lisa
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Posts: 215
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Post by lisa on Nov 4, 2006 10:36:00 GMT -5
"Hi, my name is Nate and I am an apple addict." I can just see him standing in front of a room and making that confession.
Seems like any other fruit or unallowed item, he is accepting of getting a no answer when he asks for it. When we have grapes in the house, he routinely asks for them and then laughs immediately after asking 'cause he knows the answer is no. Then he'll ask for a pretzel.
For a time, we were just not buying much fruit so that he wouldn't be tempted, but Ashley started having some health issues from not eating fruit, so it is constantly around and an apple is the easiest thing to throw in her lunch for snack.
On several occasions we have found him hiding in his room, under a table, in the closet, etc. eating an apple. Sometimes I don't find him eating that apple and just find the half-eaten remnants later 'cause he can't finish the whole thing.
Part of the reason I am bringing this up is for those of you that may be thinking DFI is more likely what your child has. While it's great that the worry is no longer liver damage, the aftermath is still no picnic for them or you. I was going through some of the original posts that Kristen and I made last year when Coley and Nate were detoxing and I feel like I am back there with Nate.
Since introducing cereals, strawberries, blueberries, and carrots into his diet positives and negatives have resulted. Positives: he's happy about food, there are more food choices, and regularity in the BM area. Negatives: Wants limited items all the time (and then the excess negates the BM benefit), sneaks food resulting in behavior issues & GI issues, some OK items are no longer appealing.
I'm tempted to go back to full restriction to see what happens. For some reason I am hemming and hawing over it though. Probably because I'll have a war on my hands for sure - at least in the beginning.
Anyway, I saw Sonia's post and was concerned about others who may be considering what we have attempted. You may get lucky and never run into this problem - I hope that's true.
If anyone's got any suggestions or comments I'd love to hear them.
Oh another question/comment. Our doc said that there is no way Nate could have HFI because he had never had a seizure. Seems like every doc has a different opinion of what the telltale signs are. For those with a definitive diagnosis, were seizures a problem for you/your child?
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Post by kristen on Nov 4, 2006 11:51:10 GMT -5
Just a couple comments.
When Coley has fructose, even allowable limited things on a restricted basis, we always go through a withdrawal period - still. He has behavioral stuff, sleeping issues, processing problems, etc. But then as he starts to come out of that he starts begging like an addict for things he knows full well he can't have, and will eventually try begging for things that are semi-allowable like oatmeal and spinach. I stuggle with it too, as weight is still an issue for him and his desire to eat is comforting. He even has a phase where he'll eat everything he can get his hands on...looks like that person that quit smoking and is substituting candy and nuts and gum and whatever else to satisfy the oral fixation... But for Coley this is good, it shows us that he CAN actually eat a portion that resembles a normal 3.5yo amount... Then, like you Lisa, I struggle with wanting to give it to him again...
As much as I'd love to give them to him, the thing that rings through my head a lot is that no food should send a person into a withdrawal if it isn't causing some sort of problems. Have you all heard the theory that alcoholics are actually intolerant...and there is a some thinking that allergies work in a similar way....no I don't trust the cravings! They actually make me feel like I shouldn't give him any ever!
As for the seizures, I know I've said this before, but I can not stress enough how 'invisible' Coley's seizures are. We see the aftermath of them, the confusion and tiredness and recognize that now...but when we were ever told that his brainwave activity was indicative of a seizure brain we were shocked. I still don't know what those seizures look like...but I think we may have had one last month. I'm just saying this to caution you...don't assume they aren't present, they can look like almost anything or like nothing to a person witnessing them.
And as for the comment about them being a necessary symptom, yep - another good one...but keep this in mind too - even with evidence of Coley having them no one can tell me what the trigger may be: the fructose in his blood, the hypoglycemia, the acidosis, the ketones...so how could they know it should be present...
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Post by Tammy on Nov 4, 2006 14:04:30 GMT -5
Ok, I just want to confuse this issue even more. I've seen the kind of seizures that you don't know are siezures. But NOT from Regina. A little girl that she went to school with was on seizure meds. When she would have one, she would just stare at you in a blank. Now, Regina does this. We call it a "processing problem" - it takes her a while to process her answer. Her CT scans show she DOESN'T have seizures. So even though she does the staring thing, she isn't having seizures. I mention this because I know some of your kids do the same thing. So again, maybe, maybe not. As far as your Dr saying it can't be HFI because of no seizures isn't correct. Regina is a confirmed case of HFI, and she never had a seizure. As most of you know, I have stated that she had 1, one time. This was AFTER the DX, after the "detox" and after an entire kit kat bar. This was the one and only seizure she ever had. So at the time of her DX, I can say she never had one. Also, before the DX, and we had no idea what was wrong with her liver, no other signs, she absolutely loved Hershey kisses. (and fruit and all other things) So it's not a case of she just didn't have the chance for fructose to cause a seizure. It wasn't until after her body was off the fructose, and her liver was functioning normally again before she started with any kind of fructose symptoms. As for her sneaking food, other than that kit kat, I've never had to deal with that problem. But then my situation was easier in that respect as she couldn't get it herself until she was old enough to know that if she ate anything that was bad she got really sick. She didn't want to get sick. Now if we had just the DFI and could occasionly eat some of the things she wants, that would, indeed, make it very much harder. I would hesitate going back to full restrictions though as, hard as it is now, it won't teach him what he needs to learn about limiting. As he gets older and older, and goes out with friends, etc, he needs to know for himself what and how much he can have. If it is over restricted, and in Jr high he gets his apple from his friends, and doesn't have a problem with just one, I would be afraid that he might think, "hey, I can have this after all" and then the bingeing may be even worse. If you can struggle with getting him to learn his boundaries at this younger age, while you still have more control over it, it may be worth it for when he's older and you have less control over his food. Now this all sounds good in theory. Coming from one who didn't have to deal with it. But I'm glad that Regina learned at a young age that she didn't want to be sick. I never had to worry that she would eat something from one of the other kids lunch bag. That if she would go to the movies with her friends, or to a birthday party (after the kids were too old to want Moms there) she would only eat what I sent for her. The temptation wasn't as bad because she already knew the consequenses. So I guess you should just weigh both sides. And tough it up and know you have to be the mom, good and bad. And just keep trying to find the way that he can relate to that will help him understand and teach him to be able to control the limited things. And remember.......We passed the mommy test when we were given the babies. Anyone who didn't pass the test....has to be the daddys. ;D
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Post by kristen on Nov 4, 2006 14:33:03 GMT -5
Tammy that's called an absent seizure. That's not what I meant. Coley did have some of these when he was on the appetite stimulants, but that's the only time I saw them. They can last only a few seconds or up to a minute. The way that you can tell that they are seizures is because you cannot get the persons attention during them. Now you need to be real sure that you are not being ignored, so a true test would be to do something like snap or clap or whistle...something that would envoke a 'startle response.' If nothing happens, it's an absent seizure. Generally there is no recollection of what occurs during those seconds either...another sign that's what it is. And then there is the aftermath.
What I was referring to is different, I literally mean that there are types of seizures that offer absolutely no outward signs whatso ever, to studdering no staring no stopping nothing.
Most of them are partial seizures, and it all depends on where they occur in the brain as to what signs may occur - sometimes there is an uncontrollable figgit (wetting lips, blinking, scratching, fiddling with clothes, etcc) but sometimes not even that.
There are so many types and really each person is individual. I'm not trying to suggest to anyone here that they are 'missing' something, what I'm trying to suggest here is that for a Dr to say that because you haven't seen one that it means it can't be HFI assumes too much - firstly as Tammy points out it's a wrong conclusion, but secondly it also assumes that you can 'see' all types...which you cannot.
I joined a seizure/epilepsy group after Coley's diagnosis, and the stories I was told from adults would rattle your mind...but bottom line there are MANY types that show no signs...the ones that always stuck in my head were the nocturnal ones where they only happened while sleeping and the person it happened to wouldn't even wake up and neither would the person sleeping with them. The only way they knew was because they woke the next day very tired & confused. These generally happened in the temporal lobe (coincidently just where Coley's focal point was found).
I don't want to take this too far off topic, I think it's a good way to point out all the mixed & mis-information that is out there on all the various types of FI....but the seizure stuff touches a nerve so I really wanted to keep it clear...
KJ
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Post by Tammy on Nov 4, 2006 19:52:15 GMT -5
Kristen, I find this interesting. I am by no means doubting any of your info. You definately know much more on this than I do. What I find interesting is that when that other girl would have one of those seizures, what we did was just talk to her and it would bring her right out of it. Maybe because she was on meds for it? And sometimes when Regina is gone.......she is really gone. Which is why they tested her to see if they were seizures or not. And the Dr did mention at the time just what you said, about some seizures you have absolutely no idea anything is happening. Well, just another one of those "she can't do anything normally. " And you are definatley right on this is just a good example of all the mixed and mis-information that even the Drs give out. Tammy
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Post by kristen on Nov 4, 2006 22:55:42 GMT -5
That other girl maybe having a 5, 10 or 15 second absent seizure so by the time anyone notices, reacts and talks to her, she's already coming out of it. That's the hard part about absent seizures, they are quick. Often it's how they feel after that is the real key to determining whether it was bordum, just a little mind wandering or a seizure.
And as far as knowing for sure that one of Regina's has or hasn't been, you would need her hooked up to an EEG, one of the ones where she is really out of it. Now even with that it's not a sure fire thing that they can detect it...it firstly depends on the type of EEG used and the method being employed. Second the interpreter has their own 'philosophy' about what they are reading. It's by far an exact science...contrary to what 'brain surgeons' would have us believe.
A seizure was never captured for Coley's EEG. But luckily for us we had the top epilepsy tech at children's interpreting a more sensative type EEG (called a BEAM study).
When he saw Coley's brainwave activity what he reported was: almost no activity in his speech center, abnormal activity in his right temporal lobe (where perception & reality is formed) specifically some spikes and waves were witnessed, and an overall immature wave pattern.
His interpretation of all of this: "evidence of a history of seizures activity." Medication was prescribed, and there was an immediate and tremendous change in him, indicating that the 'interpreter' was correct.
I also 'met' a bunch of moms that got similar readings and an interpretation of: "no seizures present" - period.
Coley did also have some strange behaviors that occured only while eating when he was an infant...that I think sound like they could have been seizures as well (after talking to people)...he would stiffen up, make fists and grind his jaw together...this happened a lot, and I really can't pipoint when it stopped...but there are a lot of really strange presentaions of seizures...The big events that occured with him were these night time things where he seemed to not recognize his surroundings or us...he was terrified, it was so scary for us all. I think these were his big seizures. And based on what I read about partial seizures and temporal lobe seizures, it seems likely.
The epilepsy foundation has a great site that outlines the common types of seizures (grand mal, petit mal, absent, partials, complex, etc) and some of the more typical signs. The best information, just like with FI comes right from the people experiencing them though. I joined an epilepsy forum sponsored by Mass General...
As an FYI, another interesting thing is migranes...many people with epilepsy also get migranes, some of them consider them small seizures, or indications that one is coming. Often there is a warning called an aura, some people get migranes at this time, some people get migranes from an event, and some people get like aftershocks that include mini migranes...
Migranes are actually irratic brainwave activity as well, but the neuros differentiate them from seizures because there is no pain associated with a seizure (barring any accident/injury from the event) but other than pain they are very similar...migranes would be considered focal to the frontal lobe...and I think be classified as a partial because it doesn't travel. Some neuros refer to the aura as a partial seizure.
If you'd like I can dig up the links and groups if anyone is interested in learning more.
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lisa
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Post by lisa on Nov 4, 2006 23:44:14 GMT -5
That is precisely what I thought was true - maybe we should have another topic called HFI and FI myths. We can also put the 'they need to have a reaction within 30 minutes for it to be HFI' that I think Sonia or Marcy posted recently.
Regarding the staring thing Tammy mentioned, Nate used to do that periodically and now I don't notice it anymore. There was also the thing he used to do at night when he couldn't/wouldn't talk but drank crazy amounts of water. That too is gone. I know we're basically where we should be with the diet, but the whole craving what he can't thing has got me thinking that it's still not quite right.
We have put a cabinet lock on the refrigerator & freezer to curb him from going in there and getting things he shouldn't have. The problem usually occurs when something is left on the counter or when we forget to re-lock it after getting something out. When he eats something that he should not have and gets caught, he usually tells us to shush, drops it, and acts like he doesn't know what we are talking about it.
Depending on the item eaten, it can take from 10 minutes to 1 day for him to react. Some reactions last 1 day and some last 1 week (like the apple). It seems so strange that he is such a fiend for these darn things when he feels absolutely miserable after he's done eating. The doc said he probably wouldn't restrict consistently on his own until age 8 or so.
Oh, yeah, when we walk in the store the apples are right in the front. Every time we pass them he asks if we should get some for Ashley and Daddy. He also makes the statement that he can't have them because they have "sugar-sugar" and "make ow-ey tummy". So I'm sure he knows exactly what he's doing.
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Post by kristen on Nov 5, 2006 10:24:57 GMT -5
Lisa, I'm not sure if Nate is old enough for this yet, Coley seems to be just old enough to start getting this, but when he gets out of sorts I tell him precisely why: If he starts getting grumpy and I see those dialated eyes, I tell him that he needs to eat. If he fights me on it (because he's in that mood) I tell him that he is grumpy because he needs to eat and if he choses to be grumpy over eating that he needs to go to his room by himself. Sometimes he will storm off pouting, but more often than not he'll make the decision to eat something. And when he's like that I let him have just about anything just to get him 'right' again. If he's showing signs of too much fructose, like when he got the ice cream from the neighbor or the chocolate cake from my MIL last month, I told him at each phase...from the behavioral stuff to the loss of appetite to his boo-boo belly that he feels that way because of what he ate. I use it as an opportunity to reinforce that he needs to be very careful about the items & amounts he eats. And then there is this 'withdrawal' behavior. We've been trialing the organic cheerios that I posted in the toddler foods thread, I've been giving him 1 cup per week (and no other limited item during the week). He for the most part seems to be tolerating it, but his behavior and attitute is not quite right. His apppetite may be a little off too...anyway, he keeps asking all week long for them, but I keep telling him that he can't have too many or they will make him feel yukky. So together we agreed that Sundays are for "O's"...he woke this morning saying it's Sunday, and he wanted O's. DH and I decided to cut it down to 3/4 cup today to see if his behavior is better...that's another story though. Also, after the ice cream & cake fiascos I freaked out and yelled at Coley (just my first reaction, I appologized after) but I told him that he is NOT to eat anything unless Mommy gives it to him, puts it in his snack bag or says it's ok. He double checks everything with me now. Anyway, keeping him 'in the know' so to speak seems to be working much better for us....plus I do think that these kids are MUCH better in tune with their bodies, so I think it's an easy lesson for them. I wonder if you make a chart of foods or something that sort of measures the amount of limited food that he can have during a week, and if he gets caught sneaking he loses one for the item and maybe a second for sneaking? ? Or maybe just tell him that since YOU didn't measure it you can't be sure (even if you can) how much he ate, so now he can't have anymore for 5 days (or whatever)....As I type this I realize you actually have 2 issues - the sneaking and figuring out the limit. You will never get there if he's working against you....I think you need to get the sneaking in check first, then start off slowly again with restriction to determine his break point. So I would really work on getting that lock off the fridge and Nate complying with the rule that nothing goes into his mouth without first being approved by Mommy &/or Daddy first. Obviously you know Nate better than me, so I'm sure you could come up with better techniques...but for us, generally loss of priveledge has the biggest reaction. Just like making him go in his room (which BTW has no toys in it - they are all in his playroom) when he doesn't eat. But e-mail or IM me if you want to brainstorm a bit, happy to help you come up with ideas if you need a little help. Hope that helps. KJ
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Post by Tammy on Nov 5, 2006 11:53:30 GMT -5
Lisa, I very much like Kristens "special day of the week" idea to start. It will let him know that he can have it again, he just has to wait for it. He can actually look forward to it if he knows when it'll be. I think I would find another thing he doesn't like (like going to his room) for punshiment for sneaking, though. I never liked using food for that as I'm afraid it might make the sneaking worse. If he knows he can't have it Sun (just as an example), he may try to sneak more before then. The same is true for the opposite. I would never use food as a reward for being good. Use toys, or priviledges for that. If he starts to associate what he can eat by being good or bad, he may get the wrong thoughts that he can't have something, and gets sick from it because he was bad. Or I also know a little boy whos Mom sort of did this to her kid, he was sooooo good, lets eat a choco cake. The kid learned that "I was so good so I'm going to eat this" and was sooooooooooooo fat. This may be the extreme case, But it helps to make my point. That "30 min reaction" does, indeed, need to go on the mixed - up info list. It takes Regina 2-4 days to show any signs. Even if it's just the over-the-limit diarhea, or the full out something missed signs. And Kristen, even after all you've been through with Coley, your MIL STILL gives him cake and ice cream? ?? I think I may have blown a gasket, too. (and I'm not even prego to help!) Grammy or not, I wouldn't let him there alone if she won't do what he needs. Not that I'm recomming this, it's just what turned out to work for Regina. We don't have a separate playroom, so all Regina's toys, TV, etc are in her room (plus all over the house, this somehow turned into her house), so her biggest punishment is setting in a corner. She doesn't even have to do it, I just say she will have to. It's been years since she did, and then it was only for about a min. Just the fact that she did was all it took for her. It actually took her longer to get to the corner than the time she was there. With every crawl step, she would look back and tell me what other kids had to do. She'd go to her room, she'd sit in a time-out chair, etc. I was even the mean boss. (we play-argue over who's the boss, me, daddy or her) It was soooo funny. All I could do not to laught in front of her. Now, she has stuff piled in front of every corner in the room that doesn't have furniture in it. The little brat. ;D Tammy
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Post by kristen on Nov 5, 2006 12:55:31 GMT -5
Actually him not having toys in his room kinda worked out for us in this case. We originally had to keep his room very empty because of the night time stuff and because of his preemie over stimulation tendencies. Once it's that way you don't really ever find a reason to say - ok let's put toys everywhere or move stuff into his romm - ya know. Maybe when his toys involve video games and foze ball tables - that may make a difference, but for now, the playroom/den/office works really well.
As we get ready for the baby there were a couple things like his train table that I thought we could put into his room - but now that he's in a big boy bed, I'm more worried about him getting up and playing versus sleeping when he's supposed to, so we found a way around that!.
I just meant (like you said Tammy) find a place where there is no fun - and for us his room is it...although we do use the stairs and the whole time out thing soemtimes (when he's being punished for being naughty). But in this particular case, when he choses to be a grouchy little pustual verus fixing his BS, I'm sending him the message that no one wants to be around him when he makes selfish choices like that...I'm not really giving him a time out - I don't even mention time to him or anything, I just say well if you are going to be grouchy go do it in your room. Sometimes I say things like "well you must need to rest, because you are even too tired to be nice." to reinforce the idea that if he's not hungry (as he states) then he must be sleepy becuase there is really only 2 ways to regenerate your energy...kinda like that.
It does all depend on the message you need to get across...which I'm sure you know. But I also know how hard it is to set limits when it comes to an FTT kid (which I'm guessing you are past technically but likely not emotionally)...
The more I think about it though, the more I think that maybe taking away all his limited items when he sneaks may infact be the best way. Don't present it in a punishment way, but rather that because YOU didn't measure it, that you just can't be sure so it's the safest way. Get the message to him that ONLY you make decisons on those things. Then move on from there. And when you get that message across...have him decide: 2 slices of (skinless?) apple this weeks versus a portion of grapes (?), some peas, and some oatmeal (or whatever). And just reinforce constantly that once he makes the choice there's no going back....a chart may work really well with this idea!
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Chelsea
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Gillianne
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Post by Chelsea on Nov 6, 2006 12:32:51 GMT -5
"Hi, my name is Nate and I am an apple addict." Did I ever mention the time when I found Gillianne under the kitchen table with a half eaten apple that was covered in coffee grounds? Yup, she pulled it straight out of the garbage can. Something apparantly appealing about apples especially when a sibling gets to eat them. I am sorry you have to deal with the challenge. We don't have a definitive diagnosis yet, but we have never had seizures.
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lisa
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Post by lisa on Nov 8, 2006 1:58:06 GMT -5
Thanks Chelsea. Glad I am not the only one. I can picture him pulling something like that from the trash and acting like it was the best discovery ever. Gross! Normally, Nate is a very reasonable child, even when he is unreasonable. If he is begging for something he shouldn't have and cries, I ask him to lay down in his bed until he can stop crying. Sometimes he just needs some quiet time to settle down a bit. He will usually follow directions even though sometimes it takes giving the same direction repeatedly. When he gets up, he generally asks for something more appropriate. For a while, we were OK with giving him cereal 3x a week. The other days he would get a few strawberries or blueberries in some yogurt or plain in a cup. Twice a week he was also getting a baby carrot or two. Seemed to work out fine for a while, but now we are at cereal once a week and a few berries once or twice a week and still having problems. I don't think I'd ever consider giving him apples, grapes or any other fruit. Just can't imagine that they wouldn't cause problems no matter how small the amount. I am not sure if it is because of the apple he sneaked last week - seems like that should be out of his system by now - or if he is getting something else bad and I am just missing it. Or maybe he is still sneaking and getting more sly about it so he doesn't get caught. What I do know is that when I change the inevitable bad BM he says things like "Oh well, no strawberries or cereal tomorrow Mom" or says "OK Mom" when I tell him that he's having eggs for breakfast or we need to be careful until it is gone. Maybe he's training to be a politician? He has toys, but doesn't really play with them. He is more concerned with books, movies, music and gymnastics. In my head, I just can't make taking a book away OK. I'll have to figure out some way to restrict the other 3 or reward with extras of those items when he does the right thing. Thanks for the ideas. This morning I noticed a bag of cashews out that I'm sure DH must've given the kids while I was out voting last night. At one time we thought they were safe for him, but they're not. I'm sure that's what's going on now. Sigh.
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Post by kristen on Nov 8, 2006 10:53:56 GMT -5
OMG Lisa - doesn't it seem like this should be more straight forward!?
Here's hoping that it get easier when they can explain what's going inside better!
I'm curious though - why are you more comfortable giving him strawberries & blueberries verus apple?
KJ
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Post by sarahk on Nov 8, 2006 15:42:16 GMT -5
It might be the cashews--cashews are too sweet for me, so I'm guessing that the sugar content is pretty high. I pretty much only eat walnuts, and sometimes almonds
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lisa
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Post by lisa on Nov 10, 2006 1:02:27 GMT -5
We've discovered through trial and error that the only nuts Nate can tolerate so far are peanuts. I think it was a buildup thing because cashews seemed to be OK for a month or so (in limited quantities) and then all of a sudden they were bad even after eating just a couple. Almonds are not OK for him, but I don’t think we’ve tried walnuts before, so maybe I’ll try when nothing else is going on. He stole some strawberries (little sneak) off Ashley's plate of pancakes one morning about 4 months into the diet. When nothing happened a few days after eating them, I decided that they must be OK. Since I had heard that DFI could tolerate some berries (something do do with being the most easily digested fruits), I figured that we were now in that reality instead of HFI or something else. Because of that, I tried blueberries. We quickly found out that blueberries were a limited item. We also found out that cooked strawberries or blueberries were not OK. I tried cooking the blueberries in pancakes and found a SF strawberry rhubarb pie at the store - both bad deals in terms of reactions. That's when the dietician told me that cooking the berries could change the properties of the sugars and make them into something that he could not tolerate. For this reason, when he started accepting a few veggies, I made sure they were never cooked. We have also tried both raspberries and blackberries, since I had heard that DFI can handle them, but had bad reactions to both. I figured that if he could not handle even all of the stuff that DFIers are supposed to have, there’s no chance of going any further and being successful. The carrots aren’t really OK for him either. They come out undigested every time, but don’t cause diarrhea by themselves as long as it is only 1 or 2, so I let him have them as a treat once a week or so. DH let him have a few grapes once when he was going through his “It’s really not as bad as you’re making it out to be and he should be able to have it once in a while” phase. That ended pretty quickly after he had to deal with the results. I would love to say that he could have a few slices of apple every once in a while, but each time he sneaks one we’re looking at around 3 loose BMs a day for up to a week. With all that has been happening recetly, even having a handful of previously OK berries causes problems and they come out undigested. I'm not sure if that's from overload or if he is no longer able to tolerate the berries.
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Post by kristen on Nov 10, 2006 9:16:51 GMT -5
Wow Lisa. I don't know what to say! I need to post an update too...I just don't get it. The only 2 things come to mund with Nate's reactions (and I don't know this for sure - you may or may not have thought of it so I'm tossing it out)... For DFI, and I'm no expert, my understanding is that the glusoce amount needs to exceed the fructose amount (and that includes sorbitol & sucrose) in order for it to be 'tolerated.' But I've also talked to people, like our AZ-Mary, who that doesn't follow for. Have you been able to compare all the things he's had from that perspective - does it add up at all? And then, my understanding of overload is tht it doesn't really matter what the item is, once they've gotten too much, anything that has any little amount will throw them over...so things MAY be looking a bit out of whack because he needs to detox completely for a bit before you give him anything, even stuff like oats or whatever.... Poor little guy - it's gotta be SOOOOO confusing for them! Oh, one more thought, I read once that there is a sorbitol intolerance (and fructose is ok or much more tolerated) so maybe try keeping that to a minimum..... UGH...hope that helps some...I sure do wish I had answers for all these kids! KJ
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lisa
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Post by lisa on Nov 10, 2006 10:38:02 GMT -5
I hadn't thought of checking the balance of sugars. Just looked though and the nutritiondata site is having some problems, so I will look again later.
I'm thinking that we've just got to go on full restriction for a month or two to get his system cleaned out. Right now that only means removing a couple of items, so maybe it won't be too bad. The biggest problem will be removing hot cereal (aside from dealing with sneaking). Some mornings he absolutely begs for it.
A note on trying berries: Even if he didn't tolerate them, the reaction was almost immediate (within an hour or two) and only affected him that day from what I could see.
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