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.

Thanks everyone

She's still no better I'm afraid. It feels like she's been ill forever but it has only been 2 weeks, coming up to 3.

I'm hoping it is viral and will start to clear up but it doesn't seem to want to shift.

I will try the dioralyte and make sure she drinks it. She is drinking a fair amount and eating little and often. Had her out for a walk to the shop for the fresh air. It's only a few mins up the street but it's a start.

We should get her new glasses this week so that should help too. I'm going to get her back to GP for more tests/medications if things don't improve.

My feeling is that it's her ears. She has had several ear infections before. Vestibular neuritis seems to explain all her symptoms but of course I'm not a doctor. Could well be hormonal too.

School haven't chased me up yet this week but my son goes to the senior part of the academy across the road and I work for them, half of staff are on my Facebook..you would think they would trust we aren't on holiday lol. I haven't had a holiday in about 8 years!!

Just wish I could make her better.

Back to GP this morning and bloody come walking down street to find attendance officers knocking on my front door!!!

Explained to them everything and gave them a letter I had from her stay in hospital NYE.

I feel like I'm in major trouble but haven't done anything wrong 🤦🏻‍♀️

DD is still the same but GP now says the Pizotifen can cause dizziness so to stop that and all other medicines (calpol/ibuprofen) and time go back next week after keeping a headache diary.

Also going to get her to school for an hour or so each morning from Monday. I had already discussed everything with my supervisor this morning so clearly the visit from the authorities was requested prior to this.

I know they're only doing their job but things like this don't half stressed me out!

You need the namesd officer in lea who deals with children missing school due to illness.
Ask
Who it is and liaise with them

Download the statutory guidance look up Gov.uk

Education for children with health needs who cannot attend school

Statutory guidance for local authorities and departmental advice for others ensuring children with health needs receive education.

Don't worry about it. What can they do? Makes me so cross. As if you don't have enough on your plate.
Pitzofen made my daughter act really strangely.

If your child is unable to attend school for weeks they are obliged to provide education eg group or tutor .my dd went to hospital school as day pupil for a year gradually building up time

@Embracelife

Thanks for the info. I've been looking up on their politicise etc. We're gong to trial her going in from register until break to start with. From what I've read I think I will probably be asked in for a meeting with the education welfare officer. She must have hit way over the "critical" 21 days now. (According to their website) I know she missed about 15 after her appendix out and now all this not to mention time off for flu.

@Ledkr

That's the conclusion I have come to; sod them

Well DD went to her dads this weekend. I thought the change of scene might help her a bit.

He's rang this morning; she's fainted about an hour earlier.

She says her head still hurts a lot (number 10 she says)

I'm starting to think hormones cos I used to faint before I started mine and I was the same age.

Have they rules out Idiopathic Intracranial Hypertension? All her symptoms sound like it - squeezing head pressure, stiff neck, dizziness, nausea, visual disturbances.
Not all doctors have experience with it and it can be treated. Your description of her symptoms just sounds so familiar.

Reading this thread reminds me of when DD got ill when she was 14. That started one day with a headache and abdominal pains and she just never recovered. She was eventually diagnosed with CFS and is still ill 4 years later.

Dizziness and fainting is also very common with it, which can suggest underlying POTS. The key symptom of CFS (aka ME) is deterioration after activity, so maybe observe and see if that fits with your DD.

That said, I've had viral meningitis and that felt like a shrinking helmet on my head. I spent a week in hospital on painkillers and then it took a couple of months to recover from the fatigue.

@FairytaleofBykerGrove

No they haven't mentioned it. I'm going to get her back to GP tomorrow.

Something is causing this awful pain and it's just not shifting. It's been 22 days now.

@BonnesVacances

It's interesting that you suggest that. Sorry to hear about your daughter poor girl

I've suffered from chronic fatigue and pain for a few years now and no amount of scans have shown anything. I've got nerve damage now and get stinging and stabbing pains on my face and I have daily headache, all for the last 4/5 years.

I think I may have ME but nothing has been diagnosed. I really hope it's not abd that I haven't passed it on to my DD.

I'm also starting to think now about my mum. She passed away 12 years ago but she had a heart valve replacement when she was in her forties. Apparently it was something she was born with but obviously no scans back when she was in the womb!
I really hope it's nothing to do with my DDs heart!! Probably just my mind running away with me.

Not sure heart problems would cause a headache anyway.

I have fibromyalgia / me. It is very painful. I have to avoid certain foods as get migraines too.
Maybe get a book on foods to avoid if you suffer with migraines.
Chocolate, cheese. Caffeine, pizza. Whole milk. There is loads of triggers. X

Sorry to hear she's still unwell. Have you tried a migraleve tablet? Also if you could afford it take her to an osteopath - they might be able to sort her out if it's tension related by releasing any tightness in muscles.

If she faints you can take her to a and e to get checked
She needs to be under a paediatrician
Whi can refer to headache clinic

It might be just a coincidence, but it's worth checking the symptoms of ME and POTS and seeing if they fit. It doesn't sound like it's going to get you far if you're already being given the run around medically and at school, but it'll help you know what advice to look for and where to go. If you do end up on that path, feel free to PM me.

Citrus can trigger migraines too.

How is your dd doing ?

Agree with PP, has anyone mentioned Idiopathic Intracranial Hypertension? I have IIH and was in a similar position as your daughter with no one working out what it was. In the end I went to the opticians who noticed swelling on my optic nerve so was sent to hospital for urgent scan and had a lumbar puncture to relieve the pressure the next day. So if no luck with GP, maybe try the opticians for a check up?
Hope you both get to the bottom of it soon, it's horrible to see your child in pain

hello, ive just been reading through your post. i had come on here to see if anyone had similar to what my son is going through.
i dont have any advice but wanted to say my son who is 11, started lasted week with abdo cramps - nothing else, it then went to blurry (he says blurry, no flashing lights etc) and a bad head. he wasnt sick at all, kept feeling sick at times but never lost his appetite.
ive been to the drs so many times! theyve checked him over (i also was concerned it was something sinister). on monday they gave him a preventative to try but also said to stop the nurofen as that can hinder it. he went to school yesterday and i think the distraction really helped. ive booked an eye test for saturday too just incase its that.
he had the head and blurry eyes for a week, and complained of it again before bed last night and this morning.
i just wanted to say you arent alone, and i really hope you get some ansers or at least your daughter starts feeling back to normal

UPDATE:

Thought I would come back and post for anyone who may be interested lol.

Unfortunately my DD took quite poorly last night and was in awful pain. Her heart rate was really high and she was burning up too. I managed to calm her and she slept but this morning no better really so back to GP who sent us back to the hospital.

She was by fluke seen by a specialist in child headaches this afternoon. He has diagnosed her with NDPH (New Daily Persistant Headaches) abd has given me a leaflet from Great Ormond Street hospital about it.

It seems to be a long term thing that we will have to manage with relaxation and a referral to CAMHS for counselling.

We are still going to be followed up in clinic at the end of the month so I'm still going to keep a record of her progress. So far she has managed a reduced timetable at school doing 2.5 hours per day but has missed days in between.

It means I'm missing work too. I think I may well need to leave my job. It's only a lunchtime supervisor role but it suits me perfectly and I enjoy it and need the money.

It sounds selfish I know but I am literally exhausted now and feel like it's all on my shoulders, I can't get her better and it feels awful. Every day is starting to be a struggle now and it's hard to keep strong 😔

I'm so sorry she's still poorly. You all must be exhausted. I hope she can get well soon.

I'm so sorry OP, that sounds horrific!

Keep pushing for more tests though - there may be still be an underlying cause even if the new diagnosis is correct. Has she had bloods tests yet?

So sorry OP. To be honest that diagnosis sounds like they are just giving it a name because they don’t know what it is, like gastric trouble is labelled IBS when they have exhausted all other possibilities.

Thanks all.

I'm beginning to think we are being fobbed off big time now.

Last night she woke up (3/4th night in a row that the pain has actually woke her) came into my room and said something funny was going on with her ears.

Got in my bed, was crying in pain and struggling to settle. Tried relaxing music, calpol, even a stern voice at one point as she seemed a bit hysterical and I thought she was maybe getting past herself.

Then all of a sudden she vomited. Was holding her head screaming in pain, begging for me to make it stop and holding her ears.
I rang an ambulance.

She was inconsolable but we ended up waiting for an hour only to be called to say that there were no responders and that they would send a taxi.

The dr said her ear looks a little inflamed and would prescribe antibiotics and said that this may have made her sick. Then an ENT doctor saw her and said there was a lot of wax so to hold off on antibiotics for now and use olive oil drops and a nasal spray.

Go back to GP if pain worsens. But the thing is she is complaining now that she has a pulsing in both ears, from what she describes it is simultaneous and fast in both ears so I think it is her pulse that she is hearing.

This is one of the symptoms of Intercranial pressure but she wasn't displaying this previously. It's as though everything is suddenly much much worse and presenting itself but the drs seem ok with us just waiting to see the paediatric clinic as we have an appointment on the 27th.

I just don't know what to do. I know my own child and she isn't normally anxious and loves school, thrives in doing her work etc. They seem to be trying to insinuate it's all a mental health thing but I know it's not.

I so wish we had the money to go private.

It's bloody ridiculous.