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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.

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.

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.

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.

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.

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

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

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.

Hope the first day back goes ok smile

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.

I'm glad you made it to a and e and sorry the doc there made you feel bad.

I took my dd in when we felt a lump in her tummy. No other symptoms except a poor appetite and eggy burps. I felt like a fraud and worried I shouldn't be bringing a basically 'well' baby in.

Turns out it was cancer. (They diagnosed it after a whole day of sitting around being told it was probably constipation or wind!!!)

So I'm really glad that the doctor examined your dd and would have at least excluded that awful possibility. About time!

Good luck, stay strong -- and sometimes part of that is showing your vulnerability, as you did.

SuperAmoo Sun 27-Jan-13 23:07:15

Thank you so much - I haven't had a chance to look at the links yet but will do tomorrow. DD was ok today - ate fairly normally and didn't vomit but did run to the loo 5/6 times and nearly sick and had diarhoea and am wondering if domperidone caused it? I'm going to send her to school for two hours in the morning - just really hoping she won't have a traumatic vomiting experience there as it will really set us back. Thanks all.

rockinhippy Sun 27-Jan-13 01:49:21
rockinhippy Sun 27-Jan-13 01:44:59
rockinhippy Sun 27-Jan-13 01:41:30

MIGRAINE INFO HERE

Good Tonic Info HERE

Joint Hypermobility Syndrome Info HERE - please remember at 7, my DD - like yours, had mainly stomach issues, with nausea, dizziness, anxiety, light & noise & sometimes touch sensitive a fussy mare with seams and labels & back then her less frequent aches were put down as growing pains - it got worse due to losing fitness after accidents - (9 months on crutches after) & her age

Mesenteric Adenitis info HERE

HTH smile

rockinhippy Sun 27-Jan-13 01:26:38

Please excuse all the typos, iPad & my hand/brain failblush

It has added a link to a migraine site confused but that ISN'T the site I mean lets try again - migraineaction.org

rockinhippy Sun 27-Jan-13 01:18:01

Hi Super , I'm so sorry you & your DD are stil going through all thissad but I have to say, the more you write, the more I'm thinking OMG are you meconfused my own DD has had to deal with all the symptoms you describe, again often for weeks on end & I too also have a M.E. diagnosis, though I've bender felt that right if I'm honest - so I can totally understand your problems & mistrust of Doctors, it's not an easy diagnosis to be heard with sad & really sorry your hospital s so bad & you don't trust them either - do you have the medical walk in centres near you yet ?? - I'd find out if I were you as that might be a better option - our A&E Told me they are able to queue jump referrals to the hospital & itscabiynlike an A&E for more minor non life's threatening stuff.

10 years down the line I am finally getting some answers, my DDs Hypermobility Syndrome Diagnosis has led to my being re referred to the Rheumatologist again, it's hereditary & my reading up to help my DD I can see why they are referring me - it is linked to both ME & Fibromyalgia, symptoms cross over massively & like my DD links my other problems all into one too - I also didn't consider myself very flexible, it was all just normal for me & I'm no contortionist, DD is a bit bendy, but again, no big deal, we both always sitbin the W form on thevfloor though - i had no idea that wsnt normal until recently - but she still scored highly on the diagnostic Beighton Score - I score highly on the Brighton score - I would recommend you look into those yourself, just in case.

The other thing that springs to mind with your DD though is Migraine - in kids migraine manifests in the stomach the flashing lights, light/noise sensitivity, nausea etc etc, are all symptoms of that too, everything you mention could be migraine - I can't link on the iPad but look up Migraine.org - it's actually run by the migraine nuro from our local hospital & there's tons of good info on there.

The other thing I wanted to say - with your DDs intolerances - my own DD is exactly the same - if she's well she can tolerate wheat & dairy without any problems, though generally not lactose, she needs cheese to be cooked or mature as is lower in lactose, she needs lactose free milk etc - she can eat spelt flour fine, so I can cook pizza, pies, cakes etc with that, or other flours

you don't mention additives though, & I wonder if this could be a problem for your DD as it is mine?? These can be a far bigger trigger for my DDs stomach & skin problems than wheat & diary & kids medicines tend to be full of artificial sweeteners, colours & preservatives -

My DD has to have the white adult parecetamol or Ibruprophen as Calpol will make her really ill - kids antibiotics are also packed full of additives, these affect my DD so badly that she has ended up in A&E & they got as far as hooking her up to a drip for surgery, telling me it was appendicitis - a more senior surgeon said it was actuallyncolitis, ie inflammation in her colon - caused by the additives in the medicine, on top of the bad side effects of the antibiotics themselves - her skin rashes with these additives too, but they also affect her insides, causing stomach pain & diarreah that led to her original IBS diagnosis.

If my DD needs antibiotics, she has to have the adult capsules, which we have to break open & mix the powder with honey, to avoid the red die & shellac in the capsule it's self - this helps a lot to avoid making her stomach worse.

We also give her Viridian stomach flora powder, mixed into a smoothly or something - this helps rebalance her gut & again helps her get well - the spirulina we give her gives her iron & most vist & minerals in good doses along with an immune boosting enzyme.

When her stomach is bad my DD tends to get pain & diarreah, with nausea & dizziness & exhaustion, aches & pains - keeping her off wheat & diary for a few days & giving her white bulking foods such as rice & potatoes & I find turmeric can work wonders - it's a curry spice, but it's used medicinally in India too - it soothes & reduces inflammation in the guts & has been a godsend for us - I usually just add a teaspoon to the water for cooking the rice, DD eating turmeric rice a few timesba day, with no wheat, disry or additives usually helps settle things pretty quickly smile & we use heat pads to soothe her stomach too.

As far as school goes, I agree with the others, if she's vomiting or diarreah, then school rules with ean they will want her to stay home - though with stress related chronic diarreah, the school should work with you, ours do with DD - she wants to be at school, so they accommodate that by letting her rest in the quiet corner if she needs too, my DD can really struggle with class noise too

I would highly recommend making an appointment to see the school nurse, ours was a huge help with both getting the school to take it seriously & advising on which specialists to see & even just ideas on possible cause. It could help you stop worrying about keeping her home & help with strategies for combating the anxiety over sickness at school.

As a foot note & please don't take this as criticism - I'm speaking from personal experience of being ill & exhausted myself & dealing with extremely ill DD & finding it hard to get help for years - cut yourself some slack & understand & that your exhaustion & the stress you are dealing with will make you highly anxious, it in turn will make you mistrusting of your GP & it will make it hard for you to listen & understand properly what they tell you - you need to speak up & not be too proud to say - I am ill & exhausted myself & finding this hard to follow - please help me understand what this is & why you are giving DD this treatment & what happens next - make notes, ask questions & write down the answers & double check with the doctor that you have understood correctly - it's too easy in our situation to misunderstand & it leaves you feeling more stressed & that you aren't been heard - been there, done that wink

Good luck

StoicButStressed Sat 26-Jan-13 23:54:55

Super Am appalled by pretty much all you've told. Examining her is a fundamental part of seeing her so kinda outrageous it sounds like he only did it to 'appease' the 'neurotic' womanangry.

Re school and vomiting (and leaving aside the sort of separate issue of her needing to be with friends etc, and the VERY valid concern of her not developing a phobia), ALL schools have polices in place that if a child vomits they're not allowed back in school for either 24-48hrs depending on school's policy. So feels like you're damned if you do send her in after she may have vommed the day before and damned if you don't. The colours in front of her eyes are a very real symptom of something and the idea of nothing being done and you having to cope with this until 7th Feb seems horrific.

Can only reiterate what said previously vis her needing referral. Am thinking of you both.

PS Random Q (but isn't IYKWIM), but are you by any chance on the low end of BMI scale?

Fingers crossed. Sounds like tremendously scary few weeks. sad

I really hope for both your sakes that she starts perking up
A bit as the diet kicks in. If the sleep issue sorts it's self then the others shouldnt be far behind with any luck. Sleep is always the key to starting and aiding a recovery.

I hope you are managing some rest too x

SuperAmoo Sat 26-Jan-13 23:03:02

Well, if I stick to the plan the GP gave me last Monday, she should take Domperidone for another two weeks and then go back to GP on 7 feb. But I'll see how if goes with school. If the domperidone keeps giving her diarhoea, I'll go back sooner. I'm greatly relieved that she went to sleep without any freaky things happening. Lastnight when she kept waking up and couldn't get to sleep she said it was 'all the colours in front of her eyes keeping her awake, especially green' and also the ringing in her ears. As mentioned the doc thought that was highly neurotic of me to think anything of it. It really freaked me out though but she didn't mention it tonight so maybe she is getting abit better.

Hopefully getting back to normal
A bit will help. If she stays near the door so she can make a quick exit if she needs to will ease the worry a little. When are you next going to see the gp?

SuperAmoo Sat 26-Jan-13 22:49:36

Yes, I had a talk with her and she'd like to give it a go for a couple of hours - so I'm going to pick her up just before lunch. I think it would be good for her to see friends and have something else to think about. But I am going to talk to the teachers and say that I need them to keep a close eye and let me know quickly if she becomes ill. To give her a sick bowl if she asks for one and let her get some air if she needs it. It's a lovely school but there's 30 of them in a small classroom and I can see how that might not be a great environment when you feel nauseous and sensitive to light and noise.

Well, that sounds very eventful sad he sounds like he was a little rude I have to say. You can't have a go at someone for not seeing a dr and in the same meeting make someone feel they shouldn't be there sad

Glad to hear she finally had someone examine her!! She sounds so I'll it seems unbelievable that he wanted her back at school but I guess it can't hurt to give it a chance given shed not infectious. Perhaps you could speak to teachers and get them to let you know of its too much and you need to go get her

brew biscuit

SuperAmoo Sat 26-Jan-13 22:03:20

I also mentioned the sleep thing but he said I should stop driving myself mad analysing all her behaviour or I would make myself ill. Then he said to her, be a good girl and go to sleep for your mummy. So he was quite condescending in some ways.

SuperAmoo Sat 26-Jan-13 22:01:47

Hi all, thank you again for everyone's kind advice and offers of help. She looked so terrible this morning and she had itchy hives in patches on her face so I took her to A&E but it was quite as I thought. He looked at me and said - I don't know what you're doing here. This isn't an emergency. You should just go to your GP. He said I can't believe you've kept your child off school for three weeks and only been to the doctor once. What you're doing is wrong and you must trust your doctor and give her the domperidone. Then, I have to admit, I became rather hysterical. Looking back I am very embarassed but I'm so wound up, I just fell to pieces, I ranted and raved, and swore and cried. I'm kind of mortified. But on the plus side, I think he realised I was a person on the edge and then he was abit kinder, and said there isn't anything I can do - it's Saturday, she doesn't need to be admitted because she's not vomiting or dehydrated or anything, which is fair enough. I said about domperidone masking symtoms but he said no, that's not the idea, we need to get the symptoms under control before we investigate the cause. He examined her properly - I know that was to put my mind at ease so that was kind of him - he said it didn't sound like anything sinister. He said keep the diet going for now and give her the domperidone to help her feel less sick. She was actually sick outside the A&E dep in front of the nurse but she said later it was because she was so anxious. I did give her domperidone and it did enable her to eat some rice and tuna and not wrythe around in pain afterwards or turn green. But she did get bad diarhoea. So I didn't give it to her again this evening but she seems to have gone to sleep ok so for that I'm very grateful. She still looks terrible. But he said that, unless I wanted to get into serious trouble with social services, she must go back to school, vomiting or not. He also said if she is coeliac, she could be feeling like this for weeks on the diet, while her system recovers. So for now, I am giving her domperidone. And he prescribed Fucidin cream for the impetigo which is perfect, just what I wanted. I will try and get her to school on Monday but she has developed a very intense fear of being sick in public because she keeps feeling so nauseous so we'll have to see how that goes. He said it wasn't good for her to be sitting at home thinking about how ill she feels. And I agree, in part. She doesn't want to go into school assembly, because she's scared she'll throw up in front of everyone. She's developing a proper phobia and I sympathise but I don't know whether I want to 'humour it' by saying ok you don't have to go into situations that make you anxious 'just in case you're sick'. Because that just reaffirms the behaviour. I know quite abit about emetophobia (fear of being sick in public) because as a girl, I was freqently sick (but I didn't have pain or look ill like my DD) and I became terrified of social situations or situations where I couldn't make a quick exit. So I'm torn between adapting situations for her fears or trying to stamp it out now before it becomes life-limiting. And the fact is, anxiety aside, she does look like crap and clearly isn't well. Sorry to go on.

larrygrylls Sat 26-Jan-13 13:06:13

Super,

How is she today. The only time I have seen that jerking awake thing is when one of our children was little and had flu and had poor but not disastrous oxygen saturation (around 93%). I think if their oxygen sats dip when they sleep, the nervous system wakes you up to start breathing more aggressively. Is she breathing OK (breaths per min, rib recessions etc)?

She sounds really ill but, I agree, unless she is sick enough to warrant in-patient treatment, a proper referral will get you where you want better than A&E.

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