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Post by tayanasmom on Mar 10, 2009 12:58:51 GMT -5
Help. 11-yr old daughter just diagnosed with HFI after 3 weeks in hospital(still here).She has Very Bad pain for last 7 weeks that goes from hip to hip and both her sides(forms a U shape).She is in constant pain.Her pain level never goes below an 8 and gets to a 10+ with no meds that will make it better.They have tried hard narcotics (don't touch the pain).She has had multiple allergic reactions to these meds.So we stopped all meds but tylenot and tordal. Doctors can't get rid of this horrid pain she has.Has anyone experienced this?Do you get lower ab pain if you eat the wrong food?Any suggestions please!Doctors here have never had a patient with HFI and don't know how to treat. Please any suggestions she is in so much pain. thanks
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Post by charlie on Mar 10, 2009 14:52:55 GMT -5
Hi Tayans mom, welcome to the board. I'm sure others will be asking how did they diagnose HFI and why did they think of that. Did she have problems before?
HFI can affect the kidneys as well as the liver and that distribution and intensity of pain suggest possible kidney pain.
My daughter has pain, but more a grumbling ache from what I can work out, oh and she vomits for England when she ingests any fructose.
If it is HFI you are in the right place.
Good luck.
Charlie
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Post by ljs678 on Mar 10, 2009 15:41:27 GMT -5
Really sorry to hear your daughter is in such a bad way. My baby gets bad abdominal pain when he has fructose (writhes, cries and grimaces), but it only lasts about 6 hours while he vomits up everything that is in his stomach. Then he usually sleeps and it seems to go away.
But maybe with your daughter it is partly down to all the meds she has been having and her system is working hard to clean itself out. You have to be super careful with the meds as most of them seem to have sugar, sorbitol or mannitol.
If you can get the doctors onside and taking it seriously, that is the first step. They can check what is in the meds in a reference book, or compendium. And if something seems to be reacting badly with her you can ask them to check with the manufacturer (in our case there was a med that the doctors compendium said was safe but when our pediatrician checked with the manufacturer it turned out it wasn't).
The other thing to look out for is hospital food, there is a recent posting here on that subject.
I hope things get better for you and your daughter soon.
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Post by meaniejean on Mar 10, 2009 19:06:31 GMT -5
It breaks my heart that your daughter is suffering like this.
I don't want to mislead you, so let me start by saying that I am not diagnosed with HFI. I have an appointment with a GI doctor tomorrow in order to set up a liver biopsy. With that disclaimer, I will say that one of my biggest symptoms has always been horrible pain - both lower abdomen and sides - though mostly right sided - and also the back as a kind of burning kidney pain. This pain usually comes anywhere between a few hours and a few days after ingestion of fructose. I also have nausea and pain around my belly button as well as hypoglycemia symptoms soon after ingesting fructose - but the pain later on is the absolute worst - sometimes it feels like I must be dying. I know, dramatic, but at times - oh, my is it bad!
Please be SO careful about what the hospital is giving her for food and meds. My three year old was recently in the hospital and both he and I got sick due to some beef patties that had sucrose as the third ingredient. The menu that was sent to us to choose from was NOT HFI safe.
What kind of testing did they do for diagnosis? I ask because if they gave her any fructose as part of the test it could take her some time to recover. My son ended up with GI bleeding and other issues for months after an oral fructose test.
All the best to you and your daughter. I am sure this must be very stressful for you, but you have certainly come to the right place for help and support. I don't know what I would be doing right now if it were not for this board. I know that we would not be nearly as healthy as we are now.
Hugs,
Sandra
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Post by colormist on Mar 12, 2009 7:59:19 GMT -5
If it's kidney pain (which is more localized in the lower back & sides), then I'm going to suggest lots of water (no other beverages). If you are unaware of what kind of diet to put her on, I'm going to suggest saltines (please read the label to make sure they are high fructose corn syrup AND sugar free). Just the generic, bland, boring saltines. Plain, raw spinach is good, too. Plain chicken breast (make sure it's not plumped/injected with any broths). I really wouldn't let the hospital feed her. I also like milk a lot, but I don't know her diet. We have some lactose & fructose intolerances around here, so it's best to take baby steps with the diet.
It really sounds like kidney pain. The only reason I could see that it wouldn't be going away is due to continued fructose ingestion.
Good luck and please keep us posted on her condition!
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