Ok ....

So, thought I'd have a few days off before posting again. As per usual, Alyssa likes to keep me to her schedule and - while feeding her lunch - heard a "grating" noise while removing the spoon from her mouth today. Dreading what I was about to find ... I told her to open wide and put a finger in her mouth .... she has THREE MOLARS already erupted (explains the recent excessive salivation more than normal for her). So now am already in "countdown to destruction" mode, and hoping that she can hold off from chewing the inside of her mouth until the drug trial at the beginning of next month.

Of course, I'd only just spoken the medical secretary about that this morning and mentioned that I had misgivings about Alyssa being admitted over a weekend that her consultant was not on-call, especially as previous drug trials have not gone well - and one went horrendously badly. The last thing I need while in the middle of a drug trial that's going pear-shaped (which will be stressful enough) is to have to sit there and "teach" the random doctor on-call about Alyssa's problems - or worse - argue with someone who thinks he/she knows more about her than I do! I am not a doctor, nor do I proclaim to know more than a doctor about their own field ... but I am a specialist in Alyssa! And most of the doctors I see learn FROM ME about HSAN (Hereditary Sensory Autonomic Neuropathy), Pain Insensitivity, because it's so rare they've never heard of it!

I have an appointment with the specialist dentist tomorrow to discuss how quickly we think she'll start chewing herself again - could/would hope that she won't ... that "this time" it will be different, but we've done that with every tooth so far ... - and the damage caused the last time her molars erupted was just horrific to be blunt. And scarily faster than you would even believe, even for those of us who are used to it! So it's fairly certain that they will need to be removed but hopefully she can wait for a few weeks. Have suggested that the new plan be that she goes into the hospital a couple of days early and has the GA and dental extractions the first day, then - assuming the anaesthetist agrees - she start the drug trial a few days later, once the consultant is happy that the GA (and other nec drugs) are out of her system so it is a fair trial of the drug. Have told the medical secretary that I will keep her up-to-date with the teeth situation as it progresses.

Obviously, if she should start causing damage before then, she will need to be admitted for an emergency GA and dental extractions ... like previous admissions.

Watch this space ...!

(PS: the fingers and tummy pain are getting better thankfully ....!) ;-)


Edited to add:

Decided I should probably put an addendum to today's post - for those who are new to Alyssa, and are horrified that she should be having her teeth out ....

In the past - especially before we knew what was going on with respects to her mouth, and the constant ulceration - I fought to keep her teeth! When the first dentist suggested that the teeth causing these ulcers be removed, I was horrified!! We tried having her teeth filed down, a mouth guard, and leaving the ones that we thought were too far back in her mouth to cause damage.

All of these suggestions failed! And she was ALWAYS bleeding ... either from her lips, inner cheeks, tongue, fingers or hands ... which she would bite and most of the time be completely unaware she was even damaging herself. At one point, she bled constantly for 3 solid weeks and was almost anaemic before the hospital finally admitted her for dental extraction. I am now at the point where life is only bearable, and this stress-free when Alyssa has no teeth. I am dreading the damage that could be caused between now and 3 weeks time when her planned admission for drug trial is scheduled.

HOWEVER, I shall not be rushing her in to have them removed ... unless she starts to cause damage in the meantime!!