Hello everyone...I wrangled with the idea of signing up to post in the forums, because we do not have a diagnosis. I have been wracking my brain for months trying to explain my son's symptoms, and have a couple theories I am fighting to explore. Unfortunately, our GI specialist has been of little to no assistance, and our last appointment on Friday has sent me over the edge. I will be looking for a new specialist, but in the meantime, am hoping to find someone who has a similar story--or has perhaps heard of someone exhibiting the same symptoms.
My youngest will be 1 in less than two weeks, and has been having failure to thrive issues since about 3 months of age. It was at this time that we were referred to a GI specialist to try and rule out possible causes. He was 7 lb 4 oz at birth, but now at almost a year, is still under 17 pounds and wearing 0-3 month outfits. My oldest son was and still is a linebacker. Genetically, we don't run petite on either side, so I found it hard to accept that Ethan was just a "small baby". Because of his FTT, I started him on baby food around 4 months, trying to boost his weight gain. Instead, I had the most irritable baby, who would scream as if he was being murdered during his meals. He would take several spoonfuls, and then burst out in angst...at first I thought he was just a demanding little boy; as though I wasn't feeding him quickly enough. But it kept on occurring, and still does occasionally to this day.
Additionally, his bowel movements have always been off. They are mainly loose and smell god-awful. AWFUL. He will occasionally have formed stools that look layered in color, but only every now and then.
At first the doctors theorized that he had a milk protein sensitivity, and since I was BF'ing and supplementing, I removed dairy from my diet and he used Nutramigen in between. I wasn't convinced that this was the answer, though. It came out of thin air, and his symptoms persisted despite the adjustments. In January he was hospitalized for FTT. Each and every appointment I felt like I was being interrogated about his intake. He has the most INSATIABLE appetite. I kid you not, he eats double--or more--of what my almost 4 year old eats. I don't know where he packs it away, and despite all of the food he eats, he never gains. During the hospital stay, they did an xray, an upper GI, and lab tests. Nothing came back abnormal, and we were sent home. I really began to believe that maybe my concerns were unwarranted and that it was all in my head.
Until March. Ethan woke up screaming from his nap. When I walked into the room to get him, I was greeted with the most malodours diaper. I go to change him, and found TONS of mucous in it...no stool....just a ton of thick, clumpy mucus. I used a qtip to gather it all and was appalled at how much there was. It was revolting and shook me up. I took pictures of it, and kept it to bring to the pediatrician. Over the next week and a half, there was a ton more mucous....over and over. This time with stool, though. Once gathered--probably around the size of a half dollar or so. Just a big ball of mucous. I would post pictures, but I am not sure how to in these forums.
I have been keeping a picture diary of any abnormal stools, but it has not returned. I FINALLY got into the doctor this past Friday, and he was in and out within three minutes. I requested that he test for inflammatory bowel disorders--such as crohn's and ulcerative colitis--and also CF. Apparently there was a fecal elastase test that was done during his hospital stay, and he said it was normal. I felt like he spent the three minutes debunking my theories instead of treating my son, or reassuring me how or why my infant would crap mucous instead of stool. No explanations. No consolation. Just a script for a sweat test (he said he would order it "to be sure"), and a script for some more stool samples. I tried to show him the pictures from the diapers, and he looked at one dismissively, and never remarked on it....I am BEYOND AGGRAVATED, concerned, and overwhelmed.
In my gut I know there is something wrong.
I graduate Wednesday as an RN, and am preparing to sit for my license within the next couple of weeks...I am by no means a doctor, but I have felt the need to advocate for my son and pursue anything that seems clinically relative. As far as my suspicions for CF go, I have researched that sometimes infants present with GI symptoms--abdominal distention, excessive appetitite, failure to thrive....and the latter two just jump out at me. He seems to always have persistent congestion, with a bit of a cough here and there--but I had always thought it was related to my air in my home.
Has anyone had their child have excessive mucous in their diapers or bowel movements? I have searched and searched on google but cannot find a single story relative to my son's....I am wary of CF, but want to be convinced that this is something I don't have to worry about. We have the sweat test on Monday, but with all of the diagnosis stories I have read, I have little faith in the diagnostics they use for this condition.
Help?! And, I'm sorry to impose in the forums with my suspicions...but, I figured you all would be the best point of reference that I could reach out to.
Love and peace,
Katelyn
My youngest will be 1 in less than two weeks, and has been having failure to thrive issues since about 3 months of age. It was at this time that we were referred to a GI specialist to try and rule out possible causes. He was 7 lb 4 oz at birth, but now at almost a year, is still under 17 pounds and wearing 0-3 month outfits. My oldest son was and still is a linebacker. Genetically, we don't run petite on either side, so I found it hard to accept that Ethan was just a "small baby". Because of his FTT, I started him on baby food around 4 months, trying to boost his weight gain. Instead, I had the most irritable baby, who would scream as if he was being murdered during his meals. He would take several spoonfuls, and then burst out in angst...at first I thought he was just a demanding little boy; as though I wasn't feeding him quickly enough. But it kept on occurring, and still does occasionally to this day.
Additionally, his bowel movements have always been off. They are mainly loose and smell god-awful. AWFUL. He will occasionally have formed stools that look layered in color, but only every now and then.
At first the doctors theorized that he had a milk protein sensitivity, and since I was BF'ing and supplementing, I removed dairy from my diet and he used Nutramigen in between. I wasn't convinced that this was the answer, though. It came out of thin air, and his symptoms persisted despite the adjustments. In January he was hospitalized for FTT. Each and every appointment I felt like I was being interrogated about his intake. He has the most INSATIABLE appetite. I kid you not, he eats double--or more--of what my almost 4 year old eats. I don't know where he packs it away, and despite all of the food he eats, he never gains. During the hospital stay, they did an xray, an upper GI, and lab tests. Nothing came back abnormal, and we were sent home. I really began to believe that maybe my concerns were unwarranted and that it was all in my head.
Until March. Ethan woke up screaming from his nap. When I walked into the room to get him, I was greeted with the most malodours diaper. I go to change him, and found TONS of mucous in it...no stool....just a ton of thick, clumpy mucus. I used a qtip to gather it all and was appalled at how much there was. It was revolting and shook me up. I took pictures of it, and kept it to bring to the pediatrician. Over the next week and a half, there was a ton more mucous....over and over. This time with stool, though. Once gathered--probably around the size of a half dollar or so. Just a big ball of mucous. I would post pictures, but I am not sure how to in these forums.
I have been keeping a picture diary of any abnormal stools, but it has not returned. I FINALLY got into the doctor this past Friday, and he was in and out within three minutes. I requested that he test for inflammatory bowel disorders--such as crohn's and ulcerative colitis--and also CF. Apparently there was a fecal elastase test that was done during his hospital stay, and he said it was normal. I felt like he spent the three minutes debunking my theories instead of treating my son, or reassuring me how or why my infant would crap mucous instead of stool. No explanations. No consolation. Just a script for a sweat test (he said he would order it "to be sure"), and a script for some more stool samples. I tried to show him the pictures from the diapers, and he looked at one dismissively, and never remarked on it....I am BEYOND AGGRAVATED, concerned, and overwhelmed.
In my gut I know there is something wrong.
I graduate Wednesday as an RN, and am preparing to sit for my license within the next couple of weeks...I am by no means a doctor, but I have felt the need to advocate for my son and pursue anything that seems clinically relative. As far as my suspicions for CF go, I have researched that sometimes infants present with GI symptoms--abdominal distention, excessive appetitite, failure to thrive....and the latter two just jump out at me. He seems to always have persistent congestion, with a bit of a cough here and there--but I had always thought it was related to my air in my home.
Has anyone had their child have excessive mucous in their diapers or bowel movements? I have searched and searched on google but cannot find a single story relative to my son's....I am wary of CF, but want to be convinced that this is something I don't have to worry about. We have the sweat test on Monday, but with all of the diagnosis stories I have read, I have little faith in the diagnostics they use for this condition.
Help?! And, I'm sorry to impose in the forums with my suspicions...but, I figured you all would be the best point of reference that I could reach out to.
Love and peace,
Katelyn