Migraine

Been to the Neuro and the Ophthamologist this week. Ollies headaches have reduced by 60 percent in frequency and down from a 8 or 9 pain wise to a mild 2 or 3. Overall he is much happier and more energetic. Nausea still remains his most frequent symptom and his speech continues to fluctuate when he vomits.

He has not tolerated the Metopropol well and now has been prescribed Epilim (sodium valproate). Without doing another lumbar puncture it is hard to say if his mild symptoms are a result of IIH or just migraine. As he seems to be having more good days than bad at the moment and alot less pain we are going to just wait and see how things go.

His left eye still has a very slight papilledema although it has been really hard to assess if he is having any vision loss due to his age...6. He is having monthly vision checks at the moment and if he shows any visual disturbances again he will be straight into hospital again for another LP.

Has anyone heard from Julie Kay? I wondered if she got her test results. I keep checking the site but wondered if I missed her post.

Hope you are all well.

Cheers Daisy

I'm glad to hear Ollie is doing so well! That's quite a reduction in migraine frequency and pain.

We started Nikoli on Inderal in December.....well, I was just looking at his chart and I was going to say there is improvement, but he had four migraines in October, four in November, four in December and four in January and January is is not over. I guess it was Christmas break when he was migraine free that made me think he was improving.

We had to see the ped soon for an ADHD checkup - I will bring along his charts.

I'm so glad to hear Ollie is doing so much better, save the speed bump of the Metopropol. Hopefully the new med will work splendidly. Hearing that Ollie is happier and has more energy makes my whole day, Daisy Big celebratory smooshes for the little guy!

I don't think I recall seeing anything from Julie Kay, either. But I read so many posts that a lot of them run together half the time once I've answer something and move on to the next one. I just went on a search expedition, pulled up a thread of hers, clicked on her profile and chose the "see recent posts by" feature, and it looks like the last time she posted was October 29th, for what it's worth.

Julie Kay, if you're out there, how about an update?

I have often wondered how Nikoli is going. I read some obscure reseach somewhere which said that kids with IIH are often diagnosed with ADHD first. Of course now I can't find it to link it for you but I have often thought there is some connection.

One of the biggest changes in Ollie has been to his disposition. He is much more even tempered.

We have just had our first week in over six months without a migraine. This is despite Ollie being very active so the actual improvement is huge. He has always got better in the hot weather so I suppose it is still a matter of wait and see.

Thanks so much Droolie for looking up Julie Kay for me. I thought that was about the last post of hers I saw.

Cheers Daisy

A WEEK WITHOUT a monster!! That's awesome Daisy. It is wonderful to know that Ollie is improving.



Mary in NM

No problem looing up JulieKay. It was nothing, and I'm glad to help.

Scaly for you and Ollie!

Hi daisy,

Thanks so much for updating us on Ollie. I think of you two often and was wondering about you last week.

We look forward to the next one...........

Daisy,

I'm so excited for Ollie! 60% is quite an improvement! I'm doing a Happy Dance with an extra wiggle for you both!

Hi another update on Ollie

Ollie has had a dramatic return of his extreme pain after having a strep A infection and has 2 lumbar puntures within a week. Both showed his pressure was extremely high.

We have an appointment with the neuro surgeon tomorrow for intial discussions about a shunt. He is on Diamox.

Lots of good things have come out of this.

They think now that Ollie has had chronic IIH rather than migraine and are treating him for this.

After all my years of jumping up and down about pain relief Ollie finally has a pain managent pain with proper pain medication rather than OTC.

We are to head straight to hospital if I need to give him the stronger meds and we have been seen immediately on the last 2 visits. After all those times of waiting for hours just to be sent home with nothing it is a real turn around.

I have finally found a GP who has been great at advocating for Ollie and this has been invaluble. She has been on the phone to everyone for us and it has made such a difference.

Once Ollie has had a new diagnosis all the hospital services swing into action and he has asssistance with education for the next year as well as being seen by the hospital speech therapist. They are finally thinking that the constant high pressure has been having a significant impact on his mental functioning.

The scary bit in all this is the fact that so much of it was dismissed with "its just a migraine". It seems that you get treated really poorly as a migraine patient.

Thanks again for all the help and advice here. I cant thank you all enough. We have used everything we have learned here to get the best possible outcomes for our son.

Cheers Daisy

Daisy,

It sounds like things are falling into place for Ollie and that is such wonderful news!

His GP sounds like an absolute gem and a keeper for sure! I'm so happy for you both!

You've probably already seen this but just in case:

Pseudotumor Cerebri (IIH) – The Basics

Hugs,

Daisy, I'm so glad you're seeing progress in treatment for Ollie.

Just keep updating us, we care about Ollie.

I'm so glad to hear you are making progress in getting a good medical team, and seeing results for Ollie.

I am so incredibly happy for you, and especially for Ollie, that I am beyond words. Hearing how well things are going now that you seem to have a correct, specific diagnosis that's leading to helpful treatment has made my entire day.

Twenty-one smoosh salute to you guys for all the hard work and to celebrate the payoff...







Even if Ollie doesn't have migraine, you know we want you to stick around, right?