Immi’s journey

I’m sitting in bed writing this, with one of the bravest people I know idly stretched out beside me. Brave because she daily faces hurdles and difficulties most of us will never meet and for those of us that do, they are likely to be short lived, like a broken arm. But brave too, because she - with us- has had to make the biggest decision of her life and she chose bravely.

As many of you will know, we have not been able to find any med or combination of meds that would halt her seizures, and the Ketogenic diet did not help either. The type of seizures she has are very unlikely to be helped by Cannabis based meds (yes, we have researched and yes, we have talked to the doctors about them), and so the neuro team felt we should start pursuing the surgical route. 

So over the last couple of years Immi has had many scans and tests; sleep deprived EEG, 5 day EEG, Surgical EEG, PET scan, MEG scan and a number of MRIs, all under GA. 

The plan was that the Surgical EEG might pinpoint an area of the brain that  could be removed or disconnected, however, sadly her seizures were too generalised and wide ranging. 

The team reached a point where they were going to diagnose a disease called Rassmussen’s Encephalitis, see https://www.encephalitis.info/rasmussens-encephalitis

However, RE is only diagnosed where there is unilateral (one sided) Epilepsy along with other symptoms - all of which Immi has. The surgical EEG showeved activity on both sides, although all other scans up to this point had been left sided only. So, after some discussion of the wider team it was felt that a biopsy should be done to try to confirm RE. This involves taking out quite a large chunk of brain matter from her temporal lobe (from the area that shows damage using the PET scan imaging).

It has been a really difficult decision for a number of reasons;

Firstly, RE is an uncurable degenerative disease, the only way to stop its progress is a Hemispherectomy which runs its own risks including damaging speech and vision. 

Secondly, biopsies for RE can be inconclusive. If the result is negative, it doesn’t mean the patient doesn’t have RE, they may have just tested the wrong part. 

However, Immi hates the seizures, she calls them her ‘nightmares’ and when I asked her why she wanted to say yes to the surgery she said it was her only hope. 

To be honest she is scared, we are scared. As her parents we desperately hope we are doing the right thing, it’s an awful choice to have to make. I so don’t want her to have to go through this. But the information we have at the moment along with Immi’s feelings about her life at present  have brought us to this decision. 

So on the 20th November we will head up to Birmingham Children’s hospital for her surgery on the 21st. 

We don’t know how long we will stay, that will mainly depend on her recovery, how much swelling she has etc, but we value your prayers and thoughts as we journey this path. When we were in for the surgical eeg many of you read the daily blog and your messages often kept me going, so I will try to do the same this time too.

There is a Bible verse that keeps flying round my head - one many of you may heard of as it is from a famous Psalm, Psalm 23. The Psalm likens God to a shepherd that is lovingly looking after his sheep and the verse says “Even though I walk through the darkest valley I will fear no evil, for you are with me; your rod and staff they comfort me.” I’m going to hold onto this one for a while!