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7 year old chronic nausea, swollen stomach, pain after eating, always cold

(109 Posts)
SuperAmoo Sat 19-Jan-13 21:09:19

Hi just putting this out there for ideas - DD has had stomach problems all her life that we've managed at home. Mostly recurrent stomach bugs, feeling sick ( rennies have helped the past), intolerance to gluten, dairy, eggs and soya that comes and goes. Extreme vomiting has a baby up to about 10 months. She had a stomach bug on 16 Dec and was very sick, she seemed to recover but since 31 Dec she has been at home with stomach pains, hardly eating, unable to lie down flat to sleep and, especially in the mornings, turning white as a sheet or even green and nearly vomiting. She says she can't lie down flat because the food in her stomach feels stuck and it hurts. I've put her on a gluten, egg, dairy and soy free diet but it hasn't helped, instead she's getting worse. She looks so ill. In the morning when she has to get dressed, she turns blue with cold and is the same when she has to go outside. Going to talk to doc on Monday. Does this sound familiar to anyone? Really worried.

Before my ds was diagnosed with coeliacs even though I knew it was not a bug (as it had been going on for so long and no one else got ill) the school would not let him back until I had a letter from the gp stating he had been tested (twice with a few weeks in between) for anything contagious.

He was 10 so older than your dd but was just allowed to leave and go to the loo whenever he needed, not do PE if he felt sick etc.

Go and talk to the school if you are worried. I really don't think 3 weeks off and only one doctor trip will get SS involved. Schools don't let children go with unexplained vomiting / diarrhoea, so keeping her off may be the right thing to do. I used to pick up work from school for ds to do at home as he generally felt fine. I'm sure the school didn't think we need SS help.

Hope the first day back goes ok smile

SofiaAmes Mon 28-Jan-13 09:54:48

Your dd's symptoms sound just like what my ds (age 12) had/has. He had a variety of illnesses and symptoms (vomiting, long colds, stomach aches, migraines, cold all the time, sleeping crazy long hours) culminating in Cyclical Vomiting Syndrome. Ds missed months of school some years and never less than 3 weeks in any school year. I got accused constantly of being the over anxious mother. But, I finally (with the help of my father and his colleague - scientists working on mitochondria) got ds diagnosed as having a mitochondrial dna mutation. We got in to see the world expert on this as he happened to be here in Los Angeles where we live and he put ds on a treatment of high doses of L-carnitine and CoQ10 (and a few other supplements) and for the last 8 months ds has been totally and completely healthy with no side effects at all from the treatment. Here is a website that describes mitochondrial disease and the symptoms.
Please feel free to contact me through mumsnet if you want more information. Mitochondrial disease is often confused/misdiagnosed as various diseases of the bowel and fibromyalgia because many of the symptoms are the same. RockinHippy, this may apply to your child too.

rockinhippy Mon 28-Jan-13 11:03:06

Very interesting sofia especially as I looked into Mitrochondria when I was first ill myself - thanks

super good luck for your DD for today from me too smile

SuperAmoo Thu 31-Jan-13 01:04:59

Hi all! Praying4beatrice - I'm sorry to hear your daughter is battling cancer - praying for her too. Thank you for taking the time to post on this thread. I was very relieved when a doctor finally examined my DD and as you say, about time. Well DD went to school for four hours today. She looked absolutely awful when I picked her up but she said she enjoyed it and she does seem to be getting better. Whether that is because she's following a grain-free diet or whether whatever it is is subsiding I have no idea. The mitochondrial thing is interesting - I too looked into it when I got diagnosed with ME but I totally forgot about it. My DD does seem to be VERY inefficient with maintaining energy levels - she's constantly burnt out and lies on the sofa for hours. We have a GP appointment in a week so will update - she will eventually have a test for celiac once shes been eating gluten for a month (which I am absolutely dreading). But the domperidone does seem to be helping. She told me tonight that it makes her short of breath and makes her heart race though so I shall be phoning the doc in the morning as I'm guessing the dose is too high for her. Poor thing. She looks so ill but I'm really really trying not to worry and make myself ill as well. Thank you all for your support and help. Will update soon. x

mawbroon Thu 31-Jan-13 13:13:33

Sorry to hear that your dd is so unwell. Something that you might want to have a look at is leaky gut and gut healing.

We are doing the GAPS diet because both mine have digestive problems, thankfully not too serious, but enough to warrant a new eating regime. Dont' be put off by the name, it can help many other things apart from the psychology stuff. What we eat has a huge impact on our health.

LargeLatte Fri 01-Feb-13 10:51:24

OP - just wanted to delurk. I've been watching this thread as ds1 (7) has had ongoing tummy pains for a year. He has just got a working diagnosis of gastritis and a referal to a specialist. Thought you might want to look it up as it fits some of your dd's symptoms. But mostly I wanted to urge you to push for a referal rather than try to diagnose and treat at home. Your dd's problem sounds very complex, there are so many different things it could be. What's the point of specialists if we aren't going to use them.

SofiaAmes Fri 01-Feb-13 14:29:59

LargeLatte, I hope that you find something that successfully treats your ds. You may want to look into the mitochondrial issues as well (and abdominal migraines). They are quite often misdiagnosed as gastritis. I don't know about the others, but I saw dozens of specialists over the years about ds' various symptoms. No one even had a clue of what was really wrong with him...they just kept treating (not very successfully) his symptom of the day. It was me, on the internet, with the help of my scientist father and his colleagues, who figured out what ds had and got him to the right specialist. Sometimes the parent does have to do extra work to research a complex illness and make sure that the referral is going to the right specialist. By the way, I did not find much difference in the referral system between the UK and the USA.
Good luck with your ds.

SuperAmoo Wed 23-Oct-13 23:09:12

I just wanted to say thank you to everyone who helped me here - in the end, after going from 4 stone to under 3, she just got up one day and said she felt better. She still is cold all the time and has stomach pain everyday but she is able to live a 90% normal life. I think it was probably some kind of bowel infection like giardia or the like on top of the underlying problems she's always had with stomach pain and nausea. The doctor isn't prepared to do anything more at this point - she had an ultrasound and that was fine. I paid to see a private consultant and he said she has 'abdominal migraine' and gave us a strict diet to follow. She has since refused to follow it - so I've said to her if you want to eat biscuits and chocolate and then feel sick for three days then that's up to you, but don't come complaining to me. And for now, we just plod along like that. She's nearly 8 now, I hope as she gets older she may be able to see that it's not worth eating trigger foods but...who knows. Thank you all for your help. At the time, I was absolutely beside myself with worry, I really thought she was dying so it was lovely to have some support. I really hope that your Crohns is under control now wannabestressfree.

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