menfusse
10-02-2006, 01:09 PM
Hello and thanks so much for your time. I have a rather long question, and I am not entirely sure that you will be able to answer, but I thought it was worth a shot.
My now 10 month old was diagnosed with eosinophilic gastroenteritis at 5 months via scope biopsies. She had an extrememely high concentration in her duodenum and antrum, as well as some in her stomach. She started life on milk based formula, but didn't even make it a full 2 days on it. She had major respiratory issues, a rash, and of course vomiting. We brought her home from the hospital on soy formula, but she began having bloody stools on the 4th day of soy. She was also found to have a staph infection and was readmitted for treatment for the infection as well as a formula change to Allimentum. She remained on it for almost 2 months, but gained poorly, continued to vomit regularly, and had positive hem card results for blood. She had several blue spells with reflux episodes. She also began looseing weight. My ped had sent us to a local gi, and after spending 5 minutes with us and sending us for an upper gi (which had already been done) he told us that she didn't have anything that was a "big deal" and to come back in 3 months. We were devastated, but my ped is an excellent dr. and immediately sent us to another GI at a children's hospital. Prior to the appt, my ped called to speak with them and they immediately put her on neocate. We had tried thickening with rice and it made her vomit much more, and thick-it was suggested. It really helped with the choking, but she continued to be irritable and have times when she really seemed to be in pain daily. We started trying a few solids, but she would scream and writhe in pain after all of them, and vomit hours later. She was scoped at age 5 months and was diagnosed. She went to neocate only. No meds, no thickeners. She improved, but not completely. She still had and has very irritable epsiodes and her formula intake has never picked up. She continues to be FTT.
At 8 months she saw an allergist and tested negative for everything. He reccomended we wait to start solids until she turned 1. At he GI follow up the next week, they pushed me to start solids, and finally put her back on reflux meds (pepcid). We started with sweet potatoes, then after a week we added barley cereal. We tried banannas and pears along the way. The pears gave her instant explosive diarrhea for hours afterward, and the banannas caused massive vomiting. So we stuck with what we thought was okay. I started to see a bit of blood tinged mucus after a month or so.She also looked very pale and her skin was very rough during this time. I made the GI aware of this and they sent heme cards to do for 3 days. 2 of these were positive. They then said to go off solids for 2 weeks and we would repeat the cards. She ended up with a stomach bug and I wasn't able to complete the cards for about a month. We did them and then returned for an appt. this past Friday. The cards were negative this time, and again they want me to start solids. They said that if she begins to look pale again, or have blood again then they would admit her for a couple of days and scope her again. The gi said "I will need to catch her in the act". I am not sure what that means, but it made me feel a bit like they don't believe what I am telling them, even though time and time again, tests have eventually proved what I have said.
For some reason, I have a hard time getting answers from them. Am I wrong for thinking she should be scoped again now, prior to starting solids again? It isn't like she has no history. I realize that this may seem like I am asking you to question another dr.'s judgement, but at this point I am desperate and wonder if I should just ask to be sent to Cincinatti Children's to their clinic for this disorder.
They continue to make it out to be as simple as a milk allergy and that she should have outgrown it by now, but I wonder why they wouldn't want to know for sure.
It seems that it would be worth it to me, even for just peace of mind. She is on 27 cal per oz and still at 10 months is not yet 16 lbs and her height has stalled as well.
I would really appreciate your thoughts on this, especially on the scope. I promise I won't go running off saying dr. olson said you need to do this. I just feel like I need an outside opinion on this. I need to know if I am just over thinking all of this, or if I am right in thinking that a scope now would do everyone good. At least we would know how things have progressed in there.
Sorry to have written a book. But I tried to give you as much history as possible. I appreciate your reading this and any advice you might have.
My now 10 month old was diagnosed with eosinophilic gastroenteritis at 5 months via scope biopsies. She had an extrememely high concentration in her duodenum and antrum, as well as some in her stomach. She started life on milk based formula, but didn't even make it a full 2 days on it. She had major respiratory issues, a rash, and of course vomiting. We brought her home from the hospital on soy formula, but she began having bloody stools on the 4th day of soy. She was also found to have a staph infection and was readmitted for treatment for the infection as well as a formula change to Allimentum. She remained on it for almost 2 months, but gained poorly, continued to vomit regularly, and had positive hem card results for blood. She had several blue spells with reflux episodes. She also began looseing weight. My ped had sent us to a local gi, and after spending 5 minutes with us and sending us for an upper gi (which had already been done) he told us that she didn't have anything that was a "big deal" and to come back in 3 months. We were devastated, but my ped is an excellent dr. and immediately sent us to another GI at a children's hospital. Prior to the appt, my ped called to speak with them and they immediately put her on neocate. We had tried thickening with rice and it made her vomit much more, and thick-it was suggested. It really helped with the choking, but she continued to be irritable and have times when she really seemed to be in pain daily. We started trying a few solids, but she would scream and writhe in pain after all of them, and vomit hours later. She was scoped at age 5 months and was diagnosed. She went to neocate only. No meds, no thickeners. She improved, but not completely. She still had and has very irritable epsiodes and her formula intake has never picked up. She continues to be FTT.
At 8 months she saw an allergist and tested negative for everything. He reccomended we wait to start solids until she turned 1. At he GI follow up the next week, they pushed me to start solids, and finally put her back on reflux meds (pepcid). We started with sweet potatoes, then after a week we added barley cereal. We tried banannas and pears along the way. The pears gave her instant explosive diarrhea for hours afterward, and the banannas caused massive vomiting. So we stuck with what we thought was okay. I started to see a bit of blood tinged mucus after a month or so.She also looked very pale and her skin was very rough during this time. I made the GI aware of this and they sent heme cards to do for 3 days. 2 of these were positive. They then said to go off solids for 2 weeks and we would repeat the cards. She ended up with a stomach bug and I wasn't able to complete the cards for about a month. We did them and then returned for an appt. this past Friday. The cards were negative this time, and again they want me to start solids. They said that if she begins to look pale again, or have blood again then they would admit her for a couple of days and scope her again. The gi said "I will need to catch her in the act". I am not sure what that means, but it made me feel a bit like they don't believe what I am telling them, even though time and time again, tests have eventually proved what I have said.
For some reason, I have a hard time getting answers from them. Am I wrong for thinking she should be scoped again now, prior to starting solids again? It isn't like she has no history. I realize that this may seem like I am asking you to question another dr.'s judgement, but at this point I am desperate and wonder if I should just ask to be sent to Cincinatti Children's to their clinic for this disorder.
They continue to make it out to be as simple as a milk allergy and that she should have outgrown it by now, but I wonder why they wouldn't want to know for sure.
It seems that it would be worth it to me, even for just peace of mind. She is on 27 cal per oz and still at 10 months is not yet 16 lbs and her height has stalled as well.
I would really appreciate your thoughts on this, especially on the scope. I promise I won't go running off saying dr. olson said you need to do this. I just feel like I need an outside opinion on this. I need to know if I am just over thinking all of this, or if I am right in thinking that a scope now would do everyone good. At least we would know how things have progressed in there.
Sorry to have written a book. But I tried to give you as much history as possible. I appreciate your reading this and any advice you might have.