I just need to vent

[FMmom]

I had such high hopes that I could make progress this summer, figuring out all the little intricacies of Kaelin's food issues. Instead I feel more frustrated and confused than ever. I'm trying to be all things to all people and I never succeed... I go to bed every night thinking "who have you failed today?"

My older daughter was so frustrated that she ends up with such a limited diet because Kaelin can't eat anything. She loves fruit, but I never stock it. She loves corn chips and salsa, but I don't stock it. She wants to bring an energy bar when she goes on long bike rides, but I don't stock it. There were scenes and resentments and anger and fighting...

Personally, I can't blame her for being angry. It's like she's being punished because Kaelin can't/won't control her eating. So I began stocking some of those items and then occasionally I'll let her buy some candy. But god forbid if she brings home a stick of gum or something! Kaelin flips out, screaming how unfair it is, then big sis screams that she never gets anything, ever, because of Kaelin. Then they both accuse me of favoring the other kid. Ugh!!!!

The pediatrician and gastro doc want Kaelin off the FM diet because she so desperately needs to gain weight. Her BMI percentile is 1; her height percentile is 8; her weight percentile is .61 -- that doesn't even appear on a chart; she is and always has been "off the charts".

Her pediatrician thought that maybe buying lunch at school could help Kaelin both socially and with her weight (as in, maybe she'd actually eat the meal...) But it's not going so well. Every afternoon Kaelin comes home just wired. She's bouncing off the walls, she is chewing her hair and her shirt (yuck, yuck, yuck!). I haven't seen these behaviors since beginning the FM diet.

Kaelin said that the cafeteria lady told her that she HAD to have either fruit or a vegetable -- Kaelin couldn't take her tray until she chose one of the other. She's not the kind of kid who would explain that she can't eat those foods (and by the way, yes I have let the school know that she can't, but this is standard policy and they don't seem to know that Kaelin is the child with the food issues...) Kaelin has had an orange, some carrots -- and I don't know what else. She's eating a Caesar salad every day (supposedly).

She's lost 1.5 pounds since starting school. She also hasn't taken her enzymes (never with lunch and often I find them on the table after she left for the bus.) She's still a little nervous about being in Middle School... So I have no idea what is the cause of all of her hyperactivity and hair and shirt chewing. I don't know if it's food, hypoglycemia (since she's not taking enzymes) or if it's totally unrelated to food -- maybe it's the ADHD and/or the anxiety that's causing all the behavior issues.

I just don't know how to track it. With ever fiber of my being, I think it is food related. I don't see this type of behavior on weekends -- usually. Sometimes Kaelin gets into something she shouldn't and then she acts exactly like she does during the week. I use Mio (a flavoring added to water) and apparently Kaelin has been drinking a few sips without my knowledge. Omigod -- her behavior is atrocious after drinking that! (Water, Citric Acid, Propylene Glycol, Malic Acid, Contains Less than 2% of Natural Flavor, Sucralose and Acesulfame Potassium (Sweeteners), Potassium Citrate, Red 40, Blue 1, Potassium Sorbate (Preservative).

I cannot increase Kaelin's weight and keep everyone in the family happy and keep Kaelin's behavior under control and somehow let her fit in at school by buying her lunch...Something's got to give. Which is the most important? Clearly, the expanded diet isn't helping her weight -- but even with that, I can't figure out what to feed her. Things that should be okay, like almonds and pistachios, just aren't. If I only gave her what I absolutely know works for her, she'd be eating strictly eggs, beef, chicken, pork or fish. Cheese is sometimes okay, but mostly not. And on top of all this, I know that sometimes there is a delayed reaction, so maybe that hunk of cheese wasn't so bad, maybe it was something she ate yesterday. Arrrgggghhhhh!!!!!!!

I wish I could say that I feel better just ranting -- but I'm so frustrated with everyone and everything right now. I'm trying to follow doctor's orders, but nothing seems to be working. I still desperately think this is CSID, but I can't prove it. I found a website with lots of CSID recipes, but it uses a lot of almond flour and Kaelin cannot tolerate almonds (maybe because of her tree allergy?) Without almond flour, Kaelin's diet would be so restricted that her doctors will just freak out. Not that I'd blame them...

I don't know -- maybe I'm just crazy. Kaelin's pH level is 6.8, which while below the "norm" of 7.0 is well above the 6.0 that would indicate CSID (but the pH level is not considered a good indicator). The endoscopy said that her sugars were normal, but it has to be taken from a specific area and I don't know if that was done. So I have everything telling me that Kaelin doesn't have it, but I can't let go of this. Her inability to handle table sugar and most starches, the CF diagnosis that the doctors can't quite believe...

I'd love for Kaelin to get the breath test, but I'll settle for trying the Sucraid. I have no idea if gastro doc considered it or not. I hope he did okay it -- and I hope he let the pediatrician know because we see her next week.

Ugh -- food issues that cause behavior problems, actually conditions that are behavior problems, allergies, fructose malabsorption, CF, pancreatic insufficiency... I just can't seperate any of these things from one another and make sense of what Kaelin is going through! I'm slowly going mad!!!!!!!!!!!

[Charlie Arnold]

Oh Fmmom, I want to give you a big ehug at the end of every sentence............. I am so sorry you are still having so many hurdles.

School, what are they thinking, that is a nightmare. Would they force peanuts on a nut allergy kid if it was on the menu every day?

As for the doctor, does he not understand that she is better off fructose for whatever reason. It is going to take so long for her body to heal for weight gain to work that she needs to be off probably for years. If she goes hyper every time she has the wrong foods then of course she is going to lose weight, she is burning calories every second.................

You must go with your instincts with that one. If the diet works, then you need to ignore their insistence really and feed her what works - obviously within reason. Find a middle ground maybe, but don't let them push you down the wrong road that wrecks all your hard work through the summer.

My next bit is regarding the girls. I'm going to be a bit tough here................. Your older daughter needs a big reality check I'm afraid. Yes, it is tough having to put someone else first but when it is related to health you just have to learn to do it and to hell with your feelings. It is hard, it is natural to resent if it affects your life but at the end of the day it is essential and she needs to SUPPORT YOU AND KAELIN through this and learn an essential life lesson - COMPASSION AND UNDERSTANDING OF OTHERS. If she can learn that then she will go a long way in life. After all, if the boot was on the other foot she would expect Kaelin to support her.

So you have to find a middle ground with this too.

Maybe when you are out she could buy herself a treat IF she has supported kaelin at home.

Get really inventive with your home cooking, I don't know what hours you work but this really is essential to survival to try and do some (please excuse me if you already do this) and get the girls involved in planning menus and getting ideas. Do you use glucose powder or cocoa powder, I seem to get away with a bit of these each day to give Meg a milkshake she she gets her "chocolate" fix.

Kaelin needs to slowly be trained in self control, understanding of her diet and how it affects her but also those around her when she doesn't stick to it and how others do have to go without to help her manage it. And I emphasise the word slowly, it will take a long time and needs to be done calmly and quietly with lots of praise. Do you have anything like a family support worker, we do and she was so helpful with routines, how to deal with sticky situations etc. You will have to really take deep breaths, walk away from situations to regroup (my kitchen surfaces get wiped alot!!!!!!!!!!!!!! ;D)

Anyway, do stick with it, you are doing a fabulous job and you will get there............. eventually.................. there is an answer out there, it is just finding it that is hard............ but you mustn't blame yourself or self doubt, you are absolutely spot on with your instincts so hang in there. But don't go mad........... please................. only sane people allowed on this board............. ;D

Oh, and make sure that you are getting a life, taking time to do something for you............. if you don't refuel you then you cannot keep up with everything else.......... And give your husband a kick up the **** where is he in all this??

[FMmom]

Charlie -- I've started and stopped this response a few times... As I read what I've written, I always seem to come off as defensive and who knows, maybe a touch angry. I'm neither. I appreciate the response and the advice. I just want to fill in some of the missing details (it's hard to vent in a few paragraphs. Trust me, I've written mini-novels about all the crap we've gone through!) So I'll just apologize up front if I come across as irritated or anything and I assure you that it's unintended. I can use all the advice I can get (and take all the ehugs offered!)

My husband is on board with whatever we need to do to help Kaelin. Whenever I get tired of menu-planning, I ask for requests and he always says "whatever is good for Kaelin". Sigh. If I knew what was good for her, I wouldn't be in this mess... However, he also travels a ton and when he's gone, he's gone for a month. And my older daughter is on the golf team this year and while we are totally thrilled for her, practice ends at 6:00 pm, which is the time that I should be making a nutritious meal. When my husband is in town, it's no big deal, but when he's not (like now) I have to either cook for Kaelin before picking up KT and then just trusting that she'll eat it while I'm gone or have her wait until we are home.

So the school cafeteria... The issue is that Kaelin doesn't have an allergy to fructose. I'm in a sort of weird place with FM -- an allergy requires forms from me and the pediatrician, and an epi pen registered with the nurse, and a medical plan for emergencies. We of course don't met that standard. Fructose is something that Kaelin shouldn't eat, but she won't risk immediate death if she does. So we have noted that Kaelin shouldn't eat anything with fructose -- but there's about 1,000 students in school so the cafeteria ladies don't know that Kaelin is the little kid that shouldn't be eating fruit. It's absolutely up to Kaelin to tell them. And she won't do that. And no one is standing over Kaelin forcing her to eat the fruit -- if she was too nervous to say "I'm the kid with FM" then she should give the fruit to a friend. But she eats it. At some point, Kaelin needs to take responsibility for this and so far, she's not. If I ever let her buy lunch again, I'll probably have to send in a photo of Kaelin and have them post it in the line so all the workers can see this is the little girl that can't eat fructose. Ha!

Unfortunately, it goes well beyond handing Kaelin an orange. Kaelin finally confessed that she's not ordering the lunches we agreed upon. She is eating a cheeseburger. I looked up the ingredients and the hamburger contains sugar and soy. Sigh. The buns are whole-grain. Again, sigh. It comes with fries and potatoes continue to hurt her stomach. And yet, that's what she orders every single day. So I finally told her the experiment is over -- she was wild beyond belief every afternoon, her stomach was "on fire, ready to explode", and she was losing weight. All in all, a dismal failure.

I began packing her lunch again and her weight has rebounded. I'm not sure if it's the food or if it's the medication (when she bought lunch, she never took her medication.) She's better behaved in the afternoons -- and she's no longer chewing her shirt on the bus ride home, so that's good.

However, just as I worried, Kaelin is no longer eating with any of the kids that she used to eat with. They buy lunch and she just roams around the cafeteria, looking for anyone she may know. I'm not sure why she can't stand in line with the other girls and maybe buy a milk or something, but she "can't" (I think she may mean "won't", but maybe the supervising teachers tell her to get seated rather than stand in line. I don't know.) Eating a better lunch has most definitely impacted her socially, which is the very reason that I was allowing her to buy lunch in the first place. Ugh.

Older sister presents another challenge that I've been unable or, maybe, unwilling to solve. KT is also adopted from Russia and we know even less about her background than Kaelin's. She also has Executive Function Disorder, she's also ADHD (more so than Kaelin), she's dyslexic -- and she's 14. She has never been able to distinguish one emotion from another; everything she experiences comes out as anger. If she's excited about going somewhere, she's angry with us for going too slowly or inhibiting her in some way. When she's frustrated with reading, she's angry. When she's overwhelmed, she's angry. You get the picture... And when she's angry, she's angry at Kaelin -- it just seems like a safe target for her. The other night, I took KT's phone so that she could concentrate on homework and she pounded the table and kicked the chair -- and then raged about Kaelin who was sleeping at the time. I've tried everything I can think to do, but she cannot seem to blame herself for her misery or blame me -- it seems safest to blame her little sister.

Now, I don't mean to paint the picture of this constantly fuming, emotionally abusive teenager. She's funny and charming and usually totally delightful. But I tell you all this to explain why I'm so ultra sensitive to her feelings of having to give up every one of her teenage favorite snacks because of her sister. I've removed all of the sugar, never blaming Kaelin's condition as the reason why, but I don't want to keep stoking the resentment by removing every single item that Kaelin can't have. That list is far, far too long -- and incomplete. I buy things that should be okay, but quickly discover that it's just not. (I did try to let KT buy junk foods at school, but she buys nothing except sugar -- no actual food, no fruit, not even potato chips or anything. Just one sugary treat after another. Ugh.) It's a very tricky balance to do the right thing for both girls.

So that's my background bits... Again, sorry if I sound defensive or anything, I really don't mean to. I know that I just need to get more assertive with my own daughter, with the school and maybe even the doctors. But it's just hard for me to decide on which bad choice I should make, which brings that least amount of harm...

With Kaelin's complicated history, I've never had a clear choice in anything. She is diagnosed with atypical CF, so as a preventative measure, she should be getting some type of lung treatment. However, everything we tried made her suicidal and homicidal (and I'm not exaggerating for effect!) Small doses of prednisone helped, but the pulmonologist said that the side effects from continued usage could lead to many other problems -- and eventually lead to where she needs ever increasing amounts. So, the single most important thing we can do to ensure Kaelin's continued health is to increase her body weight.

I'm ranting because just once I want to consider the actual dilemma without all the extraneous stuff. I want to FODMAP --> health. But it doesn't... First of all, I followed the diet pretty rigorously at first, but found there were a ton of things that were considered "safe" that Kaelin just couldn't eat. I never, ever got to the point where I knew what she could eat and what she couldn't. Maybe the FODMAP diet needs more research. Maybe Kaelin has something in addition to the FM, like salicylate sensitivity or food sensitivities due to the previously unknown tree and weed allergies. Or maybe Kaelin was eating things that I was totally unaware of and it never was an issue with barley -- it a piece of candy her teacher gave her. I just don't know.

So far, I see no short term benefit to the FODMAPS diet other than preventing some behavioral issues. (That's HUGE for me, but the doctors aren't quite as concerned about that.) So I have to guess which is more harmful in the long run -- eating foods that she's sensitive to OR being too thin. I don't know if eating sugar is doing some damage to her -- the doctors all say no -- but I do understand the multitude of problems she'll have if she doesn't increase her weight. It will lead to lifelong problems with her learning and quite possibly affect her lungs. On top of that, the stringent diet impacts her socially and increases the tension with her sister.

So that's my rant -- always feeling like I have to chose between the least bad option. I know FM will never be like this, but I long for the simplicity of strep throat. Easy diagnosis, firm plan for curing it. But with Kaelin, we don't even know precisely what we are dealing with. Maybe, but maybe not, CF. Probably FM, but it could be a false positive. Probably not Crohn's, but we'll explore it in more depth if some of these symptoms continue to crop up. All kinds of indications that she definitely doesn't have CSID and yet it would explain the CF piece and why she never gained weight after starting enzymes -- so let's keep that in the back of our minds...

And no matter what the real issue is, there is no cure; there is no firm diet. Everything is trial and error -- and understanding how best to help Kaelin hinges on whether or not she's giving me good information. She doesn't always report pain unless it's really bad. She doesn't want to tell me that she's once again sprinting for the bathroom when she eats -- she's 11 and doesn't want to tell her mom about her bathroom habits.

Sigh. I'm worn out. The doctors feel like time is running out for getting her weight up -- we are too quickly getting to the point where this is going to harm her. But no matter what I've tried (adding foods, taking away foods) she remains at a dangerously low BMI. I can't tell the doctors why. I just don't know why she can't eat foods like pistachio nuts. There's no fructose -- it should be an excellent snack. But it had her doubled over in pain and her behavior was atrocious. I want to scream.

What am I missing? I cannot give Kaelin a diet of nothing but meat and poultry. Salads bother her, most vegetables bother her, starches bother her. I don't see any of these diets that ever seem to fit her particular eating pattern. I'd think she was faking it if she was constantly refusing foods that kids prefer not eating. But she pushes away pasta, then brings it back saying that she loves it and wants to eat -- then pushes it away again. When she eats things that she claims hurts like mad, she can back up that claim with some nasty gas problems.

I don't know how to eliminate foods that hurt while getting her to gain weight and to also consider her social standing and relationship with her sister. Every question that I answer has about five subsets of questions that I must consider at the same time.

[Charlie Arnold]

Hmmmmm, you certainly do have your hands full. Thanks for filling in the gaps - I'll let your hubby off the hook! that must make things harder if he is away alot, I know what it is like coping on your own with it all as I am a single mum and it isn't easy, especially when you are tired.

I also understand how frustrating it all is when you think you are getting there, then you find yourself back at the drawing board............ again....................

So it is a case of little by little by little to deal with 2 different but actually similar (in my opinion) problems.

1. Kaelin's diet. It does look as though a low or no sugar diet and fructose free suits her. The problem is that isn't the end of the story with her as she has other things going on so her body is going to take a long time to respond and improve, we are probably looking at years.
But ................ going on a sugar free, fructose free diet gives you a calmer happier kid by the sounds of it. So you have to work slowly to build this up as much as you can, because if she becomes calmer and happier with life then you can start to help with other problems and slowly get her understanding and co-operation about it all. Also her sister will slowly learning that her sister is a much nicer and happier sister if she sticks to her diet. It will take longer for them to understand this and cope with it due to all their other issues and this is where you need some help. How do you handle it well when you are tired and frustrated.
How I did it............... and I haven't got the other child factor.......
A. I wrote out on little squares of paper every food that is safe, eg chicken, beef, lamb, rice, pasta, ............. you get the idea.
B. I put a basic meal plan together and looked at the interest fun factor to it. eg chicken - lets make home made nuggets or gougons with it. Rice - can I add turmeric to it for colour.
C. Then I looked at snacks, puddings, cakes etc. I do use glucose powder for Meg and she seems to cope with this as long as it isn't too much each day so she gets a piece of cake or biscuit. I add lemon flavour, or a bit of cocoa powder.

So it is a case of putting a menu together with damage limitation, as she gets bigger and older then we can risk a few extras but not yet.

Sorry if you know all this, I just thought writing it down helps.

So start as basic as you can and build up around that, the more rigidly you can stick to it at the moment the better.

However..............
2. The doctors want you to stop..... is it not having a big improvement because its not working or each time Kaelin breaks the diet she ends up back at square one................ only you know the answer to this and yes, you must take their medical advice on board but stand firm if you really feel the diet is working. The problem is in medical eyes a fructose free diet is not healthy, and for most it isn't, but for others it is and you need to now decided if it is better for Kaelin so you don't end up locking horns unnecessarily. If you have seen glimpses of an improvement you need to stick with it and convince them that it is necessary.

3. I apologise if my first response to your post showed a complete lack of understanding about your family situation. Yes, I didn't know the full picture and thankyou for filling me in, I hope I didn't stir up things you weren't ready to talk about but it makes things alot clearer.
The only bit I won't alter on is the absolute necessity of KT to understand how essential the diet is for Kaelin (and maybe elements of it for her by the looks of things). Yes, it is going to be a very hard subject to deal with as she doesn't see the world around her in quite the same way as others, but she can still learn the principles of considering others and the effects things have on them, it is just going to take alot of sensative but persistant, consistent emphasising and teaching.
Routines, rewards, quiet approach and praise. Cash rewards for every time she considers Kaelin's needs, outings on her own as a reward to eat what she wants. You need to divide clear time into Kaelin time and KT time, just as any parent does with multiple kids, they then feel listened to , cared about. Except when you do it you will have to be very inventive about it. And include the girls in the meal planning, and the cooking and shopping for it. Talk about foods and what is in them, what they like, how else could they get what they like, what could they bake at home that is fun.

I'm going to stop now, as I have to get Megs, but will have more of a think. I am really keen to help you through this but just keep running out of time. I hope I haven't just typed what you already know and I am sure you will get there, little by little. But believe in yourself, trust your instincts. Get good at taking big deep breaths ......................... I know I have................ and scrubbing the kitchen surfaces.

Take care, catch up soon...................
Charlie

[FMmom]

Just wanted to give an update on Kaelin...

I'm feeling much more positive this week. We saw the pediatrician last week and Kaelin gained slightly less than half a pound, yet grew more than 3/4 of an inch, so her BMI fell. All in all, that doesn't sound terribly positive, but I figure that although I have yet to prove what does work for Kaelin, I'm making some headway in determining what doesn't work for her. And adding back in everything except fruit is not working.

I told the ped that I think I'm going insane -- I swear Kaelin starts changing before she's even swallowed sugar. She can eat a scone or cookie and she will most certainly get crazy, but it takes a bit of time for that. Ice cream (or god-forbid, she gets ahold of some candy...) and the affect is instant. Like I said, Kaelin doesn't even need to swallow before her voice gets louder and/or her eyes start darting around.

The ped said that sugar enters the bloodstream in the mouth. (I knew that about HFCS, but I didn't realize that was true of all sugar -- I thought the over processed HFCS was particularly bad...) So, yay, I'm not crazy. However, she shouldn't be reacting to all sugars, no matter how minuscule an amount. Even with FM, sugar shouldn't be this difficult!

The ped said she did a lot of reading on CSID and agrees that Kaelin matches up to all the symptoms -- all of which are in her files well before I ever heard of CSID (thank you Lucky!!!!!!!!!), so I most definitely wasn't trying to portray Kaelin in a particular way to fit the disease. The one concerning thing, though, is just how rare this disease is. I mean, what are the odds that Kaelin will be one of only a couple thousand people so afflicted from around the globe? (Personally, I don't really believe the numbers... I think this is rare in the same way celiac was rare a couple of decades ago. Most doctors didn't know anything about it, so no patients had it. And then when the medical community learned about it and understood it, it turned out to be fairly common, relatively speaking...)

So she enrolled Kaelin in the test trial. Unfortunately, they only supply one week of medication -- and yet, their own website says it takes a couple of weeks to see any improvements. I'm not sure what we can prove in seven days... Some uptick in weight? Less stomach pain? Improvement in behavior? Sigh.

Charlie, thanks again for the link to the CSID board. I finally joined and I'm going to jump on there now to ask some questions about the medication (we only get seven days worth -- I don't want to spend the first four days of that totally messing up the diet!) I'm also curious about some of the symptoms. I wonder if ingesting sugar and/or starch destroys kids' behavior like FM does...

[Charlie Arnold]

Good luck with the drugs trial, go on the website and look in the files section. Someone there has listed a starter diet for CSID which may be worth trying to follow to make the trial as effective as possible.

Sugar definately affects the behaviour patterns of alot of kids but more for those that have a malabsorption problem of some sort, and if they are reactive to one -ose stands to reason they may be sensative to more. I certainly notice a huge change in Megs behaviour if she has some sugar. This wild look goes into her eyes, then she gets louder just as you have said about Kaelin. I now look at Megs and recognise the symptoms straight away.

Stick in there, stick to your beliefs and trust me - you are not going insane ...................... yet............................

[FMmom]

Just completed a four-day weekend and I thought I'd give a quick update on Kaelin's progress -- which happens to dovetail nicely with your questions, Lucky...

The Sucraid trail is supposedly one week, however, in actually it's one bottle of the medication which should last two weeks. I'll let the pediatrician know about any weight gains or losses this Friday and if she likes what she sees, I'll continue giving Kaelin the meds for another week. That should give the pediatrician and gastro doc time to discuss the initial results to see what the next step should be.

I wanted to be patient and not worry about results until Friday -- but I confess that I just couldn't help myself. On the third morning after starting Sucraid, I asked Kaelin to step on the scale just to see if she was up, down, or the same... Surprisingly, shockingly, Kaelin had gained ever so slightly more than a half pound. I know all about daily fluctuations and that I can't take this as a definite sign of progress -- but it was exciting nevertheless. And just for perspective, it took a month for Kaelin to gain her last half pound and she grew 3/4 of an inch at that time, so it doesn't really count...

The thing that made me so happy was that I haven't been feeding Kaelin more than usual -- and it's conceivable that the calorie content has actually gone down because I'm trying so hard to limit sugar and starch. And if I can't use sugar or starch, snacks become virtually impossible (she can't handle nuts or most cheeses) so this is just from meals.

Now, the negative part of this is that Kaelin tells me that her stomach is hurting. A lot. She mentioned it several times in the first couple of days to the point where I almost stopped the experiment altogether. However, I've noticed that I do not have to push her to eat her food. Normally meals last forever and I'm constantly asking her to hurry it along a bit. But now she's asking me to make lots of food because she's so hungry and she eats it all -- without prompts from me!!!!! So I'm a bit confused about the stomach pain. I would think that much pain would result in her not wanting to eat -- and the pain is worse after eating than before, so I don't think it's hunger pangs. It doesn't go away after using the toilet either, so I'm not sure it's constipation. (although both of those things may contribute in some way.) On the second day, she had a big dinner, then had popcorn (which she really shouldn't be eating) and then said she was still starving and wanted another snack. I assumed she was trying to stall going to bed, but in the morning she asked for a "HUGE breakfast because you wouldn't let me eat last night and I'm so so so so hungry." Despite having stomach pain.

By the third day, she actually had NO pain during lunch and no pain afterward. It did come back at some point and she still describes it as being much worse than before the medication. But again, she's eating so I just don't know what to think...

The biggest thing for me is that she seems much calmer. When she woke up on day three, she said "I feel calmer, do you notice that mommy?" I hadn't really noticed it -- but once she pointed it out, I absolutely did. It wasn't something that I expected and certainly hadn't mentioned it to Kaelin, so I don't thing this was something that she was saying to please me.

Then I decided to push that theory a bit. Vanilla ice cream is one of the things listed as possibly okay if taking Sucraid, so we had some over the past two nights. Normally, I can watch her eyes start darting around while she eats it and then the rest of the evening is just a nightmare. That didn't happen this time. At all. No weird eye movements, her voice didn't get louder, she didn't insult her sister, she didn't start crashing into walls or do eleventy-billion handstands... So, um, WOW.

We're only on day five so it's way too soon to even think about results. But the (possible) weight gain and the (definite) behavioral improvements is encouraging. I've read that changes generally aren't reported until you've been on Sucraid for a minimum of two weeks, so I'm hoping that means the pain will diminish as her gut gets a chance to recover.

So, yeah, Kaelin is VERY confusing... She has never, ever been on the weight chart. However, the pediatrician said that she was "holding her curve", meaning that her weight gains matched the curve on the chart, it's just that Kaelin's curve was below the 1% curve. However, Kaelin's height hasn't been as stable. Sometimes she's at the 1st percentile; once she made it to the 10th percentile; most often she hovers around the 3rd percentile. That wreaks havoc on her BMI and that's why the pediatrician sent us to specialists. Kaelin does grow, but both her pediatrician and gastro doc believe that she'd be a lot taller if her body was getting proper nutrition. It's really freaky, but Kaelin gets significantly more active when she's tired and when her little body is starved. Gastro doc said in his 25 years of experience, he's never witnessed nor heard about enzymes making such a substantive change to a kid's behavior. No one understands why her body revs up so uncontrollably from lack of food and nutrients.

Interestingly, I noticed something last week (before starting with Sucraid.) Kaelin was amazingly hyper when she was buying her school lunch. After two weeks, I finally said that she had to start bringing lunch from home and her behavior was significantly better in the afternoon. For a week. The second week I was seeing the hyperactivity, the rudeness, the inability to concentrate for more than a few seconds... It finally dawned on me that when Kaelin bought school lunches, she never took her enzymes. She did take them the first week she brought her lunch, but stopped taking them the second week. Gastro doc has been wondering if the enzymes are making any difference for her and I have to say they make a substantial difference in her behavior. My guess is some version of hypoglycemia -- before being diagnosed with Pancreatic Insufficiency, Kaelin needed to eat every 90 minutes or she was cranky and out of control crazy. Without enzymes, I don't think her body was getting enough nutrition (or any nutrition) from lunch.

And this weekend, her sister took her golfing. They had to walk, carrying their clubs. I saw them after they played seven holes and Kaelin seemed fine. I tried warning KT that Kaelin couldn't go much longer (way too much exercise for a lunch of a hamburger). By the 14th hole, apparently Kaelin turned into psycho girl. It was not pretty.

------ Update of my update ------
So I wrote all of that yesterday afternoon -- then had to step away from the computer because Kaelin was back to her wildly uncontrolled behavior. So very depressing! After four days off, she returned to school yesterday, so maybe it's not food related at all, maybe it's the anxiety of being in school and she "relaxes" once she's home... Maybe the Sucraid doesn't work like I hoped and Kaelin's managed behavior was all a dream... Sigh.

Turns out that Kaelin was eating a protein bar -- lots of stuff in there that she shouldn't be having... Ugh! I've taken such care to make sure there is nothing around that she can get into (I've been keeping KT's lunch stuff in the trunk of the convertible that is too cold to be driving now, so neither kid knows that I have it.) But Kaelin had us all fooled -- she stashed this bar a couple of weeks ago and began eating it Monday evening. This is why her stomach pain returned; this is why she was uncontrollable after school. (She started out calm when she got home, but somewhere around an hour afterward, she really cranked up.) Because eating these types of foods makes her lose weight, I had her step on the scale this morning just so I can note all of this in the missive I'm writing for the pediatrician.

On Friday morning, Kaelin was 53.7, then this morning (Wed) she weighed in at a whopping 55.0!!!!!!!!!!!!!!!! Wow, 1.3 pounds in five days!!!!!!!!!!!!!! I'm going to do a search of her room to make sure there is no more contraband and I think I got through to her to not eat anything that I haven't given her (at least through Friday morning...)

I'm not sure what happens next. This was strictly an observational experiment -- no blood work (which never showed any sugar issues, anyway) or anything else other than weight. I'll give the pediatrician all my notes on behavior, stomach pain and the ending weight. There is definitely enough Sucraid left for us to use next week, so I'll keep this going through next Friday. And that's the day we see gastro doc, so it should be interesting to hear what he makes of all of this... I truly don't know if the doctors were thinking the results of this experiment would be enough to diagnosis CSID or if they were just looking for some reason to test further. I'm afraid that I'll jinx it by saying it looks promising -- but Kaelin's rarely gained a pound in a month (even when she was an infant) so to gain 1.3 pounds in five days is astounding. It must mean something!

[Charlie Arnold]

Interesting........................

Sounds positive if mood changes were noticed by her.

The pain................ I should imagine it will take a long time for her system to readjust as it has had so much going on for so long so it may just be that....... did you find the file on the CSID site for the starter diet, you may find you do really need to stick to basics to start and low sugar etc. I should imagine vanilla ice-cream has alot of stuff in it and may be delayed reaction. But if she can break down foods better with sucraid then you have a good starter point from which to build but personally I would keep it really simple and as non-reactive as possible.

Fingers crossed though.

Yes, the anxiety may be a different issue, I was backed into a corner at the school meeting about Megs behaviour at appointments and when I thought back later over it, yes in stressful situations she does show more ADHD signs. But this is our big problem, we have so many other tangents with these kids, its a case of dealing with the basics then refining other things later. And by the sounds of it Kaelin is starting to tune into her own behaviour pattern which is a huge leap forward so well done her............ make much of it to encourage that to continue.

Keep us posted