Monday, January 17, 2011

Online love!

After my last post, I did spend a bit of time out online looking for support for my daughter’s new-found fructose malabsorption condition – and success! Not, of course, due to my own abilities in online searching – I consider myself good, but I’m not that good – but instead I had someone read my post and point me in the direction of a group out of Australia. Thank you, Bernadette!

So now you’re reading the blog of a new member of two different fructose groups, as well as a knitting/crocheting group! Who says you can’t do it all? :-)

There’s so much info in the group sites, I know it’s going to take some time to absorb it all (pun intended!), but hope is newfound and for that I am extremely grateful. While I plan to stay on the straight path for the moment, the one with very little messing around in the fructose/glucose matching up, where we try to stay fructose-free except for specific planned excursions and mostly on Friday nights, I know that I am on the road to being educated in this new world we find ourselves in. Yay!

Since my daughter’s onset at the end of September, she’s been in school exactly 1-1/2 days. I hope that tomorrow we finally put an end to that. She got better over Christmas, only to get worse again, but having just performed the underhanded cleanout maneuver (she hates this!) and removing gluten from her diet, certainly we expect her to continue her onward move to a mostly pain-free stomach.

She slept last night, nearly all the night through, and that’s the best sign I’ve had in a long time. Of course, since I’m used to being up and down with her all night, I was up a couple of times, but we can get past this. We can rediscover that night-time is sleep-time!

Here’s to all of you who take sleeping for granted – don’t! Enjoy it! Make it an event! Buy some lavender spray for your pillow, have a nice green tea with honey, lay back with a single chapter of a book, and once you turn off your light: SLEEP! And be grateful…

Saturday, January 15, 2011

Two steps forward…

It’s been more than a month since our fructose malabsorption diagnosis – and while we’ve had some success, we’ve also had some recent difficulty. Our initial wonderful turnaround has been followed by a couple of weeks of questions and more questions. Again, hindsight is a wonderful thing, because during this time it did seem like the foods I had bought contained sugar though I didn’t think they did, while really it’s more likely that her system was backing up and that was causing our issues.

Needless to say, right now she’s asleep next to me on the couch. Her stomach is a little better, she’s a bit more comfortable, but we’re back to a completely basic diet and have eliminated gluten for now. If she’s not better by Monday, the doctor wants to take a look – she may have again developed a bacterial growth and antibiotics may be in order.

I’m just so concerned that she’s losing more weight, but haven’t brought out the scale because I don’t want to alarm her. Our last visit showed she had dropped below 80 pounds, she’s just under 5 foot, and had lost about eight pounds total, so close to ten percent of her body weight really. While we have found a couple of foods that eased her sugar/snack/dessert cravings (diet Jello pudding  and Pirate’s Booty!), neither one of them will fatten her up. Sad smile

If anyone has any ideas for gluten/sugarfree (including HCFS, etc.) desserts or high-calorie meals, I’d love to hear them! Our nutritionist is helpful with what not to eat, but doesn’t have a lot of information in this regard. I’m off now to research “fructose malabsorption” support groups. Wish me luck!!!