health update

What a rough month this past one has been. We are pretty much still back at square one with absolutely no answers and still dealing with gastrointestinal issues. I kept her off solid foods entirely for a period of 3 weeks, during which we had a terrible time with 5 days of vomiting, 2 weeks of diarrhea, 4 weeks of a double ear infection, 1 week of severe diaper rash, 2 trips to the ER, and 5 different types of antibiotics. We could barely keep our head above water so solid food was not anywhere on the radar. While in the ER in early november, she had an xray done that showed she was tremendously constipated (but not impacted per se) which was causing her vomiting, and they gave her a glycerine enema. With that, she only pooped once...an ENEMA, and she only pooped ONCE. So we ended up back in the ER with more vomiting the next day, and then they did a barium enema contrast study to look for other possible problems. No problems were spotted, and between the barium enema and the antibiotics for the ear infection, she had diarrhea for a good 2 weeks, which caused the awful diaper rash. I was desperate to stop the diarrhea so I thought maybe adding some fiber to her diet via solid foods would help. She had not gained any weight in 2 months, and fell from the 68th percentile in weight (which is where she's always been since birth) to the 21st percentile. 

We started solids again the sunday before thanksgiving, with some homemade butternut squash baby food I made myself. That week of Thanksgiving she was like a new baby...she was drinking FOUR 8-ounce bottles per day consistently!! Not refusing bottles, or only drinking 5 ounces like usual. And eating the baby food too!! That's like a miracle for us! She was sleeping well (taking 1.5 hour naps consistently) and having 3 good bowel movements per day and I never had to wake her up at night to take a bottle and it was such a good week for us. The best we've ever had.

After that week, things started going downhill again. She started getting constipated, and with that she was back to refusing bottles (or only drinking 4-5 ounces), not wanting to eat solids, fussing in the evenings, not taking good naps. The only thing that I can deduce from all this is that, the week before thanksgiving she wasn't eating solid foods and she was having diarrhea, so her 'pipes' were completely cleaned out. The week after, she'd been eating solids for a week and she started to get a build up in her 'pipes' and with that we were back to all the old ways- only drinking about 20 ounces per day, forcing me to wake her up every night to take another bottle to try to get enough formula in her. This make me believe, it's not a matter of WHAT solid foods she's eating that could be causing problems, not a food intolerance issue. It's the solid foods in general. When she eats ANY type of solid food, she gets constipated, and then all the other symptoms come back. She was previously taking lactalose on a daily basis, but that didn't help. Now she's been prescribed miralax- "take as needed for constipation". Which pretty much means, if I don't give it to her every day, she'll be constipated.

I don't know what to do about solid foods anymore. I would never be able to spot a food intolerance/sensitivity problem because she has constipation/decrease in appetite on a baseline case. Plus the double ear infection which also causes fussiness/decrease in appetite etc. I am struggling every day to get her to drink enough formula, nevermind the 5 servings per day of various solid foods recommended at her age. I am about ready to throw up my hands and give up on solid foods entirely until someone can figure out why solids cause such terrible constipation and all the other problems that go with it. I will have the only 10-month-old in the world who doesn't eat solid foods.

The double ear infection is another mystery that may or may not be related to everything else. She's had it for over a MONTH now and it's not getting any better. We tried 4 different type of antibiotics....didn't make a bit of difference, except that the amoxycillin made her even more miserable b/c it caused terrible diarrhea and diaper rash. Our pediatrician referred us to an ENT specialist, but she was a big fat waste of time. We saw her Monday, and she pretty much asked a few questions, looked inside Caroline's ears, and then said 'sorry there's nothing else we can do besides put tubes in her ear.' Great. Before we resort to putting my daughter under anesthesia for surgery I think I'll get a second opinion, thank you very much. So we have another appointment with a different ENT next Monday. Also an appointment with her GI on Tuesday.

Someone better start getting us some answers soon. I am so sick and tired of getting the run-around, the brush off, the dismissal. I'm sure some of my friends (and probably the doctors we've seen too) think I'm just an overly-paranoid mother, a hypochondriac who freaks out at every little symptom and thinks her kid is dying. There have been so many times when I doubted myself as well...what if I AM just freaking out over nothing? What if I'm looking for answers to a problem that doesn't exist? But that one good week we had during Thanksgiving proves that I'm NOT overreacting. I've seen what she is capable of when conditions are right and she's feeling well. I've seen what 'normal' looks like and how she should be acting/eating/drinking all the time. I'm not crazy. I'm not making this up. I'm not freaking out over nothing. She is not well, and someone needs to figure out what's going on ASAP. I have dragged her to specialist after specialist after specialist and no one has pinpointed it. My gut feeling is that whatever she has (Crohn's disease/Celiac/Hirschprung's etc), it's a very mild case of it, and that Caroline does not have any of the 'typical' symptoms that would be easy to spot. My worst fear is that what she has will be easy to miss and/or misdiagnose, and that this will drag on for years and she will suffer unnecessarily for years before they finally figure it out. 

Through it all though, my sweet baby has been such a remarkable trooper. She is such a sweet happy smiley baby that I'm sure the doctors look at her and quickly dismiss me when I insist she's in pain, something's not right, etc. What the double ear infection has taught me is that just because she LOOKS fine doesn't mean she IS fine...she just has an incredibly high tolerance for pain. Most babies are terribly fussy and cry a lot and don't sleep well when one ear is infected....my daughter has been living with BOTH ears infected for over a month and she's hardly made a single whimper.