Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 - Im not sure about how you will give birth, however, some dr's will do a tummy tuck and a csection at the same time... so theres something to ask your ob! ~Ginny, Proud Mommy of Wally and y Born 10-19-03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 - Im not sure about how you will give birth, however, some dr's will do a tummy tuck and a csection at the same time... so theres something to ask your ob! ~Ginny, Proud Mommy of Wally and y Born 10-19-03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 I just had a baby boy 7 weeks ago vaginally and have a large hernia in the upper right part of my incision and it did not bother it at all. I had no problems with it while pregnant either. Good luck and conrgatulations on your new baby. God Bless, Robin Wife to Pup for 15 years Mommy to- and (twin boys, 8 years) and Daughter Madison- age 5 1/2 and new Mommy to- Emerson Roger born July 28, 2004 at 4:11 am 8lbs 7 oz, 20 1/2 inches long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 I just had a baby boy 7 weeks ago vaginally and have a large hernia in the upper right part of my incision and it did not bother it at all. I had no problems with it while pregnant either. Good luck and conrgatulations on your new baby. God Bless, Robin Wife to Pup for 15 years Mommy to- and (twin boys, 8 years) and Daughter Madison- age 5 1/2 and new Mommy to- Emerson Roger born July 28, 2004 at 4:11 am 8lbs 7 oz, 20 1/2 inches long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 aside from the digestive issues, he soudns similar to my son, who is undergoing testing... is 23 months old, and while he suffered from reflux early on, it cleared up by 12 months... He does have constipation, blueing of hands feet, and mouth (especially with fevers), slow growth, severe language delay (he says 2 words, however he signs ALOT... have you tried teaching Isaiah some basic signs? BRandon picked them up very quickly, they are attributing his language delay to weak oral muscles). As for blood and urine results, most of the mito related ones are pretty specific, so wouldnt have been ordered unless they suspected mito... some of them are Carnatine levels, CK enzymes, lactic acid, palmitate oxidation. The rule of thumb for suspecting mito is " A " common disease " has atypical features that set it apart from the pack. " (www.umdf.org) and it sounds like your son fits this profile pretty well... www.umdf.org has ALOT of information... There are so many different mito disorders and all have different 'classic' symptoms, so its difficutl to say if your son has it from his symptoms... What sorts of tests are they planning? has he had an MRI? I hope you get an answer soon!! had a muscle biopsy done a month ago, and we are just waiting to hear the results now... Keely > > > Hi everyone > > My son, Isaiah, is suspected of having a mito disorder. He is > currently 26 mos old. For the last 2 years, he has been being > treated for Eosinophilic Gastroenteritis (EG). They put him on a > formula called Neocate 1+ (that is the only thing he tolerates) and > GI wise he has done very well, however, other things have started to > occur such as him turning blue and having seizures. We finally got a > referral to a neurologist who is thinking this is mito not EG. I was > hoping that if I gave you a list of Isaiah's problems, someone could > tell me if it sounds like it could be a mito problem. > > -inability to tolerate any foods > -reflux > -severly delayed gastric emptying > -late milestones as an early infant (picked up around 8 mos old) > -periodic bluing of hands, feet, and face > -seizures > -poor reflexes > -poor endurance for physical activity > -poor growth > -delayed language aquisition > > Also, is there anything I can look for in his previous blood/urine > lab results that could guide me anywhere? > > Thank you > Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 aside from the digestive issues, he soudns similar to my son, who is undergoing testing... is 23 months old, and while he suffered from reflux early on, it cleared up by 12 months... He does have constipation, blueing of hands feet, and mouth (especially with fevers), slow growth, severe language delay (he says 2 words, however he signs ALOT... have you tried teaching Isaiah some basic signs? BRandon picked them up very quickly, they are attributing his language delay to weak oral muscles). As for blood and urine results, most of the mito related ones are pretty specific, so wouldnt have been ordered unless they suspected mito... some of them are Carnatine levels, CK enzymes, lactic acid, palmitate oxidation. The rule of thumb for suspecting mito is " A " common disease " has atypical features that set it apart from the pack. " (www.umdf.org) and it sounds like your son fits this profile pretty well... www.umdf.org has ALOT of information... There are so many different mito disorders and all have different 'classic' symptoms, so its difficutl to say if your son has it from his symptoms... What sorts of tests are they planning? has he had an MRI? I hope you get an answer soon!! had a muscle biopsy done a month ago, and we are just waiting to hear the results now... Keely > > > Hi everyone > > My son, Isaiah, is suspected of having a mito disorder. He is > currently 26 mos old. For the last 2 years, he has been being > treated for Eosinophilic Gastroenteritis (EG). They put him on a > formula called Neocate 1+ (that is the only thing he tolerates) and > GI wise he has done very well, however, other things have started to > occur such as him turning blue and having seizures. We finally got a > referral to a neurologist who is thinking this is mito not EG. I was > hoping that if I gave you a list of Isaiah's problems, someone could > tell me if it sounds like it could be a mito problem. > > -inability to tolerate any foods > -reflux > -severly delayed gastric emptying > -late milestones as an early infant (picked up around 8 mos old) > -periodic bluing of hands, feet, and face > -seizures > -poor reflexes > -poor endurance for physical activity > -poor growth > -delayed language aquisition > > Also, is there anything I can look for in his previous blood/urine > lab results that could guide me anywhere? > > Thank you > Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Hi Keely Glad to hear that is using sign. Isaiah started off with sign at just under 1 year, by the time he turned 2 he dropped most of it for single words. He just uses it now when he gets frustrated or doesn't know how to say a word. They also attributed Isaiah's language delay to his week oral motor muscles. >What sorts of tests are they planning? has he had an MRI? We have an EEG set up for Dec 13th, they are currently scheduling an MRI, and we just had blood/urine work for: chromosomes, carbohydrate deficient glycoprotein, plasma amino acids, urine organic acids, CK, CMP, urine PH and urine electrolytes. Thanks for the info and I hope you get 's muscle biopsy results soon! Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Hi Keely Glad to hear that is using sign. Isaiah started off with sign at just under 1 year, by the time he turned 2 he dropped most of it for single words. He just uses it now when he gets frustrated or doesn't know how to say a word. They also attributed Isaiah's language delay to his week oral motor muscles. >What sorts of tests are they planning? has he had an MRI? We have an EEG set up for Dec 13th, they are currently scheduling an MRI, and we just had blood/urine work for: chromosomes, carbohydrate deficient glycoprotein, plasma amino acids, urine organic acids, CK, CMP, urine PH and urine electrolytes. Thanks for the info and I hope you get 's muscle biopsy results soon! Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Dear Willow, I am so sorry to say this but the symptoms do very much sound like mito.My 2 girls had all the symptoms you mentioned except the seizures. Samya died 2 years ago of Leigh's and although she had never had a seizure, she had them constantly for the last 4 days of her life nonstop. Actually, they called it involuntary movements that came from brain deteriorations, so I guess that is different than a seizure. I have a 7 year old, Leanna with the same exact diagnosis. I can tell you that no labs ever pointed to mito for us definitively. In fact, that is why my girls never got diagnosed with mito until the last week of samya's life. The confirmation came from a mitochondrial DNA blood tesr, muscle and nerve biopsy and a brain mRI. Unfortunately, the biopsy and DNA teste were only done at the end while Samya was dying when the doctors got a clear picture of what possible mutation she had and knew what to look for. In so many mito patients, trying to find the mutation is like trying to find a needle in a haystack without any other evidence such as family history etc. Some mito patients get a clinical diagnosis with out ever finding the exact mutation> While Samya was dying literally, the only clue was the brain MRI which pointed to a mito form and an MRS. Be aware thoug, that the year before, she had an MRI in search of the mystery disease that she might have had that came back normal. Only after her symptoms were beyonf severe did it show up in an mRI. Leanna has had 2 MRI's so far and only one showed problems in the basal ganglia indicating mtio and that was when she was in the middle of a crisis and unable to walk, talk, etc. The MRS showed more information, also confirming her diagnosis. I guess in a weird way, leanna was luck that we found the exact mutation through Samya's biopsy and autopsy because it saved her from all of it. Leanna's diagnosis came through a blood mitochondrial DNA test after we knew exactly what mutation to look for. Leanna get plasma amino acid blood test and urine organic acids often. These sometime show abnormalities in mito kids, especially when they are very sick. I do not know if I helped or confused you more. I do know that mito is so complicated and there are so many varieties of form and symptoms that the best thing is to find a good mito specialist and go from there. I wish you luck.   Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 New with questions Hi everyone My son, Isaiah, is suspected of having a mito disorder. He is currently 26 mos old. For the last 2 years, he has been being treated for Eosinophilic Gastroenteritis (EG). They put him on a formula called Neocate 1+ (that is the only thing he tolerates) and GI wise he has done very well, however, other things have started to occur such as him turning blue and having seizures. We finally got a referral to a neurologist who is thinking this is mito not EG. I was hoping that if I gave you a list of Isaiah's problems, someone could tell me if it sounds like it could be a mito problem. -inability to tolerate any foods -reflux -severly delayed gastric emptying -late milestones as an early infant (picked up around 8 mos old) -periodic bluing of hands, feet, and face -seizures -poor reflexes -poor endurance for physical activity -poor growth -delayed language aquisition Also, is there anything I can look for in his previous blood/urine lab results that could guide me anywhere? Thank you Willow Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Dear Willow, I am so sorry to say this but the symptoms do very much sound like mito.My 2 girls had all the symptoms you mentioned except the seizures. Samya died 2 years ago of Leigh's and although she had never had a seizure, she had them constantly for the last 4 days of her life nonstop. Actually, they called it involuntary movements that came from brain deteriorations, so I guess that is different than a seizure. I have a 7 year old, Leanna with the same exact diagnosis. I can tell you that no labs ever pointed to mito for us definitively. In fact, that is why my girls never got diagnosed with mito until the last week of samya's life. The confirmation came from a mitochondrial DNA blood tesr, muscle and nerve biopsy and a brain mRI. Unfortunately, the biopsy and DNA teste were only done at the end while Samya was dying when the doctors got a clear picture of what possible mutation she had and knew what to look for. In so many mito patients, trying to find the mutation is like trying to find a needle in a haystack without any other evidence such as family history etc. Some mito patients get a clinical diagnosis with out ever finding the exact mutation> While Samya was dying literally, the only clue was the brain MRI which pointed to a mito form and an MRS. Be aware thoug, that the year before, she had an MRI in search of the mystery disease that she might have had that came back normal. Only after her symptoms were beyonf severe did it show up in an mRI. Leanna has had 2 MRI's so far and only one showed problems in the basal ganglia indicating mtio and that was when she was in the middle of a crisis and unable to walk, talk, etc. The MRS showed more information, also confirming her diagnosis. I guess in a weird way, leanna was luck that we found the exact mutation through Samya's biopsy and autopsy because it saved her from all of it. Leanna's diagnosis came through a blood mitochondrial DNA test after we knew exactly what mutation to look for. Leanna get plasma amino acid blood test and urine organic acids often. These sometime show abnormalities in mito kids, especially when they are very sick. I do not know if I helped or confused you more. I do know that mito is so complicated and there are so many varieties of form and symptoms that the best thing is to find a good mito specialist and go from there. I wish you luck.   Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 New with questions Hi everyone My son, Isaiah, is suspected of having a mito disorder. He is currently 26 mos old. For the last 2 years, he has been being treated for Eosinophilic Gastroenteritis (EG). They put him on a formula called Neocate 1+ (that is the only thing he tolerates) and GI wise he has done very well, however, other things have started to occur such as him turning blue and having seizures. We finally got a referral to a neurologist who is thinking this is mito not EG. I was hoping that if I gave you a list of Isaiah's problems, someone could tell me if it sounds like it could be a mito problem. -inability to tolerate any foods -reflux -severly delayed gastric emptying -late milestones as an early infant (picked up around 8 mos old) -periodic bluing of hands, feet, and face -seizures -poor reflexes -poor endurance for physical activity -poor growth -delayed language aquisition Also, is there anything I can look for in his previous blood/urine lab results that could guide me anywhere? Thank you Willow Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 My son has eosinophilia in his colon. It is causing GI bleeds. He also has clotting problems so this is NOT a good thing at all. I think that eosinophilia is not uncommon in mito. Eosinophilia can be a symptom of the disease and not the disease itself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 My son has eosinophilia in his colon. It is causing GI bleeds. He also has clotting problems so this is NOT a good thing at all. I think that eosinophilia is not uncommon in mito. Eosinophilia can be a symptom of the disease and not the disease itself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 My daughter Grace, is also two, and has a non specific form of mito. She began very similar to your son, with the GI symptoms. She went from being totally breastfed to Neocate. She does not have seizures (thankfully), but does have a variety of her own problems due to the mito. Are they planning a muscle biopsy for your son? The muscle biopsy confirmed her mito, but it was highly suspected before it was done. For her there was no specific blood test that showed mito, but many things were "off". For her her liver enzymes were really high (she has liver disease from the mito), and she has Carnitine Defficiency. I hope you get some more info from others. Best wishes Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 My daughter Grace, is also two, and has a non specific form of mito. She began very similar to your son, with the GI symptoms. She went from being totally breastfed to Neocate. She does not have seizures (thankfully), but does have a variety of her own problems due to the mito. Are they planning a muscle biopsy for your son? The muscle biopsy confirmed her mito, but it was highly suspected before it was done. For her there was no specific blood test that showed mito, but many things were "off". For her her liver enzymes were really high (she has liver disease from the mito), and she has Carnitine Defficiency. I hope you get some more info from others. Best wishes Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 Basically start a very bland (intro) and add foods slowly one at a time, several days apart. It can be trial and error. Keep a food diary and note any symptoms. Pecanbread.com has suggestions for stages of adding foods, It is for kids with ASD so it is non dairy. We can use legal SCD yogurt and some legal cheeses. It is a good guide. Welcome to SCD. There are many folks here who can help you along the way. Hope you feel better. PJ > > Hi everyone, > I was diagnosed with microscopic colitis in Feb of 2006. I was unable to tolerate the Asacol that was prescriped to me and in searching for answers on the internet, started a gluten-free diet with immediate results. I would have occasional flare ups if I didn't watch what I ate, but in all have been pretty healthy the last 4 years. > > Another flare up started in mid-December 2009 and has gotten progressively worse. I am now down to 111-113 lbs (normal weight is 118) and going to the bathroom up to 20 times a day. > I found the BTVC and SCD websites last week and have been doing my best to do the intro diet since. I couldn't find a yogurt maker locally, so had to order one online and just completed my first batch last night. > > Unfortunately, I am having another colonoscopy done tomorrow so am on the liquid diet today (I'm keeping it SCD legal). > > That's a little background on me, here are some questions: > When it seems nothing is helping, how do you know if you are reacting to a specific food? > > Is there anyone else here that has been diagnosed with MC that has had success with SCD? It isn't mentioned in the book or the websites. > > Thanks to anyone for your help/suggestions. > > Pegi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 Basically start a very bland (intro) and add foods slowly one at a time, several days apart. It can be trial and error. Keep a food diary and note any symptoms. Pecanbread.com has suggestions for stages of adding foods, It is for kids with ASD so it is non dairy. We can use legal SCD yogurt and some legal cheeses. It is a good guide. Welcome to SCD. There are many folks here who can help you along the way. Hope you feel better. PJ > > Hi everyone, > I was diagnosed with microscopic colitis in Feb of 2006. I was unable to tolerate the Asacol that was prescriped to me and in searching for answers on the internet, started a gluten-free diet with immediate results. I would have occasional flare ups if I didn't watch what I ate, but in all have been pretty healthy the last 4 years. > > Another flare up started in mid-December 2009 and has gotten progressively worse. I am now down to 111-113 lbs (normal weight is 118) and going to the bathroom up to 20 times a day. > I found the BTVC and SCD websites last week and have been doing my best to do the intro diet since. I couldn't find a yogurt maker locally, so had to order one online and just completed my first batch last night. > > Unfortunately, I am having another colonoscopy done tomorrow so am on the liquid diet today (I'm keeping it SCD legal). > > That's a little background on me, here are some questions: > When it seems nothing is helping, how do you know if you are reacting to a specific food? > > Is there anyone else here that has been diagnosed with MC that has had success with SCD? It isn't mentioned in the book or the websites. > > Thanks to anyone for your help/suggestions. > > Pegi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 Thanks for the suggestion. I will check that out. > > > > Hi everyone, > > I was diagnosed with microscopic colitis in Feb of 2006. I was unable to tolerate the Asacol that was prescriped to me and in searching for answers on the internet, started a gluten-free diet with immediate results. I would have occasional flare ups if I didn't watch what I ate, but in all have been pretty healthy the last 4 years. > > > > Another flare up started in mid-December 2009 and has gotten progressively worse. I am now down to 111-113 lbs (normal weight is 118) and going to the bathroom up to 20 times a day. > > I found the BTVC and SCD websites last week and have been doing my best to do the intro diet since. I couldn't find a yogurt maker locally, so had to order one online and just completed my first batch last night. > > > > Unfortunately, I am having another colonoscopy done tomorrow so am on the liquid diet today (I'm keeping it SCD legal). > > > > That's a little background on me, here are some questions: > > When it seems nothing is helping, how do you know if you are reacting to a specific food? > > > > Is there anyone else here that has been diagnosed with MC that has had success with SCD? It isn't mentioned in the book or the websites. > > > > Thanks to anyone for your help/suggestions. > > > > Pegi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 Thanks for the suggestion. I will check that out. > > > > Hi everyone, > > I was diagnosed with microscopic colitis in Feb of 2006. I was unable to tolerate the Asacol that was prescriped to me and in searching for answers on the internet, started a gluten-free diet with immediate results. I would have occasional flare ups if I didn't watch what I ate, but in all have been pretty healthy the last 4 years. > > > > Another flare up started in mid-December 2009 and has gotten progressively worse. I am now down to 111-113 lbs (normal weight is 118) and going to the bathroom up to 20 times a day. > > I found the BTVC and SCD websites last week and have been doing my best to do the intro diet since. I couldn't find a yogurt maker locally, so had to order one online and just completed my first batch last night. > > > > Unfortunately, I am having another colonoscopy done tomorrow so am on the liquid diet today (I'm keeping it SCD legal). > > > > That's a little background on me, here are some questions: > > When it seems nothing is helping, how do you know if you are reacting to a specific food? > > > > Is there anyone else here that has been diagnosed with MC that has had success with SCD? It isn't mentioned in the book or the websites. > > > > Thanks to anyone for your help/suggestions. > > > > Pegi > > > Quote Link to comment Share on other sites More sharing options...
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