Migraine

Hello all
My name is Sarah m and i've posted on some of the other sites ,but as I am mum to a severe migraineur, it has been great to find a site for families too.
My little boy is nine and the middle boy of five and he has been suffering for at least seven years.
He was diagnosed around two and half years ago with SHM and we are still trying to stabilise him and hopefully will get there soon.

I did,nt realise how much of an effect it has on the rest of us and I'm encouraging my hubby to read the posts on this site as it feels as I've said before that we are not alone anymore.
It appears that there are many different approaches to caring for migraine in our countries, and I'll be honest it has been fascinating to see what people use and deal with each day with their migraines.
It is nice though to be able to discuss migraines from a different perspective as sometimes I do not always know how best to help Tommy and even though we have a good team here (finally) in the UK daily living is like walking around in the dark!!
I think the greatest thing with Tommo is that he tries to keep his humour going even though it is a struggle.
Anyway hello again and I,m going to keep popping in now that I've found you.

Regards Sarah m

Hi Sarah. Welcome to the board, I am new here also.

I also have a little boy so I know how much you just want him to be better. Can I ask how you knew he had migraines at 2? My little guy is 2 and I'm wondering if some of the things he does/says could be migraine but it's so hard to tell at 2.

And you're right, anytime someone has migraines, it really does effect the whole family. I feel so bad for the effect mine have on my family. You are great parents for being here and trying to help him. My mom was the best thing I had growing up with mine.

Amy

Welcome Sarah m, to o you, your husband and Tommy!

Sorry you have a reason for being here but we are glad you have found us too!

I'm so glad to hear you feel like you have a good team. Did you mean a good headache specialist? That always makes a big difference!

Let us know if we can be of any help and if you have any questions.

Sending s to you and yours.

Kelly

Welcome Sarah and family!
So glad you found us! Its rough when you lil guy is sick. Im ss. I too have HM, so I really feel for your Tommy, Must be very scary for him! I hope yall have the best of care over there!

Welcome again and for your whole family!

Hi Sarah. welcome to the forum

Welcome to the forum. I'm so sorry that little Tommy has migraines. It's really horrible for a mom when a child is sick. I'm very lucky that my son doesn't appear to have inherited my headaches.

Looking forward to seeing you around!

Gretchen in Mississippi

Hi Sarah and family,
Welcome to the forum
Dar

I know I've said hi to Sarah, but hello to you, too, Amy.

Hello All
Thankyou for responding to my post.
It seems that no matter where you are in the world there are people out there trying to help you through. I hope that did'nt sound as mopey but times are hard at the moment.

Over here in the Uk especially in my area which is near London, we have had to find the right pathway to getting the right help, rather like your good selves it is a system you have to go through.

Without sounding patronizing we have to start with our Gp's they have knowledge of many complaints and if it is felt necessary they then refer you to your local hospital and you are seen in clinic, it is then up to these consultants which way you go and in Tom's case he was given an array of drugs hoping to find the right one. At this time he had been suffering for some time and Amy ,you asked how could I tell at such a young age?

At the beginning it was mainly non verbal - finding it difficult to cope with bright lights, noise and constantly rubbing his head crying. I often used to say sore and point to belly or head and Tom would often touch his head. On top of all this he also found balancing difficult and at times was unable to walk. I had a health visitor call and often she would observe these symptoms and eventually we went to the GP.

Tommy was also admitted to the hospital on different occassions with suspected meningitis as a lot of his symptoms could be confused for this.

As his speech became developed then he was able to say head sore, although I did have a "discussion" with a consultant who was adamant that he was not able at that age to know the difference!

We had a cat scan which was normal at three and a half and tried sanomigraine to its top dose and propananlol again to no avail.

Eventually we had tried all of our local hospital's drug regieme and after one particular hot, aggressive pain riddled summer, we were referred to the specialist hospital in London for children called Great Ormond Street.

Again lumbar puncture and an MRI scan came back negative and he was started on Gabapentin to a high dose ,topiramate on it's own and still he was having quite disabling migraines.

Tommy is a really sweet kid and we had noticed that he was becoming very agressive with all of us and that he had many triggers which included,the weather, certain smells, light and most of all noise( we have since found out that he has hyperacusis which means he can find certain noises very painful) he would have sensations down his right side and at times would not be able to feel his leg or arm, and that there was a pin pain in forehead that was seperate to the migraine, his most distressing symptoms would also include blindness in his eye and incontinence.

At one stage our new consultant decided to refer us again to the headache clinic that was held once a month ,headed by Professor Peter Goadsby and his colleague Dr Benton.

On one of our last appointments before this clinic It was suggested that I was a gullible mother and Tommy was a manipulative boy who did not want to go to school! I never went back!

But we did go to see the Prof and within the hour he not only put my mind at rest but had a starting point to Tom's problems and they had a name sparodic hemiplegic migraine with chronic background headaches. Life got a bit better at that moment!

Phew sorry I'm rambling on here , but I suppose I thought it might answer things better if you knew some of his story

Tommo has now been on flunarizine for nearly three years and we have had to add topiramate back on again, but just befor Christmas thia was stopped and imipramine added to help with the backgrounds and as we seemed to be going through a rough patch at present the attacks and agression are frequent which makes living here at the mo a little bit fraught, especially for the other kiddies.

Does anybody else describe their journey as if they too had the condition? I tend to say we a lot when saying things about taking meds etc as if I take them too!!!

Well I'd better get off now before I take up all the space , sorry to be so long winded with my thanks

Take care to you all
Hugs and love
Sarah and Tommy

Sarah and Tommy, please add my late welcome to our forum family!

Sarah,
Has he been checked for chiari malformation/tethered cord? I only ask because of the symptoms that you list and I am currently going through this myself. There are so few doctors that know much about it and the people that have it suffer for so long before being diagnosed. Not that he has chiari but his symptoms made me wonder if it had been looked into?

Here are a couple of good websites with some information if you are interested?

The Chiari Institute

Chiari Connection International

Amy

Hi Sarah, and welcome to the forum! Glad that you (and Tommy!) found us.

Welcome Sarah,

You are under good care with Dr. Goadsby. We are here for you and your son. Let us know how we can help.

Sarah and Tommy,

Hello and welcome! When you say you did see the "professor," do you mean Professor Goadsby? I've met him several times and quite like him.

One of our granddaughters had her first Migraine at 2-1/2, so I can sympathize with how difficult it is at that age. At least my Migraines didn't start until I was six.

Sarah, I truly feel that the whole family has Migraine disease, especially when the Migraineur is a child. We certainly see how it impacts every member of the family.

welcome again,