Epilepsy and Chest Infections

What a week. It seems lately that every week or so there is always something dramatic going on or something rubbish happening. I’ve been working hard on remembering to take my meds, and to keep plodding on and be more upbeat. But when life starts throwing threatening illnesses and diagnoses at my child, cars breaking down, and whatever else has happened lately it really starts to get you down.

At the weekend we tried to go to a BBQ we had been invited to. I was really excited to go and there was a paddling pool and bouncy castle there too. But I knew Amy wasn’t 100%. I wasn’t sure what sort of illness she was brewing but I did notice in the morning that there was a mild tracheal tug going on. I put it down to hayfever and a cold as her eyes and nose had been so runny. So I medicated her up and decided we would go anyway and if she wasn’t up to it we wouldn’t stay long.

We had been there less than an hour and she was looking awful. We put her in my friend’s daughter’s bed to let her rest, put some videos on for her and watched her. My friend’s child has loads going on medically so we checked her sats and obvs (temp, resps, oxygen levels etc). Her heart rate was really fast and her temp was very high. So we rang the hospital and asked to have her assessed.

Once we got there I was adamant that what we were seeing was a chest infection. I told the doctor she didn’t need an xray as he could hear that she had a strong crackle on one side of her chest. We all agreed oral antibiotics be prescribed and then us all go home.

The nurse came in to do a final set of observations before sending us home. The sats showed as 82. We were so shocked. Sats are usually 99/100%, anything below 92 is cause for concern and usually a person is put on oxygen. The doctor literally ripped up the discharge letter and got us admitted to an open ward.

Amy was put on oxygen but this wasn’t bringing her levels up enough. A salbutamol nebuliser was given, blood gases tested, a canula inserted for antibiotics and fluids (took 4 goes poor thing) and optiflow oxygen started (wet/humified oxygen). It was so alarming. I haven’t seen her fight for her life like that in a very long time. We are used to fairly regular chest infections but nothing like this.

Eventually she stablised and she was left on the optiflow and maintaining decent sats levels. Our pediatrician happened to be working that night and came in to see us.

“Amy’s results are back from her EEG” she said. I felt a bit sick. I have been waiting for these results for a few weeks. We know she had that one big seizure, and I know that for a few months I’ve been constantly saying how amy is different and doing “strange” things. But I really thought the EEG wouldn’t have picked anything up and that either she wasn’t having seizures, or maybe she needed a 24 hour EEG.

“The EEG showed that she is having A LOT of unwanted electrical activity”. So in addition to her rescue meds she now also has sodium valporate twice a day. Her trihexiphenidyl was also swapped for levadopa. It was devastating. Seizures were the one thing we thought she had escaped on this whole cerebral palsy journey.

Day by day she is getting better and we only stayed in a couple of nights. She’s still on antibiotics but just through her tube and not an IV.

It’s all been really tough. She’s not been at school this week… she was only in one day last week too because of her GJ change at the city hospital.

I really really hope that as the meds get increased week by week we start to see our old Amy again. I miss the smiles. She can be happy.. but not like before. Something is stopping her. Obviously I am worried also about her getting bad side effects from meds. The picture I put up there is her 8am meds from this morning. I can’t believe how many syringes of meds she has each day. I am on a bit of a downer about it all and still processing it and aside from that there is a lot of other stuff going on in our lives… I just hope soon things settle and we can start to build nice memories again and be happier. I know Phil is struggling too. Just want everyone happy and well.

I have so much more to ramble on about, but I need to get myself ready to pick her up from respite. Haven’t really stopped today, been playing catch up. Should have a nice weekend though, got lots of nice family stuff planned.


At Least the Blossom Trees Look Pretty

Hey everybody. I am really not doing well today.

I guess it has been a rough few months really. I just emailed Amym’s (my daughter’s) pediatrician to see if we can bring her appointment forward.

Recently she has got into a lot of self injurious behaviour. I have literally no idea why. It could be epilepsy, could be sensory, could be behavioural, could be frustration/communication issues. In the last hour she has caused her chin and neck to bleed in spite of my best efforts to keep her safe. School and respite put socks on her hands and make sure she can’t do too much damage and I’ve been making a more concentrated effort to keep her nails trim and smooth.

Her athetosis has been absolutely wild. If I lay her on the floor she pretty much thrashes and bounces with such momentum that she goes flying onto the hard wood floor or flips onto her tummy and gets stuck. She can kick her legs so hard that her whole body twists round and she can smack her feet onto the floor or radiator. The room is as padded as can be, and we have a new high sided bed on order. But I feel like lately instead of raising a happy little girl and helping her with physio and speech and language… I’m just safe guarding her constantly and trying to prevent meltdowns. I don’t know what I am doing wrong or what I could be doing differently.

Since the seizure this has all started and I am not sure if there is a connection. I am still waiting for EEG results and have left some messages/sent some emails to chase them up. Though I half suspect they’ll come back fine and we’ll need to do a longer EEG.

We are also waiting for a different hospital to give us a second opinion on long term feeding options. Right now she is 24 hour GJ fed. (Trans gastric jejunostomy). Yesterday she had a routine GJ change but the first lot of sedation failed and she had to have a second course which unfortunately was a rectal one (called formaldehyde). Sadly this was too much and she wouldn’t wake up for 5 hours. The day case ward started to close around us and they allocated us a bed on the short stay unit. Eventually we managed to rouse her enough that they would let us home.

These routine changes happen a few times a year. The risk of sedation and the missing of school are a quality of life/safety concern for us and we know that this can’t go on. Surgeons recommend EGD surgery (total oesohphogastric dissociation) which is basically separating the oesophagus from the stomach and re-routing it to the jejunum (intestine/bowel).  It is major, major surgery, and one that I don’t feel she is a suitable candidate for. I feel a separate jejunostomy would be more appropriate but obviously I have no medical background so it’s just a hunch. So we are going to hopefully seek a different outcome from elsewhere. I totally respect what the first hospital have advised, and I get that they deal with motility/gastric issues way more than I ever could… but at the same time I am a mum putting my daughter’s life in someone else’s hands. No decisions like this are made lightly and her comfort and quality of life will always be at the forefront of my mind.

On top of this there’s a few other issues going on, I know it’s tmi but I had cystitis last week and generally felt grim. This week I thought would be a bit better but the whole GJ thing and keeping Amy safe has been a tough pill to swallow. I did a self help referral recently and I have a phone interview next week for it. It’s a 45 minute one and I have a questionnaire to do first. I’m nervous, but I figured my anxiety clearly isn’t going away with medication alone and maybe there is something else I can do to try and get better.

Yesterday as we walked through the hospital two nurses came past with a small incubator. They were heading to the NICU (newborn intensive care) where Amy was transferred when born. The child was fully ventilated with every tube and wire going. Loads of monitors. CPAP hat. The works. It hit me out of nowhere. I nearly fell to the ground. My legs went like jelly, my chin wobbled, and I immediately cried. I forget sometimes what we came through and how hospital life will always have these random triggers for me. My mum was with me and I was so glad. I think it hit her pretty bad too but she managed to stay composed for me and be the rock that I very much needed all day yesterday.

I am hoping to see my dad in the next few days… his work shifts are such that we sometimes get a nice dog walk in whilst Amy is at respite. Seeing my parents is so important to me and a real highlight every week. Also Phil is now off on sundays and I am hugely pleased about this. We might be going to a BBQ on sunday so that’ll be cool.

In the time since my last post we have had lots of nice days out and actually lots of positive times and nice memory making. I know I come here and can be really negative, but I do have good days and there is still so much to be happy about and grateful for. It’s just one big mental battle sometimes.

Anyway. I guess that’s it really. Just wanted a little vent at everyone. Time now to get on with making tea and getting Amy to go to sleep. She’s had her meds but is presently somehow calm in her bedroom with music on. I am enjoying it whilst it lasts!


Hiding in Logs

I feel calmer today. Phil is off work.

A simple thing such as changing GP seems to have caused me a lot of stress. I guess because medicine is a huge part of my life now and collecting prescriptions, keeping stocked up, ordering tube feed supplies etc is a daily thing. I like to be overstocked if anything so you know you are prepared. Some of the meds come from hospital, some from pharmacy, some meds are controlled meds and can’t be ordered online, and some meds need special training and to be pre draw and taken everywhere.

I sometimes genuinely wonder how on earth I filled my days before we had Amy.

My nightmares are still really bad. When all signed up for the GP I need to try and tackle it. I’m waking up panicked and exhausted most days. Last nights one (the bits I remember) were sort of hilarious in a way. I dreamt it was my dads’ Birthday and that to celebrate we staged a zombie escape day. There were 100 “zombies” (people dressed up) and 50 civilians (i.e us). Annoyingly the zombies could track us on these infrared tracker things.. we only got 10 seconds to get ahead of them and they weren’t allowed to run. I refused to do it saying my anxiety was too bad so I stayed at this lodge thing. As the game went on, more and more people returned to the lodge missing chunks of their arms, limbs, all sorts. I started to realise it wasn’t just a game. This then turned into me genuinely fleeing into the forest searching for my family in a frantic panic. People were hiding inside man-made logs unaware that the zombies could track them. It was petrifying. The night before was some sort of torture escape one, and that one really was scary.

Irony by the way – I just had a call asking if we need any feeding supplies. Ha. A while ago I did actually tell them to stop calling.

I overdid it with the lifting of Amy over the weekend. Did lots of helping her walk by fully supporting her body and shifting her weight on each leg so she sort of walks. It’s hard work for both of us but it’s nice I can give her that sensation and also physio recommends it. But my back is paying for it two days on!

Tomorrow I start doing some mystery shopper typed things. I need the spending money.. every time I get a phone bill it’s like arghh. All carers allowance and DLA goes to paying bills and also to all the extra things we need to buy for Amy (probiotics, bibs, gtube pads, stuff like that). Phil works so many hours and that pays for the petrol and all the bills and rent… but I hate feeling guilty if I want a coffee somewhere etc. Working full time weirdly gave me a freedom I never knew I had. Hopefully I’ll hear about the voluntary work soon too.

Anyway. Sort of just checking in. Amy has her EEG today. Her first day back at school after school holidays and the poor thing gets dragged out to have probes put on her head. I am part nervous, but mainly expecting her to not be having seizure activity. I think the big one she had is either a one off, or it will happen in a few weeks or so and therefore not get picked up on. We shall see.


Itching to Complain about Eczema

According to the National Eczema Society 1 in 5 children suffer from eczema, and 1 in 12 adults are afflicted with it. It is quite literally a pain and I have battled with it all of my life.

It seems that social media is enlightening a lot of people on chronic illnesses and making us aware of the strife others face. For me eczema affects my daily life and has done every day of my life. These days it is mainly my hands that are affected.

Don’t get me wrong, I know there are far worse illnesses and I know that my daughter has contended with much more than this. But I have never really put into words my journey with eczema and not a day passes where I don’t wish I didn’t have this problem. I am also aware that there are people who suffer with eczema far worse than myself and they have my deepest empathy. I don’t write this post as a whinge, “feel sorry for me” or a “oh woe is me” entry, I just felt like writing about it as today it has been my main focus as I try feverishly to recover from my latest flare up. (Amy is at respite so I have had my hands free-er than usual)

Recently I am afflicted with a flare up that I haven’t been able to tame. I can attribute a lot of the blame to my care duties with Amy – She is tube fed and this means drawing up a lot of medications, washing my hands a lot, cleaning a lot of syringes. In addition to this I do a lot more laundry than most people probably do, and also bath her a lot as well – all related to her gastro/feeding issues. The knock on effect is that I am constantly dealing with chemicals, wetness and all sorts. I have a diprobase pump in most rooms and have switched to eczema friendly hand wash (dermol 500)… in addition to this I have special shower gels, diprobase, cetraben, ultrabase, and epaderm. My doctor has stopped my steroid creams because I have been using them for too long and it is actually exacerbating my symptoms.

My very kind friend Lucy recently posted me some zinc based bandages for helping atopic eczema. I think the idea is that you wrap them on, then cover with normal bandages and leave it for 3 days. It seems to work, and the bandages are quite fun to put on. You get the added bonus of looking like your hand has been mummified, and if you’re as fascinated by ancient Egypt as I am, then this is a true Brucey bonus.

Unfortunately though due to the location of my eczema it is very difficult to keep the bandages on for this amount of time – my lifestyle is not suited to relaxed hands! I have been keeping them on overnight and trying hard not to itch, I also have cotton gloves for helping epaderm soak in properly overnight. It’s still not gone though. My hands are so so dry. The temptatinon to itch is overwhelming.

When I visited my GP last week she was visibly shocked by the extent of the damage. My hands and fingers were weeping, bleeding and so blistered. I wanted to cry. If you’re like me, and living in the UK with this – if you don’t have a pre payment prescription I suggest you set one up! I got prescribed about 5 different creams last time and if I wasn’t paying £10.50 per month for my precriptions it would have cost me about £40!

I sometimes think some of my anxiety issues can be blamed on my eczema. If someone goes to shake my hand I can feel my heart pounding through my chest and I’m thinking “please don’t notice my gross dry hands, please don’t” (Also I don’t like touching people, and I freak out about hand germs.)

I miss using heavily scented bath products like radox and stuff from lush, I wish I could use my hands with confidence, I wish I didn’t have to spray my perfume on my clothes. I am dreading summer and the need to apply sun cream.. this is usually guaranteed flare up.. I think I would rather burn from the sun than from eczema.

In my desperation I have been reading up obsessively on causes of eczema, and treatments. The fact that it is on my hands is obviously pointing towards it being from things I have to do with my hands. So I wear washing up gloves when cleaning, spontex gloves if dying hair and sometimes preparing food.. I read that some people bathe in oats, or they try to rule out allergies by cutting out dairy, gluten etc. I don’t have the will power or motivation to cut out dairy or gluten, as for oats.. i keep forgetting to buy them. I have been bathing in oilatum recently and i love the smell.. I just miss the foam because 1) It is pretty and 2) It hides my fat whilst I’m bathing and I can pretend I’m a mermaid or supermodel, and let’s not rule out bubble-bodied human hybrid centaur-like thing.

I am always envious of people who don’t have to deal with this… not that I would wish this on anyone. I hope when I complain about it people can understand that this is a lifelong, ongoing, chronic illness. It isn’t just a bit of dry skin… it is burning, agonising, bleeding horror! So, I will go now, as in less than an hour I need to pick Amy up and I am wasting valuable hand moisturising time typing… it was either that, or a greasy keyboard.