Migraine

We saw the Paediatric Neuologist for Ollie yesterday. On a personal level both DH and I were impressed by him.

Basically he said that kids migraine is really common and it is the majority of his practice but in his 32 years of practice he had not seen anything quite like Ollies' case. He described Ollies' case as industrial strength migraine.

He made an appointment for an overnight EEG to see if the migraine is seizure related. Lots of Ollies stuff happens at night especially the vomiting and I have read somewhere else that this is often seizure related. The speech therapist gave me some info on seizures last month as this seemed to fit Ollies pattern of speech regression.

He told us that given the severity and complication of his migraine that there are no easy answers. We just have to keep trying preventatives until we find something that works and this will be a slow process.

He doubled Ollies preventative medication and felt the zomig was not a good idea at moment. He quoted the research on Zomig and children that I have read on this site so I was happy with that.

I asked him about an emergency treatment plan and he said he will have to do some research on that and get back to us. Again Ollies age (6) is the problem. At least the was up front about things and is willing to consult with others.

DH and I were impressed that he read all our info, went straight to the issues and seemed genuinely interested in Ollies case. A big part of our problem has been getting the DRs to understand the frequency and severity of the migraines. He got it immediately. No patronising discussions about being an over anxious mother, stress, eating well, drinking water and sleeping regular hours. I felt he understood that we are a long way down this road.

He was great with Ollie and made us all feel that we were in the right place getting the appropriate treatment.

So all in all the appointment was good because I felt we had finally found someone who gets it and is interested and willing to help find some answers for Ollie. My DH was relieved but I feel really depressed about things. There are no easy answers or solutions to this. As a mum you just want to make it right and I can't make this right.

Ollie by the way has had a good week and is his normal happy self. It all seems like water off a ducks back to him. As soon as the migraine attack is over he is up and of to play. I wish I was so resilient.

Thanks to everyone over the last few months for the education and support. I will keep you posted.

Cheers Daisy

I'm so glad the appointment went well. This doctor certainly sounds like someone you will be able to work with.

And the patient (and/or patient's parents) always does at least half of the work to bring about a good appointment. So good work. If we can help, let us know.

Daisy it is wonderful that you are found a good doctor. It is one huge worry I know that has been for you. I know that when my son is sick that I worry myself sick. My son doesn't have the migraine issues but he has had serious medical issues and it has been terrifying when we are in an acute situation.

I am glad that Ollie has had a good week.



Mary in NM

Hi daisy,

I can hear the relief in your voice. This is some of the best news I've had in a while. So good to hear you are workig with a doctor who is caring, compassionate and takes Oliie's care seriously.

Great job to you and your DH for having all your "homework" ready for the doctor. I bet that made a difference to him, knowing you are informed and ready to go to bat for your son.

Keep us posted when you can, and I'll be keeping my fingers crossed that Ollie continues to play like every other six year old.

Hi Daisy

I'm very glad that you had a successful appointment with your doctor. Finding a good doctor to work with is half the battle. I hope that Ollie is on his way to fewer migraines.

Hang in there. I know how stressful it is when your child is so sick.

Jean Ann

I feel for what you guys are going through. My daughter at age 4 had her acute episode and it was devastating and scary. She converted into a more chronic pattern, but now she is doing great. It is so hard when you are in the middle of things and don't have an immediate solution to your child's suffering. Hang in there, and remember to post here to blow off steam or get the support you need. You and your family will get through this!

Daisy how great to have a good doctor on your team! I know it's sobering to have more info sometimes but at least you have a real expert helping. I hope this helps with Ollie a lot.

- Megs

Hi all.

Ollie has had his ambulatory EEG but no results for a few weeks yet. We had a few technical difficulties which resulted in 2 nights monitoring and 3 days at the hospital so we are all pretty tired.

Ollie did not have a migraine during the monitoring. He arrived at the hospital with one and had an episode of speech issues that usually preceed a migraine but the monitor was not working during either of these times. The technician assures me that it is the sleep EEG that they are interested in and they got most of that on the second night.

He seems to be doing pretty good at the moment with only 2 or 3 episodes a week and they are much shorter in duration. He has another preventative increase today which takes him to the maximum dose for Sandomigran.

In the last few years he has always started to get better at this time as the weather warms up.

Thanks again for all the information and support. It has meant lots to me.

Will keep you posted on the results.

Cheers Daisy.

"Only" two or three episodes a week still sounds like far too many, but I'm glad Ollie is doing better. Keep us posted.

We'll keep our fingers crossed for you guys!

Daisy,

I'll be keeping you and Ollie in my thoughts and sending postive vibes your way. I can't wait to hear about his test results.

Hi all. Heres a quick update as we saw the Neuro today.

Ollie is booked into hospital to have an MRI and a lumber puncture Tuesday of next week. They are going to do the MRI under a general but he needs to be awake for the spinal tap. He will most likely have to stay one or two nights depending on the time they can get him in.

The Neuro is going to make the other hospital neuros aware of Ollie's situation so that we can call the hospital at any time night or day and speak to a Neuro who knows what is going on. He is going to introduce us to the whole team next week when we are in and leave an IV treatment plan on record tonight. One of the hospital neuros rang me regarding the ollies admission next week so I assume he already has notified them. This means we can call the hospital 24 hours a day and if needed come in for treatment and bypass emergency. Yeah!!

No EEG results as yet so he is still following that up.

It was a good appointment. All action.

The Neuro thanked us for typing up the diary for him and doing a summary. He said this puts everything into a painfully clear persective. This has been lots of work but so helpful.

We find some answers.

Thanks everyone for your kind messages of support. I will post again as soon as we get the results. This site is a lifeline.

Cheers Daisy

I'm so happy to hear this. I'm really rooting for Ollie and for his wonderful Mom who has been so persistent and caring. Hooray for the doctor and the action. Good luck.

Daisy,

What a great appointment! I'm sending loads of positive vibes that you guys find some much needed answers.

Hugs to you and Ollie for a job well done

What a tremendous relief, Daisy. Take care of yourself and Ollie.