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Post by meaniejean on Mar 9, 2009 12:57:49 GMT -5
Hi there. Just thought I would add a little update since I haven't posted in awhile.
Calvin is still recovering from his fructose ingestion a couple of weeks ago. He can't seem to sleep through the night these days - wakes screaming his head off - almost seemed like a seizure last night but it is probably just night terrors or something. My sanity is seriously suffering from the lack of sleep and the poor kid is TIRED and GRUMPY!
Off topic - Calvin was sent for a sweat test to rule out cystic fibrosis. His test came back in a gray area so we have to go back next week for a retest. I am very hopeful that all of his issues stem from intestinal damage brought about by HFI, but the GI doc doesn't believe he has HFI, so ...
I go for my GI visit this week and will be requesting testing - probably a biopsy. We need to get this stuff figured out.
All the best to you all!
Sandra
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Post by charlie on Mar 9, 2009 14:01:05 GMT -5
Oh dear, poor chap. those night pains are terrible, megs had them for a long time, can't remember if he can have lactose but found a sandwich and warm milk always helped, hers were always about 11 pm if very reactive or 3 am if slightly reactive and they thought in the end it was her blood sugar dropping suddenly. It did help, in the end I had it all out ready just in case for the sake of a better sleep.
Strange about the cystic fibrosis, good luck with that. The problem is, just because they have fructose issues doesn't mean they don't have other problems and sometimes you have to eliminate one and then focus on another. Well, that is their excuse to me and I'm believing them for the sake of sanity!!!!!
We got a letter finally from the gastoenterologist to say Megs ultrasound and liver tests fine so more likely fructose malabsorbtion and she will grow to cope with more fructose as she gets older. One slight concern is are they taking into account she has been off fructose more or less completely for a year before they did the tests so is it conclusive. Although I am delighted to hear she has no liver damage I will still err on the side of caution as she is so reactive. Our next appointment is in May so we will wait with baited breath for further advice.
Yours, as stressed out as everyone else
Charlie
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Post by meaniejean on Mar 10, 2009 19:26:21 GMT -5
Charlie,
Thanks. It is so nice to hear from someone else going through this. I know that other things could be going on with Calvin, but I just hope and pray that HFI is the only thing. I know, wishful thinking won't make it true, but ... HFI, in comparison to some other things, is so much easier to control and deal with.
I am happy to hear that they think Megs is only having a malabsorption issue, but you are certainly right to be suspicious - a year off of fructose would mean that her liver WOULD be great even if she has HFI. So, I hope they are not going by liver function alone.
Calvin had one liver test come back just slightly abnormal when we were at the hospital a couple of weeks ago, but his ped told me today that it is not so elevated to be a concern. Hmmm ... hope he's right.
I was a little surprised by the CF testing as well. He appears to have some fat malabsorption so she wanted to rule it out. I'm not sure what the need to retest means, but we'll keep our fingers crossed.
Tomorrow is my GI appointment so I am excited to get the ball rolling on a diagnosis. Let them poke and prod me and hopefully spare the boys!
I'll let you all know what happens!
-Sandra
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Post by charlie on Mar 11, 2009 16:27:09 GMT -5
Good luck tomorrow. Hope you get some answers.
Yes, I think they are only going by liver function alone but I shall keep asking etc.
Give you all a giggle, this is the info sent through today by our paediatrician following up my request for advice on vitamins and painkillers made in December. This advice was sent to her by the pharmacist: The sugar-free analgesic preparations like Neurofen for Children and Calpol contain the sugar alcohols maltitol and sorbitol which I assume are ok in fructose malabsorbtion.
The childrens vitamin range from Bassetts Soft and Chewy are also sugar free and contain maltitol and an unspecified "sweetener" but it unlikely to be sugar.
Oh help, thank god I have a brain, common sense and you lot!!!!!!
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irene
New Member
Posts: 39
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Post by irene on Mar 12, 2009 8:04:14 GMT -5
Hi Charlie
Just as well us mums are more clued up on HFI than having to depend on the advice of the pharmacist, you just wonder if they have ever researched HFI or fructrose malabsorbtion. Hannah not too well at moment, just a bad cold not HFI related. I have a prescription for oral paracetamol which I have just given her for the 1st time. This was sent to my GP from the hospital. For vitamins I have been told that Haliborange liquid form is ok, even though it is orange flavoured, Hannah seems to take this no problem, but her dietician has emailed haliborange for confirmation, although she did check with biochemist. Will keep you informed.
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Post by julienc on Mar 12, 2009 9:17:11 GMT -5
My doctor (the geneticist who diagnosed me with HFI) did not know that sorbitol was a no-no. How awful is that???
There is so little education and knowledge in the area of fructose intolerance. It continues to amaze me.
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chad
New Member
Blue Agave triggered my galstones but maybe also I have DFI
Posts: 49
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Post by chad on Mar 14, 2009 19:16:08 GMT -5
I had bad dreams from my DFI/HFI whatever it is. Part of it for me was I needed more Iron. I would get muscle spasms at night for some reason that have gone away once I got iron pills.
Anemia can cause bad dreams. That may not be his thing. But that is what happened to me. Migth want to make sure the doctors run blood checks and see if his iron is average to low to see if he can take a shot suplement?
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