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Post by Rilith on Apr 17, 2006 19:03:03 GMT
It could be the full coeliacs.
She reacts to the smallest of traces. Grrrr
Even the tiny teeny trace thats in calpol!!!
Got an appointment with the dietitian soon, but don't know when yet
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Post by Jojo on Apr 18, 2006 8:37:08 GMT
Oh it's one thing after another hun!!
Hope it get sorted soon, well at least everything else seems to be going well for you anyway!!
xxx
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Post by Rilith on Apr 20, 2006 8:02:23 GMT
We have cut everything out now. Even calpol, tixylix and cordial!!!
And she slept ;D
10 - 8 she did not wake up once!!
BLISS
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Post by Jojo on Apr 20, 2006 9:30:26 GMT
Wow......thats great Holly!!!
Oh some kind of night routine on the horizon.
xxx
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Post by Rilith on Apr 23, 2006 18:29:06 GMT
She always used to sleep through. She has always been really good at night, until we started to wean. We were very good and waited until 6 months before we gave her wheat. Funny really looking back now I wonder why I waited. I didn't with the boys...LOL
Anyway, all of a sudden she was waking up at night, just whimpering at first. A few nights later it started to get louder and louder. After a week and a half of her having a bit of weetabix for brekkie and ready brek for supper she was to the point of screaming with tummy cramps. Diarrhoea, runny nose, thick mucus, sticky eyes and the smelliest trumps ever.
So we looked at what she was eating that was different and stopped it. She improved loads over the next few days. And settled off to sleep better, but she was still waking up with tummy ache. Then she started with a cold (or so we thought) and gave her calpol and tixylix and sips of juice to wet her throat.
She just wouldn't get any better. She was constantly coughing all night, she was throwing up all of her feeds again. She was really lathargic. I just happened to glance at the ingredients in calpol and saw one was maltitol. The Malt part rang some alarms in my head so I checked them out on a coeliacs forum. I found out there that maltitol can cause bloating and diarrhoea, along with other symptoms.
We stopped all medicines and took her the docs. 24 hours after stopping calpol and tixylix she was 95% better. 48 hours after and she slept through the night. I have had 5 nights sleep now. She goes down between 9.30-10 and sleeps till 7-8 in the morning.
Trying to sort out an appointment with her paed now so her can order the tests to confirm it. Once its confirmed loads more doors open for me to get help for her.
I will be able to get bread and pasta on prescription for her. So I can give her more than veggies for her dinner.
Well I have waffled on long enough now. Its nice to get it all out of my system though...LOL
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Post by Jojo on Apr 23, 2006 19:09:38 GMT
Seems you know the cause which is great news.
There's nothing worse than not knowing the problem is there?
Glad she's settled again for you I bet you feel soo much better, just getting a decent night sleep!
xxx
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Post by Daddy2Josh on Apr 26, 2006 18:12:46 GMT
holly still sleeping then rilith??
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Post by Rilith on Apr 28, 2006 0:26:10 GMT
She was still suffering from the residues of gluten this morning. but was quite happy and was cooing away. So we took her to have her 2nd lot of Imms. I went to the chemist and got every single infant paracetomol off the shelf checking for the ingredients. She can't have any of the ibruprofen cus of the medication she is on for her heart. Anyway, so there I am I'm checking through looking for maltitol. I find one that doesn't have it in. I think to my self YIPEEEE, and it was the cheapest one too. Just to be on the safe side though I took it home and checked the ingredients online, just to make sure. There was one ingredient that "could" contain traces depending on the refinement process. Yep, you know where I'm going with this story now...LOL 10 mins after giving her 2.5mls she starts to get a runny nose. 20 mins later she starts to cough. 30 mins later she throws up most of her feed, this time only reaching 2.5 foot, and not the usual 4. Time line here... She had her jabs at 9.15. And her 1st dose of infant paracetomol at 12.30. By 6 her temp is rising. She is getting crankier by the minute. So I tried the doctors "suggestion" of a quarter of a paracetomol crushed and mixed with water. By 6.20 she was fast asleep. Like a baby...LOL She usually wakes up at 7.30 to get ready for bed. I tried to wake her by getting her babygrow on, but she was having none of it. She moaned at me until I put her back down to sleep. I dreamfed her her supper feed by the tube while she was sleeping. 11 she started to stir. I felt her tummy and she was bloated so much it was making her belly button pop out. Nothing I can do for her except pace up and down, rubbing and patting her back and her tummy hopefully trying to shift the trapped wind. So looks like a long night for me yet again, and no one to keep me company...LOL So if you don't hear from me tomorrow I'll be sleeping..LOL Hope you all have a good day XXXX
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Post by mashpotato on Apr 28, 2006 7:58:18 GMT
So glad you've worked out the probs and hopefully a paed will help you more.
I believe Saul has something like this but doc's only ever give us laxatives. his had probs ever since we began weaning, within a few weeks was so constipated he screamed the house down all night, and it lasted for 3 months before his body forced it into regular loose movements. I think this was the blockage they saw on the xray back in December, 2 yrs later. He also got reflux at 14 months which lasted for 3 months before we got to see anyone, and they gave him reflux meds. His still sick now.
He has to see the paed again next week and i'm just going to demand the tests and if he refuses i'm going to ask to see someone else. He was originally going to do blood tests after the first course of strong laxatives, but when we turned up put saul on them for 3 months instead.
(i was told the other week by another mum who's DS son was seen by this paed, when she told him she'd read up on symptoms of different bowel conditions and believed her son had one, the paed said 'you need to get over the fact your son has Downs' as you can imagine she was very angry and asked to see someone else. She also stopped all meds and uses fruit and herbal things that stop constipation. apparently the paed was also an alcoholic who nearly lost his job due to it.)
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Post by Daddy2Josh on Apr 28, 2006 14:08:35 GMT
aww.....hope you got some sleep!!!
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Post by Rilith on Apr 28, 2006 14:47:01 GMT
OMG Mash!!
Luckily we have had to deal with a food intolerance before. DS2 was lactose intolerant, so when she started displaying similar symptoms the alarm bells started to ring. And there was only one thing it could be. Once we saw an immediate improvement we knew what it was for definate. Its just unlucky now that she is so sensitive to it.
I will give the paed such a roasting if he implies that I'm wrong or I need to get over things. Grrrrrrrr
Fingers crossed anyway. Once its diagnosed I can join the coeliacs society and they will tell me all the cans and can'ts
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Post by mashpotato on Apr 29, 2006 9:21:05 GMT
A little boy at one of Saul's special needs groups, has allergies to dairy and soya, so as you can imagine his really limited on food. He was never tested for them the hosp just told them it was this. His mum had been saying he must have an allergy for a year, before the hosp agreed, but this was after the constant reflux melted his throat and so he has a traceotomy (sp) now until he can breath with out it. As his getting older and his food is still so limited, his mum wants his dairy allergy tested to make sure he does have one.
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Post by Rilith on Apr 29, 2006 17:28:40 GMT
I thought tha lactose was bad for what it was in. Gluten is in everything, from the obvious stuff like bread, cereal and cakes, to the lesser obvious stuff like cordial, gravy and calpol.
I hope the little boy got sorted out in the end, it must be so distressing for mum to watch him go through it all the time.
I'm just really thankful for Holly's NG tube, she is totally off her solids ATM, I'm lucky if she swallows the smallest of amounts. It really worries me that she will have a peg put in and alsorts. You know how us Mummys panic...LOL
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