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General health

Dd still ill, over six months and no diagnosis.

57 replies

PikachuSayBoo · 15/09/2016 18:17

I'm at the end of my tether with it all. She's sitting her GCSEs this year and is crying in pain most days.

Until last Feb/March she was generally fit and well (apart from a case of shingles a year previously)

She started complaining of acute episodes of chest pain and breathlessness. Would be doubled over and crying. Generally worse in the evenings/night and worse when lying down.

I took her to out of hours one evening and they couldn't find anything wrong with her and said it could be stress. They recommended a blood test but dd refused.

These attacks continued and I was dubious about the stress diagnosis. She would go to bed quite happy and then an hour later come down crying. One night in a hotel she spent all night propped up in a sitting position as she couldn't lie down.

She finally agreed to a blood test mid/end July and her Vit d was a bit low (52) and although her Hb was ok her ferritin was low at 7. So she was put on vit d tablets, iron tablets, contraceptive pill to regulate her periods and mefanmic acid for pain relief.

So she's been taking these tablets for two months. She's to go back for a repeat blood test next month.

But she's no better. I would say she's worse. She says she's been crying at school all day as she's in so much pain. Still mainly chest pain and breathlessness but also stomach pains at times. She says she gets hot flushes, bad headaches and feels weak/dizzy/faint at times. Surely the tablets should have sorted out the anaemia/Vit d issue by now?

Ive also tried her on gavviscon as I read that lying down can make heartburn worse but that doesn't seem to have helped.

I'm worried this is really going to affect her exams. Not sure whether to wait another month for her blood test or go back to the Dr now. Won't they just say we need to give the medicstion longer to see if it works?

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Witchend · 15/09/2016 18:38

It doesn't sound dissimilar to dd2 last year. She also was very low on vit D and minorly low on ferritin.

It's mostly anxiety though for her. Has that been considered as an option. The GP was seeing her regularly, about every 6 months and she's just started a course at CAHMS. She's much better than her worst, but occasionally has episodes.

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PikachuSayBoo · 15/09/2016 19:29

Sorry to hear your dd has been unwell as well.

Dd is a worrier. So maybe it is anxiety. Six month waiting list for CAMHs though.

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SheepyFun · 15/09/2016 19:55

This is a long shot, but could it be chronic hyperventilation syndrome? A close friend had it, and it took 18 months to be diagnosed. It's normally anxiety related (though not in their case), but breathing exercises can help.

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PikachuSayBoo · 15/09/2016 20:04

Thanks Sheepy, have just googled it and certainly some of the symptoms seem to fit. It's just odd though that the pains can come on so suddenly when she can be fine one minute and in agony the next. Id have thought that such bad stress induced pains would come on after a period of worrying about something not laughing and watching TV?

But I'm no expert and I think for the sake of learning some breathing exercises it's worth trying that so will sit down with her tomrrow and go through some exercises I found online.

She's just gone to bed as she's so tired and within 30 seconds of lying down was screaming in pain, saying it felt like someone was stabbing her in the stomach. One minute of sharp, stabbing pains and then she's totally fine.

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Cel982 · 15/09/2016 20:06

She hasn't really been investigated properly yet, by the sound of it. It may indeed be stress-related, but if she's breathless to the point that she has to sleep propped up on pillows, then she needs a chest x-ray at least.

I'd take her back to the GP, be very specific about the night-time breathlessness, and ask for a chest x-ray.

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Titsywoo · 15/09/2016 20:12

It sounds like it could be a stomach problem. I had similar at her age and it felt like chest pain. I still get it now and I get a breathless feeling when lying down when in pain as acid splashes up my throat and into my lungs (according to GP). I don't get the burning feeling that many get with reflux I just get pain in my chest going through to my back.

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SheepyFun · 15/09/2016 20:24

The pain was intermittent, lying down was worse, and it was sufficiently severe that my friend was investigated for heart attacks. Breathing exercises don't have side effects, so they're worth a try!

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JillJ72 · 15/09/2016 20:29

Vitamin D takes a little while to really kick in. DS had low vit D and I think it took 8 weeks before he started to look brighter and more like usual self. I hope the combination starts to have positive results, and yep, get support. Does she does exercise? I wonder if meditation type exercises may help with anxiety. Does she talk to you? Let things out or bottle up? Armchair questions here, I'm not a medic. I hope she's feeling much better very soon.

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sadie9 · 15/09/2016 20:32

I have stomach acid problems (on Losec now for a few years). Are the pains worse when her stomach is empty? Like first thing in the morning, or just coming up to dinner, and indeed nighttime?
Especially bad at night if you eat heavy desserts in the evening time.
That time in the hotel where she had to sit up all night, had she eaten a big meal very late at night? Or fish and chips or curry or some such I wonder.
I know there are over the counter PPIs like Nexium etc, but not sure what the age limits are on taking those, just to see is it stomach acid.
Stress exacerbates the stomach acid issue (at least it does for me).
And as the other poster says, I get a pain under my left ribs and pain going through to the back like someone nudging me in the back.
When she lies down, the stomach acid moves around.
Gaviscon isn't enough to stop my stomach pain, I need the stomach acid inhibitors.
Is she a normal weight for her age? Does she eat a lot of citrus fruit and/or drink a lot of fruit juice (it's just very acid that's why I ask).
You could try keeping a food diary yourself somewhere discretely and see if certain foods on certain days make these symptoms worse (a long shot, but you never know)....

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Thecontentedcat · 15/09/2016 20:38

Has she been tested for coeliac disease?

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PikachuSayBoo · 15/09/2016 20:44

She's normal weight.
Doesn't exercise apart from at school, she says she feels too weak to come for a walk/cycle, etc.
She doesn't eat/drink a lot of acid type stuff. Doesn't have fruit or fruit juice.
When we were in the hotel she'd eaten a large pizza that evening.

She does talk to me but I think she does worry a lot. She's just cme back to see me saying she's worried she's going to fail her exams because she's too ill to concentrate at school. I keep telling her it doesn't matter, that she just does what she can and that im sure she won't do as bad as she thinks but if she does we will deal with it/won't be the end of the world. But she puts pressure on herself.

I'm going to ring school tomorrow and talk to the pastoral person for her year and let her know what's going on.

Will go back to the GP and ask for acid inhibitors rather than gavviscon. And if that doesn't work push for a chest X-ray.

Thanks everyone.

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PikachuSayBoo · 15/09/2016 20:46

She hasn't been tested for celiac disease. That was something which had crossed my mind and i was going to see if they would test for it when they redo her bloods next month. Or I might just get one of the finger prick tests from Amazon.

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Hellothereitsme · 15/09/2016 20:50

I take it they have ruled out gall stones.

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EarthboundMisfit · 15/09/2016 20:50

Has she had an ultrasound? Sounds oddly similar to my gallstone symptoms.

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EarthboundMisfit · 15/09/2016 20:51

Ah xpost

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PikachuSayBoo · 15/09/2016 20:53

No, they haven't checked for gallstones. I'm ringing the drs tomorrow now.

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mangocoveredlamb · 15/09/2016 20:54

I would suggest they look for gallstone and or pancreatic problems.
It sound exactly like the issues I've had since I was a teenager with my biliary system.
Ultrasound and MRI for imaging of the organs and bloods for amylase an lipase when an attack occurs.

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EarthboundMisfit · 15/09/2016 20:54

Good luck

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EarthboundMisfit · 15/09/2016 20:56

In the meantime getting in a hot shower offers me some relief

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PikachuSayBoo · 15/09/2016 20:57

Have just googled gallstones and the Dr did spend quite some time poking and prodding her tummy which apparantly is a first line test for gallstones and then if the Dr feels the gallbladder is inflamed a scan will be ordered.

So maybe that's why he was prodding her.

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JillJ72 · 15/09/2016 20:57

It might be worth keeping a food diary, as previously mentioned, and monitoring her moods, what's going on at school etc, as that may point to some triggers. It's good she recognises she does feel stressed. Absolutely - and I say this really strongly - if she's in exam years then yes they are important, but never so important to be at the detriment of mental and physical health. Schooling will always be there. I hope the school is supportive with pastoral care. I get it, it's demanding, stressful, important, but context is everything, and not achieving today doesn't mean you can't have another go another time. Poor DD. Wishing her well. You're doing a fab job.

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JillJ72 · 15/09/2016 20:58

It might be worth keeping a food diary, as previously mentioned, and monitoring her moods, what's going on at school etc, as that may point to some triggers. It's good she recognises she does feel stressed. Absolutely - and I say this really strongly - if she's in exam years then yes they are important, but never so important to be at the detriment of mental and physical health. Schooling will always be there. I hope the school is supportive with pastoral care. I get it, it's demanding, stressful, important, but context is everything, and not achieving today doesn't mean you can't have another go another time. Poor DD. Wishing her well. You're doing a fab job.

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EarthboundMisfit · 15/09/2016 20:59

Still worth a check. I ate a large pizza about a year ago and was up all night sobbing.

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Hellothereitsme · 15/09/2016 21:03

When I had severe pain I went to the out of hours DR who was sure it was gallstones. In terms of pain it was 10/10. I've found a hot water bottle helps. My own GP referred me for a scan and 2 weeks later it was diagnosed as lots of gall stones. I suggest you get that eliminated. It can travel up the chest and into the shoulder.

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Hellothereitsme · 15/09/2016 21:06

If I was you when she is next in pain I would take her to put of hours GP or a walk in clinic and push for a diagnosis. Next time ring the replacement NHS direct number - I can't think what it is. This year is really important for her.

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