two steps forward and one step back

[FMmom]

Two steps forward and one step back is still progress, isn't it?

Kaelin had her one month weigh-in at the pediatrician on Friday. She is officially 3.4 pounds heavier (it's the most she's ever gained between weigh-ins AND in the least amount of time -- generally she is checked anywhere from eight weeks to six months...) So that was outstanding news.

The pediatrician said that she had a LONG talk with the gastro doc earlier in the week -- he happened to be sitting at the computer reviewing Kaelin's records when he received the ped's email -- she said she barely released the "send" button before he called (god I love our doctors!)

Apparently Kaelin's situation is getting critical. If she doesn't put on weight now, her bones will stop growing, as will her brain (yikes!!!!!!) so gastro doc is consumed with packing on some pounds. (Of course, since this call was before the weigh-in, neither doctor knew Kaelin was making progress) He said that he was thinking that I would have to either take Kaelin off the FM diet or take her off the ADHD meds or both.

The ped laughed when she saw my expression over taking Kaelin off the ADHD med. She said they both knew it would be my least favorite option. I said it's not that -- honestly, I'd love to get her off the meds, but it's counterproductive. She gets so hyper, so fidgety that she simply cannot sit down for a snack, let alone a meal. And with less food, I see more signs of hypoglycemia which just exacerbates the situation. Ultimately, between less food and constant, uncontrolled activity she drops a ton of weight.

And her weight is not the sum total of her life. When I told Kaelin to skip her Prilosec one morning, I didn't realize she skipped all medication. I got a very kind email from her teacher mentioning that Kaelin was having a little difficulty maintaining her normal structure. I responded that I noticed she didn't take her meds and was just about to email to see if they noticed anything -- and it looks like they definitely did. With that bit of news, the teacher became totally honest about the absolute disaster of a day Kaelin had -- she couldn't stop talking, she couldn't stop moving; she was unable to read or do any math problems; she was sent on numerous errands just for the activity, but it seemed to make her more active; she was emotional; and she just overwhelmed with simple tasks like putting away her homework papers.

So no, we won't be taking her off medication.

Taking her off the diet would also be counterproductive -- eating some foods bring about the total out of control activity level and other foods are so painful she just doesn't want to eat.

Any other suggestions?

Actually, yeah, gastro doc was thinking we may have to do a gastric feeding tube. The pediatrician laughed and asked what he proposed putting through the tube, ground steak? So gastric tube was also ruled out. (I read about making my own solution for feeding tubes, however, Kaelin needs a rather specialized one because of the PI and I'm not sure there is anything that contains the fat breakdown she needs without giving her a bunch of junk that she can't handle. Sigh.)

The pediatrician asked what changes I thought made a difference and I can't answer that. I've been telling all of her doctors for awhile that Kaelin drops about a half pound whenever she eats sugar (and none of them can explain that...) so I eliminated all sugar and sugar substitutes about one week before Kaelin's appointment last month. I never totally eliminated wheat, but when I took away the sugar, I gave her as much wheat as she wanted -- pasta, bread, anything as long as it contained no sugar. And then I followed the ped's suggestion of Lactaid.

So which is the reason behind the weight gain?

Without the sugar, there is no more dropping one pound overnight, then the long slog trying to gain that pound back. Maybe snacks of pasta or bread is better than hamburgers. Or maybe the Lactaid is making a difference. Who knows? But at least for the foreseeable future, I'll continue doing all of it.

Twice Kaelin did end up having some sugar and she was so overly hyper -- it was maddening. It's hard to see just how far she's come until she goes back like that. Yikes. In addition, she did drop some weight. And no amount of eating appropriate foods restored her to balance -- it took at least 24 hours for her to act "normal" again.

The nurse at the pediatrician's office tried to get the results of the HFI genetic test before our appointment, but it's not back yet. The Metabolics doc said it would take about two weeks, but turns out that they test in batches and it could be as long as twelve weeks. Even if they don't find any mutations, I'm not sure I'll go back to giving Kaelin sugar. And considering the result of this experiment, the pediatrician hinted that it may be HFI regardless of the result. She also mentioned that the hydrogen breath test could have been a false positive. Gastro doc said that he wanted to do the test again, just to make sure.

I really don't want to do it again. Kaelin's poop turned to water within a half hour. She was sick for days -- everything she ate had her sprinting to the bathroom within seconds. She lost four pounds. Clearly fructose is horrid for her.

It's so weird, but I'm kinda hoping that the HFI test is positive. It would be nice to have a clear-cut answer, something definitive to tell Kaelin and her school and anyone else that her diet is essential to her health. But then again, whatever answers I would have in the short term -- there is the long term reality of living with all this. Sigh.

So yay! Kaelin is gaining weight. But the Lactaid/milk is making her constipated so she needs to take Miralax every single day. Her stomach is hurting more than ever -- so is it the milk, the Lactaid, the flour, or constipation?

Progress, but so many questions...

[Charlie Arnold]

Wow, yes it is steps backwards and forwards but by the sounds of it more baby steps forwards. Thats great that she has put on that amount of weight, that gives you something really positive to focus on. And great that your doctors are working so well with you too.

I have had some theories bouncing around in my head for a while so I will use some of those here.

It does sound like you have made alot of really positive changes to Kaelins diet but sometimes that gets muddled as at the end of the day, as you have said you don't know what works. Hopefully in a short while between us all we will come up with a much more suitable diet for these kids as the low Fodmap diet clearly doesn't suit them. But they need to enjoy living and food.

Sugar is by the sounds of it a big trigger with both our girls especially with the ADHD tendency. Meg goes as though she is drunk when she has much sugar, glucose or high glycemic index foods. She totally changes in the click of a finger about half an hour after eating it and becomes manic, silly, rude and almost off the planet. this can go on for several hours and then she is absolutely exhausted, I think there is a trigger reaction from somewhere around the stomach to an area in the brain, more of this theory to follow...... so yes, it needs cutting out. And for this reason limit glucose as much as poss too. If Kaelin does this she will burn off all the calories built up.....

The hydrogen breath test ........ From what I can work out HFI sufferers and possibly severe FM sufferers may get metabolic acidosis as a result of not being able to break down the fructose properly. As a result excess hydrogen is emitted, is this what the test is picking up? More on this theory to follow too once I can find a readable article on metabolic acidosis.

But my biggest theory is "the simple diet". It is an idea used for horses to help them digest food better. Basically I think for their taxed digestive systems maybe for now the simpler the food the better, this maybe means not mixing too many different groups of food. And little and often. But this needs to be done when you have time as it will take alot of planning and time. I actually have a set weekly meal planner for Meg for now and actually it works well on many levels. She knows what she is getting and she seems to thrive so much better on routine and things happening at the same time each day. It also saves me having to think up food all the time and planning for shopping. Hopefully after a while a clear pattern may start to show up too..... but as the reaction can take a few days to build up this may take longer. Need to rehash diet now putting changes back in but will post it when I have done it, see if anyone can spot any flaws please.