A delay in updating ...

is due to the fact that both of us have been unwell. Alyssa's "cold" turned out to be some sort of bacterial infection that also caused her skin to erupt in a rash, and sore throat. Then I got the fever and had tonsillitis, so am pretty sure that - even though I had no skin reaction - it was the same infection. The doctor thought originally that Alyssa had impetigo when he examined her, but nobody we saw after him (including the nurses and doctors at the paed hospital) felt it looked like impetigo! Regardless, the antibiotics and cream he gave me started to clear it up immediately so it didn't really matter - just that she was getting better.
Interestingly, she seemed to be very aware of the sore throat! So learned something new from it. She opened her mouth wide quite happily on Tuesday morning for the dentists and - by that night - would not let me look in it, and was refusing to eat ... so missed some of her medications, including the one she is trialling as well as some to help the gut pain! The following morning she kept pointing to her throat and - when asked if it was sore - kept telling me "yes" so she did seem to be aware of pain there. She certainly always felt the pain of her acid reflux when she was younger, and screamed constantly because of the burning there.

Anyway, our week has been fairly intense. Saw the dentists Tuesday, they were happy that the ulceration has healed somewhat and happy to agree that should Alyssa start causing more damage, they will remove the teeth. The dentist we usually see is still hopeful that Alyssa will manage to hang onto these molars, but also aware that the damage she causes is disastrous - in a very short space of time. So she is hoping that we will at least get to wait until this newest molar has erupted fully, to save them having to dig into her gums to remove it. Then she will be able to have them all removed under one GA (hopefully her last for a while - she's already had 7!). So I shall be seen monthly - at my request - while we continue to monitor the situation, or sooner if she starts to traumatise again.

Also saw the dermatologist on Tuesday. Discussed with her that although the current drug trial does not seem to be working, at least it has proved that Alyssa does not scratch (or scratches less at any rate) when sedated, and is much happier. Happier than she has been in a very long time, sadly. Seeing her as happy as she was on the first few days of the drug trial, when feeling the sedatory side effects was wonderful and heartbreaking at exactly the same time! It was so nice to see my lovely, happy baby again - the one we used to know, even when she practically lived in hospital and was being tested for everything possible. And heartbreaking, because it showed us exactly how miserable she normally is! And that is just the saddest thing about all of this. Feeling "no pain" should make her a happy little individual ... but unfortunately she has bigger things to worry about!

The dermatologist decided we should try a change of medications and attempt to sedate her, and see what happens. She explained that you cannot get rid of "itching" without sedating - unlike with hay fever and other types of allergic reactions etc, because the brain needs a certain amount of sedatory effect to affect the itching feeling. So she prescribed me a sedating antihistamine to replace the one we are currently using, and a drug which is acutally an antidepressant medication but which works on the same area of the brain to cause sedation and - at the dose being used - should hopefully knock Alyssa out overnight and reduce the amount of damage she is able to do when she goes to bed.

Didn't manage to catch the anaesthetist while there and was reluctant to start either of these medications without checking with him first - in light of the current drug trial and the possible implications adding in new medications would have. Plus, really needed to discuss Alyssa's increasing gut pain and see if that should be changed first. He had the most horrendous day by the sounds of things, and phoned me at 7:30pm that night and we discussed the various medications Alyssa was off the gabapentin for her gut pain and onto something more effective, and that we should start weaning her off it. I then explained that the gut pain was absolutely excruciating and that up until we discovered the gabapentin (only in Jan this year!) she screamed constantly without it. That the itching was hell, but it didn't even register on the scale in comparison to the gut pain.

He said to wean her down slightly and start the new antihistamines etc, and see him again on Thursday. And that he would discuss Alyssa yet again with the neuro on Thurs morning, and get his opinion on what else was worth trying. Then I'd see them both on Thurs afternoon so we could all discuss what differences there were, if any.

Long story short, we decided to continue the drug trial for the time being - especially as there is no way to know how long it may take for it to have an effect, and Alyssa will have nerve conduction studies done in a month. If at that time, she is not significantly improved, the drug trial will be abandoned as another failure. Did point out that the gabapentin was now not controlling the gut pain but we discussed and debated so many things that it sort of got lost in transmission, and I came away without an alternative. We also discussed her apparent progression of Alyssa's reaction to heat and cold sensations and that it is seeming more and more obvious that she has altered sensation, as opposed to just pain insensitivity or indifference to pain. She does not react to things that most of us would feel as painful - yet overreacts to heat and cold stimuli as if they were absolute agony when in contact with her skin! (see the "Story so far ..." section for more details on that, which I have updated also today).

Today; her gut pain is awful, she is very constipated and has not passed much in days and the gabapentin is not doing anything for the pain. When she is this sore, she will not eat and then I cannot get the medications into her that are meant to help the pain - so it's a vicious circle! I phoned the paed hospital in the hope that the anaesthetist was in today, but sadly it was not his weekend on-call. So I ended up having to give her the gabapentin (when she finally allowed me to feed her some yoghurt) then paracetamol AND ibuprofen almost at the same time, and eventually they seemed to help and she settled down again for a while. Thankfully, she sleeps most of the afternoon anyway, so she wasn't really sore again until almost teatime ... by which point I was able to give her the same medications again - but a bit more spaced out. Hoping to continue like this (with the new sedatives on board too, which knock her out overnight) until Monday, when I can phone the anaesth again and ask for something to replace the gabapentin with.

We are hoping it will not come to this, but it is beginning to look like the only way to help ease her symptoms is to sedate her longer term. Not to actually knock her out all the time, but there would obviously be a longer part of the day where she would be asleep. Which is both sad and awful in equal measures for a 2 year old little girl, but being awake and so miserable you need to tear your own skin off and be in agony isn't exactly a great life either! She may as well sleep for a bit longer and be happier! Here's hoping it doesn't come to that ...

None of this is fair! :-(