8 month old twins case history

[Caseycarnes]

Amelia & Sydnee 8 months old

Twin history (may or may not be relavant) they are twin girls born 5 weeks premature separate sacs and placentas, with Amelia (twin A) prematurely rupturing membranes due to velamentous cord insertion that was starving her, born at 4 lbs 13 oz no NICU stay. Sydnee(twin B) born at 6 lbs 2 oz, one week NICU stay with pulmonary hypertension.

At first glance you would thik it started with Sydnee, but it actually started with Amelia! Three weeks after delivery Amelia started having diarrhea and she would scream in pain for hours, not colic pain like I had that with my 3 year old, this was severe kicking and screaming. The pediatrician had me try multiple formulas to no avail, also we started her on acid medication (zantac generic) because she was vomiting all of the time. We had seen the these same thing with my son three years prior, so I eventually went to Nutramigen and Prevacid solutab as I did with him. None of which worked for her, she had countless cases of burning diaper rash that left her with a speckled bloody bottom. Meanwhile, Sydnee is trucking along fine with Neosure and a little zantac for acid, no diarrhea. Her pediatrician did bloodwork which came back fine and sent me to the pedatric gastro doctor. They did a speech study that came back with good results, and a barium swallow which didn't show anything even with her acid issues. Her bibs were turning purple and then eventually black with stains that I was told was from the Prevacid solutab. Thats when I had to start having her Prevacid compounded at an Apothecary. They decided to look for the milk allergy with biopsies by doing a sigmoidoscopy when she was 5 1/2 months old. This all came back clean and the gastro doctor was sure she would have a milk allergy, but I did ask what the next course of action may be if she did not. His response was to look for low grade infections. Turns out it all came back clean. He had gone out of town and had another doctor do the procedure on my daughter, I even gave that doctor a diarrhea diaper before the procedure to show them what I was talking about, he took a specimen and examined it under a microscope...to show nothing. Her gastro doctor was unavailable since he was out of town and I needed some answers, so I went back to the peditrician. The peditrician tested for two things when I mentioned low grade infections, and since stool studies were never mentioned or done that is what she did...and C Diff was discovered. Finally, a diagnoses at 6 months old at this point, on an infection she had for probably 5 months. She was given a round of Flagyl. The gastro doctor was informed and shocked at the diagnoses especially since she had never been on antibiotics or even in the hospital, but said it can be trasmitted through the community. The Flagyl was almost done on Amelia, I think she had two or three days left of the medication, when her twin sister Sydnee got the infection and was started immediately on Flagyl. Amelia had intermittant diarrhea and still vomitting but not as bad, the gastro doctor did another test that came back negative, so we went on to think maybe the acid was a different unrelated issue and we changed the formula to Elecare. Sydnee still had diarrhea after her course of medication and was tested again with a negative result, but in my own research I thought maybe if it wasn't C Diff it was lactose intolerance so she is now on soy formula and is doing well, fingers crossed because that change was made last week. Amelia has been on a lactose free hypoallergenic formula so I had no explaination and kept calling both the pediatrician and the gastro doctor, and she is back to vomting her compounded prevacid, having kicking and screaming fits like she did at 3 weeks old. Both offices finally ordered another C diff test and it came back positive, which I knew it would because her stools smell funny. Meanwhile, I had been doing probiotics for her almost all along (starting when she was 1 1/2 months to make her diarrhea go away) it made it inttermitant at best, and helped a bit with the diaper rash for awhile. Then the probiotics stopped working completely, though I do still use them just in case its helping. I was also instructed to use them by the gastro doctor when there was three days of Flagyl left, but not to use the probiotics during the beginning of the course of medication, which I did the first round and will do once her next round is filled hopefully by tomorrow. She is still not allowed to have food other than Beechnut Rice Cereal just in case there are things she is allergic to since we don't add to her problems. I am concerned that there is an underlying problem with her that has not been found, like a possible immunodeficiency. I am concerned for that since how she got it is unknown and some things just don't add up, or was an antibiotic I was on excreted into my breastmilk (she was on a mixture of neosure and breastmilk for 2-3 months).
She has been on 1.2 ml Prevacid twice a day compounded at 5mg/ml and it was recently upped to 1.4 ml 2 x a day.