Birthday parties.

Why must every birthday party pizza, cake and ice cream? Talk about making a child feeling excluded. We dealt with our first birthday since the diagnosis nearly three weeks ago. A cousin, sort of, was turning 3 years old. They had cakes (three of them!) a huge jug of chocolate chip ice cream (made with HFCS of course) and pizza (all red sauce. If it were white sauce or olive oil she could have at least eaten the cheese off it).
I felt awful for poor Ciara but I suppose it is only the adults that view her as poor Ciara. She happily had some of the salad that was provided for the adults. She munched a bag of potato chips. I brought along an individual sized Hagan Daz ice cream for her (hey, the dietitian said said no candy. Nothing about ice cream ;) ) She even picked off some sausage from a piece of pizza. She was happy.
There is another one tonight but I won't be there. Daddy gets to take her to the party tonight while I volunteer at a local therapeutic riding center.

So, the drastic personality change I was kind of expecting has not occurred. Ciara sleeps through the night now. That is really nice. The tantrums are still ever present. She had another last because I put bubbles in that bath. That followed the tantrum that it was "not night time" it was "awake time" to which I suppose she was technically correct but if you are going to spend yet another 15 minutes on the floor throwing a tantrum that someone put both tents in the same bag and not their separate bags then it is "night time" for you. Sigh. It was one of the times I wish my child had come with a hand book that would tell me how she want the world run since I am obviously screwing it up.

Not yet! NOT YET!

I heard these screamed through tears for fifteen minutes this evening. I was trying to get Ciara into her jammies, hair brushed, story read and it to bed. Just getting the Pull-up on was a fighting match as she screamed "NOT YET!" and attempted to pull it back down. I gave in, wrapped her in a fleece blanket and rocked her until the tears stopped. Then my husband started to read the bedtime story to our older girl. The screaming started once again at full force. I was baffled. Never has this child resisted bed time like this. The usually giggles or stall tactics, sure, but screaming her head off?

I expected some behavior changes along with this new diet. I was hoping Ciara would start sleeping better, be happier and even, maybe, more social. She is sleeping better. She is still in our bed but she is not squeaking or crying during the night. We haven't had a bad dream in over a week. She's even sleeping from 8 pm to 8 am or later most days. However, she has gotten moodier. Happy one minute, screaming at her sister the next. She kicked her sister today while pretending to ignore her and color. She spent most of the afternoon screaming at her sister to stop or go away. It made for a trying day.

And the new diet? Well, we are trying our best. The directions the dietitian gave us are vague at best. Avoid all foods with more than 0.2 fructose and no candy (Sucrose, fructose). Does that mean I should avoid sucrose too? I have done tons of research but I have trouble remembering what other say is okay and what is not. Add the fact that many of the "okay" things contain more thatn 0.2 fructose according to the USDA and I am starting to think I will jst give her water for two months. And avocados, they do seem to agree on that.

I am trying to avoid wheat, even though it is a questionable one. I have looked up all sorts of gluten free bread recipes and have the shopping list ready to go. I need to go shopping anyway, there is not much here for her to eat. But we are a one car and one paycheck family. Payday is Friday. It has been five weeks since the last one. This is not a week I can just wander off to the grocery store. So I gave her half a bagel for lunch, loaded with ham. We had Shepherd's pie dinner. Peas are supposed to be okay, right? And corn? I think I managed to avoid green beans and carrots in her's. She had peas last night, too. She used to hate them. She ate them all. No runs so far so I suppose they are okay. I wish she could/would tell me if they make her hurt.

And what was the problem at bed time? I didn't give her a hooded towel, all four were in the wash. Instead she got a beach towel I dug out from the bottom of the towel pile. Apparently, Nemo was not good enough. It took 45 minutes to get that out of her.

Corn chips

How long can one survive only on corn chips? I figure at least a couple weeks, right. Longer once you throw the milk in and even some of the immunity boosting Crystal Light?

The day started off well. I made her some oatmeal and scrambled eggs. She ate every bite. Lunch came around (and was only remembered because we spaced morning snack and man was she just in a horrible mood!) and I made sandwiches. But I don't have wheat free bread. Or, I do, but it is frozen and sweetened with peach and pear juice. Whose bright idea was that?! Why not sugar, just plain old sugar? So Ciara got salami and cheese and corn chips. All she ate was corn chips.

I broke out the trail mix a bit later, I figured she could eat the nuts. She ate the banana chips. BAD IDEA. They made their reappearance within an hour or so. I know it was the bananas chips. There is a plus (or downside) to the child wearing diapers. You get to see what comes out. Yuck. As a result dinner was not consumed and she was just a miserable child most of the afternoon.

I can't wait until this fructose avoidance part is over. I hate telling my child she can't have green beans or bananas. I wish there was some alternative because she is really starting to miss produce. I hope she sleeps okay tonight.

Doing well thus far

I think I have a fluke. What three year will calmly accept that the dietitian said no candy right now? She walked up to me yesterday happily waving a caramel. We were at Grandma's and, like any good grandmother, there were various candy dishes around the house. I was a little upset that my mom hadn't put any of the Smarties I gave her out in witht he M&M's and caramels. She simply said "Candy, please." I told her the doctor said no, not right now. She put it back. No tears, no whining. I'm impressed.

Ciara has stuck the fructose avoidance diet pretty well the past few days. We have started carrying around corn cakes and give them to her through out the day if we are out. She handles "no" so much better if she is not hungry.

I made her chocolate chip pancakes this morning with a gluten free baking mix. I don't think I like the garbanzo bean flour. I keep thinking falafals. But I substituted dextrose for the sugar and only put in a about teaspoon of mini chocolate chips. That would have much less sugar than syrup, I think. She loved them. Next time I am going to try one with rice and tapioca flour.

Ciara also really like her guacamole and black bean tostadas at lunch. She kept trying to give Colton a bite. I don't think I have ever seen a more disgusted look on a child's face. I am going to have think of lunch menus on Fridays that are more preschooler friendly in general, not just my preschooler.
Even the Popsicle all the kids had later later went over okay since she had Smarties, though I think she only ate two or three as she came giving them away. Ciara can certainly make me smile.

Who needs sleep...

First, I want to say Quinoa Pasta rocks. Seriously, no one in the family could tell the difference between it and the traditional Semolina Wheat. I made white cheddar macaroni and cheese today for dinner, with a nice side of fresh spinach. She seemed to enjoy it But we all know what comes after dinner.

Bedtime.

Bedtime has been a battle for the past, oh, three years. As a newborn we cheated and just put her in the swing. She didn't get too heavy for that until close to a year old. Then I just laid next to her and nursed her to sleep. Some nights it took longer than others, upwards of an hour. I got tired of this about a year ad half ago. I finally made her wean at 3 years (yeah, I'm a bit crunchy.) She has rarely slept through the night. Every night is filled with screams, whimpers and cries. Nightmares, night terrors or just separation anxiety (as in, she is no longer touching momma.) So you can imagine how excited I was when I read that fructose malabsorption can cause sleep problems!! Maybe the diet can help! Maybe, just maybe, I can sleep more than two hours in a row!

Ciara has been following the diet pretty well the last few days (okay, I'll admit it. I gave her a broccoli floret, but she loves them and it was the smallest, tiniest one in the steamer basket.) She has actually been yawning during the day and showing the typical three year old signs of sleep deprivation. Mainly, she is a temper tantrum throwing little demon. So I thought tonight I would put her to bed early. Maybe she can catch up some. I gave her a nice bubble bath with lavender scented bubbles, a little message with lotion, a quiet bed time story and a soft song. I was yawning. She, however, had song requests for the next 45 minutes. Sigh. Maybe she'll sleep into tomorrow.

For now, I will just sit here and enjoy the hard won silence .

Ahh, strawberries @$%#...

Yesterday was not a good day. The worst part was her demanding strawberries. I can't blame her. She was hungry. She wanted something to eat. I was running out of snack ideas. Cheese puffs weren't cutting it anymore.

I had spent the morning trying desperately to think of healthy snacks ideas that weren't as loaded with fat as meat, cheese or chips. Fruits and veggies have always been my personal parenting snack choice. I had even to gone to the boards I frequent looking for help but there was none to be found. Ciara's strange new diet confounded everyone that morning. So there we were, me frustrated by an unsuccessful search and her wanting strawberries. We didn't even have any strawberries in the house. We were both sitting on the kitchen floor crying. Ciara ended up with corn chips. I guess they are that much different form cheese puffs. Tantrum now quelled we were able to get her dear sister off to kindergarten. Upon returning I learned that she will eat a "pizza" made of corn tortilla, olive oil, ham and mozzarella.

The day ended with a trip to the local health food store. We picked up some corn cake thins, rice cakes seemed awfully big for her little mouth, unsweetened peanut butter, rice puff cereal and quinoa pasta. Oh, and my favorite find, Dextrose powder. I felt better. It was a start.

Today went better. She liked the rice puffs and ate a fair handful along aside her egg. We went to friends house for the day and my idea of feeding her 10 minutes before the other girls actually worked. They were having pizza, real pizza. Ciara had rice, chicken, corn and spinach. But she ate so much of it before the others started on the pizza she was satisfied with only a few bites of the toppings, yay! She loves the corn thins too. I put peanut butter on one, which she didn't eat, but the other girls did. I don't know if she cares but I like that the others want some of her snacks.

So today has ended with me thinking "I can do this." I know every day won't end that way, there will be more crying on the kitchen floor. But we will figure this out. We can do it because we have to.

The beginning

Fructose Malabsorption, shortened to FructMal. It was the last thing the GI doctor mention in the list of possibilities with the gut issues my child was having. But that is getting ahead of myself. Let me introduce you to my younger daughter, Ciara.

Ciara is three years old. She is a serious and shy child, the exact opposite of her older sister. She joined us the summer of 2006 and, aside from a few quirks (such as being afraid of being carried down the stairs as a newborn!), seemed normal and healthy.

Our journey began in the winter of 2008. I introduced my child to fruit juice, with "explosive" results. I figured it was from the juice and, it being just a treat, stopped giving it to her. Next was pear, than an apple. Later strawberries. Add in the behavior differences I was noticing, she was yelling at her sister, wanted to be left alone, wouldn't answer me, never looked at me and was having night terrors, I called my pediatrician in April.
Celiac's and autism were suspect. We started the process of testing but we were also moving. Things had started to get better. Ciara's wonderfully balanced diet had gone in the hole and she wouldn't eat much. It got to a point where Ciara would eat nothing but french fries and what happened? She became social. She was happy. The runs went away. The pediatrician sent us to a GI but she was pretty certain it was celiac's.

They tested for celiac's, allergies, white blood cell count, etc. They all came back negative. The Fructose was last. It was supposed to take three hours. After 30 minutes they had a positive breath test. After a second at 60 minutes they let us go. The nurse later told us she had "sky rocketed" from a baseline of 2 to 76 ppm in that 60 minutes. I don't think it is a good sign when a nurse uses the term sky-rocketed. From what I have read a positive test is an increase greater than 20 ppm in 3 hours. Okay. That is a pretty sure positive.

We were sent to a dietitian. A rather, useless one that is. She never heard of fructans. She is unaware of what causes the pain, bloating and gas in Fructose Malabsortion. She knew less than half of what is on Wiki on the subject. She thought Ciara would out grow it quickly and this diet was temporary. She found out from another before we left that that is unlikely. So we left with questions than answers and the basic instructions to avoid anything with more 0.2 fructose and anything sweetened with Sucrose (like candy, ice cream, bread) as it breaks down into fructose.

I was in tears. I worked hard getting my children to eat a balanced diet including tons of fresh fruits and vegetables. They loved raw green beans, artichokes, even radishes. Now she can't have them and I had to remove them from the house so Ciara doesn't see them. She is most upset about oranges. An dI still have to give my first daughter a balanced diet as one containing mostly proteins and dairy would not be good for her. That poor child inherited mom's metabolism and can pack on weight quickly if I don't watch and keep things healthy in the house.

We got the positive test a week ago today. We just saw the dietitian this past Thursday. Ciara is on the fructose avoidance diet right now and will be until at least the end of October. Then we will start adding foods back to her diet. I can't really relay much info in this post if that is what you have come here for. But I will update often about our little triumphs, info I find, and even our bad days, because their will be plenty.

It will be interesting seeing how my little girls changes and how we, as a family, adjust to these changes. Removing nearly all sugar from our, learning to balance produce differently, will take some adjustments. Later we will be adding school that mix, birthday parties. Stick around. Things will get interesting.