When N was about 20 months old, she had a terrifying hypoglycemic episode. She woke up fine, but a little after waking, she started breathing funny and a few minutes after that, was not talking or responding to me. She was barely even looking in my direction when I called her name. My heart was racing and the adrenaline picked up making me feel shaky. My fight response had been activated. I was advised by the pediatrician's office to call 911 because I couldn't get her to the ER. The paramedics seem to get to the house in less than 2 minutes. They checked her blood sugar (49) and gave her intramuscular glucagon right in her thigh and she didn't flinch whatsoever. At that point, I knew it was serious. Ironically, because they gave her the glucose, there was no way to do the specific tests needed to figure out if she had a food disorder. She stayed in the hospital for a day, but ate a meal a couple hours after getting to the hospital and seemed normal. Even after a bunch of testing, we never found out what the deal was.... except we knew that we had to make sure her blood sugar stayed up. We still have a prescription for special tests to get BEFORE any glucose is given to find out what is up with her body...
Fast forward to May and June of 2011. Neva started having explosive poo every time she went, but it was still just slightly above her normal frequency and she wasn't getting dehydrated or anything so I wasn't super concerned about it. We contemplated eliminating gluten {again} because of other issues she's had in the past (a whole other post!), but then she started pooping blood. If there is one thing that will scare the crap {bad pun} out of a parent, it's bloody poop coming out of their kid! We had her in to the E.R. after the second day of it and when it started dripping off her bum.
We found out she contracted C-Diff . We couldn't understand HOW she got c-diff since it's almost always after antibiotics and she hadn't had antibiotics since the Pertussis Scare of '09 . And why was she having all the butt-shooting prior to the blood, did it just take that long for the c-diff to really damage her colon? There were so many unanswered questions. We had to cancel our vacation up to northern MN to visit family because of my cousin being pregnant and her having her baby shower the same weekend we'd be there. We didn't want to go if we wouldn't be able to see Cousin M, my kids' favorite person in the world.
N was put on the most bland food diet. It's really there that our biggest problems with food started happening. She'd always been picky, but she'd still eat enough. She was SO limited on what she could eat on the new diet. We just started letting her choose every meal for herself so that she would eat SOMETHING, being terrified of another hypoglycemic episode. She was on antibiotics for the c-diff and we worked really hard on repairing the damage. She still bled at every bowel movement for 2 more weeks and her poo didn't firm up for another 4 weeks.
Over time, she became more and more picky. She used to LOVE coconut yogurt, but started refusing it. She used to LOVE mac'n'cheese (dairy free of course) and started refusing that as well. Once I eliminated casein from her diet and mine (yes, she still nurses), that's when her explosive diarrhea stopped as well as the bleeding. However, before the bleeding and diarrhea stopped, we scheduled a fructose tolerance test. Apparently, fructose malabsorption is quite common and I didn't know that it can be a lingering effect of c-diff. We eventually got her in after having 2 weeks of perfectly fine bowel movements. Getting her to drink the fructose was very ... umm interesting, but she did it. They didn't give me results after the first blow, but after the second, Dr. Nelson came out and congratulated me on my daughter's having set the new office record for hydrogen! Thanks Doc, but it's not really something to be happy about...
Again, we had to limit what she ate for 2 weeks. She could have no fruit and many of the foods we buy are organic and/or natural so they use natural sweeteners... a lot of time, it's fruit juice... all this just a week before Halloween when every candy has high fructose corn syrup or fruit juice. I must admit we were really frustrated. We didn't, and still don't, understand how she got c-diff in the first place (it wasn't a terribly strong strain since the one round of antibiotics took care of it and it hasn't recurred which is very common) and then she couldn't partake in eating Halloween candy... what next?!
After the two weeks were up, we started giving her small amounts of fructose. She's tolerated small amounts of strawberries, honey, ketchup/tomatoes, raisins and lots of syrup. We are just so happy that she can have some of her favorite things, especially tomatoes!
So back to the whole point of this post... she stopped eating her favorite foods. She was eating a lot of hot dogs, mayo bread, cereal, and oatmeal. We were so exasperated at every meal..."Do you waaaaannnnt.... *insert favorite food here* ..."NO!" We would spend 15 minutes at EVERY. SINGLE. MEAL trying to figure out what she wanted. We went back to the dietitian, Betsy, at Dr. Nelson's office (we'd seen her once before because N's weight was concerning) and she listened to me describe what was going on and she thought that we were being manipulated by N to get what she wanted to eat. I didn't quite fully agree, after all, she'd stopped eating her absolute favorite foods even though they were allowed. Regardless, things needed to change and 3 days ago, we instituted a 'food intervention'. Here are the biggest things we are doing during this intervention:
- No leaving the table until your milk is gone (in her case, chocolate coconut and hemp milk)
- No choosing your food, you eat what is given to you (I'm making sure to offer 3-4 things with each meal)
- No eating in between meals and snacks which are, at the most, 3 hours apart (mostly only 2.5hrs)
We thought this was going to be insane. We picked up some glucose gel in case she goes into a hypoglycemic episode, but I highly doubt we'll ever use it. She seems to be RELIEVED that she doesn't have to choose her meals anymore. She is eating again! She ate meatloaf last night for the first time in years and seemed to actually enjoy it. She tried broccoli even though she didn't want to and she seems sooo much happier. There are less meltdowns.
We have our N back.
I will continue to update on her progress! :D
