Guest guest Posted August 7, 2006 Report Posted August 7, 2006 Mason's GI issues weren't always as bad as they had been in 2003. That was by far his worst year ... and sigmoid volvulus is also rare. My son's intestine had a very easy time twisting because he was born with a redundant colon ... meaning he had more than he should have. At 2 1/2 years old, he had what a grown adult should have which is about 5 feet of intestine; whereas he should have only had about 2 1/2 feet ... But before that, he generally fluctuated between constipation and diarrhea. The diarrhea didn't always come with his episodes of fever either. He also used to get a terrible rash on his bottom ... I know exactly what you're talking about when you say they look like raised welts! He hated having his diaper changed and would cry as soon as the diarrhea came out because it was so toxic on his skin. I remember one episode was so bad that I had actually gone through 60+ diapers in one day! You could hear him from another room when it would come out ... sounded like an old faucet being turned on and shooting out! There are still times when his intestinal issues are worse than other times. Sometime he has bellyache that comes and goes. I don't think his GI issues are as severe as some of the children on this listserve either .... except for back in 2003, and like I said that was a rare thing going on. But though he's not as severe, he still has these issues going on and I feel so sorry he has to deal with it all. The acid reflux too will be worse at times, and then can aggravate the asthma or vice versa. It sorta all can go hand in hand. Cuz then when he's really constipated (even with being on Miralax) ... that can aggravate the acid reflux, etc. Mason also had an endoscopy and colonoscopy done late last year to rule out the IBD's (ulcerative colitis and Crohn's) ... thankfully they were ruled out, but the GI isn't convinced that somewhere down the road, he will not have an IBD. But we are trying to keep the faith. We have a really wonderful GI/Nutritionist at CHOP in PA that is doing his best to try and make Mason's life better, to lessen the severity of his symptoms by trying different things and in a few months may be inserting a feeding tube to help ease the weight issues, and by now working with NIH to hopefully find a true diagnosis for our son and get a better treatment plan in place. We know its going to take years ... but there's not much we can do about it, other than keep on praying. This little boy of ours is such a little Trooper ... like so many of our kids here on this listserve. These kids amaze me ... they make me whine less when I'm not feeling the greatest, because they make me realize how they look at life is so different than what most people look at life ... we really learn a lot from what our son is going through, though I wish he didn't have this awful disease. I hope and pray you soon get your date to go to the NIH and they are able to help your daughter too! They really are wonderful people there. And the Children's Inn is an awesome place for the kids! Take care. Heidi > Hi Heidi Thank you for your response and concern. This is why I love this group!!! My daughter is just turning two in less than a week. She has only had GI issues during the last two months roughly. SHe has had fevers since before her first birthday. They had diagnosed her at my pediatrician with a strong rotovirus when they started because it had preceeded a fever episode and it was a " new " symptom for us. This was two months ago. She is still dealing with recurrent diarrhea and diaper rash that is very strange in appearance (it can looks like raised welts). She also got these little faint marks on her bottom that don't go away. We had been to the rheumatologist since and he called the marks little bruises but I don't think that is quite what they looked like. He didn't say much about the GI stuff other than it did get him moving toward a diagnosis other thatn . We are in that process right now. We did submit paperwork to NIH two months ago and I just emailed Pl aas and she indicated they are not even reviewing new cases at this time and I should get back to her in a month. I am not sure what that means but I think we may proceed with genetic testing out of our own pockets at this time. I would like answers. I do understand that there are some GI issues that come with some of the other periodic fever syndromes but they seem much more severe than just teh intermittant diarrhea and rashes that we deal with. I don't even think they compare at times so I am not totally convinced that they are related since it is new to her and they seem to come and go not necessarily with the fever episodes. Sometimes the GI stuff comes before the fever, sometimes after and sometimes we get GI but no fever. I am so confused!!!! I am so sad to hear of everything your son is going through and in turn, your family is going through. I know how hard it is for us to deal with what we have to, but I cannot imagine the decisions you have in front of you. Thank you for your input and let me know what you think. Did your son's start out mild and get worse or were they always that severe? I wish you healthier days! Lori Mom to four daughters including (2 years) ?PFS Quote
Guest guest Posted August 7, 2006 Report Posted August 7, 2006 > Thank you I so enjoy this group because I can finally have someone talk and I can say - " Yeah I go through that too " I don't meet too many other moms that I have such things in common with any more. I completely undersand about the diaper thing. Any more when Sam has an episode of the diarrhea and I ask her if she needs a diaper change she just cries right then and there. And it doesn't stop until long after the change is over. I feel awful for her. They can coem and go much quicker thatn typical diaper rashes too I have found. I don't know if that is your experience or not. Or at times they seem to saty much longer. It is hard to predict. Plus they will also at times go down onto her legs. She walks like she has been on horse all day. It is very sad. Well thank you for sharing your story with me. It does make me not only feel like there are others out there who go through what I go through but makes me more anxious to get into NIH. I jsut wish I could hear something. The gentic stuff through my doctor will take awhile and may end up being very costly. And who know if it will give any answers of not! I hope you and Mason health and happiness and thanks again! Lori Mom to Sam ?PFS > From: heidikopp@... > Date: 2006/08/07 Mon AM 10:31:05 EDT > > Subject: GI issues and > > Mason's GI issues weren't always as bad as they had been in 2003. That > was by far his worst year ... and sigmoid volvulus is also rare. My son's > intestine had a very easy time twisting because he was born with a > redundant colon ... meaning he had more than he should have. At 2 1/2 > years old, he had what a grown adult should have which is about 5 feet of > intestine; whereas he should have only had about 2 1/2 feet ... > > But before that, he generally fluctuated between constipation and > diarrhea. The diarrhea didn't always come with his episodes of fever > either. He also used to get a terrible rash on his bottom ... I know > exactly what you're talking about when you say they look like raised > welts! He hated having his diaper changed and would cry as soon as the > diarrhea came out because it was so toxic on his skin. I remember one > episode was so bad that I had actually gone through 60+ diapers in one > day! You could hear him from another room when it would come out ... > sounded like an old faucet being turned on and shooting out! > > There are still times when his intestinal issues are worse than other > times. Sometime he has bellyache that comes and goes. I don't think his > GI issues are as severe as some of the children on this listserve either > ... except for back in 2003, and like I said that was a rare thing going > on. But though he's not as severe, he still has these issues going on and > I feel so sorry he has to deal with it all. > > The acid reflux too will be worse at times, and then can aggravate the > asthma or vice versa. It sorta all can go hand in hand. Cuz then when > he's really constipated (even with being on Miralax) ... that can > aggravate the acid reflux, etc. Mason also had an endoscopy and > colonoscopy done late last year to rule out the IBD's (ulcerative colitis > and Crohn's) ... thankfully they were ruled out, but the GI isn't > convinced that somewhere down the road, he will not have an IBD. > > But we are trying to keep the faith. We have a really wonderful > GI/Nutritionist at CHOP in PA that is doing his best to try and make > Mason's life better, to lessen the severity of his symptoms by trying > different things and in a few months may be inserting a feeding tube to > help ease the weight issues, and by now working with NIH to hopefully find > a true diagnosis for our son and get a better treatment plan in place. We > know its going to take years ... but there's not much we can do about it, > other than keep on praying. This little boy of ours is such a little > Trooper ... like so many of our kids here on this listserve. These kids > amaze me ... they make me whine less when I'm not feeling the greatest, > because they make me realize how they look at life is so different than > what most people look at life ... we really learn a lot from what our son > is going through, though I wish he didn't have this awful disease. > > I hope and pray you soon get your date to go to the NIH and they are able > to help your daughter too! They really are wonderful people there. And > the Children's Inn is an awesome place for the kids! > > Take care. > Heidi > > > Hi Heidi > Thank you for your response and concern. This is why I love this group!!! > My daughter is just turning two in less than a week. She has only had GI > issues during the last two months roughly. SHe has had fevers since before > her first birthday. They had diagnosed her at my pediatrician with a > strong rotovirus when they started because it had preceeded a fever > episode and it was a " new " symptom for us. This was two months ago. She is > still dealing with recurrent diarrhea and diaper rash that is very strange > in appearance (it can looks like raised welts). She also got these little > faint marks on her bottom that don't go away. We had been to the > rheumatologist since and he called the marks little bruises but I don't > think that is quite what they looked like. He didn't say much about the GI > stuff other than it did get him moving toward a diagnosis other thatn > . We are in that process right now. We did submit paperwork to NIH > two months ago and I just emailed Pl aas and she indicated they are > not even reviewing new cases at this time and I should get back to her in > a month. I am not sure what that means but I think we may proceed with > genetic testing out of our own pockets at this time. I would like answers. > I do understand that there are some GI issues that come with some of the > other periodic fever syndromes but they seem much more severe than just > teh intermittant diarrhea and rashes that we deal with. I don't even think > they compare at times so I am not totally convinced that they are related > since it is new to her and they seem to come and go not necessarily with > the fever episodes. Sometimes the GI stuff comes before the fever, > sometimes after and sometimes we get GI but no fever. > I am so confused!!!! > I am so sad to hear of everything your son is going through and in turn, > your family is going through. I know how hard it is for us to deal with > what we have to, but I cannot imagine the decisions you have in front of > you. > Thank you for your input and let me know what you think. Did your son's > start out mild and get worse or were they always that severe? I wish you > healthier days! > Lori > Mom to four daughters including (2 years) ?PFS > > > > > Quote
Guest guest Posted August 7, 2006 Report Posted August 7, 2006 Hi Lori, we missed you at the run...I am sure we'll meet soon!!!! Take care. Have a great day. Lori --- slsjasrodgers@... wrote: > > > Thank you > I so enjoy this group because I can finally have > someone talk and I can say - " Yeah I go through that > too " I don't meet too many other moms that I have > such things in common with any more. > I completely undersand about the diaper thing. Any > more when Sam has an episode of the diarrhea and I > ask her if she needs a diaper change she just cries > right then and there. And it doesn't stop until long > after the change is over. I feel awful for her. They > can coem and go much quicker thatn typical diaper > rashes too I have found. I don't know if that is > your experience or not. Or at times they seem to > saty much longer. It is hard to predict. Plus they > will also at times go down onto her legs. She walks > like she has been on horse all day. It is very sad. > Well thank you for sharing your story with me. It > does make me not only feel like there are others out > there who go through what I go through but makes me > more anxious to get into NIH. I jsut wish I could > hear something. The gentic stuff through my doctor > will take awhile and may end up being very costly. > And who know if it will give any answers of not! > I hope you and Mason health and happiness and thanks > again! > Lori > Mom to Sam ?PFS > > From: heidikopp@... > > Date: 2006/08/07 Mon AM 10:31:05 EDT > > > > Subject: GI issues and > > > > Mason's GI issues weren't always as bad as they > had been in 2003. That > > was by far his worst year ... and sigmoid volvulus > is also rare. My son's > > intestine had a very easy time twisting because he > was born with a > > redundant colon ... meaning he had more than he > should have. At 2 1/2 > > years old, he had what a grown adult should have > which is about 5 feet of > > intestine; whereas he should have only had about 2 > 1/2 feet ... > > > > But before that, he generally fluctuated between > constipation and > > diarrhea. The diarrhea didn't always come with > his episodes of fever > > either. He also used to get a terrible rash on > his bottom ... I know > > exactly what you're talking about when you say > they look like raised > > welts! He hated having his diaper changed and > would cry as soon as the > > diarrhea came out because it was so toxic on his > skin. I remember one > > episode was so bad that I had actually gone > through 60+ diapers in one > > day! You could hear him from another room when it > would come out ... > > sounded like an old faucet being turned on and > shooting out! > > > > There are still times when his intestinal issues > are worse than other > > times. Sometime he has bellyache that comes and > goes. I don't think his > > GI issues are as severe as some of the children on > this listserve either > > ... except for back in 2003, and like I said that > was a rare thing going > > on. But though he's not as severe, he still has > these issues going on and > > I feel so sorry he has to deal with it all. > > > > The acid reflux too will be worse at times, and > then can aggravate the > > asthma or vice versa. It sorta all can go hand in > hand. Cuz then when > > he's really constipated (even with being on > Miralax) ... that can > > aggravate the acid reflux, etc. Mason also had an > endoscopy and > > colonoscopy done late last year to rule out the > IBD's (ulcerative colitis > > and Crohn's) ... thankfully they were ruled out, > but the GI isn't > > convinced that somewhere down the road, he will > not have an IBD. > > > > But we are trying to keep the faith. We have a > really wonderful > > GI/Nutritionist at CHOP in PA that is doing his > best to try and make > > Mason's life better, to lessen the severity of his > symptoms by trying > > different things and in a few months may be > inserting a feeding tube to > > help ease the weight issues, and by now working > with NIH to hopefully find > > a true diagnosis for our son and get a better > treatment plan in place. We > > know its going to take years ... but there's not > much we can do about it, > > other than keep on praying. This little boy of > ours is such a little > > Trooper ... like so many of our kids here on this > listserve. These kids > > amaze me ... they make me whine less when I'm not > feeling the greatest, > > because they make me realize how they look at life > is so different than > > what most people look at life ... we really learn > a lot from what our son > > is going through, though I wish he didn't have > this awful disease. > > > > I hope and pray you soon get your date to go to > the NIH and they are able > > to help your daughter too! They really are > wonderful people there. And > > the Children's Inn is an awesome place for the > kids! > > > > Take care. > > Heidi > > > > > Hi Heidi > > Thank you for your response and concern. This is > why I love this group!!! > > My daughter is just turning two in less than a > week. She has only had GI > > issues during the last two months roughly. SHe has > had fevers since before > > her first birthday. They had diagnosed her at my > pediatrician with a > > strong rotovirus when they started because it had > preceeded a fever > > episode and it was a " new " symptom for us. This > was two months ago. She is > > still dealing with recurrent diarrhea and diaper > rash that is very strange > > in appearance (it can looks like raised welts). > She also got these little > > faint marks on her bottom that don't go away. We > had been to the > > rheumatologist since and he called the marks > little bruises but I don't > > think that is quite what they looked like. He > didn't say much about the GI > > stuff other than it did get him moving toward a > diagnosis other thatn > > . We are in that process right now. We did > submit paperwork to NIH > > two months ago and I just emailed Pl aas > and she indicated they are > > not even reviewing new cases at this time and I > should get back to her in > > a month. I am not sure what that means but I think > we may proceed with > > genetic testing out of our own pockets at this > time. I would like answers. > > I do understand that there are some GI issues that > come with some of the > > other periodic fever syndromes but they seem much > more severe than just > > teh intermittant diarrhea and rashes that we deal > with. I don't even think > > they compare at times so I am not totally > convinced that they are related > > since it is new to her and they seem to come and > go not necessarily with > > the fever episodes. Sometimes the GI stuff comes > before the fever, > > sometimes after and sometimes we get GI but no > fever. > > I am so confused!!!! > > I am so sad to hear of everything your son is > going through and in turn, > > your family is going through. I know how hard it > is for us to deal with > > what we have to, but I cannot imagine the > decisions you have in front of > > you. > > Thank you for your input and let me know what you > think. Did your son's > > start out mild and get worse or were they always > that severe? I wish you > > healthier days! > > Lori > > Mom to four daughters including (2 years) > ?PFS > > > > > > > > > > > > === message truncated === __________________________________________________ Quote
Guest guest Posted August 7, 2006 Report Posted August 7, 2006 If you are planning to attend the conference and need to stay, be sure to make your reservation by Aug. 16th to get the discounted room rate!!! If anyone is planning to attend the conference, please forward mailing addresses so that I can send out a registration form. Thanks! --- slsjasrodgers@... wrote: > > > Hi Lori > I am so sorry about missing the run but Sam had one > of her episodes and a bout with this GI stuff at > that time. I would have been there as a single mom > with the four girls (one of which probably would > have need a LOT of attention) so I just knew I > couldn't do it. I hope it was a big success!!! > I will be contacting you about the upcoming > conference very soon. I have already planned on > being there but again my hubby has drill that > weekend. Part of being a wife of a National Guard > soldier - yuck! I hope all is well there and that > Nino is doing well! > Talk to you soon! > Lori > > > > From: Lori Todaro <loritodaro@...> > > Date: 2006/08/07 Mon PM 12:26:00 EDT > > > > Subject: Re: GI issues and > > > > Hi Lori, we missed you at the run...I am sure > we'll > > meet soon!!!! > > Take care. Have a great day. > > Lori > > > > --- slsjasrodgers@... wrote: > > > > > > > > > Thank you > > > I so enjoy this group because I can finally have > > > someone talk and I can say - " Yeah I go through > that > > > too " I don't meet too many other moms that I > have > > > such things in common with any more. > > > I completely undersand about the diaper thing. > Any > > > more when Sam has an episode of the diarrhea and > I > > > ask her if she needs a diaper change she just > cries > > > right then and there. And it doesn't stop until > long > > > after the change is over. I feel awful for her. > They > > > can coem and go much quicker thatn typical > diaper > > > rashes too I have found. I don't know if that is > > > your experience or not. Or at times they seem to > > > saty much longer. It is hard to predict. Plus > they > > > will also at times go down onto her legs. She > walks > > > like she has been on horse all day. It is very > sad. > > > Well thank you for sharing your story with me. > It > > > does make me not only feel like there are others > out > > > there who go through what I go through but makes > me > > > more anxious to get into NIH. I jsut wish I > could > > > hear something. The gentic stuff through my > doctor > > > will take awhile and may end up being very > costly. > > > And who know if it will give any answers of not! > > > I hope you and Mason health and happiness and > thanks > > > again! > > > Lori > > > Mom to Sam ?PFS > > > > From: heidikopp@... > > > > Date: 2006/08/07 Mon AM 10:31:05 EDT > > > > > > > > Subject: GI issues and > > > > > > > > Mason's GI issues weren't always as bad as > they > > > had been in 2003. That > > > > was by far his worst year ... and sigmoid > volvulus > > > is also rare. My son's > > > > intestine had a very easy time twisting > because he > > > was born with a > > > > redundant colon ... meaning he had more than > he > > > should have. At 2 1/2 > > > > years old, he had what a grown adult should > have > > > which is about 5 feet of > > > > intestine; whereas he should have only had > about 2 > > > 1/2 feet ... > > > > > > > > But before that, he generally fluctuated > between > > > constipation and > > > > diarrhea. The diarrhea didn't always come > with > > > his episodes of fever > > > > either. He also used to get a terrible rash > on > > > his bottom ... I know > > > > exactly what you're talking about when you say > > > they look like raised > > > > welts! He hated having his diaper changed and > > > would cry as soon as the > > > > diarrhea came out because it was so toxic on > his > > > skin. I remember one > > > > episode was so bad that I had actually gone > > > through 60+ diapers in one > > > > day! You could hear him from another room > when it > > > would come out ... > > > > sounded like an old faucet being turned on and > > > shooting out! > > > > > > > > There are still times when his intestinal > issues > > > are worse than other > > > > times. Sometime he has bellyache that comes > and > > > goes. I don't think his > > > > GI issues are as severe as some of the > children on > > > this listserve either > > > > ... except for back in 2003, and like I said > that > > > was a rare thing going > > > > on. But though he's not as severe, he still > has > > > these issues going on and > > > > I feel so sorry he has to deal with it all. > > > > > > > > The acid reflux too will be worse at times, > and > > > then can aggravate the > > > > asthma or vice versa. It sorta all can go > hand in > > > hand. Cuz then when > > > > he's really constipated (even with being on > > > Miralax) ... that can > > > > aggravate the acid reflux, etc. Mason also > had an > > > endoscopy and > > > > colonoscopy done late last year to rule out > the > > > IBD's (ulcerative colitis > > > > and Crohn's) ... thankfully they were ruled > out, > > > but the GI isn't > > > > convinced that somewhere down the road, he > will > > > not have an IBD. > > > > > > > > But we are trying to keep the faith. We have > a > > > really wonderful > > > > GI/Nutritionist at CHOP in PA that is doing > his > > > best to try and make > > > > Mason's life better, to lessen the severity of > his > > > symptoms by trying > > > > different things and in a few months may be > > > inserting a feeding tube to > > > > help ease the weight issues, and by now > working > > > with NIH to hopefully find > > > > a true diagnosis for our son and get a better > > > treatment plan in place. We > > > > know its going to take years ... but there's > not > > > much we can do about it, > > > > other than keep on praying. This little boy > of > > > ours is such a little > > > > Trooper ... like so many of our kids here on > this > > > listserve. These kids > > > > amaze me ... they make me whine less when I'm > not > > > feeling the greatest, > > > > because they make me realize how they look at > life > > > is so different than > > > > what most people look at life ... we really > learn > > > a lot from what our son > > > > is going through, though I wish he didn't have > > > this awful disease. > > > > > > > > I hope and pray you soon get your date to go > to > === message truncated === __________________________________________________ Quote
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