A heartwrenching glimpse into the horrors of AHC

A day in the life of Abigale...
As I have said before and if you are walking the same journey will know all too well, no 2 days are the same with AHC. But I thought I would give you all a peek into Abigail’s recent days.

Today is day 9 of AHC episodes
7am – All woken up with Abigail screaming for a drink and shoving her fingers in our ears / noses – As is the usual occurance Abigail woke up during the night and had to come into our bed
7.20am – Gavin has the kettle on and Abigail is now sat happily drinking hot chocolate
7.25am – Abigail fingers are starting to cramp and her arm is now not working ( hemi episode)

8.40am – Gavin leaves to take Hugh to school which causes Abigail to have a meltdown and now her leg is also not working and her mouth is starting to droop on one side – Today is going to be a long day, It’s OK Gavin is working from home today so I have an extra pair of hands
11am – Abigail has bad dystonia and is crying in pain – there is nothing worse than having to listen to your child crying in pain and having to wait for the medications to kick in
11.10am – Abigail is now in a bilateral episode. All 4 of Abigail’s limbs are not working, her mouth is being affected and more than anything she looks scared – My heart breaks a little bit more as each minute ticks by and we just do not know how long this is going to last .
12pm – Gave Abigail some melatoinin to see if we can get her off for a sleep and paced the floor – Abigail seems more settled if you walk and rock her , not an easy task at 17+kg
12.15 – 12,55pm – Abigail asleep , hopefully when she wakes up the episode will have at least improved to a hemi
1pm – Abigail is awake and still in bilateral episode. All we can do is give her lots of hugs and make her as comfortable as possible
3.30pm – Abigail is still in bilateral and really starting to more and more unsettled so Gavin & I decide as per Abigail’s protocol we will give her buccal to see if we can break the episode and give some relief. We don’t like doing this as it does not always work and Abigail has a tendency to seize when in bilateral episode and it means that if this happens we have reduced the drugs we can admisiter at home.
3.40pm – Give Abigail 7,5mg buccal and wait to see if it is going to work

3.55pm – The buccal has worked and Abigail is now asking for a drink

4.10pm – Gavin goes to collect Hugh from football and I make Abigail some ready brek as she has not been able to eat for most of the day
4.30pm – Abigail arm and leg have stopped working again ( hemi episode) Is she ever going to get a break !
5.30 pm – Decide to bring Abigail’s evening medications forward so that we can bring bedtime forward

and this ain’t all of it 🙂
7.30pm Abigail is asleep and in bed – fingers crossed tonight will be the night that the episode breaks
9,40pm – Abigail has woken up – Gavin goes up to settle
10.45pm – Abigail has woken up – I go up to settle
11.20pm- Gavin & I get into bed and pray tomorrow is a better day for Abigail

In between all of the above we have also read with Hugh, talked about his day at school, cooked Hugh dinner and tidied up as best we can. So glad Gavin and I are a good team
Gavin & I had crusty bread & cheese for dinner – too late to cook!!!!


6.45am – Woken up by Abigail protesting that she wants “ Mummy” yes Abigail has woken up during the night again and is in our bed.
6,55am – Gavin, Abigail & I go downstairs to start the day
7am – Abigail’s arm and leg have stopped working – Gavin has to go into work today so I am on my own today
8.40am – Gavin & Hugh leave for school & work
8.40am – 9am – Abigail screams looking for Daddy & Hugh, finally distract by putting photos on the PC for us to look at.
10.30am – Abigail has gone in to a bilateral episode – It is going to be a long long day
12pm – Abigail is having problems controlling her saliva / swallow and is really unhappy as the dystonia is back with full force. Give Abigail some pain relief and hope it helps

12.10 – 1pm Walk and rock Abigail to try and give some relief
1pm – Ask one of the neighbours who I have seen if they would mind holding Abigail while I use the toilet.
1.30 pm – Abigail seems more settled so we have snuggles on the sofa and watch tv – All the time keeping a eye on her pulse ox machine

3.30pm – Hugh comes home from school and he joins us on the sofa for a hug and to tell me all about his day and reads his book beautifully to Abigail & I
3.40pm – Abigail starts to seize

3.43pm – Administer the first lot of emergency drugs, call neighbour to see if Hugh can go over for a while
3.50pm – Call 999

3.53pm – Administer second dose of emergency meds and put Abigail onto oxygen as her stats have started to drop
3.54pm – wassapp Gavin too let him know what is happening and ask him to head home
4.15pm – Rapid response car arrives – It is someone who knows Abigail, which is always a bonus
4.25pm – Ambulance arrives and the first responder leaves us in their care
5.10pm – Gavin gets home
6pm – Ambulance crew leave after giving Abigail a full check over. We and the ambulance staff try to keep Abigail at home as much as we can as going into A&E always adds the risk to triggering the AHC
6.30pm – Hugh comes back from the neighbours who have fed and watered him.
6.45pm – Abigail has her evening meds and pjs on
7,30pm – Abigail settled in bed
Gavin & I decide that we are both too tired to cook so end up ordering takeout.
During today the only adult conversation / interaction I have had is the 5 mins while the neighbour held Abigail and then when the ambulance staff arrived.
Life can be VERY lonely some days
After these two days the lovely Hugh fell ill as well but that’s a whole other story how I manage both 😊
Catch up with you all soon Em x –cureahcukmummy
#humantimebombs #oneinamillion #findacure

Emma Mallon

London, UK
Jan 29th, 2017