We are experiencing severe pain!!! :-(

Over the last couple of weeks, I've noticed that Alyssa's discomfort when trying to pass a motion has been increasing but - all of a sudden - a few days ago, she started screaming when needing to go to the loo! S.C.R.E.A.M.I.N.G!!! Her "gut pain" has been much more obviously rectal pain for some months now; and coming on when she felt the urge to poop, but still she strained and strained excessively with discomfort but not like this. This is clearly agony to her! And when it comes on, it comes on very suddenly ... and she hits the ground like a stone! On Thursday night, she went down so fast that she actually smacked her head off the concrete !! but didn't even register THAT (despite the fact she could have fractured her skull!) because that's not the kind of pain she feels! :-(

I took her to the GP on Friday morning and explained that something different is going on, and there is something very wrong with Alyssa! We discussed her behaviour (and I brought the doctor up to speed on the history and various theories about Alyssa) and she wondered if Alyssa perhaps had an anal fissure. I explained that Alysssa has been reacting more and more lately to any touching of her bottom (even trying to wipe her clean after a dirty nappy - and especially so!) but even touching any part of her bottom causes her to say "no" and ask to not be touched! This is definitely new, as she has only ever really said it hurt when she was trying to poop - not complaining when she sits down sometimes that it hurts, that being touched anywhere on her little bum hurts ... etc etc. The GP examined Alyssa (as much as Alyssa would allow her to, although the reaction was definitely nowhere near as exaggerated as it is mid (or post) pooping, and said that the surrounding area was definitely sore-looking and red but she couldn't see anything else obvious. She asked when I was due to see the specialists at the hospital again and I said that I was told to contact the pain specialist when required, but that it was unlikely I'd be able to see him before Thursday of this week - and Alyssa obviously couldn't be screaming until then! That the neurologist had wanted to see us on the 24th but that we have the police presentation that day, so we'd arranged it for next month ... and that Alyssa's paediatrician was still on holiday! Hopefully due back soon (I think this week, but she'll still most likely not be straight back at work even if her flight is not affected by the volcanic ash situation).

The GP said to put Alyssa back on the lactulose she used to get (in addition to the Movicol we use daily) because this would help soften the stool, without causing her to cramp more - like we tend to find if we just increase the Movicol and gave me some ointment to use on her bottom, straight after she managed to pass a motion. This ointment has a bit of local anaesthetic and some steroid in it, to help both numb it and also heal the inflamed areas but recommended that she be seen again by the specialists again as soon as possible. I tried the pain specialist's secretary but unfortunately, only got an answering machine and didn't get a return call before the end of working day Friday so hoping someone will phone tomorrow. :-(

Since getting the cream and adding the Lactulose back in I thought she was a little bit better each time she had to pass anything, and she went to her dad's last night as arranged previously. He said she only had one screaming epsiode ! once through the night, but that she seemed to poop fairly quickly, unlike the night before when I was up with her for at least 20-30 minutes. And that she'd been really happy all day today, with only her "usual straining" so I figured that she was slowly getting some relief from the new medications added. However; after returning home, she was pretty miserable and just wanted to lie on the rug with me. She was gasping in pain every so often just passing wind, and was convinced a few times that she had pooped ... but she hadn't. Then - just as she was about to be put down to bed - she started screaming again! A blood-curdling scream, then begging to be helped and screaming that it hurt .... and she was pooping again! That went on for perhaps 10-20 minutes and she cried constantly while I was trying to clean her up, complaining that the wipes were hurting her and that I was hurting her :-( while I tried to change her, and put the ointment on her. She was so exhausted from the pain and the screaming that - if I hadn't been hurting her by touching her to change her and apply the cream etc - she'd have drifted off on the change mat, but she couldn't. Got her dressed into her nightwear again and got her ready for bed (socks taped on her hands and arm restraints to stop her tearing her skin off, teeth brushed etc) and put her down hoping she'd settle quickly with how tired she was. Unfortunately, she still wasn't finished and the screaming started up again about 10 mins later. Gave her painkillers, more lactulose and just had to then hold her and listen to her sobbing, begging for help and just riding it out until she finally pooped again. *sigh*

It is now about an hour since that last lot of "fun" and she has finally drifted off to sleep, thank goodness. I have been howling for at least half of that, because it's so hard to listen to your child begging you to stop her hurting, but even more so when they tell you to STOP HURTING HER! :-( She knows that I'm trying to help her, but she's also only 3 and none of this is fair!

Am I glad that "at least she's feeling some pain" like so many people ask me? Well yes, in a way I suppose so - because at least it's a sign that something is wrong with her (which is the whole point of pain, in you and I) and it's so acute and severe, that at least I know something is different from her usual gut/rectal pain ... but IF this also turns out to be something that "they" cannot do anything about, then I would rather Alyssa felt NO pain at all. To have all or nothing would be preferable to this; where I spend half my time trying to explain to doctors that she doesn't feel pain and the other half trying to get the specialists to understand that the pain she DOES feel is excruciating! There is no benefit to being able to feel pain, if no-one can solve the underlying reason for the pain (or even find what that reason is!) ... none whatsoever!

It still seems really cruel that Alyssa does not feel the type of pain that would protect her from injury (self-inflicted as well as other types), but that she feels pain that is so far unexplainable, and untreatable! *sigh* I am exhausted with all of this at the moment, and that probably means it's time to sign off again. Hopefully by the time I write again, I will have an answer for what's going on with her new severe pain ... and something that can be done about it. I'm not sure how much longer I can go on like this, having to watch her (and listen to her!) in so much pain!