11 yr Old, Day 7 of Severe Abdominal Pain/Spasms & Diarreoh

[RockinHippy]

Think I spelt that wrong, but so exhausted I no longer care

DD diagnosed Ehlers Danlos with linked symptoms of IBS etc

Bad flare up this week, meant she had very painful stomach, bad Diarreoh exhausted from lack of sleepnetc etc - forced herself into school fir SATs & they sent her home - last one she looked so awful &'was visibly spasming in pain they tried to send her straight home but she refused - sat exam & came straight home

Saw GP Wednesday - thinks on top of IBS she's also picked up mild virus & has flare up of Mesenteric Adenitus (very painful abdominal lymph glands that mimic Appendicitis)

Because of MA I have been taught pressure test for appendicitis - pain worse on release of pressure on abdomen & it's showing negative - GP checks & agrees

Discuss pain killers & GP agrees because if her age & size, it's safe to try low dose of paracetomol/codeine mixed pill - could help Diarreoh too - can't prescribe as not licensed for DDs age, but can buy over counter - discuss with chemist in Boots too to make sure I am getting lowest dose & she gives me their own brand

It makes DDs stomach much worse :( have to ring out of hours Doctor & spent the next 6 hours on emergency watch as she was in agony, constant strong spasms of pain

It wears off, but no sleep that night- she still forced herself in for her Maths SATs

Friday take her back to GP - got our best GP - she tells me that it's viral Gastritis - a she's seen 5 cases already & we had an early appointment - I stupidly forgot to mention that DD had been ill since Sunday night

Now day 7 & no let up - DD is wasting away in front of me, is in severe pain which gets worse if she tries to eat anything -

Basic pain killers not working - stronger makes it worse - Busocopan tried in past also makes pain & spasms much worse

Giving her magnesium supplements to help tissue salts & her body deal with pain

Giving her stomach flora capsules to help balance gut bacteria

Giving her heat pads

Using distraction to help her cope with pain

Keeping her fluids up with anything she will drink - mainly ginger & elderflower cordials & flat coke

She's eaten salty wheat & diary free snacks & plain rice, tried a bit of nutrition packed Spanish omelette - all kick off faster stronger more painful spasms that bring her to tears

GP agrees these all the right things to do

I'm at my wits end, she is such an incredibly tough kid, who has dealt which fractures without tears, so I kNOW this pain is extremely bad

After 7 days I am thinking there's more going on

Pain is navel & below & shoots to left (not right as is appendicitis)

Because if reaction to drugs & this not been the first time we've had similar with stress & reaction to additives in kids meds, I'm now wondering if this could be something else - Chrohns perhaps ?? -

she won't let me look in the toilet after she's been, this has kicked off the. POTsy anxiety that comes with EDS so I don't want to push her, she's already an anxious, clingy, jumpy wreck

But she has had some blood in the past & from talking to her & using colour chart thing her stools(liquid) sound dark - gawd that conversation was hard work

HELP

Ideas needed please & how do I get A&E to listen

TIA

Should have added, DH & I had minor stomach upsets last weekend - nothing like this & it lasted 2 days - I have kidney disease amongst other things, so I'm very vulnerable over reacting to viruses, food poisoning etc

No one else we know has been ill

I hope your dd is feeling better today. I would be concerned about a bowel obstruction with symptoms like that. I suffered for several months with symptoms like your daughter's. I could only mange to eat soup or yoghurt as anything more solid caused terrible pain. One night the pain reached a peak and I started vomiting faeces . I was taken to A+E and was down to theatre very quickly having an emergency laparotomy. My bowel had strangulated.

Have they not scanned your daughter or x-rayed? I would hope that they would do this to rule out a bowel obstruction. I would hate her to go through a similar experience to mine. I hope you manage to get to the bottom of it.

Thank you Marrow

That sounds awful - poor you

Sadly DD is now in hospital, admitted via A&E on Sunday & still no closer to answers or pain relief - turns out she is hypersensitive to opioids - meaning that Codeine & Oromorf both made the pain spasm more frequent & longer & much more intense - if that's possible

The only thing that has helped slightly with the horrendous spasms of pain has been diazepam, but they've only given her that at bedtime, but it least it relaxes the spasming muscles a bit.
Nothing else even touches the pain & it's been a nightmare roller coaster if little sleep, holding, talking & soothing her through horrific fit like episodes of severe wracking stomach pain, with it getting worse by the day.

She has now had ultra sound scan, which ruled out twisted ovaries & appendicitis & stones, bloods ruled out infection, gall bladder, which apparently causes pain in the abdomen & is different in DCs & more in common in teens/preteens - they've pretty much ruled out everything obvious, so started to indicate it's physiological EDS does mean her body goes into fight or flight mode when exhausted due to an abnormality in her autonomic nervous system, so yes she is jumpy as hell, butt she's tough & this is not cause by bloody stress

So I'm sick of having to argue with doctors that this is not IBS & DD does not have a low pain threshold they don't know her - I do, she rates a fracture as a 5 on the pain scale, so when she says this is 8-15, they need to listen - though finally getting through & when the doctors witness a spasm/ episode, which is something akin to giving birth - they soon shut up on the stress nonsense - though I do agree stress isn't helping her

Can I ask, did you start with diaorreah ??

DD had bad Diarreoh to begin with, but since arriving in hospital on Sunday & them needing a stool sample - nothing until late today & then that was a lot of liquid - she did manage a bit the consistency of thick gravy as a sample - they will check that for inflammatory markers, which could mean Chrohns or similar

I did mention your suggestion to the doctor this morning - I googled & realised no one had put a stethoscope to her stomach to listen, which apparently they do to check if obstruction is a possibility - so as I'm getting fed up of no action, I told him he needed to check for that, as no stool sample for several days is not normal & must tell them something - due to lack of sleep I'm getting stroppy

Thanks to that, they've passed us up the line & she will see gastro specialist team & specialist pain nurses tomorrow, fingers crossed we get some answers soon

Though realising they may have missed the site of main pain spasms with the scan, it's lower than I realised, really low left, almost groin pain, but whole low abdomen very painful to touch & hurts all the time

Thanks for your input

Your poor DD . Sorry to hear that she is in hospital but I'm pleased that they are now taking things seriously. I'm a bit shocked that they hadn't considered a bowel obstruction until you mentioned it.

I don't remember having diarrhoea. I had a few occasions leading up to the final night where I would vomit huge amounts. Diarrhoea can be a symptom though. I suppose it depends where an obstruction is as to whether things go up or down!

I remember the pain well. The spasms are very like contractions (but far more painful!) in that you can feel them coming and then peaking before they subside. I really hope you get some answers today and that they manage to get your daughter some good pain relief that she can tolerate so she can feel more comfortable. Thinking of you both.

How is she doing today? I hope they've managed to work out what the problem is and that your daughter is feeling much better.

I've had bad stomachache tonight and it made me think of your DD. Hope they got to the bottom of things and she is feeling much better.

Hi Marrow

really sorry I didn't update sooner with this, its been a bit of a nightmare few weeks, & after she got out of hospital earlier this week & the stress of that was over, my own health nose dived, I'm also dealing with a school appeal/complaint & I've just not been able to type much & thats taken up what little I could do IYSWIM.

You were right, in part at least, when they eventually X-rayed her 4 days in she had a blockage backed up right through her - turns out she also had "allergic colitis" & the severe pain was caused by the spasms of the gut trying to force the blockage out though her inflamed & narrowed colon - it explains why the antispasmodics & opiates made it worse too

thankfully after a course of high dose movicol, which shes still taking now, the severe pain episodes peaked at 18 minutes & then started getting shorter & suddenly just stopped

The gastro doctor when we finally got passed on to him, thankfully was great, at least he listened if I argued with him & double checked things, rather than accuse me of being obstructive as the other doctor did when I would let him give her drugs full of additives I know shes intolerant too

Long story short, we are awaiting allergy blood results, but she has a very bad allergy to something & stress did trigger & further shut down of her already blocked gut & the allergy kicked off the colitis - turns out the diarrhoea shes suffered for years, was the bodies way of compensating for the blockage which is now mostly cleared & she has bounced back brilliantly :)

I still intend to make a formal complaint as they wasted to much time & made a very stressful situation 10 times worse, but I need to deal with the school situation first - losing our appeal was the stress that kicked this over the edge - but we will get there & I'm counting my blessings, as 2 of the kids we were in with, ended up with cancer diagnosis :(

Oh gosh please don't apologise for not updating. I didn't mean for you to feel pressurised to replying when you've got a lot on your plate but I kept thinking of your daughter and hoping that she wasn't going through what I went through. I'm soooo pleased that they eventually figured out what was wrong and even more pleased that your DD did not need surgery and is feeling so much better.

I hope the allergy tests reveal what she is allergic to so she can avoid it and not go through this again. I also hope that you are also starting to feel better and that the school appeal goes well. I have two school applications to do next year and not particularly looking forward to it as I have seen friends go through a very stressful time with it!! Best of luck to you both.

Thank you :) - & yes, I'm definitely counting my blessings, it looked really scary in hospital for a while, but as far as what her symptoms & severe pain could have meant, I know we were very lucky indeed & she's bounced back amazingly well :)

I think we will get there eventually with the school situation, just stressful, time consuming & upsetting that it's got as far as it has - we lost our appeal, but some very dodgy goings on with our LA this year & as it's medical grounds & makes no sense at all with 5 doctors letters backing us etc etc - the local government ombudsman have accepted our complaint, so I'm confident we will win in the end.

I'm glad you've already seen how difficult it can be getting the right school places, at least that way you will be better prepared than I was, so I'm sure you will be okay - good luck & thanks again

Sadly, EDS often means that other things get ignored because everything is put down to the EDS. The painkiller thing is worth remembering. Some people with EDS, as you probably well know, are hypersensitive to medication and others completely insensitive. I have EDS type 2 and can take vast amounts of opioids without it touching the sides, while my sister, also EDS, went into respiratory arrest from a local anaesthetic. I hope they work out what she is allergic too. Severe allergies are also very common in EDS. I'm anaphylactic to penicillin. Gastric blockages and colitis are also very common sigh :( unmumsnetty hugs i hope she feels better soon-and do complain!