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7 year old chronic nausea, swollen stomach, pain after eating, always cold(109 Posts)
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.
I hadn't read the OPs posts that way, she seems sensible so I doubt it's the case & I expect she's approaching the diet issues with common sense - but yes you are right, if that was the case then it definitely needs pointing out as it can be a mine field balancing a restricted diet, especially with DCs
For example, and I am not a doc either, I would suspect gallstones to be far more likely (although still not at all likely) than eosonophilic gastroenteritis or cryptic coeliac. It came on suddenly and produces pain in roughly the right place. Paediatric gallstones are rare but they do happen. What about some kind of bacterial food poisoning? Have they done a stool sample and tested it?
I cannot diagnose (as I said above) but in the hierarchy of possible diagnoses, the above are far more likely than some of the really rare conditions mentioned. And, if she is struggling to eat because of any of the above, what she will need is energy rich food (i.e all the things being cut out) or she will rapidly become malnourished and anaemic...and yes, then she will easily get cold.
The Meseneric Adenitis, which is quite common in DCs is IMO also very likely, my DD is prone to it if she's run down or fighting any bugs & it can often make her more ill than the bug itself, meaning she cant eat too - I'm hoping/presuming the OP is subbing with other energy rich foods though as I've always done with my own DD
Super in you are worried about nutrition for your DD the I find THIS STUFF can help a lot, its packed full of iron too & has immune boosting properties
I hope she's feeling better today & your GP is listening
Larry - I think you are 100% correct re parents cutting out food groups (including for the very simple fact that excluding them may then hamper diagnoses).
I am though also 100% in agreement with Rockin (& others) that if ANY of us know/recognise a very, very VERY specific (& frequently odd looking/incoherent in a medical sense to the average GP) symptoms, then i) we should obviously respond to the OP with that; ii) we (well I think this of me, but maybe I'm alone?) that we would be failing in basic duty of care in NOT responding to OP with a potential possible source IF those 'jigsaw' like symptoms 100% match something we KNOW and recognise as a poss source of the symptoms? I don't think any of us have said "oh yep, it's DEF this" (as how could we?) but for myself, I HAVE said I think is DISTINCT poss could be Cryptic Coeliac as symptoms are so bang on - hence asking OP what must have seemed VERY random Q's re matters she hadn't even mentioned.
Bottom line for me is very simple: This child NEEDS a diagnoses; if ANYONE on here can help by suggesting a condition they KNOW 'fits' symptoms, then they/I do - again, I think so anyway - have a duty of care to flag it so OP aware of it as a possible source. ESP in the face of (all too typical sadly) GP ignorance of what are sometimes actually pretty simple conditions and being repeatedly 'fobbed-off' (which is v clearly the case with OP). And proven by your words re her nausea could be coming from ANYWHERE (de facto NEEDING intervention/referral/diagnoses) yet GP simply issued a script for Domperidone? Which gets NO closer to diagnoses, will increase Prolactin production (which itself could then blur tests) and other bio-markers, and was manifestly simply an "I don't have a clue but here's some drugs dear"... when (God forbid) you are also right in stating it could be something far worse than than Coeliac etc.
Final word (on personal note re my posts to try help) is via my knowledge of Coeliac there are at least 10 people who got diagnosed SOLELY due to seeing me talk about it/the very unique 'footprint' of Cryptic Coeliac and when their GP's had failed them abysmally. That's as shocking as it is gratifying when the end result of living with undiagnosed Coeliac for a lifetime is the very high likelihood of gut or bowel cancer. Had they NOT seen me discussing it publicly, they would likely still be undiagnosed - and for me that is a FAR worse outcome than suggesting it to OP (or anyone) as an option to be I/V'd.
Yep, our first son had bad reflux which both the HVs and GP refused to fully deal with. It was only when we paid up really quite a lot (1,000s in total) to see a paediatrician privately that we got proper help. And, this was not "silent" reflux or reflux where he put on weight fine, this was borderline failing-to-thrive reflux where he ended on the 0.4th centile with food aversion.
I think this thread highlights some of the failings of the NHS to treat serious, though not immediately life threatening, illnesses in children. Here is a child who has been ill and in pain for over a month and, as you say, he gets prescribed an H+ suppressor and told to "see how it goes" by his GP. If this is not a case for an urgent referral to a paediatric gastro, I don't know what is.
I am really pleased that, in extremis, we can afford to go private. However, for those who cannot, I think you really have to work the system and advocate for your child. It is amazing that you have "diagnosed" 10 people but it is also shows a complete failure of the NHS to not properly refer and test people when they are sick and rely on guessing instead.
I am not a doc but, for nausea and gastric pain which endures, the first port of call is a non invasive scan to rule out gall stones, blockages, swollen appendix and tumours. They should also do a full blood count at the same time and a stool sample. If that shows nothing, there are further tests they could do. I sometimes feel our 21st century NHS, at least at the GP level, is more like mediaeval medicine, where docs feel it is below them to actually physically examine a patient and carry out scientific tests.
Rant over, I think the OP needs to get her daughter in front of the appropriate specialist, sooner rather than later.
AGREE AGREE AGREE*
Failure to diagnose is endemic IMHO within GP system. It is shocking, shameful, and can and does kill.
I really hope OP's DD has seen someone today - this isn't even my child yet I've thought about her every day (as I would any child knew of who was poorly but undiagnosed). Hope OP updates and has managed to make some progress, no-one (either Mother or child, as de facto BOTH are suffering) should have to suffer this. Plain wrong - and as you said, almost of another era rather than 21st century
Hmmm... I do think that DD1 is anaemic and may have a B12 deficiency too. Food has always caused her suffering so she is pretty phobic. There aren't many things she'll eat. I've tried giving her vitamins but they hurt her stomach - I sympathise because they hurt mine too and make me feel like I'm going to vomit! The A&E thing isn't that simple. I've been to A&E 6 times with my two DDs and they were utterly awful every time. They very nearly killed DD2 through sheer stupidity and it was ME that saved her!!! It is a last resort to go there - I'm scared they'll harm her rather than help quite honestly. And our local hospital is in the bottom 25% in the country for MRSA so I try to give it a wide berth. I am going to go back to the doctor on Monday, a different doctor with a list of things I want to happen. Blood pressure taken, temperature taken, (I've already taken her blood sugar as I'm diabetic and it was slightly higher than I'd expect to be honest). I want them to feel her stomach. I would like a stool sample taken. (They've already done a urine test). Then if the stool sample comes back with nothing, I want scans to look for growths, tumours, cysts etc. And I also expect to be referred urgently to a paed. Unless she becomes obviously very ill, the A&E route is a dead herring - they'll just send us home with some calpol. The excluding food groups is a temporary thing - when she becomes run down she has always been prone to losing all tolerance to dairy and gluten, this nothing new. But usually she recovered within a week or two and could eat them again no problem. This is very different, instead of getting better, she's getting worse. She seems slightly better on gluten-free but it could just be because she's hardly eating at all now. Today she had no breakfast, she had a banana, some plain gluten free crisps. Sunflower seeds, pistachio nuts and grapes. Some melon. An apple, Then one new potato, a third of a can of tuna and some broccoli with marg on it. Then she ate an ice lolly. She was looking like total crap with huge bags under her eyes - she even said she was tired which she has only said maybe three times before in her life - but she tossed and turned for three hours in bed and couldn't sleep. Every time she fell asleep she jerked awake again?!! She has always been like that. But I just don't understand how you can be that ill and tired and still not be able to go to sleep?!!
Thank you for all your replies and your kind suggestions. I am taking it all on board. I didn't take her to see anyone today because I just thought, what's the point quite honestly. I'm sick with worry myself and I didn't want another upsettingly pointless visit to the gp, if I'm honest. I have ME/CFS and I'm very tired and run down and I couldn't face it.
Super Must be a nightmare for you but I do think A&E is best plan in absence of Gastro referral...and I can see how/why going back to GP to insist on that when you're so tired yet would have to utterly stand your ground might feel a bit much
Can any of us help? Whereabouts are you as i would happily pick you up, go with you, and stand ground firmly for both of us (I'm TERRIFYINGLY good at standing my ground)
Genuinely, PLEASE let us know is we can HELP as you can't go on like this, must just be horrendous. PM me if prefer but please know lots of people are thinking about you and care ok?
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.
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.
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.
Well, that sounds very eventful 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
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
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.
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?
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.
Fingers crossed. Sounds like tremendously scary few weeks.
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
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' woman.
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?
Hi Super , I'm so sorry you & your DD are stil going through all this but I have to say, the more you write, the more I'm thinking OMG are you me 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 & 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 & 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
Please excuse all the typos, iPad & my hand/brain fail
It has added a link to a migraine site but that ISN'T the site I mean lets try again - migraineaction.org
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
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.
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.
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