Well, we just came back from a 2 day trip to Indianapolis. Ben had a conference for work all day Thursday, while Leona and I went to St. Vincent's Hospital for her appointment with a Pediatric Gastroenterology appt. with Dr. Susan Maisel.
Dr. Maisel was great! She has many awards on her wall including Patient's Choice award for 2009 & 2010. Leona loved her and actually didn't fuss when she examined her! So I went through the last 2 years of everything and she came up with some ideas; 3 possiblities to be exact.
Basically this is acid reflux. The most likely cause would be from allergies. The danger is that she could be getting used to it and it could be less severe now that her stomach is growing and the bands at the entrance and exit of her stomach are stretching, thus showing less symptoms. This is prevalent in children with fair skin and red hair. She said that this is actually a form of eczema inside the body. One of the side effects that I had not known previously is congestion, which Leona has mostly everyday in some form. The dr. said that many adults are actually walking around with reflux assuming it is allergies b/c they have gotten used to the pain. She suggested that I get tested if Leona tests positive.
Leona has already had an upper GI and a feeding study which would also be used for this diagnosis and both came back fine. Also, they had diagnosed this at 5 mos. and tried prefacid for 5 months or so. She didn't show a huge difference on the meds. Of course food allergies need to be tested for.
Basically this is a bacteria inside the stomach. It lives in the acid. This would be treated with antibiotics. Leona's previous specialist suggested this as a possibility and suggested to just treat with a particular antibiotic. In January, she had been on some type of antibiotics, so I am wondering if that is why we are seeing less symptoms. Who knows!??!
The last possiblity she suggested was Celiac Disease. This is a gluten allergy and can be seen in the form of a milk allergy if left untreated. This can lead to low weight and height growth. This can also show in rashes which Leona gets frequently on her fair skin. We had brought this up several times to the 2 doctors, but they said that this was unlikely because she started having problems before she had solid foods. With every bottle until 21 mos, she had it thickened with oatmeal, so she got a lot of gluten daily for a long time. This would require a biopsy of the large intestine during the endoscopy, I believe.
Ok...so that's the scoop from this doctor. She will also take lab work and test for allergies during the endoscopy. We did schedule the endoscopy for Friday, May 27 in Indy, but are not sure if we are going to go through with it. These 3 ideas have been on the table before, so we are making an appt. with her regular pediatrician to discuss what she thinks. If you have any wisdom or experience to share with us, we would love to hear it. We really want to figure this out but we don't want to put her through the endoscopy if we can avoid it. Your prayers would be greatly appreciated too!