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Post by tatyanasmom on Mar 26, 2009 18:07:40 GMT -5
Help! 11-yr old daughter was diagnosed with hfi 2weeks ago by oral fructose consumption(very scary) Marshfield hospital had never seen a case before. We have since also gotten genetic blood test back. Positive for mutant genes. We were sent to Cin.Ohio to see a genetics person her first sentence to us was why did you come here when you past 2 good hospitals along the way. Our G.I. doc had sent us there cause they have seen around 12 cases through the years. This woman was so mean and rude and told us we were babying our daughter and to give her more foods. The minute she accidentally ingests fructose she gets sick! I will not give her any foods with sugar in it no matter what that dr. says. You dont just get better from this overnite. We called our ped g.i. doc and it takes awhile for him to call back. He is trying to find someone for us to go to. We need to check her liver and get some knowledge on this hfi. I am happy I found this site or I think I would be crazy already. My daughter is still in alot of pain. We only give her tylenol every couple days. We need help. I have been pulling up childrens hospitals on computer and calling them and talk to nurses I tell them she has hfi and they have not a clue. I now have got ahold of a metabolic clinic(waiting for call back.) Can they do liver biopsy? We live in Michigan but dont care how far we have to go to get help. We need a doc that has knowledge. Any comments or suggestions appreciated. 1 more thing can her pain from hip to hip and on her sides be from the affects of all the hospital tests she had done. she had to drink so many things for her tests(before they found out it was hfi).2 ultrasounds, hida scans, upper and lower scopes, 2 CT scans, x-rays, some other test to see if intestines were twisted and others I cant recall the names. And all the drugs they gave her (I have huge list which she had bad reactions to.) She has had so much done in the past 2 months I think her body is just trying to recover. Can someone steer us in the right direction? Thanks Heidi (tatyanasmom)
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lisa
Full Member
Posts: 215
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Post by lisa on Mar 26, 2009 20:20:43 GMT -5
I don't have any advice on the doctor, but am sure that others will. What I do know is that it takes a few months for a person's system to recover once the diet is adjusted.
It has been some time, but I remember that my son ate a lot of yogurt in the beginning and that seemed to be some comfort. Keeping to plainer foods that are mentioned in the safe foods and recipes sections of this board is something that you can control to try to make your daughter more comfortable in the interim.
I don't know if you are giving children's tylenol or adult's, but I would recommend regular adult tylenol and get a dosage adjustment from a pharmacist for her age/weight. Children's Tylenol is not OK for HFI.
Oh, in the beginning, my son would react almost immediately to ingesting fructose or sucrose and the reaction would last 10 days or so. Now it typically takes a couple of days for him to react. If you can keep her fructose free you should start to see improvement in a short period of time.
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Post by colormist on Mar 27, 2009 9:13:28 GMT -5
Hi Tatyanasmom,
I live in Michigan in the Ann Arbor area and was diagnosed at the University of Michigan genetics department. They've seen me (though I think I was their first) so they know about the condition and are very nice.
What Lisa mentioned is true. Your daughter needs time to recover and really plain foods. Plain yogurt, milk, saltines, plain potato chips, plain chicken breast. For some odd reason HFIers crave these types of foods when we're in the condition your daughter is in. Have her drink lots of water, too.
It's really just about her diet and keeping unsafe foods out of her system. Read labels for ingredients on everything. It might seem overwhelming at first, but it's a really small list. If you just restrict her diet (completely! No deviations at all!!) then she should pull out of it.
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Post by charlie on Mar 27, 2009 13:52:30 GMT -5
Hi, I second Lisa's advice too. Welcome to a very stressful, confusing, frustrating world but at least in this proboard you have sanity, well, most of the time, we occasionally go off the radar!!!
Now you have a diagnosis work with the diet, I will email you the British copy of allowed foods, it would seem that there are alot of foods in the US that are allowed on the sweet side but I would avoid those for now if you can. Really plain food as Laura has said are best for now, it has taken a good 6 months for Megs my 6 year old to get a settled system and you will get lots of hiccups on the way as you learn to read labels. If you doubt any foods don't risk it to start with.
I still wonder if the pelvic pains are kidney related and it can affect the kidneys so lots of water to help flush them out is good. Stick with the diet and ignore the medics trying to get you to feed her other stuff, the experienced folk on here know how vital it is and how even the slightest slip up causes a reaction. Obviously follow any other advice on other medical problems but on HFI you will find you know best!!
Good luck, don't be afraid to ask even the most stupid question, we all have at some time or another.
Charlie
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