Daughter had "migraine" for 5 days now

[naughty40me]

Please anyone with any experience?

My daughter age 10 has never suffered with headaches before. Started complaining of a bad head on Sunday morning.

Now, unfortunately her step sister whom she has contact with a week ago (as of that day) is in hospital with bacterial meningitis and is obviously very ill. She is still in there now.

So, being cautious I explained the situation and 111 said to go to a&e...he ruled out meningitis due to no fever or rash.

She was still no better come NYE so took her to drop in. Dr wasn't happy and sent her to children's assessment ward telling me they would run tests.

Drs there again ruled out anything but did not perform any bloods or scans and diagnosed migraine. Said to give calpol and ibuprofen which we have been doing already. Also had 2 doses of sumatriptan over the past few days and that doesn't work either.

We spent NYE in hospital more so because I couldn't get home (no car and no taxis available and we live 30 mins drive away)...nightmare.

Got home yesterday and come last night she was crying and holding her head.

She has slept last night for 13 hours which is long for her but I thought it would help so left her.

She's now up and refusing to come downstairs. Just wants to stay in bed. Have just given her calpol and a sumatriptan but I'm so so worried.

Surely she shouldn't be in this much pain for 5 days?? Even if a viral thing she would be fighting it off by now?

I'm not concerned about meningitis but I do think the drs focused on ruling it out rather than trying to find the cause of this pain.

Tbh I'm thinking of brain tumours now and all sorts

I'm going to ring GP and ask for bloods and a scan or is that being dramatic?

Single mum with no help and no one else really to sound off. Help please.

Only just seen this thread- has viral meningitis been ruled out? I think it can only be diagnosed by lumbar puncture. I'm a bit surprised it hasn't been mentioned. HAS it been mentioned/ruled out?

Whats been happening OP? How is your DD?

What have they said?

Hey @knowmenclature

She's still unwell but with her dad this weekend. She has finished her course of antibiotics today but still has the pulsing noise in her ears and still has the chronic headache.

No one will help us it seems but we do have a clinic appointment on the 27th where I am going to question about a lumbar puncture and about if this is some kind of auto immune thing. I'm not happy with the current diagnosis to be honest.

She's missed yet more school and I had a call from the headteacher last night about it. I don't know what they expect from her, she's so weak at the moment and it's making me feel like I'm doing something wrong somewhere.

I just want my bubbly little girl back 😢

I really feel for you, as I could have written this 18 months ago. DD15 has been diagnosed with chronic migraine and chronic daily headache. Her bouts last a long time - she’s currently been off school for 6 weeks, with a constant pain level of 8/10. She has had all sorts of tests, all negative, and a variety of medications, none of which have helped. She has been referred to an osteopath and psychologist, which she is meant to start now but has been too poorly so far. We did get to her latest test last week, the tilt table test, to which she had quite a dramatic reaction. So perhaps she has POTS (which I asked about over a year ago...) We’ll see what the paediatrician says at her next appointment.

But I agree it’s so terribly hard to see your usually happy bouncy daughter in so much constant pain. We spenD a lot of time cuddling and if she’s up to it sitting on the sofa and watching TV. But she’s missing her GCSE year and all her friends so much.

The Migraine Trust in London is very well respected and as a charity you don’t have to pay if you scent afford it. Could you get there? We are under a consultant neurologist but otherwise that is where we would have gone.

Thinking of you.

OP

I recall you from another thread and did a search to make sure you.

In the last few weeks you have started thread about

• being concerned about a mark on your breast
• worried you have coronavirus because you feel so ill
• feeling incredibly lonely

I’m going to say this as gently as possible.
Do you think that you may be exaggerating the situation? Perhaps unconsciously because you suffer from health anxiety and / or you are feeling very lonely and “enjoy” players supporting you on this thread?

I hope you are both ok and get some answers soon.

It is possible for those things to happen, and you'd rightly be worrying.

Lots of people feel lonely, and tons of horrid bugs around which are sure to make some feel anxious because of corona virus when you feel so ill.

I sincerely hope your dd gets some relief very soon. The NHS have to help manage her pain effectively and be sure nothing else is happening.

I would have thought that anything would be evident by now, negating the need to lumbar ounch though, but I'm no medic.

Do reach out to your gp for help for yourself also, maybe some social prescribing to help wirh loneliness?

@Iseethesilverlining

Oh I'm so sorry to hear that your daughter is poorly too. Is horrible when they are feeling so rotten and yet the drs can't seem to get to the bottom of it.

I hope that things start to improve for you and her soon. Thank you for the support and I will look at the migraine trust but I can't get to London I'm afraid.

I hope your daughter can keep contact with her friends in other ways; I think the main thing we are hoping for is by doing just a small timetable is that it helps my dd to keep in touch with people and things but it's so hard to get that balance when she's just so unwell.

Thinking of you 

@Bringringbring

Sorry to disappoint but no I am not exaggerating and no I do not have health anxiety. I'm quite offended that you would accuse me of such to be honest and I did actually do a name change concerning the breast mark for fear it may come across as such.
FYI it was a genuine query on account of I had no one else to ask. I since got some steroid cream and it cleared up. Job done.
Yes I posted about coronavirus but it was flippantly; I have a cold and have done for weeks as no doubt many others do!! I just as just remarking at how would we actually know! I wasn't really worried.
The post about loneliness was a while ago and yes it is true I am lonely, I suffer from depression and have done for many years, almost 25 years actually and it all that time I have coped with life including minor ailments and I have given birth to two children and brought them up all with every day illnesses that come as part of that, I am not dramatic and I am not exaggerating. I work as a lunchtime supervisor and I deal with snotty children, cut knees, bloody noses, vomit etc all the time. I am not averse to germs or a health freak. I have suffered a late miscarriage where I gave birth to him at 17 weeks and I watched my mums life support be turned off when she was aged 50. I have been through some terrible shit in my life but I generally hold it together. I keep going. I'm strong.
Just because my once lively daughter is now ill from some kind of strange chronic headache that is yet undiagnosed and I have posted on here for support about it does not mean that I am enjoying the attention etc etc.
The fact that she is ill, coupled with the fact I have no help and am loosing my wage when things are already tight, is making life extremely stressful right now!!! Believe me if I could wave a magic wand and have her back to normal tomorrow I would.

Its very odd that because someone suffers from depression and feels lonely, desperately so, when her dc have gone over Christmas (which is pretty common I think from reading here) that OP must be attention seeking and is truly offensive. That her DD can't really be ill because DM is lonely and depressed! What a weird and out-dated way of thinking.

If you don't believe then report the OP, or just leave the thread. You don't have to try to undermine and add to the distress

Sending you hugs OP. It must be so horrid.

Please ignore Bring - see really not helping.

*she's

People are allowed to have more than one worry at a time. I have experienced umpteen things going wrong for me in the last few years alone.

The breast mark thing was a genuine query. Not a panic. It got sorted. I didn't dr google myself and diagnose myself with cancer or some such

In no way was I worried that I had/have bloody coronavirus! I said something along the lines of how would people actually know and why would the government really announce a mass impending Black Death type thing as it would cause sheer chaos. It was just part of a conversation fgs.

Anyway, I am in no way lying or exaggerating about my Dds health. I kind of wish I was! It's horrible being in this position, having to tell different doctors the same details again and again and being given different expert opinions that contradict each other...like banging my head against a wall.

And all the while it's me that has to deal with a crying child that is in pain and uncomfortable in a daily basis.

It's bloody hard.

What's the latest OP?

How are you, and DD, doing?

Thanks for asking @knowmenclature

We've actually had her appointment with the consultant this afternoon.

She was very thorough and gave her a full check up.
She has decided on more tests and we have to go back in 4 months.
The tests will be done sooner than that though. She wants more bloods and to look at thyroid, cortisol levels and celiacs.
She also wants her to have a normal ECG and then a 24hour ECG.

DD is quite unwell in herself. The antibiotics cleared up the ears but her head is still hurting and she is so lethargic.

She managed school for 2 hours on Monday but had to miss Tuesday. Then did some time on Wednesday but couldn't manage today.

It's getting quite stressful for me now and I think I am going to resign from my job. It's too much to juggle and I'm constantly letting them down and it just doesn't seem fair.

I work as a lunchtime supervisor but I can't do it if she is off as I have no other childcare. The dr said a reduced timetable is a good plan going forward and for her to try and attend every day. Easier said than done at the minute though.

I don't know. I'm hoping they find something underlying which can be physically treated. She's already warned me that if nothing shows up that will be the end of the line and it will be a matter of mental health services to help her cope.

It's frustrating when they keep insinuating some kind of anxiety/bullying/troubles in the family etc etc when I know it is none of those things!

Just waiting for the papers to come through now so I can take her for all the tests over the coming weeks.

Her dad took her to collect a hamster last weekend (it was one of her Xmas presents...I got her the cage etc but haven't been able to go and get the actual animal with her being poorly)....so that did cheer her up a bit which was good to see.

Trying to focus on the good parts of her day and any small achievements rather than how poorly she feels for now.

With her pain under control, thats a massive help.

I hope that the anxiety might be at a slightly lower level than when the first wave of alarm hit?

Also, can you do lunch cover whilst she is in school? Especially nas if she soends lunchtime at school she can keep up with her friends, which will alleviate some of the social isolation of being poorly at home/hospital?

Would that work for you both?

I really hope you get some good results in soon, and that you for have a supportive and amicable family set up for all sakes!

Support to you

Thank you

We have been trying the option of her going to school from 11 until 1.15pm which means I can wait in the staff room for a bit and then do my shift before I bring her home.

However, she's so poorly that she's still missing even just this time as feels she can't face it. Hence I keep having to ring in and let them down as I can't then do my shift.

It's tricky as I have no other childcare. They see their dad once a fortnight but he won't miss any work days to look after her.

Just gonna have to play it by ear for a bit longer and see what happens.

She is in constant pain and they won't/can't give her anything to relieve it. Poor thing.

Need to stay positive though.

How’s your dd doing ?

How's your DD now @naughty40me? I've thought of her a few times lately and wondered if you've been able to access any more help for her?

@thebellsofsaintclements

Thank you for thinking of her

We had a call from the consultant a few weeks ago who told me that most of her results were normal including the ECGs.

However she has very low cortisol levels so she wants to repeat the blood test on that. Apparently there is a special test they can do for this but it isn't possible right now because of COVID so I had to take her for just a normal blood test but she had to run up and down the stairway a few times first lol....the Dr said she wanted to see if exercise would make a difference to her producing the hormone or not.

We are still waiting for the results from that.

Also, she has tested positive for antibodies of glandular fever so she thinks this might be what she had either just before or at Xmas and that it can have a long effect on some people.

My DD is still not right but a little better in herself. She seems to get the headaches a lot and tires very easily and has dizzy spells etc but I do think time away from school has helped reduce the anxiety and pressure for her.

She's really looking forward to starting high school so I'm trying to focus on that and keep reassuring her that she will get better and we will get to the bottom of it!

Apologies for the late response, I've only just noticed the thread had updated.

Hope you are well too despite these strange times

Hi Naughty, has your daughter been to an ophthalmologist? I recommend it though I don't know how easy that would be given the lockdown. Has she had an MRI?
The ACTH stim test you mention is something that would require a half a day in the hospital... if it is adrenal insufficiency that's very serious. The problem is, taking a one of blood draw and looking at the cortisol level isn't that informative, as cortisol rises and falls throughout the day. The other thing which can cause low cortisol levels is secondary adrenal insufficiency...which is caused by problems with the pituitary gland. Ophthalmic tests can detect some problems in this area (right behind the eyes where the optic nerves cross over).
All this is to say - don't let lockdown delay important diagnostic tests. But also, take some of what I say with a tiny pinch of salt (also painful experience) my take on these things is coloured by my own experience with my son. He had a pituitary tumour and is cortisol deficient as a result.

Hi @BlackSwan

Sorry to hear that about your son..I hope he has got the treatment he needs now.

My DD had an MRI just before new year and everything was fine with that.

The consultant was the last line to look into anything physical. She said if nothing was found they would refer to mental health but I know my own dd and I know it's not that.

The cortisol was low and was taken at 9am as apparently this is the optimum time to test. So we did the same again last week but this time she exercised round the grounds for 15 mins, the dr said she wanted to get an idea of whether her body is capable of producing the hormone or not.

There were a few other things that got missed by the lab on the first lot of bloods so these will be done aswell.

We saw an optician who couldn't find anything noticeable behind her eyes, that was in January I think. I'm not sure how we could see anyone else with the lockdown now.

I just hope they get to the bottom of it and she gets better.

It was a nightmare all over Xmas and new year especially we were passed around loads and given varying diagnoses...so frustrating!!

Thank you for your advice and sharing your experience

Thank goodness she already had a clear MRI, I that's great. But I totally understand your frustration at not having a diagnosis. It's pretty standard to get fobbed off... if you're thrown in the too hard basket, it's convenient to suggest the possibility of mental health issues. My son was 3 when diagnosed but even then some of his symptoms were suggested be behavioural/a manifestation of some kind of quirkiness (thank you very much!). Turned out to be very much a physical cause.

If you have a nagging sense there is a physical cause, you just have to keep going until you're satisfied - which it sounds like you're doing.
If they cant do an ACTH stim test, but there is a concern about cortisol, I would ask about the possibility of doing a few blood draws at different times in the morning/day.
Out of interest has your daughter been on long term steroid treatment (like inhalers)? That can suppress cortisol production and lead to insufficiency.
My son is doing really well, thank you - it took a while to get to the bottom of his issues & have treatment but we're on top of it now.

@BlackSwan

Finding your posts really interesting. A relative has something which sounds very similar however she wasn't diagnosed until early 20s when lots of other symptoms were present.

OP please keep investigating until you get the answers. It sounds awful for your daughter.