat anything for a > day and 1/2, drank very little and did not sleep well at all. We > thought it might be gas, stomach cramps, constipation, but the > pediatrician could find nothing. We brought her to a > gastroenterologist and she found nothing during a routine > examination. The pediatrician suspected a urniary tract infection, > but could not get enough urine to test, so she said to watch Chandra > closely and see what happened. > After the 6 days of crying, eating little or nothing, and > getting little sleep, Chandra was back to her normal cheerful self. > We thought it was over. One week later, she started again. She > cried for hours, refused to eat, slept poorly, all the symptoms > again. The pediatrician suspected an ear infection, though her ears > seemed clear. We gave her a 10 day course of antibiotics. Four days > after she started them she calmed down, was happy and eating okay, > then on the day of the last dose she began round 3. She went on > crying, not eating, and sleeping poorly for 5 days, though this time > she seemed to be in less pain. She came out of it and was happy and > eating again for a week until this past Monday night when round 4 > began. This time as well she seems fussy and upset but not in real > pain. She is still fussing this morning. Yesterday she began eating > very well, then threw up in the afternoon and did not eat again the > rest of the day. She has not vomited much at all during these > episodes. She stayed up past midnight, but finally slept okay until > around 7:00 am. > This past Tuesday, we had an endoscopy done to check for ulcers > or other problems in her esophagus or stomach. Nothing was visible, > but we are awaiting the results of a biopsy. The gastroenterologist > suggested we consult a neurologist. We are also looking into food > allergies, though we have not changed her diet for over a year, and > we are going to have an endocrinologist check her hormones. > All these tests will take a while to schedule and run, and we > can't let her keep dropping weight so fast in the mean time. It is > obvious to us that something is causing her great distress and this > makes her stop eating which leads to the weight loss. If we find out > what is causing her to be so upset, she would eat again and avoid the > G-tube. More importantly, we want to find out what is causing her so > much distress. It is very difficult to watch your child suffer day > after day when you can do nothing but hold her and comfort her. We > don't want to get her a G-tube only to have her continue crying > periodically for a week straight. We are hoping someone has had a > similar experience and can help us point the doctors in the right > direction. Any help you can give would be appreciated. > Sorry for going on so long. > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 I have a friend whose child has CHARGE, but she is not on this list. Can I forward this message to her? They have experienced major abdominal trials, unfortunately it has often been caused by bowel obstructions not caught on x-ray. They think they have ruled out obstruction and get sent home and have cycles like you describe until she ends up with emergency surgery. I hope this is not the case for Chandra. On a more hopeful note, I agree with the possibility of abdominal migraine. Fortunately for us Dylan's longest was 36 hours. It took us a year to figure out the cause. Now we give advil at the first sign and he starts feeling better immediately. Before we knew it was heartbreaking. He would be feeling great, then all of a sudden he would begin gagging (he has a fundoplication so can't vomit), and crying, then he would go limp, if I moved at all he would start the crying and gagging again, vomiting through his tube. He would be pale with a cold sweat and very limp. Dylan also has trouble with constipation / megacolon and I believe the constipation and abdominal migraines are related. Hope you find some answers soon and can avoid surgery!!!!!! Kim Lauger ---------- > >To: CHARGE >Subject: A frustrating mystery >Date: Sun, Oct 20, 2002, 5:46 AM > > Dear Group, > > I sent a message about Chandra possibly needing a G-tube. I would > like your help with suggestions about why she might be losing weight > as well. > As with most CHARGE children, Chandra is growing slowly. She is > 3 years and 2 months old and had reached nearly 23 pounds before she > began to lose weight. She is now a under 21 pounds. She has never > had a big appetite, but she was following her own gradual growth > curve for the most part. At the beginning of the summer, she began > to eat less than her average each day. She would eat 1/2 to 3/4 of > her normal amount most days, but a normal amount a few days a week. > This started a very slow, gradual decline in her weigh and she lost a > few ounces over the summer. Her doctor was not concerned, but > suggested we increase the calories in her food, which we did. We > didn't weigh her often enough to see if that helped. > By September, things took a turn for the worse. In early > September, Chandra began crying and screaming for 6 days straight. > She would cry for hours, then calm down for a period, they cry > again. At times she was screaming as though she had gotten her hand > slammed in a door or something. She refused to eat anything for a > day and 1/2, drank very little and did not sleep well at all. We > thought it might be gas, stomach cramps, constipation, but the > pediatrician could find nothing. We brought her to a > gastroenterologist and she found nothing during a routine > examination. The pediatrician suspected a urniary tract infection, > but could not get enough urine to test, so she said to watch Chandra > closely and see what happened. > After the 6 days of crying, eating little or nothing, and > getting little sleep, Chandra was back to her normal cheerful self. > We thought it was over. One week later, she started again. She > cried for hours, refused to eat, slept poorly, all the symptoms > again. The pediatrician suspected an ear infection, though her ears > seemed clear. We gave her a 10 day course of antibiotics. Four days > after she started them she calmed down, was happy and eating okay, > then on the day of the last dose she began round 3. She went on > crying, not eating, and sleeping poorly for 5 days, though this time > she seemed to be in less pain. She came out of it and was happy and > eating again for a week until this past Monday night when round 4 > began. This time as well she seems fussy and upset but not in real > pain. She is still fussing this morning. Yesterday she began eating > very well, then threw up in the afternoon and did not eat again the > rest of the day. She has not vomited much at all during these > episodes. She stayed up past midnight, but finally slept okay until > around 7:00 am. > This past Tuesday, we had an endoscopy done to check for ulcers > or other problems in her esophagus or stomach. Nothing was visible, > but we are awaiting the results of a biopsy. The gastroenterologist > suggested we consult a neurologist. We are also looking into food > allergies, though we have not changed her diet for over a year, and > we are going to have an endocrinologist check her hormones. > All these tests will take a while to schedule and run, and we > can't let her keep dropping weight so fast in the mean time. It is > obvious to us that something is causing her great distress and this > makes her stop eating which leads to the weight loss. If we find out > what is causing her to be so upset, she would eat again and avoid the > G-tube. More importantly, we want to find out what is causing her so > much distress. It is very difficult to watch your child suffer day > after day when you can do nothing but hold her and comfort her. We > don't want to get her a G-tube only to have her continue crying > periodically for a week straight. We are hoping someone has had a > similar experience and can help us point the doctors in the right > direction. Any help you can give would be appreciated. > Sorry for going on so long. > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Kim, I agree, Ellen has also had lots of bowel stoppages which haven't shown up, for which she has ultimately required surgery. Knowing what I kow now, I'd avoid bowel surgery if at all possible as it can really complicate things later. Regards, Marea Howe A frustrating mystery > >Date: Sun, Oct 20, 2002, 5:46 AM > > > > > Dear Group, > > > > I sent a message about Chandra possibly needing a G-tube. I would > > like your help with suggestions about why she might be losing weight > > as well. > > As with most CHARGE children, Chandra is growing slowly. She is > > 3 years and 2 months old and had reached nearly 23 pounds before she > > began to lose weight. She is now a under 21 pounds. She has never > > had a big appetite, but she was following her own gradual growth > > curve for the most part. At the beginning of the summer, she began > > to eat less than her average each day. She would eat 1/2 to 3/4 of > > her normal amount most days, but a normal amount a few days a week. > > This started a very slow, gradual decline in her weigh and she lost a > > few ounces over the summer. Her doctor was not concerned, but > > suggested we increase the calories in her food, which we did. We > > didn't weigh her often enough to see if that helped. > > By September, things took a turn for the worse. In early > > September, Chandra began crying and screaming for 6 days straight. > > She would cry for hours, then calm down for a period, they cry > > again. At times she was screaming as though she had gotten her hand > > slammed in a door or something. She refused to eat anything for a > > day and 1/2, drank very little and did not sleep well at all. We > > thought it might be gas, stomach cramps, constipation, but the > > pediatrician could find nothing. We brought her to a > > gastroenterologist and she found nothing during a routine > > examination. The pediatrician suspected a urniary tract infection, > > but could not get enough urine to test, so she said to watch Chandra > > closely and see what happened. > > After the 6 days of crying, eating little or nothing, and > > getting little sleep, Chandra was back to her normal cheerful self. > > We thought it was over. One week later, she started again. She > > cried for hours, refused to eat, slept poorly, all the symptoms > > again. The pediatrician suspected an ear infection, though her ears > > seemed clear. We gave her a 10 day course of antibiotics. Four days > > after she started them she calmed down, was happy and eating okay, > > then on the day of the last dose she began round 3. She went on > > crying, not eating, and sleeping poorly for 5 days, though this time > > she seemed to be in less pain. She came out of it and was happy and > > eating again for a week until this past Monday night when round 4 > > began. This time as well she seems fussy and upset but not in real > > pain. She is still fussing this morning. Yesterday she began eating > > very well, then threw up in the afternoon and did not eat again the > > rest of the day. She has not vomited much at all during these > > episodes. She stayed up past midnight, but finally slept okay until > > around 7:00 am. > > This past Tuesday, we had an endoscopy done to check for ulcers > > or other problems in her esophagus or stomach. Nothing was visible, > > but we are awaiting the results of a biopsy. The gastroenterologist > > suggested we consult a neurologist. We are also looking into food > > allergies, though we have not changed her diet for over a year, and > > we are going to have an endocrinologist check her hormones. > > All these tests will take a while to schedule and run, and we > > can't let her keep dropping weight so fast in the mean time. It is > > obvious to us that something is causing her great distress and this > > makes her stop eating which leads to the weight loss. If we find out > > what is causing her to be so upset, she would eat again and avoid the > > G-tube. More importantly, we want to find out what is causing her so > > much distress. It is very difficult to watch your child suffer day > > after day when you can do nothing but hold her and comfort her. We > > don't want to get her a G-tube only to have her continue crying > > periodically for a week straight. We are hoping someone has had a > > similar experience and can help us point the doctors in the right > > direction. Any help you can give would be appreciated. > > Sorry for going on so long. > > > > > > > > > > > > Membership of this email support groups does not constitute membership in > > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Kim, I agree, Ellen has also had lots of bowel stoppages which haven't shown up, for which she has ultimately required surgery. Knowing what I kow now, I'd avoid bowel surgery if at all possible as it can really complicate things later. Regards, Marea Howe A frustrating mystery > >Date: Sun, Oct 20, 2002, 5:46 AM > > > > > Dear Group, > > > > I sent a message about Chandra possibly needing a G-tube. I would > > like your help with suggestions about why she might be losing weight > > as well. > > As with most CHARGE children, Chandra is growing slowly. She is > > 3 years and 2 months old and had reached nearly 23 pounds before she > > began to lose weight. She is now a under 21 pounds. She has never > > had a big appetite, but she was following her own gradual growth > > curve for the most part. At the beginning of the summer, she began > > to eat less than her average each day. She would eat 1/2 to 3/4 of > > her normal amount most days, but a normal amount a few days a week. > > This started a very slow, gradual decline in her weigh and she lost a > > few ounces over the summer. Her doctor was not concerned, but > > suggested we increase the calories in her food, which we did. We > > didn't weigh her often enough to see if that helped. > > By September, things took a turn for the worse. In early > > September, Chandra began crying and screaming for 6 days straight. > > She would cry for hours, then calm down for a period, they cry > > again. At times she was screaming as though she had gotten her hand > > slammed in a door or something. She refused to eat anything for a > > day and 1/2, drank very little and did not sleep well at all. We > > thought it might be gas, stomach cramps, constipation, but the > > pediatrician could find nothing. We brought her to a > > gastroenterologist and she found nothing during a routine > > examination. The pediatrician suspected a urniary tract infection, > > but could not get enough urine to test, so she said to watch Chandra > > closely and see what happened. > > After the 6 days of crying, eating little or nothing, and > > getting little sleep, Chandra was back to her normal cheerful self. > > We thought it was over. One week later, she started again. She > > cried for hours, refused to eat, slept poorly, all the symptoms > > again. The pediatrician suspected an ear infection, though her ears > > seemed clear. We gave her a 10 day course of antibiotics. Four days > > after she started them she calmed down, was happy and eating okay, > > then on the day of the last dose she began round 3. She went on > > crying, not eating, and sleeping poorly for 5 days, though this time > > she seemed to be in less pain. She came out of it and was happy and > > eating again for a week until this past Monday night when round 4 > > began. This time as well she seems fussy and upset but not in real > > pain. She is still fussing this morning. Yesterday she began eating > > very well, then threw up in the afternoon and did not eat again the > > rest of the day. She has not vomited much at all during these > > episodes. She stayed up past midnight, but finally slept okay until > > around 7:00 am. > > This past Tuesday, we had an endoscopy done to check for ulcers > > or other problems in her esophagus or stomach. Nothing was visible, > > but we are awaiting the results of a biopsy. The gastroenterologist > > suggested we consult a neurologist. We are also looking into food > > allergies, though we have not changed her diet for over a year, and > > we are going to have an endocrinologist check her hormones. > > All these tests will take a while to schedule and run, and we > > can't let her keep dropping weight so fast in the mean time. It is > > obvious to us that something is causing her great distress and this > > makes her stop eating which leads to the weight loss. If we find out > > what is causing her to be so upset, she would eat again and avoid the > > G-tube. More importantly, we want to find out what is causing her so > > much distress. It is very difficult to watch your child suffer day > > after day when you can do nothing but hold her and comfort her. We > > don't want to get her a G-tube only to have her continue crying > > periodically for a week straight. We are hoping someone has had a > > similar experience and can help us point the doctors in the right > > direction. Any help you can give would be appreciated. > > Sorry for going on so long. > > > > > > > > > > > > Membership of this email support groups does not constitute membership in > > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
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