Children with migraine

[Solo2]

Does anyone know some really good advice forums or websites for parents of children with migraine?

DS2 (aged 9) was diagnosed - by default - having had anything else ruled out by Consultant - so they said it must be migraine . He's just started another bout of early morning headaches - which cripple our lives and which seem to occur more often when he can relax/let go at hol. times. He's just had two weeks of school exams and some late night performances of a play he was in too - and from day one of half-term has had migraines in the mornings.

I have loads more questions but can't go back to doctors again as we've already had 2 referrals on to Consultant now.

Anyone else have a child with migraines who 1) sweats profusely at night, before a morning migraine - to the extent of soaking the bedding? 2) has a rush of creative energy post headache and is unusually and noticeably full of ideas and thoughts? 3) demonstrates as a precursor of the headache - specific fears/ phobias that don't manifest except in the build up to the headache 4) has a two week slight but noticeable loss of appetite in the build up to a migraine bout? 5) sleeps only about 7 hrs a night when he's having a build up to the migraines and then continues to sleep less whilst having up to 10 days of these headaches (which always occur about 1.5 hrs after he wakes and last up to 3.5 hrs)

I know little about migraines - which don't run in the family at all. I wonder if he's getting v mild temporal lobe activity that both causes the sweating and then the post-headache creative energy drive?

I'm looking for quite medical info. as I'm in a profession allied to medicine myself - but don't know nearly enough.

Here.

Will come back to this later when more time.

Boots sell a series of books on illnesses, one of which is about migraine, and is written by a dr who works at the London Migraine Clinic (qv). I found that v good.

It's easy to sort out when you know how!

Fantastic book IMO

Thanks. No one mentioned epilepsy - though I wondered about that myself - but he doesn't have any kind of incoherence or loss of speech etc as far as I can tell. The headaches are usually moderate rather than severe and always always across the front of his forehead only - hence unlikely to be cluster headaches??

He dribbles and sweats at night often but last night wet the bed too - an almost unique occurrence. I wonderd if sleep apnoea were responsible for the headaches, as he had this noticeably as an infant to age 5 but the doctors dismissed this and dismissed a referral to ENT too.

I've even thought of trying to find a top notch private consultant as a one off (no health insurance) and wonder if there's someone at the London Migraine Clinic - that I'd never heard of - who could help?

I'm just not convince it's migraine but they seem to have ruled out anything else. We were just told to get him to have enough sleep (impossible if he's in the midst of the insomniac migraine in morning cycle), eat and drink enough - also difficult if he's in the midslt of loss of appetite thing and keep him calm - also difficult as he's by nature a worrier and has mild Asperger's traits where he'll obsess about what worries him.

Really, I was told not to worry as it was unlikely to be a tumour (they never did any scans though) and that's it - discharged.

I really want to know about the specific nuances of migraines and the link with temporal lobe activity and exactly what's going on neuroanatomically and with brain neurotransmitters etc etc.

We tried various food exclusions and nothing affected him and he can eat chocolate and cheese no problem and have no headaches for months and months and then out of the blue, they happen again.

The woman who wrote the book I linked to works at the London Migraine Clinic. I would personally try to get to see her. The book does deal with other causes of headaches and is really very good - try and get it either from Boots or Amazon. It's also reassuring.

I am sorry you and he are having to go through this.

FWIW we have found Bowen Technique v effective against ds' migraine, but his symptoms are clearly migrainous. (It's an alternative, body thing which has quite a lot of research backing it up.) Also we have followed the advice in the book, and just keeping his blood sugar even by regular feeding (ie putting peeled apple, flapjacks, grapes, etc in front of the computer!) and making him drink water seems also to help. Keeping him fed keeps me busy, but worth it. He is all too keen to skip food or just not eat enough.

Hi Solo.

I would try to get a referral to a neurosurgeon if possible, or otherwise just someone who will pay for an MRI. The reason I say this is that my son has a condition known as Arnold Chiari Malformation. The symptoms frequently include headaches across the front of the head, sleep apnoea, dribbling, and I can provide the name of the chap who has done research to show that 25% of all Chiarians have some form of autism (like my son).

The only way this condition is ever shown is though an MRI scan. My son had one when he was 4 which showed the abnormality. It is a condition often not recognised, and the associated headaches are often mistaken for migraines. The reason it is often not recognised is because it has massively far ranging symptoms.

Trust your instincts. Don't stop until you find someone who will scan your son.

That sounds worrying, MotherJack. Had never heard of ACM. I think DS2 was only diagnosed with migraine because he hadn't any cognitive issues going on (is actuallu doing v well at an academically selective school) nor issues with balance and because he's totally fine between bouts, they didn't think it was anything to worry about.

I'm going to have to think hard about this. Today he's lost his appetite even more. His 'migraine' began v predictably at 7.30am and I immediately gave him Ibuprofen and he lay down and after about an hr only, he said he felt fine again and seemed OK all day - except for this ongoing drop in appetite. I still wonder if there's an underlying virus that seems to bring on the headaches.

Thanks also JodiePicolax and Pixieonleaf. I do think an appointment with an expert would help to allay my fears or give me new insights. I don't really know what's my 'normal' DS2 and what's something to do with something else going on - eg he's quite moody and irritable but this alternates with almost hypermanic laughing until he almost cries, around last thing at night whilst playing with his twin. It could be anything from his age (maybe touching on or near puberty at age 9??? or at least the hormones increasing) - or his Asperger's traits or his ordinary personality or simply being overtired/ stressed, in pain????

I'll see how things go and also see if these 'migraines' get more frequent. He had none at all till last summer and then I think has had 3 7 to 10 day bouts and a couple of one to two day ones too and the latest one is closer in time to the last than the others were to the other ones.

I didn't mean to worry you Solo. I had never heard of ACM until last October either! Symptomatic chiarians are rare and as such, my son is extremely unlucky. We never knew he had Chiari until it was picked up in a scan and then things started to slot together, eventually making sense.

I do think it would be worth your keeping a diary of events/moods/potential triggers/random thoughts. My son never had balance problems (until, unfortunately this last month) and is fine between symptoms.

Keep pushing. Ask to be referred to someone else if you feel you are not getting to the bottom of the problem. Chances are it isn't chiari, but I had to pipe up as the symptoms are linked, and I would push and push - a diary to back you up would be very helpful.

Thanks for asking, Pixieonaleaf. He had three days of headaches and then the last two days he's been fine and his appetite has noticeably increased.

If he didn't have a past history of what they're saying are bouts of migraine, I'd be tempted to consider if he's had a mild virus - with the loss of appetite for 2 to 3 weeks and then the headaches.

On the other hand, the headaches follow a predictable pattern, where he wakes totally fine and within 30 mins to 1.5 hrs gets a headache, after watery eyes/ puffy eyes, needs to lie down quietly in darkened room and has Ibuprofoen and then up to 3.5 hrs later is totally fine for the day.

Actually, the last 2 days of the three day bout, the headaches only lasted about one hour but it might have been the new use of Ibuprofen, as opposed to Calpol use in the past.

It's not unusual for him to have a few days fine and then re-start the headaches again, however.

He's still quite moody but not sure if that's just his age - grumpy and rude in the daytime and hypermanic in the evening. Might post on the SN forum, in case this is related to his Asps traits.

Incidentally, he's been asking for chocolate and cheese since recovering from the headaches and has had no headaches at all after these foods - which is yet another reason why i query the migraine diagnosis.

i did ask the consultant if the headaches might be hormonally related, as he's 9 now and could be beginning surges of testosterone but she said that headaches and testosterone are not associated.

Re foods, its not always chocolate and cheese. My mother used to get extremely bad migranes. It wasn't until she became fully vegetarian (before that we'd been having quite a few vege days and two or three per week with some meat) that they stopped - and she hasn't had one since.

Havent read all the posts but want to quickly post that it sounds like cluster headaches. I have had them since 11, its unusual for children to get them which is why it isnt diagnosed in them often. here Will tell you everything you need to know about them. I will keep an eye on this thread. If I can help at all with questions I will.