Returning to school after absence because of chronic migraine

Hello,

my son suffers from Acute Confusional Migraine and he has been unable to go to school because of his migraines for seven months now(he's 12). His medication (Epilim) is mostly effective but he is still getting 'attacks'. In spite of these he has been determined to go back to school and started S2 last week after a long absence. Unfortunately he has had migraine after migraine, some of them in school (they can be frightening things to witness as with ACM it looks like a bit like a seizure) - which has been very embarassing for my son. But he is adamant that he wants to go to school and is trying so hard every day just to get in the building, fighting migraines all the time. The other day was particularly bad - he woke up with a migraine and went on to have ten full-blown episodes of Acute Confusional Migraine and was fighting back another 30 that day. Needless to say he couldn't go to school for a couple of days. I had to pick him up from school early today as he had two attacks there.

He has Asperger's Syndrome too so struggles with the sensory stress of a busy mainstream school. Physical or mental stress are the biggest triggers for my son's migraines as are certain noises - his migraines can be triggered by the sound of his own breathing or his classmates breathing. (I'm fumbling about in the dark with all of this at the moment as I can't seem to get hold of my son's consultant neurologist, I've been leaving messages for three weeks now...I'm getting very tired...it's a difficult thing to hold as you can imagine).

I'm just wondering if anyone has had their child off school long term on account of migraine? What were your strategies for getting them back to school, how did you support them? Does your child suffer from migraines, how does the school cope, what supports are in place for your child? Does anyone else find their migraines are triggered in everyday environments and situations, how do you manage?

I'd be grateful for your insights,

kind regards

Maureen

Oh hunny BIG BIG BIG Hugs. You must be so stressed out about this. But you have got to admire his determination not to let this stop him - one hell of a brave boy you have there

My son does have migraine, but no where near the level you or your son has to cope with. The school know and did take steps to help us. He does not sit near a window to avoid sunlight or under the strip lights. They have a list of food he is not allowed. He can have water on his desk. He can wear sunglasses in the class room etc. These are very small things and I am not sure they will help with your son, I say this because I get migraines from sensory overload. You get to the point where you just want to scream. Re the noise one :- if you imagine you are at a party and one person is talking to you. You would be able to filter out all the background noise and hear what that one person is saying, with a migraine brain, you can not do this and all the noise is at one level. Same goes with too many people all moving at the same time - nightmare.

Is he in a main stream busy school? I was just wondering if he would find it easier if he was in a smaller school, with less children per class? Also has he gone back full time, I just wonder if part days would be better, so he gets a break. You could also ask the school if they have a quite room or even a corner he could use, just to give his senses a break during the day.

I am not sure if I have been any help there....

I do feel for you both.

Tee





I was wondering

Might be worth asking for help from the school nurse service given he has ACM and suffers so many attacks at school.

They can push for your sons neurologist to see him again as can your GP. Let the GP know your son is struggling and you are having no joy in getting an urgent appointment.

Thanks Kate,

I'll try the GP on Monday.

re the school nurse, we already have involvement from the school's nurse and the school doctor, he is also concerned about the frequency of the ACM and new symptoms (numbness down one side, pins and needles from waist down) and is contacting the neurologist. School are trying to coordinate a professionals meeting where all involved in my son's care (currently 6 areas represented) will meet and come up with a better plan with the onus being on medical attending...no mean feat to arrange! We already have six -weekly professionals meetings but consultants never come, I understand they are busy but we need their input. School are finding they need more medical input for my son too. We have a detailed medical protocol for my son should he have an attack so staff know how to help him which is good but need more information on seeing the attacks off in the first place.

thanks Kate,

best wishes

Maureen

Hi Tee,

thanks for your reply. School are already making several adjustments for our son-he only goes in for mornings and has a reduced timetable with some lessons as one-to-one. He was only in school for half an hour every two days then bulding up to half an hour every day but my son was adamant that he was going back for as long as possible, so he goes in until lunchtime. He is aiming for a full day. I can't see it happening for at least a year but I'm prepared to support him until it can happen....I'm sure there will be lots of migraines along the way. And lots of schoolwork to do at home. He also has an auxilliary with him and a medical protocol should he have an attack (been tried out several times this past wee while!).
We've arranged for the auxilliary (a lovely lady, we are very lucky) to take notes in the lesson so my son can copy them up in case he has missed anything. he can look like he is present just now but in reality is fighting migraines so not taking any information in.

In the melee of getting him back I'd forgotten about the striplights. I'll look into him wearing sunglasses - I'm sure it won't go down well! A friend suggested lastnight that his migraines may be related to blood-sugar dips (in particular as he seems to get them first thing in the morning, she thinks it may be Dawn Phenomena ) so we are going to try and have him eat something low GI every hour at school to see if that helps and try and have his bloods done too. I think I need to make sure he is drinking enough at school, thanks for mentioning that, I'll get them to make sure he has a drink at the end of every lesson. I need to reiterate the bit about sitting in sunlight - I'd forgotten that too! Heat is a HUGE trigger for my son.

Thank you Tee,

best wishes

Maureen

Sorry that should be 'Dawn Phenomenon' not phenomena

You are doing an amazing job - getting it all balanced is the trick and that is hard to do. One day at a time hun x

Sorry I forgot to mention snacks, Alex eats fruit at break time and is allowed to eat as much as he wants. We also make sure he has slow release energy for breakfast ie porridge and banana. But I have no knowledge of Dawn phenomenon, so I am not sure if that is a good or bad idea.

Certainly checking where Alex sat in the class room helped. I went in and was allowed to agree a place, and the move away from the window (which had stripped blinds grr) was a big help. Also closer to the board so he did not have eye strain. And he is not directly under the lights. The school where find about the sun glasses once I had explained it was to block out the colour flickers from the lights, which you cannot see with the naked eye.

I am pleased the school are taking this serious and are working with you. He sounds on hell of a strong little boy and that is half the battle of managing this, it is so easy to just give in. So tell him I think he is an amazing boy with a very strong heart.

As a side point, my son who is 9 has said he is happy to talk to him via email and skype, but I said you would have to agree to that, as it might be too much for your son to handle right now - but the offer is there.

Big hugs - hope you have a quite weekend

Tee

Hi Tee,

thanks so much for your support. I think the food aspect is really important and I had not given that enough thought as I've been focussing on the external triggers. But I'll try it this week and see if it helps.

My son would be really happy to chat to your son via email, he is very happy about speaking to someone in particular who suffers from migraines and can understand what it's like. I'll send our details on via a PM. Thanks!

Best wishes

Maureen

You can't think of everything Maureen..you have all the plates spinning ing the air already!

Tracey's made some great points here and I would like to reiterate what a wonderful Mum you are and what a fantastic young man you have there.

I was reading out your post in the car to my OH on the way home today and we were really touched at how hard you are battling to over come these complex issues.

Our children battle to stay in school full time due to their disability and we totally understand how tiring it is just keeping all the professionals involved and up to speed with their care packages. Then you are there trying to keep one step a head of the problems, stay calm, look for triggers, and act appropriately. I think you are doing an outstanding job Maureen.

You must be exhausted, as must be your son. Big (((HUGS))) to you both.

I tell you what, with a team like you two, if anyone can crack this one you will.

Kindest wishes and regards
Jane and family
x

Thanks so much Jane, it means a lot to have your support. I've had a good night's sleep so the world is not quite so bleak as it was yesterday...! My son managed a few hours at school, 2hrs seem to be his limit right now but slowly he's managing to do more, but it changes from day to day. Just got to be grateful when it's going well and hope the good spells eventually join up,

Thanks so much Jane,

best wishes,

Maureen

Glad you are feeling a little better today, it's hard to keep going when you are running on empty..try and rest if you can. I appreciate that must be nigh on impossible right now..but even if it's just half an hour's quiet time to let your brain rest..

I am laughing now cause I need to take my own advice on that score..so feel free to roll your eyes to heaven at me there!

We are always here if you need to talk .

Jane
xxx

Thanks Jane,

doing just that while my son is at school just now!

bye for now,

Maureen