Saturday, 16 February 2013

Shunt Blockage

Little Violet has been in hospital since Friday after not being well at all since Wednesday. She has been vomiting,  extremely lethargic and not eating. She has had lots of testing and her CT scan today showed that her shunt is blocked. She is having surgery early tomorrow morning to help fix this. Her ICP is understandably raised. Will try to keep you updated how she goes.

Monday, 7 May 2012

Botox Clinic

Pain In Beauty


This morning Violet had Botox Clinic.

Today she again had her elbow/arm/hand targeted and for the first time she had injections to her hamstrings.

I have to let you all know now that Violet is hardcore! She chose to have her injections without a pre-med and get ready for it...without any kind of sedation like the normally used Nitrous Oxide by the hospital!!! Doctor could not believe it and she made less fuss than when she normally has the Nitrous!

She did have the hospital's iPad as a distraction and yes she did feel the injections as she does normally even with the Nitrous BUT there was no thrashing around, holding down etc like previous times, so a great choice by Miss V all round!


Botox clinic follow-up in June.


Image

Saturday, 28 April 2012

Ending weaning

Well Violet is into her final week of weaning off Epilim and you will be glad to hear all is going well still and the best news is that she hasn't had a headache for the past 2 weeks!!

Best outcome!

Keppra can cause additional behavioural problems and she has definitely been alot more defiant this past 2 weeks but hoping it's just a phase she is going through. Her behaviour is something that has been an issue for a while so hoping it's not the med and something that can easily be managed though accessing some help.


Friday, 13 April 2012

Dental & Orthotist Appointments

This morning Violet had her dental review and all went well besides having to hold her down for the examination. She will have an x-ray of her teeth at her next GA hopefully. Still no cavities and go back for another review in 9 months.

Then we went back to have her AFO adjusted after it caused a blister after 2 days of wearing her new one:


They agreed with me the new AFO could not be adjusted and it had been made way too big for Violet and that was the reason for her blister too.much.room.

So, she has been re-cast for another new one. Pick up on 9th May.

Here is a photo of her recent AFO that is too big, look at the amount of room it has in the foot section of the AFO! Don't need to be an expert to see that is way too big. They took photos for the Orthotist to show him as he was away today. They could get their fingers down the side with Violet's foot in there!



Thursday, 5 April 2012

Update

Today Violet finished Term 1 of Year 1. She took part in the Easter Hat Parade again but this year was extra special as this time last year she was in her wheelchair, so was nice to see her be able to walk this year.

I am currently trying to decide whether to apply for a place in a support unit in a mainstream school for Violet. Went and visited one last Thursday and it was very impressive compared to a different unit I visited 2 years ago. I am just trying to make "that" decision.

Going from a mainstream class with 4.5 hours one on one aide time to a small support class with no one on one as such, makes my decision hard also. The fact they are smaller classes would definitely help I would think. Violet has been noticing she can't do things the same as her peers and it is having a huge impact on her socially, psychologically etc.

Currently at break times at school no one plays with her and she just sits with her teacher's aide alone. Teacher's aide has tried bringing a picnic rug in to the school to invite more children to sit with Violet at least so she can eat lunch with some of her peers.

One of my issues with applying for a placement at a support unit is that the decision of what support unit your child goes to is decided by a regional panel. For Violet the only 2 support units is the one I saw last week (1st preference) and the one I couldn't stand 2 years ago (not an option). If I go ahead in applying, I am going to have to sell the fact that I will be working in that area closer to Violet's school, Em's high school etc. Makes no sense to travel in completely different directions for Violet's school, Em's and my work.

Weaning off one seizure med to another is going smoothly so far with no breakthrough seizures as yet. Headaches still there but hoping in 1 month once she is has been fully weaned from Epilim onto Keppra they will be gone.


Tuesday, 27 March 2012

Orthotist Appointment

Finally have Violet's new AFO and UCBL.

That said, she came home today from school with a massive blister on the side of her heel, seems the AFO has too much room and is rubbing. So, it's back to the Orthotist once the blister heels to have her AFO adjusted. In the meantime, she will have to wear her old one.


Tuesday, 13 March 2012

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.