Things are not going well ...

I'm having a complete sense of humour failure at the moment. Alyssa's gut pain has been horrendous over the weekend - despite the increase (or maybe because of!) the gabapentin, and it has just caused her to strain more but produce nothing. Despite also using paracetamol on top, she's still been crying almost all weekend and complaining her tummy hurts (yes, I know all too well the irony ... because my child suffers from pain insensitivity!!!). It is extremely frustrating and verging on cruel that she should feel no pain in certain areas - to the point where she can mutilate herself because she does not realise she is injuring herself - yet have excruciating gut pain, which is extremely difficult to control! On top of that, she is now back to trying to tear herself apart - almost constantly - and has only not caused yet more self-mutilation because she has gone to bed with the arm splints on. The itching is now as bad as ever, and once again I cannot leave her unattended for even a few minutes or she is covered in blood!

And - just to add insult to injury - she now has the cold, so has a 39*C / 102*F fever and is even more miserable because of that, and scratching even more. She also does not seem to understand that none of this is MY fault, so she's now taking out her frustration on me as well, which just really sucks! I'm doing my absolute best to try and make her better - or as well as it's possible for her to be - I spend all my spare time researching what might help her, and she just takes it out on me because she wants me to help her! From a 2 year old's point of view, I should be making it all better ....! *sigh*

THIS IS NOT FAIR!!!!! I'VE HAD ENOUGH OF IT ALL!!!

Ok, pity party over! (well, enough to move on to focussing on the situation at hand!):

Phoned the anaesthetist this morning to discuss the possibility of getting a different medication to control her gut pain. Discovered he's actually off until tomorrow, so left a message with his secretary to let him know she's not any better at all on the increased dosage ... and that I'm also at that hospital tomorrow anyway so hopefully could catch up with him at some point. I'm seeing the dentist tomorrow to review her mouth situation (so far, no worse damage and the ulcer has healing tissue on top), and received an e-mail from the dermatologist late last night to say that if I am there in the afternoon, she will make a trip there to see us (Bless her, she's not normally there on a Tuesday but is willing to come there just to see Alyssa!) :-) so we'll be there for quite a while anyway.

I also plan to discuss the current drug trial and - even if the anaesthetist is not yet willing to admit defeat - plan to discuss what the next step is. It is now very obvious that in the last two drug trials, the sedatory side effect stops the itching (either a little or a lot, depending on the drug being used and how sedatory it is!) so - logically - I'm thinking that perhaps it's time to start trialling the sedatives, and see if we can find one that helps her! Preferably, something she won't just adjust to after a very short time and also not at a dosage that will knock her out completely! I spoke with Alyssa's paediatrician just before the current drug trial started, and she was also seeming to be thinking along those lines (and this was before the effects of this drug were so obvious - so we're on the same brain wave!) so hopefully the anaesthetist will have something in mind, or can look into that.

I personally am already of the opinion now that the drug has failed, but appreciate that the anaesthetist may not be ready to give up yet - as it's a new treatment option, the effects are so potentially varied and it may take longer to have effect. But I have seen a gradual increase of itching over the days since we started it and almost perfectly in sync with the sedation has worn off, the itching has increased. I am prepared to keep her on it if that is what he wishes, but only if we get a new plan of action in place. The main thing at the moment however, is to get the gut pain back under control. As awful as the chronic itching is, it is nothing to the excruciating gut pain she receives!!! And we only started focussing solely on trying to control the itch once we had the gut pain under control - because it was always the worst of her issues.

Will update again once been to the hospital tomorrow. Thank you all for continuing to read Alyssa's saga ... and putting up with my emotional rollercoaster!

x x x

So ....

Saw the neuro and anaesth yest: was asked how I felt Alyssa was. Told them that I felt the itching was perhaps starting to come back, but that it was still really too early to tell. That she wasn't any worse ... which was my main objective, and the neuro agreed. After the carbamazepine experiment (which she reacted horribly to!) I was slightly worried she'd react the same way to this drug, but she was already back in hospital by this point with the carbamazepine and she's not got any new symptoms since starting it. The pallor has calmed down again since she's adjusted to the drug, and I now know that the fever and meltdowns were due to her fourth molar erupting. And also because her gut pain has been growing steadily worse again lately, and is now upsetting her a lot of the time. We agreed that it was worth continuing, and that - as this is a brand new treatment, and there's really no-one to compare her to - we really have no idea how long it may take to work ... of even IF it will work. We can only hope. The neuro pointed out that - again, because of her not reacting to anything painful externally - he will need to do nerve conduction studies every 2-3 months that she's on this drug, as it has the potential to cause peripheral neuropathy so she needs to be monitored for early signs. As she has had it done twice already and it's not invasive, that's not really a problem.

Seeing the dentists again on Tuesday, so can get their opinion on the molar situation. The deep ulcer she had is starting to heal again ... so she may get another little while with these teeth before we have to decide if we need to remove them again. But we'll see as this new one grows in and makes contact with the upper one.

The arm is finally healing! And she's more or less leaving it alone now (while covered with a bandage and the sleeve which is tied at both ends to stop her getting at the bandage!) ... so hopefully that will continue until it is fully healed.

However ......

Last night, we were up almost all night with Alyssa tearing at her neck and the back of her head. I had the night I worried I'd have when debating whether I should buy a video monitor or not, because I could see her at it constantly, and - of course - then I couldn't just sit there and ignore it. I knew if I did that, she'd have extensive damage and it would be a blood bath again when I got up. Told her repeatedly to stop scratching and tearing at herself, and carried on with this until about 4am when I couldn't keep my eyes open any longer. Finally resorted to putting the pedi wraps on her (arm immobilisers) so that we could both get some sleep. They're really getting too small now, so may need to buy some new ones - although was hoping not to have to use anything now! And normally she fights them constantly, and spends hours just trying to get them off (which she usually manages!) but last night she must have been as exhausted as I was, because she went to sleep with them on, and still had them on when she woke me up this morning.

Her tummy was very sore this morning also, and she kept pointing to her cheek and saying "cheeeee, cheeeee" at the point where the new molar is so she's definitely feeling the teething pain. Gave her some paracetamol, then phoned the anaesthetist for advice regarding the tummy pain. He initially seemed to think I immediately wanted to remove her from the new drug, but I explained that I really thought her guts were more of a problem at the moment than the itching. And that perhaps although the itching is starting up again, she's so frustrated by the gut pain that she's taking it out on her neck because she can get at it. So we're going to increase her gabapentin (and then everything else required to combat the automatic constipation!) and hope that this is just a minor blip in the treatment. He doesn't want to give up on this new drug after only a week, and I agree that we're not at the point of admitting it hasn't worked yet ... so we'll continue as we are for now, unless she gets much worse. He doesn't want to take her off the new drug for at least another 2 weeks, so we can be sure we at least trialled it properly. I agree with this, as long as the whole team are prepared for the fact that it may not work, and can admit defeat at that point. I also however, do not necessarily want her taken off it if it is still helping her mood, sweating and general happiness, unless they have another suggestion. It may not help the itch, but it's made her a bit happier up until now and has definitely reduced the sweating - without causing her to overheat - and that's a huge improvement.

I'm very tired today, having had almost no sleep last night so will probably not update again for another few days ...

And so it begins ....

Took Alyssa in to our local childrens' ward this morning because - yet again - she had caused fairly nasty wounds to her neck area and I (and pretty much everyone else I've seen) have already run out of ideas as to how to prevent/dress/stop her from traumatising this area on previous occasions! The community paediatric nurse spent about an hour "adapting" a special atopic eczema garment to cover the back of Alyssa's neck - after dressing her wounds. The hope was that the garment over the top, which was then attached over the top of her head by a "hair band" made of elastic would prevent her getting at both her neck AND the dressings, because she will tear them off to get at her skin.

It was reasonably effective for the majority of the day - particularly for the prototype of it's kind - but my ex (who has Alyssa this evening) has just informed me that it's not working while she sleeps, and her mitts are once again covered in blood. Asked if the dressings are still in place .. and for the time being they are, although also covered in blood! *sigh* Will see what I can come up with to re-improvise tomorrow!

Meanwhile - in more "teething" news - discovered this afternoon that Alyssa has indeed begun chewing on her inner cheeks. There's not extensive damage as such yet, but there is a fairly impressive ulcerated area on the inside of her mouth - on the side where she has both an upper and lower molar - so; like last time with her premolars, she's catching her inner cheek between her teeth ... and not realising! :-( As there is currently no bleeding, I am going to wait until monday and see what the damage is like then ... and perhaps come to a much-needed decision over her molars. But we have "ridden it out" like this before, and only removed the teeth once the bleeding and/or damage became unbearable. And that shall remain the plan. I can really do without the mommy guilt of removing teeth that "may or may not" do extensive damage ... because that is the hardest guilt of all. It's different when faced with a situation where it's obvious that they NEED to come out, and a much easier decision! I have the usual feeling of dread, where I do not believe we can keep these teeth ... but will continue to hope as ever that "this time" it will be different.

In other GREAT NEWS ... the Family Fund contacted me yesterday to say that the application which I made to them a few months ago had been successful. Long story short, she said that they will provide me with £550 in travel vouchers *faints* which can be used anywhere - so if I get the chance to go to see the specialist in New York that we've discovered - I can put them towards flights!!! Yay!

THEN she said that they like to pay a little bit more for the first claim (you can apply for help once every 12 months) so asked if there was anything else I needed for Alyssa. Told her that I had moved to my current house temporarily but had just finally been granted severe medical disability priority for Alyssa which entitles me to apply for the 3 bedroom house I wanted. That the extra bedroom was going to be converted into a "soft play" area for Alyssa ... so she doesn't hurt herself and that hopefully it would actually be an area where she could play for short periods unsupervised, without being able to hurt herself! But that I was obviously going to be looking for funding for this. She said that was absolutely no problem and that they will also give me a grant of £500 for a soft play room! O.M.G! I couldn't believe it and was genuinely shocked! That's AMAZING news! I'm not sure that I believe it yet!