large ketones?

[Sandra]

Hi there.

Do any of you have experience with large ketones following fructose ingestion. My son just had a fructose breath test and he didn't seem to react with malabsorption symptoms - just sleepy and hungry.
When we got home he was off the charts with large ketones.
Any advice would be so appreciated.

Thanks,
Sandra

[charlie]

Hi Sandra,
my 5 year old daughter had an off the scale breath test but was fine that day much to their surprise, However she was very hungry thinking about itbut then she didn't get breakfast till lunch time. The next day in the evening she kept feeling sick although she wasn't and was off her food for at least a week. She also started peeing for england and had lots of accidents. she also had alot of blood sugar lows and staring episodes. It took nearly 3 weeks to get her back to normal.
I asked the dietician about the excessive urine output and he is going to look into it as it isn't a recognized classic symptom. However HFI can from what I see cause liver and kidney damage so it maybe that these take a few days after ingestion to manifest.
Unfortunately you do have to be a pushy, jump up and down mother and report every minute symptom, I had to do it for 3 years to be taken seriously, it was only when she started school and they reported unusual symptoms that they listened so maybe if you have a childcarer involved in your childrens care get them involved, sadly they may listen more to them.
From my experience if you suspect a fructose problem eliminate it down to the minutest bit and you may then see how bad the symptoms have been, as the only treatment is elimination you are on the home stretch then anyway. but get medical support for supplements etc.
Good luck

[Sandra]

Thanks for your reply, Charlie. That's very interesting. One of DS1's symptoms for the longest time has been excessive urination, to the point we insisted he be tested for diabetes. He also has pee accidents when he has fructose. In fact, he asked to wear a pull-up today when we got home from the test, even though he has been potty trained for almost two months (He's 3).

If you find out anything about the urination, please let me know. I think I will be getting his test results tomorrow, but I can't imagine that fructose is not a problem for him. There are just too many variables that point to this.

Thanks for the encouragement in regards to being a bit more pushy. I am certain these docs think I'm a wacko, but they are not the ones who live with all the symptoms day after day!

Time to rest up for all the night waking that is sure to occur tonight!

[charlie]

I had a thought about the ketones, is your son getting dehydrated. I remember when megs was particularly bad I dipped her urine and panicked cos it showed high ketones but she had been very sick and not drunk for a long time. Make sure your son is drinking plenty of fluids, megs does drink quite alot of water and also milk that she is ok on and uses for an instant energy source.

[meaniejean]

Thanks for your reply, Charlie.
I don't think that Calvin (DS1) was dehydrated as he drinks water constantly. I have done a little bit of research and it seems that the ketones could have been related to his hypoglycemic symptoms - body trying to create energy since he had done an overnight fast for the test and then they gave him fructose - which his body cannot use for energy.

He tested positive on the breath test - not a huge surprise. Do you know if this means he can't have HFI?

I wonder if our kids drink so much fluid because the fructose seems to cause the excessive urination ...

[charlie]

I'm not sure about if it means they can't have HFI, I am going to ask our gastro guy that same question, as he implied megs had malabsorbtion in his referral letter post breath test but we haven't been able to see him since the results as he has been off injured so he doesn't know about all her other symptoms. To be honest at the moment though, as I have seen how ill Megs has been pre diagnosis, having seen the huge improvement post diagnosis I am treating it as HFI in my head at the moment but in the early stages our dietition has said the treatment is exactly the same and a better improvement is made by complete elimination. They will just rechallenge her in a year etc to monitor her.
Sounds like we are at exactly the same stage so let's keep in touch. I have new email from one originally posted in my profile and is now [e-mail].
I don't know what your son is like but I am very blessed that megs likes plain food and in an emergency a plate of pasta etc works wonders. We are still waiting for diagnosis on glucose as I have noticed a reaction after ingestion but this may have been due to other factors as this is supposed to be OK for HFI/DFI. The trouble with this condition is you have to wait so long for symptoms to clear over at least a week before you can test the next thing.

[meaniejean]

We are still waiting - though not very patiently (as hard as we try) - for the symptoms to clear. The challenge was on Thursday and he is still very high need and having trouble with sleeping. It seems that if he goes just a bit too long without some carbs he kinda starts to lose it. He has also been having very pale yellow BMs and then yesterday he had rectal bleeding. My poor baby

I will obviously be calling the GI tomorrow to let them know about the bleeding and to follow up. We are still waiting for some test results on my other son, Sawyer, who is almost a year old. He has the same problems, though to more of an extreme since is just a little guy. He also had an abnormal kidney function test, so that was repeated along with a urinalysis.

Keep us updated on your progress ...