Migraine

Well it looks like despite everything that has happened that we are now back to the diagnosis of chronic migraine with an occasional episode of PTC or idiopathic intracranial hypertension thrown in.

Ollie has just had a week of ICP monitoring in hospital. The aim was to assess whether a shunt would be fitted as he has had 3 lumbar punctures with very high pressure readings. The neurosurgeon thought Ollies high readings were a false positive and his pattern of pain and neurological disturbance was more like chronic migraine than IIH.

We had lots of difficulties with the ICP monitoring including a post operative CFS leak and numerous equipment malfunctions which lead to 6 days of monitoring. Ollies pressure was up and down but stabilised over the 6 days so no shunt which is good but no answers which is bad. Like the neurosurgeons said it was not a good time to get better.

The Opthalmologist has told me that Ollie definelty has a problem with fluctuating ICP pressure because of his papilledema which although slight has come and gone and has now returned again. He told me that this can't happen without a significant episode of raised pressure.

He is now off the Diamox which was making him very sick and back on a beta blocker propranolol.

Our pain managment plan I was so excited to finally get did nothing to manage the pain so so we now have another one to try and hopefully will get an appointment with the pain management clinic in a few weeks.

The good thing is that Ollie has been enrolled in a program for chronically ill children which means that if I need to take him to emergency or have any questions 24/7 I have a number to ring that will triage him over the phone (they have his records plus current recommendations for treatment written up) and have everything ready for us on arrival in emergency. This includes IV pain relief and treatment on arrival.

I did lots of crying while Ollie was in hospital as it was hard to have him sent home with no answers and no effective treatment. He has spent 3 weeks in hospital over the last month and lost heaps of weight.

It's taken me a while to post as I have been just too depressed by the whole process. The Drs tell us they have no answers and we just have to keep trying different medications but I am so over the whole thing.

Thanks for all the lovely messages on my previous post. I have read them and they do make me feel better.

Hello!

I'm so sorry to hear that Ollie has been having a hard time, but it sounds like this new program should may be good!

I'm sure it is very stressful and sad to go through this with your son. Make sure you take care of yourself too! We are always here for you, even if you just want to chat about you!

I don't know if you are aware of the special support folder we have, but if you ever need it, you can email Teri for access. I just wanted to put that out there, incase you wanted to use it.

I'm glad you checked in!

Please keep us posted - not only on Ollie, but on how you are doing as well, ok? Don't be a stranger!!

hi daisy and ollie,

I'm sure you must all be very frustrated with all of these medical tests/hospitalizations! And then to not have any answers? Ugh!

Poor Ollie! He sure has been through an awful lot! Especially for a little guy! It just doesn't seem fair!

Is Ollies pain a lot different when he has trouble with the IIH? I guess what I'm asking is: Can you, as a mom, tell when he needs an LP? Is his pain more intense or more long-lasting than his "usual" migraine pain? Or is it really hard to tell?

I think I'd want a clear, written plan from his doctors so you know just what to ask for/do. I think it'd be a lot easier for you if you had a little bit of consistency and a plan to fall back on when Ollie is feeling so awful.

It's hard to be a mother when your child is in such severe pain! It's especially hard when he's in pain and you don't know what to do to help him!

I'll keep you in my prayers! I sure hope your new pain management plan works. And a meeting with the pain clinic would certainly be helpful!

Please keep checking back with us! It's hard for us grown-ups to handle severe head pain. When kids have to suffer with it, it just seems terribly unfair.



jenny

I wish we were all there with you, able to hug you in real-time and sit with you through all this. I know you know we're with you all the way in heart and spirit. How frustrating for you all! I continue to root for Ollie and you every single day.

Thankyou all for the replies. A bit of sympathy and understanding goes a long way. There are very few people who get that migraine can be such a huge disability.

One of the hardest things about the migraine stuff is the "its just a migraine" attitude. Ollies migraines can last for days and he has aura symptoms that can last for months. It just never seems to end.

Jenny you asked if I could tell the difference between IIH and migraine and truthfully I am really confused at the moment. We have been told they will do the ICP monitoring again if he has another month of constant migraine like he had last year.

I think the hardest thing for me is giving up work to look after him. I have had to trade my job that I love for sitting in the dark day after day watching my child pain. I want to be able to fix it but there is very little I can do to help.

We finally have the appointment at the Pediactric pain clinic in a months time. I am hoping this brings some relief for him and me.

I really struggle with the fact there are no answers as to what causes such a chronic pattern of migaine......just more drugs to try.

At the moment Ollie is fairly good. His main problem is ongoing photophobia. The Opthalmologist did point out to me that despite his most recent bad patch compared to last year he is so much better. I think that is what I have to focus on.

Cheers Daisy

Daisy,

Rx:

Now, a question: Has Ollie's ophthalmologist said anything about glasses with polarizing lenses for him? These might help manage the photophobia. I know such lenses really help me manage glare and flicker from fluorescent lights, and glare from other light sources, both indoors and outdoors.

Next: a command from my assistant principal: raise your hand. Now, pat yourself on the back to reward yourself for the great job you are doing.

With love and some of this great spring day,
Rebecca, The Island Mama