- Joined
- Jan 29, 2014
- Messages
- 72
Hi there, I am Susan and I would like to introduce myself and share my daughter's story. Please feel free to offer any advice or suggestions you may have. Being new to all of this, I appreciate any information I can get my hands on without scouring the internet for hours upon end. :smile: Warning this will probably be very long and boring. I am going back to her birth as I think there are things that have happened that could be relevant...
Our youngest baby girl, Ella, was born in July of 2011. Pretty much a normal PG, just an irregular heartbeat that resolved itself soon after she was born. Her sugar was a little low but that also resolved on its own. We denied any vaccines while in the hospital and had them done via our Pedi office at her 2 month appt. She ended up being Coombs positive and jaundiced and we left the hospital with a Bili blanket that we were able to stop using after 4 days. At her 4 d/o appt, we were told that she was not gaining enough and that we should start supplementing with formula as she was EBF. We refused and continued to EBF and she started gaining weight by her 6 day follow up.
After about a month, we noticed that her stools were changing from the seedy yellow to a very gooey green color. She also had a very bad case of Sebhorric dermatitis. We were advised by our Pedi to use a certain shampoo and to try block feeding to resolve the green stools. We started block feeding and by the next day, we had blood in her stools.
We again went back to the pedi and I was advised to avoid dairy in my diet to resolve the blood in her stools. I started avoiding dairy and after 4 days, the blood in the stools was increasing and we were still having positive occult samples. 2 days later again and were at the ER because she had a fever of 101.3. ER cleared her with no obvious reason found for the fever. (1.5 months old at this point)
We followed up with our Pedi the next day as she still had a fever, although not as high as it was the night before and he determined she had an ear infection and prescribed amoxicillin. We started it that night and also received a referral to a GI for the blood in the stool.
1 day after starting the antibiotic, she has severe diarrhea and by day 3 she starts vomiting. We start limiting our nursing to only 5 minutes at a time to reduce the amount of liquid in her stomach. By the next day, she is sleeping a lot and still having the vomiting and diarrhea. We took her back to the Pedi the next day and she has lost 8 ozs over the last 4 days. They cleared her ears at this point and advised us to stop the antibiotic.
By this point, she isnt sleeping well, I am not sleeping well and we are both beyond miserable. We had our GI appt the next day and her weight was down again. The GI told us that if things were not better in 24 hours, we would need to hospitalize her. We left that appt feeling utterly defeated and I was in tears at the prospect of yet another night of my baby vomiting and pooping and crying. I called my pedi in tears and he had us bring her in. At this point, her weight was down 1.2 lbs from 5 days before, but she wasnt lethargic or severely dehydrated as her mouth was still moist. Our Pedi wanted to avoid the hospital at all costs so he wanted us to see what the next 24 hours would do and we were told to come back tomorrow for a weight check but to go to the hospital if her Fever was higher than 100.4. So that night, things are as they have been, she's crying, pooping, vomiting, etc and I'm just beside myself. I take her temp and it's 100.4. I couldn't remember if it had to be higher than that or that to take her to the ER. So I texted our pedi and he said if it goes even a 10th of a degree higher to take her. So 30 minutes later, its 101.2. I loaded up the other 2 kids and called my husband at work and we made the trek to the ER. I tell you I never felt so relieved in my life to be at a hospital. I just finally felt like the weight was off my shoulders and she would finally be taken care of.
The ER did all of the things they normally do, spinal, labs, etc for babies with fever and by morning told us that she would be admitted to monitor her output and weight. They never did find a reason for her vomiting and diarrhea and blame the antibiotics for masking what the culprit was. She ended up in the hospital for 6 days. The vomiting stopped on day 3 and the diarrhea stopped on day 4. She was getting 2.5 times the amount of daily fluid by IV that she needed plus what she was getting from BF'ing and was still in the negative when compared to what she was putting out. She lost a total of 1.5 pounds and started losing her hair at the same time. They never did anything more than just labs and cultures, no imaging or otherwise. We were discharged and while she did start gaining weight again, she never did get back to the 50th percentile.
Since her hospital stay, we had the bloody stools once in a while but chalked it up to me having had some dairy that I didn't realize. She wasn't big on eating any solids (would gag if we tried) until she was a year old and was still on a downtrend weight wise when looking at her growth chart. Her height was also on a downtrend, but not as severe as her weight. At her 18 month appt, her Pedi still wasnt very concerned because she was developing and growing, but based on that she was still BF'ing and not eating a whole lot, contributed the slow weight to that. By her 2 year appt, she was now in the 5th percentile weight wise and the bloody diapers were getting more frequent and we knew it wasnt dairy that was causing it all the time, all thought when we did a dairy challenge, the blood was much worse the next day. So a day before her 2 year appt, she had bloody diaper that was the worst we have ever seen. Her Pedi looked very shocked and said he was surprised we had not brought her in immediately. (It's amazing what we get used to I guess) He wanted us to go back to the GI for further evaluation at this point as she was now anemic in addition to everything else.
Back at the GI, she too was very shocked with the amount of blood in the diaper and wanted to do a colonoscopy and decide from there on any other tests. She also wanted us to start Sulphasalazine, Steroids, Nexium, and folic Acid but we refused and asked to wait for the test results. So we did labs, got the scope done and received our diagnosis of UC. She again asked us to start meds, but also wanted to do an Upper GI series and a endoscopy. We again asked to wait to start meds until all the tests were done as I wanted to know how things looked un-medicated. The other two tests came back clean so while we can't rule out Crohn's at this point, its more than likely UC. Also to note, after her colonoscopy, other than the blood she had after the procedures from the biopsies, she remained blood free for 2 months and gained 2 lbs! The most weight gain we had seen in a looong time. At this point, we scheduled an appt for a second opinion. We decided to transfer care to him based on that he was willing to let us try a month of strict dairy free just to see how things went. So the dairy free was still resulting in bloody stools so we resigned ourselves to just using the sulphasalazine. The new doctor didn't feel that the steroid was necessary as her symptoms were mild at this point. At her 1 month appt after starting her meds, all her cultures were negative and she was up a pound and had grown 3/4 of an inch. We started our second bottle of medication and she started fighting the meds and ended up relapsing with blood in the stools again and tummy pain. We called the pharmacy and the only thing they could tell from the file is that they may not have added the banana flavor. The sent us a new bottle the next day and things are better as far as taking the meds, but not nearly as good as they were on the first bottle.
That brings us to where we are now. She's been on the medication for 2 months now, we've been blood free for about 1.5 weeks and we had a formed stool yesterday. (YAY!) We go back in March and will have labs done then to see how everything looks. I feel like we should have labs sooner since she has not had any since starting the medicine back in December, but you guys tell me. She has also started waking up at night with knee and ankle pains and getting bruises on her legs. I don't know if that's normal for a 2 year old's activity level and perhaps growing pains? I know I used to get real bad pains in my ankles and knees as a kid as well. I just feel like there are still too many unknowns and that the doctor's office brushes all of concerns off etc.
Thanks to DanceMom, we have a 3rd opinion scheduled on April as well just because I'm not entirely confident we're getting the attention she needs. Maybe we're just paranoid, over-protective, whatever, but I hate feeling like this medicine is causing other problems and because its not a known side effect, they aren't concerned. Add to that, we can never get anyone on the phone, it's all voicemail based and if we miss the call (which they always seem to call when I'm in the bathroom or something :ybatty: ) they wont even call back until the next day. Soooo frustrating.:ymad:
So there you have it, more than you probably EVER wanted to know. If you read this far, thank you for taking the time and interest. Ask any questions you like. Oh and no one else in our family has IBD on either my side or hubby's. So this was very much not expected.
P.S., I'm also curious as to what Multivitamins any of you recommend.
Our youngest baby girl, Ella, was born in July of 2011. Pretty much a normal PG, just an irregular heartbeat that resolved itself soon after she was born. Her sugar was a little low but that also resolved on its own. We denied any vaccines while in the hospital and had them done via our Pedi office at her 2 month appt. She ended up being Coombs positive and jaundiced and we left the hospital with a Bili blanket that we were able to stop using after 4 days. At her 4 d/o appt, we were told that she was not gaining enough and that we should start supplementing with formula as she was EBF. We refused and continued to EBF and she started gaining weight by her 6 day follow up.
After about a month, we noticed that her stools were changing from the seedy yellow to a very gooey green color. She also had a very bad case of Sebhorric dermatitis. We were advised by our Pedi to use a certain shampoo and to try block feeding to resolve the green stools. We started block feeding and by the next day, we had blood in her stools.
We again went back to the pedi and I was advised to avoid dairy in my diet to resolve the blood in her stools. I started avoiding dairy and after 4 days, the blood in the stools was increasing and we were still having positive occult samples. 2 days later again and were at the ER because she had a fever of 101.3. ER cleared her with no obvious reason found for the fever. (1.5 months old at this point)
We followed up with our Pedi the next day as she still had a fever, although not as high as it was the night before and he determined she had an ear infection and prescribed amoxicillin. We started it that night and also received a referral to a GI for the blood in the stool.
1 day after starting the antibiotic, she has severe diarrhea and by day 3 she starts vomiting. We start limiting our nursing to only 5 minutes at a time to reduce the amount of liquid in her stomach. By the next day, she is sleeping a lot and still having the vomiting and diarrhea. We took her back to the Pedi the next day and she has lost 8 ozs over the last 4 days. They cleared her ears at this point and advised us to stop the antibiotic.
By this point, she isnt sleeping well, I am not sleeping well and we are both beyond miserable. We had our GI appt the next day and her weight was down again. The GI told us that if things were not better in 24 hours, we would need to hospitalize her. We left that appt feeling utterly defeated and I was in tears at the prospect of yet another night of my baby vomiting and pooping and crying. I called my pedi in tears and he had us bring her in. At this point, her weight was down 1.2 lbs from 5 days before, but she wasnt lethargic or severely dehydrated as her mouth was still moist. Our Pedi wanted to avoid the hospital at all costs so he wanted us to see what the next 24 hours would do and we were told to come back tomorrow for a weight check but to go to the hospital if her Fever was higher than 100.4. So that night, things are as they have been, she's crying, pooping, vomiting, etc and I'm just beside myself. I take her temp and it's 100.4. I couldn't remember if it had to be higher than that or that to take her to the ER. So I texted our pedi and he said if it goes even a 10th of a degree higher to take her. So 30 minutes later, its 101.2. I loaded up the other 2 kids and called my husband at work and we made the trek to the ER. I tell you I never felt so relieved in my life to be at a hospital. I just finally felt like the weight was off my shoulders and she would finally be taken care of.
The ER did all of the things they normally do, spinal, labs, etc for babies with fever and by morning told us that she would be admitted to monitor her output and weight. They never did find a reason for her vomiting and diarrhea and blame the antibiotics for masking what the culprit was. She ended up in the hospital for 6 days. The vomiting stopped on day 3 and the diarrhea stopped on day 4. She was getting 2.5 times the amount of daily fluid by IV that she needed plus what she was getting from BF'ing and was still in the negative when compared to what she was putting out. She lost a total of 1.5 pounds and started losing her hair at the same time. They never did anything more than just labs and cultures, no imaging or otherwise. We were discharged and while she did start gaining weight again, she never did get back to the 50th percentile.
Since her hospital stay, we had the bloody stools once in a while but chalked it up to me having had some dairy that I didn't realize. She wasn't big on eating any solids (would gag if we tried) until she was a year old and was still on a downtrend weight wise when looking at her growth chart. Her height was also on a downtrend, but not as severe as her weight. At her 18 month appt, her Pedi still wasnt very concerned because she was developing and growing, but based on that she was still BF'ing and not eating a whole lot, contributed the slow weight to that. By her 2 year appt, she was now in the 5th percentile weight wise and the bloody diapers were getting more frequent and we knew it wasnt dairy that was causing it all the time, all thought when we did a dairy challenge, the blood was much worse the next day. So a day before her 2 year appt, she had bloody diaper that was the worst we have ever seen. Her Pedi looked very shocked and said he was surprised we had not brought her in immediately. (It's amazing what we get used to I guess) He wanted us to go back to the GI for further evaluation at this point as she was now anemic in addition to everything else.
Back at the GI, she too was very shocked with the amount of blood in the diaper and wanted to do a colonoscopy and decide from there on any other tests. She also wanted us to start Sulphasalazine, Steroids, Nexium, and folic Acid but we refused and asked to wait for the test results. So we did labs, got the scope done and received our diagnosis of UC. She again asked us to start meds, but also wanted to do an Upper GI series and a endoscopy. We again asked to wait to start meds until all the tests were done as I wanted to know how things looked un-medicated. The other two tests came back clean so while we can't rule out Crohn's at this point, its more than likely UC. Also to note, after her colonoscopy, other than the blood she had after the procedures from the biopsies, she remained blood free for 2 months and gained 2 lbs! The most weight gain we had seen in a looong time. At this point, we scheduled an appt for a second opinion. We decided to transfer care to him based on that he was willing to let us try a month of strict dairy free just to see how things went. So the dairy free was still resulting in bloody stools so we resigned ourselves to just using the sulphasalazine. The new doctor didn't feel that the steroid was necessary as her symptoms were mild at this point. At her 1 month appt after starting her meds, all her cultures were negative and she was up a pound and had grown 3/4 of an inch. We started our second bottle of medication and she started fighting the meds and ended up relapsing with blood in the stools again and tummy pain. We called the pharmacy and the only thing they could tell from the file is that they may not have added the banana flavor. The sent us a new bottle the next day and things are better as far as taking the meds, but not nearly as good as they were on the first bottle.
That brings us to where we are now. She's been on the medication for 2 months now, we've been blood free for about 1.5 weeks and we had a formed stool yesterday. (YAY!) We go back in March and will have labs done then to see how everything looks. I feel like we should have labs sooner since she has not had any since starting the medicine back in December, but you guys tell me. She has also started waking up at night with knee and ankle pains and getting bruises on her legs. I don't know if that's normal for a 2 year old's activity level and perhaps growing pains? I know I used to get real bad pains in my ankles and knees as a kid as well. I just feel like there are still too many unknowns and that the doctor's office brushes all of concerns off etc.
Thanks to DanceMom, we have a 3rd opinion scheduled on April as well just because I'm not entirely confident we're getting the attention she needs. Maybe we're just paranoid, over-protective, whatever, but I hate feeling like this medicine is causing other problems and because its not a known side effect, they aren't concerned. Add to that, we can never get anyone on the phone, it's all voicemail based and if we miss the call (which they always seem to call when I'm in the bathroom or something :ybatty: ) they wont even call back until the next day. Soooo frustrating.:ymad:
So there you have it, more than you probably EVER wanted to know. If you read this far, thank you for taking the time and interest. Ask any questions you like. Oh and no one else in our family has IBD on either my side or hubby's. So this was very much not expected.
P.S., I'm also curious as to what Multivitamins any of you recommend.
