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Post by ukbill on Apr 7, 2014 13:24:45 GMT -5
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jprts
New Member
Mother to newly confirmed HFI 6 week old son.
Posts: 6 
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Post by jprts on Apr 7, 2014 20:20:32 GMT -5
Bill, I love that! I took ya'll's advice and went with spinach this week instead of peas. We plan to add chicken this week too! Thanks for the article, I am feeling a little frustrated lately! That article was just what I needed to read.  |
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Post by charlie on Apr 10, 2014 7:56:50 GMT -5
Ummmm, I put this article on my Facebook page for general interest of friends.. In relation to HFI don't forget this family had no limitations so you have to factor in that they did have "sugars" as in fructose, glucose and sucrose in vegetables and fruit so possibly satisfied their bodies needs that way.
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Post by ukbill on Apr 10, 2014 19:12:00 GMT -5
ARRGE sorry Charlie I was going to credit you with that initial discovery it is a good one!
But other arguments took my mind (such as I have) off it.
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Post by kollynsmom on May 29, 2014 8:41:16 GMT -5
My son was 8 weeks old when they sent the labs off to Baylor and we received positive for one HFI gene on April 24' 2014. He too has acid reflux...to the point he spits up when you change his diaper. The hospital advised us to buy a wedge and use a medical sling called a Dani sling... Not sure if that is how it is spelled. I went to walmart and bought 3 wedges and duct taped them together to a 45* angle and put a minky sheet over it. Sling goes on top.
We need to create a secret group on Facebook to converse without everyone on our friends lists knowing what we are discussing! (Only our parents know of the babies issues as we are erring on the side of caution as we live in a small town. When people don't understand different medical issues you are just labeled MR). I will make one if you will send me your email... I can add pictures to show you our sling. We keep him angled at all times other then diaper changes.
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Post by charlie on May 29, 2014 14:51:28 GMT -5
Hello, kollynsmom,
Welcome to the board. That is very interesting about the sling. I assume it works......
Re Facebook. There is a group on there but to be honest a medium like this is much better as subjects get lost very quickly on Facebook so you just go round in circles.
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Post by kollynsmom on May 30, 2014 9:48:52 GMT -5
Charlie - it has worked so far! A kind of a pain to change though! Also hard to tell people to keep him elevated while holding him. Everyone seems to know more about your child then you do. This applies to my 3 year old as well...lol.
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Post by charlie on May 30, 2014 11:09:20 GMT -5
Oh, I know, I have met so many "experts" along the way, still do. Just stick to your instincts......
wow, another early diagnosis, did you other child have fructose problems to alert them to it so early?
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Post by kollynsmom on Jun 1, 2014 20:05:45 GMT -5
We went into the hospital at 8 weeks of age with RSV and immediately after starting antibiotics and formula he rapidly lost weight and projectile vomited. Started jaundice, elevated liver enzymes, low blood sugar. Were several days we thought he was not going to make it. Sent off 54k worth of labs thinking it was galactosemia and the FHI came back one positive. From reading on this board I am so very thankful that he is not double! They still want to do a liver biopsy but we have decided it is not worth the risks at his age. 11 days in the hospital, took him off breast milk for 3 weeks till the genetic tests came back from Baylor... Needless to say starting the nursing up again has been a challenge. Discharged from the hospital April 1. So glad 2 months later he is FINALLY starting to gain weight... 4months old 12lbs, 12oz
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Post by charlie on Jun 2, 2014 3:43:04 GMT -5
Poor little chap, and what a worry for you. however hopefully you are on the right track now and things will pick up.
I don't know how much info they have given you about the diet but the good thing is you can start from scratch. double check any formula milk for hidden sucrose or fructose.
When you start weaning he obviously will not be able to follow the normal start of pureed fruit and veg. Start with chicken and other plain meats, build up the protein side, then white rice first. follow Claudia's posts, she has a very young child diagnosed early and weaned him successfully.
Good luck, hopefully onwards and upwards.
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