Please pray – seizures have returned

It’s been a while since we last sent out an update.

Since then Eloise has settled into nursery really well, with the excellent care of all the Rydes Hill school family, her teachers and from her 1:1 support.

Eloise has started to develop some genuine friendships and is especially enjoying ballet on a Wednesday morning. Her energy is returning, she is slowly developing her language and her eating has drastically improved. It’s been wonderful to see Eloise’s love for people, her humour, and her zest for life return – it can be quite infectious. She’s a funny girl and likes to be the life and soul of the group.

Like many nursery children – Eloise has picked up a seasonal cold. She picked this up in her second session at nursery. However, unlike other children, Eloise hasn’t really shaken it off fully and transitions between varying degrees of cough, snot and chesty splutters.

At the same time we have started to very slowly wean Eloise off one of her chemo drugs, Sodium Valporate (it’s used for various things but Eloise has it at a super high dose for chemo purposes). The plan was to do this slowly over a number of months until she is completely off it in early January.

We think Eloise’s development has been hampered by this drug (which makes you very drowzy and gives you “brain fog”) and we were really looking forward to her reducing and stopping this drug. In general Eloise has been doing really well since the start of term and the reduction so far in sodium Valporate.

Last Friday Eloise had an odd moment when she lay down on her side and jolted very briefly. Then on Sunday Eloise was extremely wiped and spiked a temperature of over 38 – which meant a day and overnight stay in the Royal Surrey Hospital to have a range of tests to determine the source of infection. After a number of tests (mostly to exclude some serious infections) it was assumed that Eloise had a cold and was discharged with some antibiotics.

Eloise rebounded quite strongly and went back to nursery on Wednesday. However on Friday, nursery phoned us to let us know that Eloise had just had another likely seizure (Eloise’s 1:1 is an ex-Paedatric nurse) – which was shortly followed by another seizure a few minutes later. (Eloise is currently on an exceptionally high level of anti-epileptic drugs already…)

After an afternoon of phone calls, it was agreed Eloise next MRI would be brought forward and we agreed to be vigilant and go into hospital for a CT scan in the event of another episode (to check it isn’t hydrocephalus).

This morning, Eloise had another short seizure. We are currently in hospital waiting for a CT scan. Please pray that we can get to the bottom of what is causing these new seizures, that it is something we can treat and isn’t serious. Please also pray that Eloise doesn’t get too distressed by these episodes and they don’t knock her recent improvements.

How do we feel:

  • It has been utterly wonderful to see how well Eloise has been doing this past 6 weeks. She has been doing so much better and we are so proud of her.
  • The seizures have been quite traumatic. Not knowing the cause (yet) is a hard space to be in. And not knowing if they will continue or not is also difficult. It also brought back lots of memories too. It’s also reminded us that this continues to be a battle and that even 2 years on, life isn’t simple – it’s unpredictable, and that there might still be bumps in the road. We hope this is just a little bump, and that somehow this isn’t a longer term issue.

For those that pray:

  • Pray for us to get to the bottom of this – that it’s nothing serious (certainly not any tumour!). Pray it’s short lived and can be dealt with.
  • Pray for peace for us. It’s been very disappointing and distressing.
  • Pray for Anna – she witnessed the episode this morning and said in her own words that Eloise was having a ‘moment’ (she remembers her previous seizures which we called ‘moments’). Pray it doesn’t trigger stuff for her and make her worried/anxious.
Anna, Eloise and Kobe enjoying story time before bed on Thursday

22 thoughts on “Please pray – seizures have returned

  1. Eloise has been in my prayers just recently as I hadn’t heard about how she was managing, so thank you for posting and as always we continue to pray. Healing and wholeness, trust in the Lord.

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  2. Sorry to hear this.
    When I read your last post, I couldn’t stop tears flowing, with happiness for Eloise and all of you.
    And again, at a men’s gathering, where Nick Bishop (a relative of yours) read Eloise’s testimony.
    Praying for good news from the scan, no tumour and no E.O.D.
    Also for no more seizures.
    πŸ™πŸ™πŸ™

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  3. Praying that you can get to the bottom of why they are happening and she is a amazing little girl sending hugs and prayers to you all xx

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  4. Thank you for the update! What a huge blessing to hear of Eloise’s friendships and eating! Praying for answers to the cause of these new moments and for strength and peace while you wait…the extremely difficult part. Asking for Anna to know that sister has these moments and will not be disturbed by them. Your positive spirit and attitude are such a testimony of the presence of God in your lives even through these heart-breaking times! β€οΈπŸ™πŸ»β€οΈπŸ™πŸ»

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  5. Praying now for you all…for God’s peace….for a swift diagnosis….and for an effective solution. Sending love and hugs xxxx

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  6. Thank you for reminding us that Eloise’s rollercoaster continues, with all the resultant impacts that this has on you and the family. I’m praying now for swift healing for Eloise, and peace beyond understanding for the two of you and Anna. Xx

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  7. Feeling your pain and aware so much of the reminder that the battle continues to see Eloise completely healed and able to lead the life of a really well little girl.

    We continue to pray for you all

    Xxxx

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  8. We are praying all will be well for Eloise, Anna, Mum and Dad.
    Lovely picture you attached. Thank you.

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  9. Dear Melissa and Pete

    I was very concerned for you all when your email arrived and I am holding you all in prayer

    My nursing skills are well out of date now….but…..I seem to remember that sodium valproate was used for epilepsy. I realise that I know nothing…… but just wondered if
    this was being withdrawn slightly too quickly and therefore causing the recent ” moments” for Eloise?

    Ignore all of this if this is completely wrong but I just wanted to offer my thoughts in case………

    Sending you all prayers, hugs and love

    Sandy xx

    Sent from my Galaxy

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  10. I praise God for His faithfulness towards Eloise Zoe in healing her and helping her to join in the pre school. And great to see both sisters together enjoying the story. our prayers are with your family stay blessed.

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