Migraine

Ollie has just had his appointment with the pediatric pain clinic and we were very impressed.

We were told this is were you end up when the Drs run out of treatment options and the aim is not only provide pain relief but to look at the case from a fresh perspective.

It was a 5 hour appointment where we as a family saw the pain managment Drs, a child psycharist, psychologist, physiotherapist, and occupational therapist. At the end of the day they all meet and feed back the results to us.

Ollie now has a strong anti nausea medication ( a restricted drug here so difficult to obtain). He has been referred to a gastroenterologist for assessment of his persistent nausea as he has not gained any weight in the last 8 months.

They are also going to contact the osteopath for her input given she has provided the most effective treatment for Ollie. She thinks his issues are related to his neck and circulation so there was some discussion about exploring this further.

The pain plan which we have followed for the last 5 weeks is to hit the pain hard and fast with double doses of all the medication in a building pattern. So far it has been working and there has been no need to head to the ER. He is writen up for IV pain relief on arrival at the ER and if we have problems with the Dr on duty we can call the pain managment team 24/7 to intervene on our behalf.

They kept telling us that we are the experts on our son and know what is best for him and if we think he needs stronger pain relief then he will get it.

The great irony is Ollie has been fantastic lately and has entered a good period. No one is sure why but we are really happy. His eyes are totally normal again. His cognitive abilities have improved dramatically and he is rapidly catching up the almost 6 months he has missed off school. Speech still remains an issue and has not returned to where it was 8 months ago.

He still has mild headaches and nausea but he has not had all the neurological stuff going on with it so the thought is that his headache is now tension type headache rather than migraine.

that things remain good.

Cheers Daisy

That's good to hear, Daisy. I hope Ollie continues to do well.

Hi Daisy,

I'm so glad to hear that you all are doing ok. Could he be doing better because his CSF is lower?

Whatever the reason for the turnaround and Ollie doing much better, HOORAY for OLLIE!!!

And many grateful thanks going up for these doctors, who seem so genuine, helpful, and just plain spiffy!

Hi thanks for the replies....we are just so excited. He has had pain free times before but has not made the huge progess he is making now. It is like he has stepped out of the fog and can see clearly now. Everyone keeps telling us he is a totally different child.

Nancy I think without a doubt it is because his CSF pressure is stable at the moment. The Drs are very divided about this and it will interesting to see where we go from here.

No one on the pain management team thought his case was "just migraine". In fact there was some real questioning of the management of my sons case.

There was also lots of praise for our level of education and advocacy. So I just wanted to say thanks again to all the wonderful people here who have educated us and supported us along the way. It has made a huge difference to us.

Cheers Daisy