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Hard times 

Things went from great to worse so quickly. We had a great run for about five months with the seizures and it’s never ever been like that before. 

My daughter had managed to come off the heavy morphine and Valium and things were getting so much more comfortable. 

Then …… 

Seizures start again and in a 24 hour period things change 

Three seizures within six hours and then a big bleed in her nappy. Scary stuff black maroon tary red blood Poo. Large amounts. 

We take her to hospital where more bleeds continue and on arrival hb count high 150’s the next day after three more bleeds. 

Hb 90 

Following day endoscopy where the camera goes down her throat to look at her stomach and just through and they can see inflammation but not enough to be bleeding that much from below. They then do a meca scan to scan the lower intestines and after an hour still no signs. 

More bleeds and then 

Her gastrostomy peg ( she is fed through a tube into her stomach) it is plugged into a draining bag and it starts draining bright red blood 
So we now have two lots of bleed spots. No answers 

I’m so run down and have a sore throat and head cold and am struggling to find more ways of studies to ask them to do. We are waiting on more bloods to check hb count. Waiting for it to drop for infusions.

My daughter looks terrible 

She is lethargic pale and floppy 

She is in pain 

She is my daughter and I want answers 

Please please help her 
It’s a huge stress feeling so helpless 
This post may be simple or annoying to some but this is exactly how life can go with a chronically sick person. 

One minute fine the next up shit creek! 


This entry was posted in: Uncategorized


I'm a mum of four who loves my kids but juggles some amazingly hard battles with disability and illness with two of my children. Sleep deprivation, time and being Homebound you will hear about many issues I face daily but mostly with a positive view. I just need somewhere to vent So thanks in advance if you even bother to read my mumble jumble

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