Neurologist and Neurosurgeon Appointments

Yesterday Violet had her Neurologist review.

We again discussed Violet's chronic daily headaches and I asked him if he thought it may in fact be her epilepsy medication Epilim causing them. Violet has been medicated for her seizures for 4 years now but she has only been on Epilim for the past 2 years. I have worked out her daily headaches have been going on for approx 18 months.

Neurologist tried to call Violet's neurosurgeon to hear what the official ICP results were but he was in surgery. I did explain to him we would be seeing him today anyway and not to worry as it would only be waiting one more day.

Even though I have multiple alarms to remind me to medicate Violet twice daily,  I forgot on Sunday morning and by then it was too late to administer it. Guess what she didn't have that morning...no headache. Then after I gave it to her in the evening she had a headache straight away when she went to bed.

He hadn't personally heard that Epilim could cause headaches but looked it up and sure enough they do in a small percentage of people (10%) seems Violet may be in that percentage. He has decided to try her on Keppra and slowly wean her off the Epilim to see if it helps.

Don't know what the chances of Keppra causing headaches will be as it one it's side effects too :(

Of course this comes with a huge risk, tweaking with seizures meds will make her susceptible to having  seizures. I really hope Keppra controls her seizures as well as Epilim has the past 2 years. Such a hard decision seizures vs daily headaches, no way do I want to see her seizures not controlled but at the same time her daily headaches are extremely debilitating and feel I have to try it for Violet's sake.

Her neurologist was up until then going to try another analgesic which in my opinion will only mask the real issues.

This morning we again met with her Neurosurgeon to discuss her recent ICP monitoring. He said there were no massive spikes in pressure from the readings. So seems all is well with her shunt which is fantastic!!

He is happy to see how the different seizure med goes and review her in 1 year all being well.

At a loose end

Just don't know what to do about Violet's daily headache situation. It's been getting worse recently. She goes to sleep with them and wakes during the night numerous times with them and then wakes with them to start her day :(

I get alot of headaches myself and just couldn't imagine having them every.single.day like Violet is. Life is just not enjoyable when life it like that!

She is seeing her Neurologist again on 12th March and then her Neurosurgeon on 13th March to get her ICP results. I assume her Neurologist will start her on some different meds to try and manage these. Hope he finds better meds than he has tried to date for them unsuccessfully.

Guess it's better than her living on pain meds and going through those weekly, can't be good for her long term.


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ICP Monitoring

On Monday, Violet was admitted for her ICP monitoring.

Arrived at 6.45am and she was taken in at 8am. Neuro met with us before surgery to advise that unless Violet had an obvious high pressure issue her shunt revision would not be done until they could schedule a date a few weeks down the track for surgery.

There was a huge issue with her going off to sleep with the mask (Dave went in instead of me) and normally we would just hold her down as Violet has still not become 'used' to a mask after all these years of having one. The Anesthetist was not impressed that she had to be held down and demanded that she have some sedation and canula inserted before going any further. Clearly she had not read in Violet's notes that she has never enjoyed this task and I can't see her ever enjoying it!

They told me that by holding Violet down for GA's was "assault!" Can you believe that! She wouldn't want to see her Botox or blood tests then!

We have tried all the nice, slow and play therapy attempts for years and nothing works.

I swapped with Dave and went in with her as I just wanted to be in control as I am used to the process and dealing with the many idiots that go a long with that.

Violet has always needed to be held down and I told them they would still need to hold her down anyway to insert a canula! Sure enough even with pre med of Midaz Violet tried to rip the needle out of her vein as it was being inserted...did not surprise me at all of course. Finally we managed to hold her down enough to get the canula in and she went off to theatre.

She came out and while in recovery the Neurosurgeon came out to see us and he noticed the nurse was fiddling with the ICP monitor and he asked her "Have you read my notes?". She said "yes". He said again "Have you read my notes?" "Well I don't think you have, as you would otherwise have read that under no circumstances is anyone to touch the ICP monitor!" He was very cross! Was not a good start at all!

Needless to say after this the monitor was reading negative pressures whether laying down or sitting up! Violet clearly does not have a negative pressure issue as her scans still indicate massive amounts of excess CSF in her left ventricle .

After 5 attempts at resetting the monitor over the 48 hours, finally the last night we had some 'better' readings. Seems pressure is not too high. Was at 11mmHg while laying down and most it went was 15mmHg and no massive peaks from that overnight, which is great news!

Violet had horrendous headaches while in hospital too which is normal for her, but she had the joys of being able to access Oxycodone for them as Panadol and Nurofen only ever take the edge off them. Think I only had about 3 hours sleep in the 48 hours we were there.

ICP came out yesterday afternoon and she was discharged. She has follow-up with her Neuro in 4 weeks to further discuss the ICP results.

She is enjoying being home resting.

Violet's Mickey Mouse being empathetic...

Violet's present from Dad for being the bravest girl...

She named her bunny Whiskers...

Pre-Admission

This morning Violet had her pre-admission for her ICP monitoring on Monday.

Operation side of it will take 1 hour and monitoring up to 48 hours.

Then from there on depends on the outcome of the results.

Risks explained and all just a bit overwhelming right now.

Anyone wanting to have updates on how it goes while we are in hospital will need to go to:

Violet's Journey Facebook Page

Cerebral Palsy Clinic

This afternoon Violet had her Cerebral Palsy Clinic review.

Weight 32.7kg's
Height 130cm

They are very happy with her recent Botox results in her arm/hand. They are however concerned about her foot and leg that were operated on last year. They agree with the surgeon that she will require more orthopaedic surgery sooner than expected and of course as she has growth spurts over the years more again. They did understand my hesitance in jumping straight into agreeing to this kind of surgery again and so soon.

Her last hip x-ray last year showed a migration percentage of 20% and she will have another x-ray this year around the time she turns 7.

They are concerned about her crouch gait on her right side and they would like her AFO adjusted to help this as much as possible for now. She is having her next casting for her new AFO very soon so that is good to know beforehand.

Her right hamstring is now an issue which makes sense when she has a crouch gait and they suggested getting Botox Clinic to put some Botox in them next round in May. Failing that working, it would be another thing they need to do with her next lot of orthopaedic surgery.

They advised me I should have a long hard think about putting Violet in a support class from Year 3 and if I was to agree, I would need to apply for that next year. Such a huge decision to make...

While there I had to get another letter from them to state that Violet still has Cerebral Palsy for the Department of Education as each time her funding is reviewed annually they need a current letter. Can you believe they need another letter to confirm she still has Cerebral Palsy?!? New flash:  Not something one grows out of unfortunately idiots!

Keep Updated

I finally decided activate a Facebook page for Violet's blog so I can keep everyone updated. Makes it very hard when in hospital to blog (especially from a phone) so figured it would be easier and quicker to make a page.

You can click on the link on the top right hand corner of this blog to follow her on Facebook too.

ICP Monitoring

We received the date for Violet's admission for her ICP monitoring. 2 weeks from today, the 13th February.

So glad to have the date so I can now organise what needs to be done beforehand.

It can not come soon enough as her headaches are increasing in intensity and waking her now numerous times throughout the night instead of only once or twice. Really want to know what is going on in that head of her's.