|Sep 25, 2008|
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
katiesmommyHave you gotten your results from the scope. Maybe I missed your post. I was just curious.
We are still waiting to hear from the abyss of the ped. GI office.
|Sep 25, 2008|
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
|I finally called the other day since I hadn't heard anything and spoke to the case manager. They said they mailed out a letter. Well, she had white spots in her throat that they don't know what they are but apparently the pathology is normal on them. She had no swelling or inflammation which is really good since she use to choke on every drop of liquid that went in her mouth. They don't want us to start milk and are helping us get Elecare for toddlers reduced/free since she can't do the solids she is on. So we were told to wait it out as most kids grow out of it and she didn't test positive for any allergens even though if we give her a tiny bit of oats she stops eating for a few days. She (GI) discussed treatment options for EE b/c of the spots and now we just have to wait it out. Katie only eats formula, pears, apples, bananas and apricots. I keep waiting for the letter to come to call back to discuss what it says since the case manager doesn't have it in front of her and didn't know anything about the spots. Sigh.|
|Sep 25, 2008|
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
|Hi Tracey, i read one of your posts yesterday but couldn't respond (no time)....I had no idea Katie is so small or having so many problems with food! I remember a pic of her a couple months ago and I thought she looked so healthy and chubby! I am so sorry all this is happening...that is crazy they don't know what the spots are! |
DH and I were looking at pics of Elyse last week and we found a set of them where we thought she looked really chubby...we were amazed to think that she had a "fat" stage...only her face looked chubby, but the pics after that were skinny face again! She looks really healthy now, i think.
Good luck with getting the elecare covered. Elyse would not drink the vanilla one any better than the unflavored. The two are exactly the same except for flavor and mixing instructions. The toddler one has mixing instructions for 30 cal only, while the infant one has directions for 20 and either 24 or 30, can't remember and too lazy to look. But they can stay on the infant one if you concentrate it more. however, elyse won't drink any now if it is concentrated more so we went back to 20 cal. She drank a grand total of 2 ounces today. *sigh*