The big Test...

[laurie]

Kristen,
You and Coleman are doing great.........keep up the good work, and don't forget....
inhale, exhale, inhale, exhale!!
Yall have been in my prayers all day. You know Coley better than anyone, you'll know when it's time to leave.
Stay strong!

Laurie

[Tammy]

Kristen
I just wanted you to know that I have checked this several times today to see how you've been making out.
I know you are still in the waiting mode, but we are here waiting with you.
Tammy

[coleysgrandma]

coleysgrandma Hey guys how ya doin?
Sounds like things are going better than expected..yipeeee(I hope)....advice...go to sleep when he takes a nap...
Happy Fathers day....to the big guy
give me a call if you have time...
and have you called Dr.V to keep him up to date???....
okay one more thing "luvya"

[Tammy]

I'm glad to hear Coley is doing so good. Maybe the Drs were right and it's some other kind disorder.
But....stay vigilant. If I gave Regina an apple or banana to eat on Saturday, it would be Tues or Wed before I'd see any kind of reaction.

It could just mean that the HFI diet helped whatever the problem is, and once it's figured out, his diet can include all the things you didn't think possibe, and just eliminate different types of things. Maybe for the same reason he couldn't tolerate other things like the aspartame.

Hopefully that will be the case.
Keep up the good work.
Tammy

[Benjamins mom]

With some foods, Ben reacts within 9 hours and other foods he has a bad reaction the 3rd morning after ingestion. He can tolerate small amounts of certain foods, but only 2 days in a row, never 3. So....hang in there. We are all waiting with you. I will keep my fingers crossed that Coley proves something to his doctors in the next couple days, yet also that he doesn't 'crash' too hard. He is in good hands!! You are doing a great job, Kristen, and thank you for keeping us all informed. :-)carrie

[Benjamins mom]

I'd say...see how tonight goes and we'll re-assess tomorrow. You gave him some risky things today. Can you check his BS while he is sleeping? I understand your worries about being alone to check his sugar, but I'd think if he had a LBS episode during the day, he would be lethargic and it may be easier to check than other times when his numbers are within range and he is wide awake. If it was me, and tonight went fine, I may give one more thing tomorrow, late afternoon/dinner time. Sometimes it is that 3rd day that puts us over the edge, if we haven't gone over it sooner. I usually test foods late afternoon/dinnertime because he normally sleeps thru the night. If he wakes up, then I am more convinced he does have a tummy ache. It is hard to tell during the day. Yes, with bad sugar in his system, he is super cranky and eventually his behavior is off. He will hit anyone that walks by him and even knock over my furniture or pick up his rocker and throw it. He has never done anything like that without fructose in his system. But, he does have cranky days, no matter what he eats and it's always too hard for me to tell, is it the mood or the food! ok, I dont' know if I helped at all...sorry. carrie

[Tammy]

I think if I went this far, I'd keep going. I'd talk to his Dr tomorrow and keep him updated, but my guess is he might tell you to keep going.

Let me play a little Devils advocate here.

2 sides to this.
1. If it is just a delayed reaction like both Regina and Ben, if you keep giving more, it may just make it hit harder when it finally does.

But...2....if you stop now and he doesn't end up with a reaction at all, then you've just put both you and him through a tough weekend with nothing to show for it. And then your case with the Drs will be even weaker, and may make it harder to get them to believe the rest of the things.

So that means I would have 2 choices.
1. Stop with the foods and wait and see if it's a delayed reaction.
But
2. That would mean starting all over again from the beginning next weekend and going longer.

So I would definately get the Dr's opinion, and follow that.
But I would have a tendency to want to see it through and get some anwers. Plus I'm not a very patient person when it comes to just waiting. I'd probably want to just keep going rather than having to start again with all the nerves and hand-wringing and second guessing.

But this is your call with your child. It's easy (well, somewhat easier anyway) to sit back her and tell you what we think is best.

So now that I've made the decision even harder for you......I'd say definately ask the doc....after all, he (or she? I'm thinking you said she) is the one that recommended you do this in the first place right? So that is what I would do. Whatever she said.

Tammy

[Tammy]

This sounds as though you now have at least "proved" one point. He is reverting back to the behavior and eating that you noticed before. So the foods were making the difference (Not that I didn't believe you, but I've dealt with Dr's before). It's not a case of him just getting better at the same time. So he is already actually having a "reaction". His just isn't the same as others.

There are a whole lot of "maybes" here. But of course you already know that. Maybe it is 2 or 3 different things working against him, 1 triggering the next. Like the behavior trigging the eating triggering the fasting triggering the BS, etc. It could be something else that these same foods have in common. Maybe your idea with the fats. Maybe an entirely different component of the foods. And the list goes on and on and on.

I do believe this weekend has not been for nothing. They cannot tell you that the diet hasn't made the difference in him. It is NOT a case of he just outgrew the behavior. The 2 are tied together. Maybe the new doc will be able to find the connection since you proved that.

So ease your mind. You did a good thing.
Tammy

[coleysgrandmother]

Hey Kristen,
I m here reading and all that stuff...so my thoughts are with you and all my love..of course that doesnt help much when coley is going thru his "stuff"...talk atcha latah...mom

[Chelsea]

I was beginning to wonder where you were. I have checked a few times today, thanks for the update. Stay strong, we are thinking of you all.

[Tammy]

This could actually be a good thing.
I remember way back when you first came on this board, you said you really didn't know what was fructose related and what was preemie related. It would be good if it now ended up that it all was indirectly related to being a preemie. That way he could be maturing and outgrowing it all.

And if this is, indeed, the case, then maybe this is why you haven't seen the terrible reactions you expected. And probably a very good chance that he will outgrow even the few that you are seeing.

That makes this weekend that you were dreading, a very good thing after all.

Lets hope.
Tammy

[Tammy]

This is really sounding like you're on to something.
Just think, you might be able to feed him "healthy" like you wanted to in the begining. lol.
And just because he may not have a frutose issue when this is all done, doesn't mean you can't pop in here every now and then. After all, you probably know more about it than a lot of people do. You did a lot of research on it. I might have more experience on it, but you definately have more knowledge on it.

I would say by this time that you would have seen whatever is going to happen from the foods you've already giving him. Let's hope for the veges. Regina would have been terribly sick by now.

Did you bring the whole gylcerol thing up to the Dr yet?
I know the articles didn't say he would grow out of it, but I have a tendency to think that since he already has less reactions than he used to, that it's a good possiblity that he'll beat it altogether.

Even the way it is is great. I would love to be able to give Regina an apple....

[Benjamins mom]

Hang in there Kristen, I know your thoughts are probably a confused mess right now. However, you are monitoring him well and I continue to hope and pray that his doctors will be able to determine something out of all this!! carrie

[azmary]

Kristen - Finally!! We have been on the edge of our seats "crossing everything" for you guys. It sounds like you are coming up with a good balance for Coley, even through it cost blood, sweat, and tears...

So glad to hear Coley's expressing himself, too!

I really appreciate your sharing all of this - I, for one, need the courage to "test" adding healthier foods. (Even though I'm not in a big hurry right this minute... )

mary in az

[Tammy]

You are right to try and get to the bottom of this. At least then you'll know how his diet needs to be. It'll be nice for you to be able to stop all the guessing.

I agree with the liver biopsy. It's not something you want to do on a whim, but it's time. And it'll be just like this "testing" has been. Once it's done, it'll have been worth it to get some answers.

[laurie]

Kristen,
I was soooooo hoping things were going to continue to go well for yall.
I'm so sorry to hear about what's happened......still crossing everything and got yall in my prayers!!

Laurie

[benjamins mom]

Kristen, It's very interesting to me that Coley's body temp was between 95.6 and 96.5. That is Ben's 'normal temp' and he is often around 94.7. I remember learning in a biology class or something one time that enzymes need 98.6 to function correctly in the body....and here we are, dealing with enzyme issues with our boys who don't have a normal body temp. Do others out there have low 'normal' body temps? I wonder if there is a connection. Perhaps when they have fevers they can eat fruit?!!

I am sorry you hit the wall there. It sounds though that your pediatrician is behind you 100% to get to the bottom of this, which is one stress relief. Good luck finding the specialist!

Ben sees a new GI doc tomorrow, and then Tues his blood is being drawn to send to Boston Univ and Duke....so we have some answers coming. Does it take 3 months or 6 for the results?


well...good luck Kristen. Hang in there!!!

:-)carrie

[laurie]

Hi Carrie,
I just read your post.........Hunter's "normal temp is 97.4 to 97.6.
The doctors have never said anything about that.......even his home nurse. The only thing she really said was...that's strange.....haha.....to which I replied.....that's Hunter.
I'll ask the doctor this week what she thinks. Hunter sees the surgeon again on Tuesday to have scar tissue burnt off, but my daighter sees the the pediatrician on Thursday, so I'll let you know what I find out!!

Laurie

[Tammy]

Ok, just to confuse the body temp thing some more......Or maybe to hopefully put some of your fears a little farther in the background.......
Both my brother and I have normally low body temps. In the 97's. And although the rest of the family say we are anything BUT normal, we don't have any metabollic problems. Now Regina, on the other hand always has a normal-as we think of it- body temp. According to my Dr, my body temp still falls in the "normal range", just on the low side of normal. It can also be above 98.6 and still be normal, too, but I forget what that one was.
So if the docs aren't concerned about it, I don't think I would be.

Now my feet pretty much feel like they belong on a dead person, not to me...but that's what I'm told. especially in the middle of the night. So I guess you could say I have some cool skin places. I just tell him that's because my warm heart took up all the heat from my hands and feet.

[Tammy]

Kristen
As far as the ER doc versus the ped. I'd go with the ped every time. The ER doc only knows your normal, basic averages for things. He wouldn't be as familiar with all Coley's differences. As you've said yourself, just like your ped said, it's time to get to the bottom of this. So if the ped thinks getting the labs is the more important part, then I'd side with him.

I've had a round or 2 with ER docs over the years. For the same reason. They think in a broad, "everyone has to fit in this catagory" way. They don't know the patients and how things are. I had one that insisted that we give Regina an antibiotic that contained sugar. His reasoning was that it was more important to cure the infection first, and we'd worry about a little allergy later. Only after we finally got hold her of her ped did he spend the time looking for a safe drug. Because of this, I'd follow the ped over the ER doc every time.
Tammy