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kaylabumbis 
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 Topic: OMG.. Heart Attack Material
Posted: 30 July 2008 at 11:00am |
My 14 month old son has failure to thrive and is under a few specialists up the hospital. I just recieved a special authority letter for him to have duocal which is a carbo and fat substitute. They had put on the letter the reason for him having it was he had cystic fibrosis diagonosed by a paed....I freaked my heart started pounding and my stomach dropped. I rang the hospital and the specialist had ticked the wrong box....ARGH. He doesn't have it at all..I also freaked as his older sister is a carrier for the gene..... but doesn't actually have CF..
One silly little mistake on a form has scared the living daylights out of me. 
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Bubbaloo
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Posted: 30 July 2008 at 11:02am |
 to you thats a pretty bad mistake to make.
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 Was danni-chick Mum to James My Angel 28/07/08
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kaylabumbis
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Posted: 30 July 2008 at 11:04am |
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Yes its a horrid mistake to make. As we still dont know why he won't gain weight. They think he might have a slight tongue tie. I am still shaking from it.
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BuzzyBee
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Posted: 30 July 2008 at 11:17am |
Big hugs chick!
I was failure to thrive as a baby/toddler, I was a very fussy eater on top of having severe allergies/anaphylaxis to basically everything EXCEPT wheat and dairy, eczema, asthma ...the works!
Was he not checked for tongue tie at birth? I was told Lucas was tongue tied and thats why we had a rough start to breastfeeding, we ended up travelling about 30 mins out of town to go to one of the only Dr's that dealt with tongue ties only to be told he didn't have it at all
Sometimes I really question these so called 'medical professionals'.
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Single Mum to a darling wee boy of 3 years :)
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kaylabumbis
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Posted: 30 July 2008 at 11:21am |
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I used to be really worried about Jordy. The paeds said he was really underweight but he is a happy wee man. He was checked for tongue tie at birth as he has the heart shaped tongue but he can drink a bottle perfectly. He just has trouble with solids he is still on puree etc. I take what the drs say with a grain of salt now...but that letter this morning scared the bejeezus out of me.
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BuzzyBee
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Posted: 30 July 2008 at 11:31am |
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Wow we have a bit in common re:solids. Lucas can only take pureed too and he is a terrible eater. Some days I won't be able to get anything into him, Plunket doesn't believe me though because he's heavy (which I can only put down to the breastfeeding because his eating isn't consistent ...we can have weeks where he will eat three meals, and then weeks where he just won't eat at all).
I can imagine it scared the life out of you, such a stupid mistake for them to make!
Does Jordy eat finger foods alright? If he's happy and healthy otherwise I certainly wouldn't be worried, Plunket like to place the fear of God into people.
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kaylabumbis
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Posted: 30 July 2008 at 11:36am |
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Lucas sounds exactly like Jordy!!! Jordy will attempt to eat finger foods he bites them but can t propel the food to the back of his throat to swallow so they come back out. But he tries. Jordy will great one day and is shocking the next. I wish i was still breast feeding but i gave it up as he was reacting to something i was eating and after 2 months of eliminating foods we still couldnt pinpoint it so was better for jordy to put him on neocate.
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BuzzyBee
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Posted: 30 July 2008 at 11:49am |
Yeah Lucas can eat finger foods, he doesn't chew them properly though - he swallows a lot of things whole lol. I think he's stubborn more than anything, doesn't want me to feed him anymore - likes his independence. Finger foods aren't really a problem with us ( he eats a wide variety of foods when he's having a good week- - its the chunky/textured foods (off a spoon) he has major issues with. Just spits them back out, Plunket was always on at me for continuing to feed him puree when he was younger,but I figured it was better to give him that as opposed to him not eating at all (as soon as I'd offer him chunky/lumpy or mashed he would spit it out and kick up a fuss and refuse to eat anything at all )
I'm sure you will get there with your wee man, doesn't help that toddlers can be very fussy/picky eaters too.
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Bobbie
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Posted: 30 July 2008 at 11:58am |
What a bad mistake to make!
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Maya
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Posted: 30 July 2008 at 12:18pm |
My brother was diagnosed with CF as a baby after 3 positive sweat tests, they didn't find out that he didn't actually have it till he was 2 so for two years mum and dad went thru all the treatments for CF, joined the CF society, accepted that they couldn't have any more kids etc. Turns out he just had an immature pancreas coz he was prem.
Re: failure to thrive, all three of my girls were officially diagnosed failure to thrive, Maya's was allergy related and resolved once we got her on an allergy formula, at one year she was exactly 8kg which was less than double her birthweight. We still don't know why the gremlins were so slow to gain weight, they packed it on as newborns then stopped about 6 months. They did keep getting sick tho, they had chickenpox, then rotavirus and heaps of ear problems so maybe that was a factor. At 13 mths they had a week in Starship with rotavirus during which time Mercedes got down to 7.5kg  Once they got over that tho they started to pick up and they're now on the lean side of normal. They were on Resource for a while to boost their calorie intake but they're off it now and were discharged from the dietician about 3 mths ago.
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 Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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kaylabumbis
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Posted: 30 July 2008 at 12:33pm |
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WOW Maya that must of been horrid for your mum.
My eldest had the sweat test done but came back negative. She has alpha anyti1 trypsen deficiency which is not enough enzymes in her lungs. She gets a lot of chest infections and suffers from really bad asthma.
Jordy was 4 weeks early but weighed 8.6 pound. He is 14 months now and is just on 8 kgs but he is very long so is growing that way. Failure to thrive is horrid. The dietician makes me put more noecate in a bottle that your supposed to in hope that he will gain weight. Hehe he has no bottom his legs just go straight up.
Its a huge contrast form my eldest who has always been on the chubby side.
Jordan has always had problems gaining weight we were admitted back to hospital when he was a week old as he was not putting on enough weight.
My middle child however is perfectly healthy i think in 2 years she has had 2 colds and 2 vommiting bugs.
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My3Sons
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Posted: 30 July 2008 at 12:50pm |
hugs! I bet that gave you a fright!
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kaylabumbis
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Posted: 30 July 2008 at 12:57pm |
It was seriously heart dropping. all sorts were racing through my mind. poor wee Jordan had no idea what worry he has caused me today hehe.
Imagine if they ticked the wrong box and sent it to someone and said their child had cancer or something... 
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jack_&_charli
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Posted: 30 July 2008 at 2:42pm |
OMG that's shocking!!!! i'm not surprised you nearly had a heart attack!!! 
jack was always really little, he was 5pd 6oz at birth and at 14mths he was just on 9kgs. he's starting to chub up now though which is good.
charli had a sweat test for CF when she was about 3-4mths old and she got burns on both arms from the test!!!! after all that it came back insufficient sweat for accurate result so they wanted to do it again...i said no way! her heal prick test was fine and there was no other reason to suspect she had it so i wasn't going to put her through that again
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Maya
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Posted: 30 July 2008 at 5:22pm |
 kaylabumbis wrote:
WOW Maya that must of been horrid for your mum.
He is 14 months now and is just on 8 kgs but he is very long so is growing that way. Failure to thrive is horrid. The dietician makes me put more noecate in a bottle that your supposed to in hope that he will gain weight. Hehe he has no bottom his legs just go straight up.
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Maya was the same lol, she looked like a lollipop - tall and skinny with a giant head! When she was really sick she was on the 97th percentile for height and only the third for weight - those numbers don't match up! The gremlins weren't so bad, they were 50th for height and 10th for weight. They still have no bottoms, scrawny things they are!
We used to boost their Neocate as well, then when they got the all clear to go on cows milk formula at 10 mths we had them on a calorie dense formula with Resource as a booster.
If it helps tho, despite how sick she was as a baby, Maya has been healthy as an ox ever since. She ws sick non stop for her first year with allergies and digestive system issues but since then apart from one bout of tonsillitis and chicken pox she hasn't been sick and she's 5 1/2 now. So your wee man could end up the same, once you get on top of the issues.
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Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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OMG.. Heart Attack Material
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