Hi! I just joined and have a question and wanted to share my story. I'm sorry it's so long. Not sure where to turn for advice. I tell people my story and they ask if I should give my son raisins. Haha it's so beyond that but I know people are just trying to be helpful.
My son is scheduled for endoscopy next Wed and I'm wondering if it's necessary or maybe if his symptoms sound familiar to you?
My son, G, has had GI issues starting shortly after he was born. He is 17 months old now. He was not interested in nursing and he seemed constipated and gassy even though he was breastfed. Around 8 weeks he developed mucousy stool with intermittent blood. I cut out most allergens from my diet and he still did not get better. His pediatrician had no idea and it wasn't until he was 4.5 months old that we saw a GI due to the pediatrician's ignorance. His lactoferrin and occult blood tests were always positive during this time. I had to nurse my son when he fell asleep or else he wouldn't eat. I suspected some sort of allergy even though I cut everything out. GI said put him on Alimentum, I did and things were fine for a month and a half. We moved and new ped said we could try to go back to a regular formula so we did about a month and a half later after starting Alimentum which I so regret now. When we switched, things seemed fine for a month or so. Some weird things would happen but otherwise ok. Then, my son started with random cramps and got constipated. It took me a while to realize what was going on since he was trying new foods, etc and I would blame that. Never saw blood/mucus though.
He didn't seem constipated because he would poop 2-4 times a day but sometimes they were firmer than others. That's why it took so long for me to realize. He would wake up at night for hours. We tried everything to keep him unconstipated but he would always have pellets mixed with soft stool. We switched back to Alimentum only for one week when he was around a year old with no food and we were going to introduce one food at a time to see what bothered him. During that whole week of Alimentum only, he was upset and in pain, gassy still. Up all night. His poop didn't seem that constipated then. Still pooping multiple times a day. We started up foods one at a time and we were referred to a GI. It was hard to tell if any foods bothered him since he never really got better.
After some trial and error, we got him on Mirilax. Even the GI didn't think he would be constipated since he went so often. After finding the right dose, my son seemed more settled and was sleeping better. Still pooping a lot and usually the first poop of the morning is still pellet like but otherwise ok. In the evening, sometimes he would have D.
My son is sensitive to foods and things with skins bother him and other foods give him D. Even on mirilax, I can't give him a lot of foods or he will get constipated. I waited for quite awhile after mirilax to try dairy again. He seemed okay with the little bit of dairy I give him. Through this time, G would still have some issues of unsettledness at night some gas and possible crampiness but night wakings were not as bad and overall he was doing so much better. Per his GI, he's on a pretty generous dose of Mirilax and still has a tendency to be constipated. The GI has ran several tests on G with nothing ever being positive including another Lactoferrin.
When he was about 15 months old, I started to see mucus and blood again in his stool. His Ped GI asked me to go wheat, dairy and sesame free as those caused very minor blips on an allergy panel. The GIs words were "we're clutching at straws." Throughout his 15th month, I would see mucous in some diapers. The third week into the special diet, I started to see blood again and now mucus with each diaper. I switched G back to his old diet which does include a little dairy and wheat thinking the dairy and wheat replacements were even worse. He is still drinking Alimentum.
Fast forward to today, 17 months old , I still see blood, streaks, not puddles or anything. He has mucus in every diaper. Sometimes clinging to normalish poop. Sometimes, he's just pooping yellowish sickening smelling mucus poop. I've played with his diet, even adjusted his mirilax and haven't seen much improvement. G is pale, tired and extremely unsettled at night. I hear him rolling around throughout the night and for naps. He is having cramps and is extra gassy and sometimes has a hard time drinking a bottle because his belly hurts. He is still having a mix of constipation and diarrhea. I have always been fairly careful with his diet and he eats pretty much the same stuff so I'm not sure why the mucus and blood is back. Side note: my son reacts very badly to probiotics. Even non dairy kind.
The GI ordered another lactoferrin test. FC is not covered by my insurance. The lab made a mistake and did it qualitative instead of quantitative. It was positive but we don't know a value. GI said we could run another test and if the LF wasn't that high we would not do scopes or we could just go straight to endoscopy. I jumped at the scopes and to have an opportunity to help my son and maybe get a diagnosis or at least rule stuff out after all this time.
But now I'm questioning this, what if they don't find anything and I'm subjecting my son to these tests. My GI hasn't found anything of too much significance with G so far, test wise, so I'm wondering if this will be the end of the rope for dealing with my son if nothing is found. I struggle with this because I don't really want anything bad to be found but I would like to help my son with whatever is wrong with him.
Based on his story, would you do the endoscopy and would you expect anything to be found? I know 17 months is pretty young to have anything IBD related. Does this sound like more allergy problems? I didn't think so because for a week we didn't feed him anything but formula and were slow to introduce foods but who knows. Do you have any suggestions on what could be wrong with him? If you even made it this far. Lol
Thank you! :heart:
My son is scheduled for endoscopy next Wed and I'm wondering if it's necessary or maybe if his symptoms sound familiar to you?
My son, G, has had GI issues starting shortly after he was born. He is 17 months old now. He was not interested in nursing and he seemed constipated and gassy even though he was breastfed. Around 8 weeks he developed mucousy stool with intermittent blood. I cut out most allergens from my diet and he still did not get better. His pediatrician had no idea and it wasn't until he was 4.5 months old that we saw a GI due to the pediatrician's ignorance. His lactoferrin and occult blood tests were always positive during this time. I had to nurse my son when he fell asleep or else he wouldn't eat. I suspected some sort of allergy even though I cut everything out. GI said put him on Alimentum, I did and things were fine for a month and a half. We moved and new ped said we could try to go back to a regular formula so we did about a month and a half later after starting Alimentum which I so regret now. When we switched, things seemed fine for a month or so. Some weird things would happen but otherwise ok. Then, my son started with random cramps and got constipated. It took me a while to realize what was going on since he was trying new foods, etc and I would blame that. Never saw blood/mucus though.
He didn't seem constipated because he would poop 2-4 times a day but sometimes they were firmer than others. That's why it took so long for me to realize. He would wake up at night for hours. We tried everything to keep him unconstipated but he would always have pellets mixed with soft stool. We switched back to Alimentum only for one week when he was around a year old with no food and we were going to introduce one food at a time to see what bothered him. During that whole week of Alimentum only, he was upset and in pain, gassy still. Up all night. His poop didn't seem that constipated then. Still pooping multiple times a day. We started up foods one at a time and we were referred to a GI. It was hard to tell if any foods bothered him since he never really got better.
After some trial and error, we got him on Mirilax. Even the GI didn't think he would be constipated since he went so often. After finding the right dose, my son seemed more settled and was sleeping better. Still pooping a lot and usually the first poop of the morning is still pellet like but otherwise ok. In the evening, sometimes he would have D.
My son is sensitive to foods and things with skins bother him and other foods give him D. Even on mirilax, I can't give him a lot of foods or he will get constipated. I waited for quite awhile after mirilax to try dairy again. He seemed okay with the little bit of dairy I give him. Through this time, G would still have some issues of unsettledness at night some gas and possible crampiness but night wakings were not as bad and overall he was doing so much better. Per his GI, he's on a pretty generous dose of Mirilax and still has a tendency to be constipated. The GI has ran several tests on G with nothing ever being positive including another Lactoferrin.
When he was about 15 months old, I started to see mucus and blood again in his stool. His Ped GI asked me to go wheat, dairy and sesame free as those caused very minor blips on an allergy panel. The GIs words were "we're clutching at straws." Throughout his 15th month, I would see mucous in some diapers. The third week into the special diet, I started to see blood again and now mucus with each diaper. I switched G back to his old diet which does include a little dairy and wheat thinking the dairy and wheat replacements were even worse. He is still drinking Alimentum.
Fast forward to today, 17 months old , I still see blood, streaks, not puddles or anything. He has mucus in every diaper. Sometimes clinging to normalish poop. Sometimes, he's just pooping yellowish sickening smelling mucus poop. I've played with his diet, even adjusted his mirilax and haven't seen much improvement. G is pale, tired and extremely unsettled at night. I hear him rolling around throughout the night and for naps. He is having cramps and is extra gassy and sometimes has a hard time drinking a bottle because his belly hurts. He is still having a mix of constipation and diarrhea. I have always been fairly careful with his diet and he eats pretty much the same stuff so I'm not sure why the mucus and blood is back. Side note: my son reacts very badly to probiotics. Even non dairy kind.
The GI ordered another lactoferrin test. FC is not covered by my insurance. The lab made a mistake and did it qualitative instead of quantitative. It was positive but we don't know a value. GI said we could run another test and if the LF wasn't that high we would not do scopes or we could just go straight to endoscopy. I jumped at the scopes and to have an opportunity to help my son and maybe get a diagnosis or at least rule stuff out after all this time.
But now I'm questioning this, what if they don't find anything and I'm subjecting my son to these tests. My GI hasn't found anything of too much significance with G so far, test wise, so I'm wondering if this will be the end of the rope for dealing with my son if nothing is found. I struggle with this because I don't really want anything bad to be found but I would like to help my son with whatever is wrong with him.
Based on his story, would you do the endoscopy and would you expect anything to be found? I know 17 months is pretty young to have anything IBD related. Does this sound like more allergy problems? I didn't think so because for a week we didn't feed him anything but formula and were slow to introduce foods but who knows. Do you have any suggestions on what could be wrong with him? If you even made it this far. Lol
Thank you! :heart: