changing the diet -- again...

[FMmom]

We saw the pediatrician for another weight check. Kaelin gained a pound -- which, as the pediatrician pointed out one pound more than she gained in the entire previous year, but considerably down from last month's gain. Sigh.

There was one week that went badly. Kaelin was given some gum and candy by a classmate, then she ate a bunch of sugar at Easter (again, totally out of my control...) And for some odd reason, I ended up making potatoes at five meals that week. All in all, the calorie content stayed even or went up a bit, but Kaelin lost about a pound.

Dr S suggested that adding in some sugar in a controlled way may reduce the clandestine eating. She advocates cheesecake -- something sweet, yet has a ton of fat and protein, so it won't cause the blood sugar to spike and crash. Sounds great from a calorie stance and Kaelin is exactly the kid who could limit herself to a Friday night dessert. But reintroducing sugar? Scary, indeed.

We still don't have the results from the HFI test. The weight loss that occurs every time she ingests sugar tells me something (I just don't know what yet...) I'm hesitant to give her ice cream or cheesecake until I know more about FM vs HFI.

Dr S also asked about what fruit and veggies I'm providing. I told her that fruit is 100% out -- the ones that are supposed to be okay in tiny amounts for FM just make Kaelin insane, which may or may not be a sensitivity to salicylates.

Of course, the salicylates are not matching up as well as I hoped, either. I read that mushrooms are moderately high, but Kaelin seems totally unaffected by them. Both mushrooms and asparagus are supposedly okay for HFI; moderately bad for salicylates; and out for FM. And I'm sure that I could look at three different charts and reverse the three conclusions... Drives me absolutely insane!

I surrender.

When we left the doctor's office, Kaelin asked if she could have ice cream for dessert and eat some vegetables. I told her that we should probably try one thing at a time so she voted for vegetables. Then we went out to lunch and she asked for a milkshake (can we do vegetables tomorrow, mommy?) However, after one sip she pushed it over to me saying she just can't drink it. She still wants a dish of ice cream tonight, so the asparagus is on hold for now...

We have amazing and wonderful doctors -- but why do I walk out of every appointment feeling more confused that when I went in!?!?!??!

[Charlie Arnold]

Apr 16, 2012 20:36:06 GMT FMmom said:

We have amazing and wonderful doctors -- but why do I walk out of every appointment feeling more confused that when I went in!?!?!??!

I know that feeling well, simply it is because this is a very complex condition about which little is known, HFI was only first diagnosed in the 1950s and FM even later by the sounds of it. Alot of kids with HFI died before diagnosis so collection of information about symptoms are limited. But between us all things are maybe becoming clearer. But there is always the question is it one condition, or a bunch of different unrelated ones. the answer to that is treat one well at a time and see what you are left with.

Ice cream, I make Megs her own ice cream and have recently found some almond essence and some yellow food colouring which looks OK from the ingredients so I shall try adding that for extra next time I make it. I will post the recipe but ideally you need an ice cream maker. This is a great thing to have in your kitchen anyway, even I enjoy home-made ice cream more now.

Vegetables, megs seemed to react even to the lowest fructose ones so for now she just doesn't have any again, she doesn't like mushrooms full stop or asparagus. For now, as you are in early days of full elimination I would forget all of them.

Sweets and rewards, you need to strike deals with Kaelin and stick firm to them for the best results, just like dealing with any kids behaviour, don't strike a deal then let them change it, as they are running the show then...... have you managed to locate pixie stix or smarties that are safe from what I have heard in the US, I'll look up some posts on the hfi board for you for sources. Colormist seems to know the most about them....... Then you use them for deals, she sticks to the diet, she earns her candy treats but only safe ones, she breaks the diet, at home, at school, anywhere (after all she is old enough to know she is breaking it now) she doesn't get them that day. Put your earplugs in and ride out the battle, she will soon learn. I know it sounds tough but trust me after a few days battle you will have won. and one big tip, always hide them in a different place each day so she can't sneak them. Best place is on your person. By the sounds of it the weight gain is shouting the answer out to you that the low fructose, low sugar diet is working to stick with it, but we are talking probably years of thorough sticking to it to get the best results and let her poor little system heal.

Get inventive with her involved in the cooking, and planning of meals, Meg is great at making biscuits and cakes now, scones do well. We use glucose powder in all our sweet baking again but I limit it to only a little a day as it does seem to shoot her energy out through the roof, but that is her little treat and that keeps her happy. After a while I find she actually then stops sourcing sweet flavours and enjoys savouries, pancakes, plain scones, plain biscuits etc. it just takes alot of forward planning and home-baking, you will become a domestic goddess.

Megs is doing much better in the morning now with a breakfast of bacon and sausages, but then she doesn't start school till 8.45 so I have time to make it, but I find the protein breakfast is much better for her, we did it all through the holiday and I noticed a calmer child in the mornings.

Sounds like we have both radically changed the girls diets at the same time so lets do battle together and keep each other posted. But do stick with it, you may feel like the big bad wolf but I am sure it is worth it, do you get supernanny in the US, she talks so much sense and she gets amazing results just by consistency, this is no different and your reward will be seeing Kaelins growth chart creeping up. And every time it does massive praise. And reward her with outings, time spent doing something she loves and as un-food related as you can think of. Just a simple little bit of your time and attention will be reward enough for her, I promise you.

Good luck, keep battling

Charlie

[Charlie Arnold]

How are you going with the diet changes Fmmom?

I am so glad we took the major step backwards at the moment. Different child........ I am not getting half the anxieties, the whining, the irritability, oh yes, and the gas.

We have gone right back to basics again but this time without the potato for now too so maybe my instints were right. It is early days as we have just had the Easter Holidays but in the first week of school last week she was up and dressed early, ate her breakfast beautifully, up to wee and brush teeth and at school EARLY....... unheard of, all that in the morning without one moan...... and no nagging from me.

some of it is different tactics from me, keeping it routine, calm and starting the routine from bedtime almost but I have done all this before but because she has been so irritable it has been harder to do. At the moment I have a smily, relaxed child and long may it last........

And I think the reason this now works is her system is less irritated and maybe she is sleeping better as a result.

I have purged the kitchen cupboard and anything she is likely to help herself too that she shouldn't went either next door or in the bin. I am very blessed that she isn't too argumentative or fussy what gets put on the plate at the moment, and I suppose with it just being me and her in the house it is easier as there aren't others eating other stuff BUT we went out after school with a friend yesterday as a reward and her friend had other things to eat and there wasn't even a murmer of protest from Meg. I am very proud of her in the way she seems to handle this.

I'm back on different ideas for rewards and thankyou Lucky for reminding me this works just as well, if you are good you don't get sweets you get stickers or a magazine (horsey usually) and she is happy, and it lasts alot longer.........

Next step, get a waffle maker, those will add some variety to the meals.....

So, to cut a long story short....... IT IS SO WORTH CUTTING BACK THE DIET IF IT GIVES THE KID AN ENJOYABLE LIFE.....