Behaviour management.

[Charlie Arnold]

What is being a 9 year old, what is being a fructose sensative child. This is a constant dilemma.

I now know, most of the time, when Megs is on a fructose reaction. She starts kicking off at the slightest thing, almost like toddler tantrums, takes everything the wrong way and cannot get anything right. Shouts and screams and bursts into tears. sometimes, it takes me quite a while to twig that this is what is happening as it builds up. At these times I have to become smiley, saintly mother whilst at the same time wanting to wring the little darlings neck as I find getting cross or telling her off just makes things worse. But does this just teach her its ok to do that when she is feeling rough. I try to calm it down, distract her, sometimes I just have to walk off and count to 100 backwards in french almost before I explode!!!!

But sometimes she is just being a 9 year old pushing her luck and it is hard trying to guage which is which.

We are on a major food reaction at the moment, something to do with a large slice of sticky chocolate cake eaten at a friends house. Sometimes I am cursing the idea to try the low fodmap diet as it has opened up her options and now she has discovered cake and chocolate there is no stopping her. Until last year she would never have dreamed of eating anything not OK'd by me. But then I don't want to restrict her unnecessarily as it was hard to keep her going on the original diet.

How do others cope, any hints welcomed, Right off to sort another tantrum

[Charlie Arnold]

Thank you so much for this info Lucky, I am so glad you came onto this site, your experiences are helping me make sense of things in my exhausted fuzzled state.

The loving thing is interesting, since we started the fodmap diet she has been sidling up to me alot more flinging her arms round and saying she loves me. Now, we have always been close and happy around each other and cuddle up on the sofa alot but she has never really been one to kiss me and say she loves me, until recently. I will keep an eye out for patterns there now.

Megs is definately very sensative to fructose so I need to start restricting back down now before she gets too fond of the extra foods. Funnily she is actually starting to turn down somethings herself now, tomatoes, and grapes she says make her tongue tingle. I wish chocolate did the same, that will be her undoing. Can you add to the chocolate post in safe ingredients if you have found safe sources please.

[FMmom]

I've found it almost impossible to sort out everything that is happening to Kaelin. I feel a deep responsibility to unravel all of her behavioral symptoms because I'm the only one who seems to recognize the clues.

She's always been an overly active kid -- but the telltale sign that her activity level is an FM reaction is when she lies on the floor and rocks, throwing her legs over her shoulder.

Sadly, that is the ONLY surefire way of knowing that something is off. When Kaelin says mean things or says "NO!" when I ask her to do something, I feed her. Nine times out of ten, her behavior improves. Of course, this is rather tricky first thing in the morning because she has to take medication on an empty stomach and not eat for at least 15 minutes. And it's tricky when she returns from school because she hasn't eaten for almost eight hours (she won't eat lunch no matter what I send) and then getting her to settle down enough to eat is extremely difficult. She is in tears and calling me names and refuses to put a bite of food in her mouth... But three or four bites of steak and she morphs back into her normally delightful self.

When Kaelin has eaten salicylates, watch out! She is mean, argumentative, loud, agitated, hyper, giddy... She just seems possessed. And of course, her sister insists on feeding her things like peppermint drops or gum, then complains about her behavior and expects me to punish Kaelin. How can I punish behavior that she has no control over? And yet, knowing what will happen when she eats that peppermint drop, how can I not hold her responsible for that choice?

For months now, Kaelin has mentioned leg pain and that has been steadily getting worse. Now her arms and back hurt as well. She's tired all the time -- and when she gets tired, she gets more hyper. And last week, we added one more symptoms: Kaelin says she blanks out and forgets everything that just happened. Those symptoms could be related to FM, salicylates, or CF that she's been diagnosed with or possibly hypoglycemia or celiac that her doctors suspect. We saw a Metabolics/Genetics doctor last month and she thinks Kaelin could have Mitochondria.

I don't know how to separate out what is being ten vs a symptom of one of her diagnosed disorders vs a suspected, yet undiagnosed disorder. So I assume it is food related and insist on her eating some protein and things generally calm down. And I try to do that at the first sign of a problem -- if it goes on too long it may take days to break the cycle.

[Charlie Arnold]

Is there anything the school can do to break the problem of her not eating at school, rewards or praise, that would help her balance out more over the day, if she is getting hypoglycemia then that is way too long for her to go. Do they have school dinners , maybe you could provide her with the same sort of dish, just her version. Or, set up a plan where she sits in a safe area of her own to eat, at Megs school there is a boy with Aspergers and he will not eat in public ever, but the school give him his area on his own or with one friend and now he eats fine.

There is definately an art to spotting the triggers, now Meg is on the fodmap diet I am seeing alot more reactions, crying, tantrums, blank episodes. But it is no good just me seeing them to get to the bottom of it, but I think she is now showing more at school so they are starting to work with me more. Once we can work out exactly what is going on then we can set up appropriate strategies.

I do think you need to deal with the sister feeding issue maybe punishing the sister. After all, she is feeding her a toxin (I assume she is old enough to know its wrong) If Kaelin had a peanut allergy her reaction would be immediate and life threatening so you certainly would never allow her to give her those, fructose is exactly the same, just slightly more time delay but down the line could be having just as drastic effects on her body.. The whole family has to take responsibility for keeping Kaelin healthy, like it or not, she is a needy part of the family that needs nurturing.

Meg gets alot of pains that she suddenly complains about, her ankle, her knee, her neck, I think it is all reactions to food but I just note them and move on as they do wear off, I don't make an issue of it, just keep an eye. But I do make sure she is drinking enough fluid when they are bad.

[FMmom]

Egad, I wish there was something the school could do to help. I've done everything I can think of:
-- eating in the nurse's office so she could make sure Kaelin took her medication (that was just sad to see Kaelin sitting at a table by herself while sick and injured kids swarmed around. I put a stop to that.)
-- teachers instructed to make sure she eats in the lunchroom. Total fail, no one has the time to watch one student
-- allow her to eat lunch in the classroom during work time (she won't)
-- taking her to the grocery store to pick out items she wants for lunch
-- having her make her lunch so she's getting exactly what she wants
-- giving her a HUGE breakfast so that she can get through 8 hours without another meal
-- giving her a small breakfast so that she's really hungry at lunch and wants to eat
-- reward/punishment

Nothing has worked. Nothing. I've talked to teachers, the school nurse, the school psychologist, her pediatrician, her gastroenterologist, and a social worker at Children's Hospital. They haven't figure out anything either.

This Friday Kaelin has an appointment with her pediatrician and I'm going to talk to her again about what she can suggest for Kaelin (she used to be a lunchroom volunteer at Kaelin's school, so she's seen for herself the lengths Kaelin goes to to avoid eating.) We've talked about hypoglycemia, but Kaelin's never been tested. The doctor said that a lot of times, the testing isn't accurate because it can't recreate the situations that she actually goes through.) So I'm going to ask about doing the blood sugar monitoring throughout the day. Maybe if Kaelin has to go to the nurse a couple of times a day to get tested and then has to eat in someone's presence, that will finally motivate her to just eat when she's suppose to eat.

If you have any thoughts on what I'm missing here, I'd sincerely LOVE to hear it. Next year Kaelin goes off to Middle School where they are much more on their own and have even less time to eat. She cannot stand feeling rushed, so I don't see how this is going to improve. Ugh.

And as far as her sister feeding Kaelin... I'm taking some of the blame for that. The schools take food allergies very seriously, so the kids know that someone could die from eating the wrong thing. When Kaelin was first diagnosed with FM, she worried that she could die from eating. I assured it wasn't the same thing at all -- and I've had trouble getting either of the girls to take it very seriously since. But you gave me the perfect word: toxic. This weekend I did talk to both of them about how there isn't any immediate and scary issues like with allergies, but her body is reacting in other ways and she still needs to avoid the food. Time will tell if this got through to them in any way.

Unfortunately, Kaelin has heard her doctors say that this diet isn't medically necessary. I have a hard time understanding that. She was sick for six days after the hydrogen breathe test. Doesn't that somehow imply that her body is reacting? She cannot gain weight -- and when I stray completely off the diet, she loses weight. Again, doesn't that say her body is reacting? I realize that the doctors are telling me that her liver isn't being harmed like it would be with HFI or that the villi are being damaged like with celiac. But I'm afraid that they really don't know the answers yet -- I think that they may yet discover that there is this condition in-between HFI and late-onset FM. (But I'll take that discussion over to your hereditary vs acquired thread since this thread was about behavior...)

[Charlie Arnold]

Oh, Fmmom my heart goes out to you, this is a very difficult and sensative problem.

Certainly I have found Megs gets stressed with parties and socialising when it comes to food time just because she has always had to have her own food, or we have to go through the rigmarole of double checking the menu which I think she finds embarassing, esp when they will insist on saying oh you poor thing at the end!!

I have a few questions for you

Is it only at school that Kaelin won't eat in the day? If she eats elsewhere then you need to ask her how she feels about eating at school etc. and how she feels things can be improved.

Was there anything that happened that triggered it all off?

Does the medication affect her stomach, ie does she feel rough from the side effects and maybe this kicks in by the time she eats eg appetite inhibitor. There may be something they can do to help settle this side effect and therefore she will then enjoy her food. Let me know which medication she takes if you like and I will look it up in my pharmacy book.

I would be cautious about testing her blood sugar at school if she is already struggling emotionally with her disorder, it could be painful for her and that may just create a whole new problem. It would be a big case of weighing up the pros and cons there.

As for how far do we go about the consequences of breaking this diet, this is hard to answer as the truth is we just don't know. I think as Lucky has found with her son, some of these kids are alot more reactive than others and need really limiting, almost like they are midway between HFI and FM, but if they are better on the diet limitations then that has to be healthier to limit maybe with the occasional break for a treat or in a situation where nothing else is available.

I think you need to get to the bottom of what is going on in Kaelins head first, how she feels about food, eating etc. Maybe get her to write it down if she doesn't want to talk. Does she have a good imagination, she could write as though she is another child with that problem and how that child feels and what she would do to help her. Just an idea. this is a very tough problem to deal with because they just aren't old enough to realise consequences of things and ADHD makes this even harder as they tend to live for the moment.

anyway, fill us in a bit more if you feel like it, do it as a private message if you would prefer not to share it on the board but I think Lucky may have some good ideas for you too.

Good luck with the paediatrician, we are seeing what is called CAHMS on friday, they are child and adolescent mental health service. I am going to ask them for tips on socialising and improving Megs confidence. She hates going out anywhere new or busy places or with new kids. Sometimes I know she is just feeling rough or tired but other times when I think she will enjoy it she just won't go. Any tips for that anyone?

We can compare notes after Friday!!

[FMmom]

ah, the tangled web I must unweave...

It's not school that is the problem for Kaelin. There are two reasons why she doesn't eat there. The first is her overwhelming anxiety about being left behind. I think she's afraid that eating will take too long and she'll miss going outside for recess. When she was in third grade, her lunchtime was 10:30 so I had it written into her educational plan that she could eat in the classroom at noon-ish. She ate while doing classwork and she always ate the entire lunch (with encouragement from her teacher.) The following year her lunchtime was scheduled at noon and she didn't eat. The school didn't seem to feel as obligated about letting her eat in the classroom because lunch was scheduled at the appropriate time. This year the fifth grade lunch was switched around with fourth grade, precisely to make lunchtime at noon -- I believe for Kaelin's educational plan. I've tried telling everyone that the noon lunchbreak wasn't the key -- it's allowing her to eat in the classroom when she doesn't feel the pressure of racing against the clock. But for two years, she's had to eat in the lunchroom or go hungry.

The second issue is that she eats slowly, which is why she's so concerned she'll be left behind. It used to take her 30 minutes to eat two eggs for breakfast; she'd spend over an hour at dinner. There didn't seem to be any reason for it -- it's not like she enjoyed the attention of holding up the family by eating so slowly. It wasn't an issue of hunger -- she cleaned her plate and often asked for more.

When Kaelin took the hydrogen breathe test, she almost threw up halfway through the drink; within 30 minutes her poop had turned to water. Yet when the nurse asked her how she was doing, she said she was fine. I said "does your stomach hurt?" and she said "I always feel this way when I eat." Sigh

After three weeks on the FM diet, she didn't ever say that her stomach was feeling better -- but suddenly she was eating breakfast in five minutes. She was asking for thirds at dinner yet eating in twenty minutes or less. Who knew!?!? She was eating so slow because food hurts.

The following week, our heater started depositing soot all over the house and we had to live in a hotel for a month. Following the diet was impossible -- and her eating slowed down again. She was no longer asking for thirds or even seconds. But she never mentioned that her stomach hurt.

Once home, we started the diet again and things improved, but then one morning she came down in tears and said her stomach hurt. And it's never stopped hurting. Ever. In her ten years, she's only had a couple of weeks where eating hasn't hurt. And this is why it is so very hard for me to figure out how to feed her. This is why she cannot self advocate -- she really doesn't understand how she's supposed to feel.

I mentioned having her blood sugar monitored throughout the day. Yes, it is partially so that Kaelin can see some tangible symptom that she can only control by eating. But another part of it is so that the school nurse and her teachers take this much more seriously and make time available for her to eat. And it's partially for me -- just some other way to sort out what is happening to her because she just can't tell me herself...

The salicylates affect her behavior, so I've eliminated those to the best of my ability -- but the foods that "merely" hurt her? I still don't know what they are because everything hurts. And on top of all this, her gastro doctor is hugely, hugely concerned about her weight. In the six weeks between appointments, Kaelin lost one pound and grew a half inch. Her body mass index dropped horribly -- and a healthy bmi has a direct correlation with the health of her lungs. This week she's been spitting out yucky junk tinged with blood -- I think it's from her nose, but it could be from her lungs. Her legs have been hurting for months; now her arms and back do as well. She is tired all the time.

And last week she told me that she "blinks out". Her preschool teacher had mentioned that she was concerned that Kaelin may be having petit mal seizures. The pediatrician said that those can be induced by blowing on a pinwheel, which I never bothered to do. So when Kaelin mentioned the blanking out, I had her try blowing and she started reeling and said she totally blinked out and couldn't remember anything that just happened. Yesterday she said it's now happening "all the time". She feels like she's in a dream about school instead of being in school.

It's hard to imagine that all of this doesn't affect her eating (as a matter of fact, her gastro doc is trying to get us into the growth and nutrition clinic because they also have a psychologist -- but they only treat kids six and younger...) But honestly, other than the fact that it takes her so long to eat, she doesn't seem affected. If it hurts like hell to eat a brownie, she'll push it away. But tomorrow night, she'll try again.

She did eat her lunch on Monday and I could tell as soon as she stepped off the bus. She was bursting with energy and excitement as she ran up to the house. She threw her arms around me and gave me a kiss. I told her that I would make a steak for a snack and she said "okay" rather than her usual arguements about eating. After eating the huge steak, she asked for another snack. She ate a big dinner. She was kind and loving -- and focused -- all day. She volunteered to go to bed because she was so tired. And she was positively delightful in the morning. She got dressed without reminders, she ate breakfast and asked for more, she hugged me goodbye and gave me dozens of kisses. I've never seen her act like that!

But then she went to school and didn't eat lunch which I could also see as soon as she got off the bus. She was frantic, she said something mean about her sister as soon as she got inside, she refused to eat the lunch she brought home, she argued about eating a snack. She got candy for Valentines and she ate a ton of it (I threw it away, but she got it out of the garbage can when I wasn't around. I never expected that!) She couldn't fall asleep last night and this morning she was talking a mile a minute, she had trouble pulling her stuff together for school because she'd forget what she was doing. It's going to be a few days before she is able to get it together.

I don't know how to unravel all this. I don't know what is FM or salicylates or hypoglycemia (or just too darn skinny with no "reserves" as her pediatrician always says.) I don't know if her muscle/joint pain is related to FM or if it's celiac or mitochondria (we have a followup with the Metabolics doctor next week.) I don't know if she has no energy because of the any of the above listed problems or it's because she isn't breathing well -- or if there is some unknown problem. I don't know if her misbehavior is salicylates, exhaustion, being 10 or ADHD. Throw in some issues with her sister and a husband that travels for weeks at a time (he's currently on a five week trip) and I give up hope that we'll ever get this figured out...

[Charlie Arnold]

FMmom, can I send you a big e-hug too, this is such a difficult issue but one, as Lucky has so eloquently put it in her last post that maybe we can all help with together.
I can't help from experience as Megs has never been difficult to feed but I do notice whenever she is on a reaction that her appetite diminishes and at these times I coax her with milk and small marmite sandwiches, or even just bread and butter. Then build it up with readybrek which is an instant oat breakfast you just add milk to. In fact at one stage I used to give her readybrek every night before she went to sleep and I do think that helped her stay asleep and wake up better.
I won't clog this post but I am starting to invent some power shakes that are safe for FM. First thing in the morning I feel if I can give Meg something like this and wake her up a little bit earlier to drink it then let her relax in bed with the telly on then maybe at getting up time she will have more energy. Often in the morning she wakes up in a rage and washed out and then takes forever to eat her breakfast if at all. This is classic hypoglycemia but at the moment I haven't a hope of getting near Meg with a needle. I might have a chat with the school nurse as I gather they do lots of child friendly ones in diabetic clinics with pretty colours so that might help.
I have a feeling you said Kaelin is lactose intolerant, I'll check back so you may have to use lactose free milk but maybe a shake that she can sip on at school might help keep the system topped up better and she can make it last. I can believe how unsupportive the school is, I have had lots of battles to be able to provide Megs with an adequate meal, just because this is such an unusual disorder. I bet if any of these kids were diabetic all procedures would be in place within seconds. Actually one of our school nurses did stress to the school several years ago that it was just as important as though she was diabetic which made them sit up and listen, but why can they not listen to us as parents. It is so frustrating but we must perservere for their sake and their future health and happiness. Hopefully through our experiences and battles we can help future generations not have these struggles.


On a lighter note - now this is just being a kid.

Meg had next door child round to play yesterday and a friends daughter childminded so I could work as we are on half term break. I had stupidly left lots of polystyrene packing in the bathroom after unpacking the contents of the box. Meg cautiously asked me later in the evening if I had seen her bedroom. "OH, well done have you tidied it "says I, (her bedroom has become a permanent tip recently). "Erm, no" says she, next door having beetled home as soon as my car arrived 'not feeling well'!!! So I went up to see. "It's snow" says she!!! The entire bedroom was covered in little white polystyrene balls. Next door, feeling better this am and she spent several hours this morning picking up 'the snow'!!!!!!!

[FMmom]

Lucky, you're not intruding at all! You've provided a lot of information, all of which is extremely helpful. It's late at night so I can't really answer any of your questions right now, but I just wanted to say thank you. I'm so grateful to have all this before seeing the doctor tomorrow. And I have some questions about the mitochondria before seeing Metabolics next week. It's so nice meeting you!

Charlie, good luck with the doctor's appointment tomorrow. I hope you get some answers. And I loved the snow! Too funny

[FMmom]

The Glycogen Storage Disorder looks interesting... From what I'm reading, it's generally diagnosed in infancy and it's done through blood tests and imaging. Kaelin has had a ton of ultrasounds -- I wonder if this is something a doctor would recognize when looking at the ultrasound or if it's something they specifically have to test for (I read that they "measure the liver and kidneys", and I don't think that has ever been done for Kaelin.)

When we first met Kaelin in the orphanage in Russia, we took her to the American Clinic for a checkup. We were told that the rash she had was probably a milk allergy, so we should get her soy formula. We bought a six week supply -- and then we had to go home while Russia finished their paperwork. Three days before we were supposed to return, we were told that Kaelin was in the hospital and we may not be allowed to complete the adoption. Horrible, horrible period... Anyway, we came to find out that this was her second trip to the hospital since we left, both times for diarrhea. The hospital did not use soy formula for her, they fed her milk formula and she recovered from the diarrhea to return to the orphanage, where they gave her soy -- and went back to the hospital.

We had Kaelin tested for a soy allergy (including a skin prick test when she was seven) and there is no allergy. Maybe it was some other ingredient that was making her so very sick, we have no way of knowing. Maybe it had nothing to do with the formula at all -- when we brought Kaelin home, she slept about 20 hours a day. I had to wake her up to feed her. She was always shaking, just this constant shimmy type of shake and she would clutch onto that bottle and draw in that formula as though her life depended on sucking in down in 30 seconds or less...

I wonder if her doctor would have felt differently about that shaking if she hadn't just come out of an orphanage in Russia? The assumption was that she was just starving (she was eight months old and eight pounds -- 3.6 kg) and making up for lost time. But maybe there was something more going on and we were missing the signs.

Even as a toddler, Kaelin continued with that shaking and never-ending hungry. When she was in pre-school, I was honestly afraid that her teachers were going to turn me into child services for neglect... They said that as soon as they set out snack, Kaelin ran to the table and continued eating, even as they tried cleaning up from snack. No other child went to the table unless instructed to. They told me that I should consider giving her breakfast. I am!!!! A huge breakfast, huge breakfast. And I had to bring a snack for the 10 minutes drive home because she couldn't last until lunch.

Kaelin was only 28 pounds (12.7 kg) when she was five. We had a new pediatrician at that point and she was concerned about Kaelin's weight, however, Kaelin was "holding her curve" on the weight chart. But we never talked about just how much food Kaelin needed to get through the day.

When she was diagnosed with pancreatic insufficiency at seven, all the shaking stopped. She didn't need to be fed every 90 minutes. And now all the foods issues became apparent. Her gastro doctor said "for what it's worth, I believe you" but he couldn't explain it. We tried a feeding tube (running through the nose, which was oh so fun for a third grader...) and that backfired. Kaelin ended up losing weight because she just stopped eating during the day. Then we tried foods that were designed for stabilizing blood sugar, but her behavior was worse than ever.

I discovered Fructose Malabsorption and mentioned it to the nutritionist. Whatever reservations she may have had, she quickly set them aside when she witnessed Kaelin going from a calm, quiet kid to a monster as she ate the snack bar. She must have sent a note to the gastro doc, who then asked a bunch of questions at the next appointment. Did Kaelin have stomachaches, diarrhea, etc. etc. etc. He said that he couldn't defend this test to his colleagues, but Kaelin has always been so atypical, so let's do it.

I would love to have seen his face when he read the results on the hydrogen breathe test, which ranged from 189 to 230 -- no mistaking those results!

And that's where we find ourselves right now... Most definitely FM, but seemingly something else must be going on. Her stomach pain remains, she cannot put on weight, her moods still change if she doesn't eat regularly. And she has some learning disabilities, so getting clear information from her is often quite hard. We just don't have a clear picture. It's almost as though I need the disease first, then see if she fits because she cannot tell me the symptoms she's having. It's just the way she's always felt, her entire life. It seems normal to her.

Kaelin has had a number of full-range blood tests. Her gastro doc is constantly monitoring her vitamin levels. I don't know if the electrolytes is part of that -- but for some reason, I vaguely remember her gastro doc specifically mentioned her electrolytes, but I could be wrong. She does have asthma and sees the pulmonologist every six months. I don't know what tests the Metabolic doctor ran, but I guess I'll find out on Tuesday...

[FMmom]

Wow -- I can't believe your daughter started growing again at 18! How amazing, how wonderful!

Forgive my confusion here -- are you still looking at all of the various fructose-based disorders for your son? Or does he just have a very severe case of FM, which brought about the hypoglycemia? I'm curious because I can't figure out if there is more going on in Kaelin than I'm aware of (quite possibly) or if I'm just not doing an adequate job of helping her with the FM (absolutely true).

Our pediatrician referred us to Metabolics because she thought that maybe a Metabolics specialist could tie all of Kaelin's weird symptoms together. (She had borderline sweat tests and they found one CF mutation, so she's been diagnosed with atypical CF because it explains the pancreatic insufficiency and breathing issues -- but doctors remain skeptical.)

The doctor did suggest Kaelin has mitochondria because it does tie together the PI, the pains, the failure to thrive, etc. But she said it does not explain the FM. Hey, it's entirely possible that Kaelin has two unrelated conditions. But as I read up on mitochondria, I see that there is a carbohydrate metabolic condition. Still, it doesn't sound like that would take the place of FM -- there is no doubt about Kaelin's hydrogen breathe test results.

We see Metabolics on Tuesday and I have a thousand questions, but not a single one that I can ask in a coherent way. I feel like a babbling idiot when I try to discuss any of this with the doctors. And sadly, I feel like I understand it better than they do sometimes. I mean, they know the biology, but they don't have any real world what-happens-when-you-eat type of experience with it.

Does you son follow kind of a hybrid FM and HFI diet? As you mentioned, they seem very different. I'm starting a thread over in Misc to ask a bit about that.

[FMmom]

Thank you! I did send you a PM for any suggestions on questions for the Metabolics doctor...

More and more I'm thinking there is some disorder halfway between FM and HFI. It sounds like there is a huge difference between adult-onset FM and those that get it as a child (or more likely, had it from birth).

Kaelin has never been tested specifically for HFI -- there didn't seem to be a need once she was diagnosed with FM. She has had all kinds of blood tests over the last three years; I'm wondering if there would have been some indication of HFI by now (as in, bloodwork outside the range of normal, sparking an investigation by the doctor. Or is HFI something that has to specifically be investigated and the standard blood tests would never uncover any problems...)

The thing I've heard from a few doctors is that HFI is diagnosed in infancy -- and if it's not, the child will die. But I've read several cases where that isn't true. The same thing used to be said about Cystic Fibrosis, but as they learn more about it they are discovering they used to only know about the most severe cases. Now they see there is a wide spectrum of CF. I have a sneaking suspicion that HFI will be the same. I'm not sure how the positive hydrogen breathe test will factor into that -- supposedly a positive on that means that she couldn't have HFI. But maybe it's possible to have both...

[FMmom]

Ooooh, guess I should definitely tell the Metabolic doc that this afternoon Kaelin mentioned her heart started hurting... It was a passing thing, but certainly a new complaint. (she has mentioned her heart beating really fast at times, but it was first mention of actual pain.)

I just got on to MyChildren's (where i have access to Kaelin's Children's Hospital records...) and I see that gastro doc ran an extended Chem 7. Sodium, potassium, glucose, etc are all within the normal range. so it looks like Kaelin's electrolytes at good

I see that the tests the Metabolic doctor ran are back, but no results are posted. (scanned labs are never posted, so i'm not reading anything into that...) She ran Carbohydrate Deficient Transfer. I hope it was a full range of conditions being tested. Should be interesting to hear what she has to say -- the assistant called to reschedule the appointment and got so flustered, she completely unnerved me. She said she could reschedule the nutritionist as well. I said we're not seeing a nutritionist in Boston, is there a reason we should be? She became kind of unglued and said we can just talk to the doctor about that... It probably meant nothing, but it was definitely weird.

I've never liked mysteries -- not in movies or books and certainly not in little kid's health...