Anyone have this happen?

[Gretchen]

:'(Ok, prior to starting this diet about a month ago Jarrett ate whatever he wanted. He had stomach aches, but that was it. Well we've been really good at sticking to the diet. This weekend my brother in law got married. The whole family was in the wedding and Jarrett ate a TON of stuff he wasn't suppose to. I tried to watch him the best I could, but people kept giving him stuff that he knew he couldn't have, but he ate it anyway. I know this isn't a very good attitude, but I figured he'd feel crappy and maybe learn a lesson from it all. Well by 6am yesterday his reflux was back full force and by 8am he was throwing up. He seemed to get the picture that this is what happens when you eat stuff you aren't suppose to. He ate lunch fine, but by 5pm was pukey again. We brought him home and he fell asleep by 6(totally unlike him) and when he woke up about 8, he had the most finger nail polish remover smelling breath I'd ever smelled. Plus he didn't remember being at my in laws at all that day. My nurse instinct kicked in and I almost took him in. There was no pharmacy's open to buy urine test strips so I gave him a snack and put him to bed. He seems fine this am and his breath doesn't smell that way anymore. I am going to get my mom's blood sugar kit and check him later this am. The only thing I could think of was that his body had "detoxed" from all the sugar and had a reaction when he had so much. I've never had this happen and it kind of freaked me out. It made me think more of HFI instead of DFI. What does everyone think?

Gretchen

[Tammy]

That sounds a lot like my daughter with HFI.
She ate everything until she was diagnosed. (But she was only 2). The longer she was on the diet, the more severe the reaction to less fructose. Now it only takes a very small amount and she reacts about like you describe, only it sometimes takes about 3 days til the reaction. It seems the smaller the amount, the longer she takes to react. A lot, like you're talking about, and it would probably only be the next day or so.

The only difference is that she also gets a migraine-type headache. She can't even lift her head up off the pillow.

Another thing is that the longer it has been, the longer it takes to "detox" if she does get something. One time she took almost 2 weeks to get out of bed. And then when she did......it was instantly better. Like all at once it just finally left her system. That time I did take her to the ER finally (after about a week) and after all the tests (they were convinced she had meningitis until they did a spinal tap that came out clear) we ended up going back home where they said there was nothing they could do except let it run it's course.

Usually her vomiting and diarrhea only last about a day. After that, she just sleeps around the clock with this terrible headache. Most of her body aches, too. Pretty much like a bad flu. (Which makes it hard to know if it is the flu, or if she had something hidden I missed.) She does keep everything down after that and she will drink fluids so she is OK that way. But she says it hurts to move every muscle in her body.

I realize that's he's too big for this, but maybe some mom's with little ones can try this. I used to pin a note on the front of Regina when we were at things like Wedding's and picnics where not everyone knows her. It would say "Please do not feed me. I am on a VERY STRICT diet" It did stop people from giving the pretty little girl their piece of cake. Now, of course, she knows better.

We haven't done it in a long time. But when it does, we just ride it out like the flu. Lots of fluids and Tylenol. And you're right about him learning a lesson. If his reaction gets worse as time goes on, it won't take much for him to know that bite of something isn't worth getting that sick over.

Tammy

[kristen]

Yup, just wanted to second & third what's already been said...

Sounds alot like HFI to me too...and seems you've just seen the LBS and acidocis that comes along with fructose intake.

I would alert his Drs! To my knowledge (which is quite limited) this does not occur with DFI.

Hope that helps!
KJ

[nancyrandall]

We also had a slip up this weekend. I had a sitter for the boys that I have not used since last summer (she was away at college). She has been great in the past but, the diet and baby are new. I was more concerned about my 9 month old and just told her that the older one was on a fructose restriced diet and that he knows what he can and can't have. He would not need a meal while I was gone but, may need a snack. I was wrong about him knowing what he can and can't have. He took it as his chance to try someting new.

When I got home all was find but, later he told me he had a mistake. He drank 8 oz carton of Orange Juice. He did not relize it was OJ tell he finished it. (this from a 6 year old) I also purchase milk for him in small cartons but, they look much different.

He slept late this morning (10 am when he usually is up at 8). Other than that I have not seen any issues but, in the past it takes 24 hours for diareha to start. I just realized that his sleep pattern when he was younger could have been a fructose symptom. He would fall a sleep all the time where ever we were and always slept late in the mornings. It was normal for us to sleep tell 10 am. He fell asleep at age 5 at the alter of my sisters wedding. He had a normal sleep the night before but, at that point we were not on the strict diet. We had taken out sweets and fruit but, he was still eating veggies, bread, pasta (with tomato sauce), ect.... Shortly after that we started the diet and have not had the sleeping issues.

He has not been diagnosed HFI but, we found that is what works for us. The DFI stuff causes us issues.

I cut him off of a few items that I know cause him issues if he has too much (rubarb jam, peanuts, wheat, pop corn). We ususally let him have these once a week with out any problems.

Gretchen - sorry to hear he had such a bad reaction. You are lucky to have such great support here. I read stuff and learn more everyday.

Nancy Randall

[Gretchen]

Thanks for the thoughts. He seems alot better even today, but I'm still smelling a little odd breath. I took him to my mom's and his BS was 105. I also went to the store and bought the Ketone strips and that was negative. So I guess he's ok. I doubled up his reflux meds today so hopefully that's giving him a little relief also!! We're starting a new babysitter Thur. for the summer, but she knows about him and I'm making her a list and telling her to not give him anything that's not on it. She's only 14 so I hope she can have enough umph to tell him no. She saw him throwing up yesterday so I think she get's the hint!! Hopefully I won't need the Ketone strips again, but I have them in the cupboard just in case.

Gretchen

[kristen]

Nancy, I too have seen the sleepy stuff...

Funny because Coley was on reflux meds (syrup) for a long time (you know to control his projectile vomiting )...it obviously did nothing to help, for 2 reasons: 1) He didn't have reflux, 2) the syrup just compounded the problem.

But funny when I FINALLY got it through to the Drs that the meds weren't helping they ok'd him coming off of it. Once this happened he was much more alert and slept less. I reported this to the Drs, and of course they thought I was a complete loon. Zantac and Prilosec don't have a tranquilizing effect... GOONS!

Anyway, now I know, well besides the obvious, because his sleep gets all wacked out when he has fructose. He's so hard to wake etc. I think it's attributable to the LBS part of the cycle. Of course it makes sense that stressing the body out will have the same effect too. Maybe a little of each?

KJ

[Chelsea]

Gilliannes diagnoses came after many months of me complaining about her urine. She was in a constant ketotic condition. When ever she is isn't feeling well I dip her urin and sure enough she is ketotic but I have never had a LBS when I have checked except during her flu bugs.

3 weeks ago Gillianne stopped eating. We have no idea why but she just stopped. During that time she did increase her fluid intake of both breastmilk and unsweetened soy milk. Gillianne has always done fine with 8 oz of unsweetened soy milk a day, or at least I thought. One day she drank 16 oz and the following day I dipped her urine at +4 ketones. No more soy milk for her and her ketosis has been gone for 1 week now.

[lisa]

Strangely similar to some things I have seen with Nate.
He was on Zantac & Reglan for GERD until 1 yr old., but that issue started at lt 2 months old, so I'm sure it's related to prematurity& not FI. Got lucky that the meds helped him - just checked ingredients online and they look OK.
He had breastmilk until age 1 and then started soy, since his sister had severe reactions to milk when she was younger (hives) and I didn't want to chance it with him. The same week, he had sweets for the first time (birthday cake) and that's when our rollercoaster started.
He used to sleep a LOT. That has gotten better since going on the diet. There are a few days when he gets in to something that he shouldn't and on those days he sleeps a lot more and is a lot more grouchy (of course that could just be terrible 2s).
When he first started the diet, the smallest bit of fructose would give severe diarrhea for a solid week and was an almost immediate reaction (say 10 minutes between ingestion and first BM) and now, after 6 months, I'm noticing that when he eats something he shouldn't (with a few exceptions like popcorn, cocoa, and blackberries where the reaction is still within an hour) the reaction takes at least a day to happen and only lasts a day or two.
I have noticed the terrible bad breath a couple of times, but have never really associated it with anything specific. I'm going to pay more attention to when it happens and see if it appears related to fructose intake.
So far, he has been OK with limited amounts of blueberries and strawberries as long as they are not cooked, so he is not exactly as bad off as everyone else. Kristen definitely has something on the buildup though. I have noticed that we have to have breaks in intake of certain items or there are problems. When that happens, whatever went in comes out the other end exactly the same (though not with the same smell) and he gets very gassy (burping).
The one big difference is that he does not seem to understand cause and effect yet and has no aversion to fruit or sugar as others do. He will actually sneak it if we are not careful.

[Gretchen]

Jarrett is 6 and also has no aversion to it. The one thing we noticed for him when he was littler was that he really didn't like sauces. Ketchup, maple syrup and stuff he wouldn't eat. He'd eat pancakes plain and also hamburger's plain. Of coarse over time and us pushing it on him he now likes it. He is at an age where he can understand cause and effect, but like my first post said, sometimes peer pressure is to much. He takes Protonix, but takes the pills. We're lucky, he can swallow most pills. He also is not as bad as some others here. He eats sourdough bread with natural peanut butter and dextrose made rhubard jam almost daily. Actually it's what he eats for breakfast most days. Breakfast has been the hardest meal to find him stuff. You can only eat so many eggs and now I see even they have fructose.

Gretchen