×

Make Sure Katie Is Not Alone This Holiday Season

Your contributions to Katie's journal this year made sure that they never felt alone. Your tax-deductible donation in Katie's honor will make sure that Caringbridge continues to bring hope and healing to those who need it most.

Donate Now

Three Parts, The bad with the good.

Part One- Seizures Are back:

We knew it was a possibility.It is with trepidation that I write you. Katie was displaying a couple of staring like episodes (that started around January - about 3-4) that we could not physically manipulate her out of, so an EEG (one hour) was performed on 13 April 2012 and we sat down with the Nuero to discuss the results on 1 May. The EEG is showing a marked increase in spikes on the right side of her brain (from the EEG a year ago), and there were a couple of jumps to her good side of the brain and possible spiking on the good side. (Katie had 3/4 of the right taken out, and a small occipetal lobe left but disconnected. ) If I understood her correctly- they are not 'seizures' as they are not 10 seconds or longer, but that they are a definitive increase in spikes that will eventually present into seizure activity if left untreated.

Dr Mettrick recommended starting Keppra immediately and Brian (hubby) balked. He wanted to run it by UCLA. We sent the info to Dr Mathern and the epileptologist team at UCLA. We really wanted an epileptologist who was familiar with hemi EEGs to look at it. They got back to us today, confirming what DR Mettrick saw and we are going to start the medication Keppra, which we did last Thursday. Saturday Katie had an actual cannot deny it any longer seizure and we had to up the dose from .75 2x's a day to a sudden 2.5ml a day. We are hoping that the medication will dicontinue the EEG seizure activity. Currently there is no talk of removing the remaining small portion in the right side of her brain, but we are going to look into VNS implant.

http://en.wikipedia.org/wiki/Vagus_nerve_stimulation

I still do not regret the surgery, not one bit. I say our quality of life is so much better than before. I am still very much a brain surgery advocate if you feel it is a possibility. If we can control with seizure meds- yeah!  So now- we wait, and see if further testing is required . the good news is that the seizures are not the debilitating Infantile Seizures she was having before surgery AND Julia (her AS sister who had the same surgery) is still seizure free!

Part Two - Autism Diagnosis

Katie went to part two of Autism testing yesterday and scored 43 out of 60 on the Autism evaluation testing. Anything over 30 shows possible autism traits. He diagnosed her with 'On the Austism spectrum:secondary to Aicardi's Syndrome' meaning another syndrome is causing the Autism. On 27 June, we go in for an 'ADOS' test which will place her on the Autism spectrum. We get the results from that test on 2 July. We really needed this diagnosis for therapies and to help better Katie's education and to help fix our expectations and behaviors. Basically, with ABA therapy (which has been wonderful) and classes, we can learn how to raise Katie better and help reduce possible overloads and meltdowns in the futre. We have had a few light ones, but nothing major. Our concerns are preventing them the best way possible and getting Katie the treatments she needs. This is good news the Autism evaulation news. 

Part Three- Katie on Mother's Day:

Ok so now to end on a good note. Katie is doing fantastic cognitively. I took her to the Children's museum a year ago and she really did not do much. This time she interacted and engaged herself in the many activities. my camera ran out of battery, but I still got some great stuff!

https://picasaweb.google.com/104271621128373560466/MotherSDayChildrenSMuseum?authkey=Gv1sRgCNukvsbh28uwAg#

So we celebrate the many accomplishements Katie has learned and celebrate that the EEG activity is NOT the debilitating infantile spasm associated with her disorder. Look at that picture- my daughter is running!