Another week has just whizzed by ...

without it seeming like that long since I posted! What absolute craziness it is here!

Alyssa's not had too much pain in the last week (bowel movements aside!) and has been on pretty good form this week! Yay! The crown on her upper molar seems to be doing the trick, because the current ulcerated area is showing signs of healing tissue again ... so hopefully that will continue. Seeing the dentist again tomorrow, so he should be pleased by the current state of the ulcerated patch.

Alyssa was supposed to be having her bed/cot assessed for a "sleep system" this morning, but unfortunately the woman coming could not make it. So she's rescheduled the appointment for the 21st October ... just days before we go to New York! The sleep system is specifically designed for each individual to keep them in a comfortable position while sleeping. Alyssa is essentially crippling herself - both during her "normal" postures throughout the day - and the positions she gets into at night. As she doesn't feel it, nothing is uncomfortable to her, and she lies in cringe-worthy positions! :-( Plus, her usual sleep position is with her feet and legs under her as if she was sitting up, but folded flat over them with her arms (and arm restraints) outstretched above her head. This cannot possibly be doing her tummy/digestive system any favours - to be squashed all night.

We're currently organising a fundraising "pub quiz" for Monday 5th October at the Forresters Arms, Cambusbarron, Stirling. We're collecting raffle prizes and quiz prizes at the moment, so hoping lots of people turn up ... or we'll be drinking wine for a long time to come! ;-) Prudential raised LOADS for us on Friday (total amount still to be confirmed, but estimated to be in the region of £2500!!!). Originally thought some of that was for other charities, fundraising events but have been told that this is not the case, and that it's all for Alyssa! So ... very grateful to everyone there who donated/bought cakes/bought raffle prizes etc.

Oh, and also trying frantically to narrow down the EXTENSIVE family that is my family tree, as have found someone in the US who is very possibly a relative ... and whose daughter has Pain Insensitivity too! That's just too huge for words, and has so many implications genetically. Would make it much more likely what was causing Alyssa's Pain Insensitivity, if we were related, because her daughter's condition has already been diagnosed. Will keep you posted on that front. Speaking of which ... better get back to it!

x x x

It's been a looooooong day!

Had a lot of fun this morning! Realised last night (after our first fundraising car boot sale yesterday) that I've spent so much time and energy lately trying to organise ways to raise money, that I've hardly spent any quality time with Alyssa in the process! She stayed with her dad on Thursday night this week, and then with her gran on Friday night - to allow me to get up and organised to car boot sale early Saturday morning - and I couldn't believe how much I missed her! It's the first time she's ever been away from me that long, and it was really weird .... and not in a good way!

So ... I took her to our local soft play centre this am (Kidzworld) and we both had a great time, can't remember hearing her giggle so much as I did this morning as I chased her about and repeatedly caught her - just as she was falling over from laughing so hard and looking behind her, to see if I'd nearly caught up with her! Lol! An hour of that is unfortunately quite hard work with her extremely low muscle tone and hypermobility, so we were ready to go by then and she was already drifting off to sleep in the car by the time we were halfway home!

Annoyingly - and something I forgot to mention from Tuesday's update - is that we agreed to stop the latest drug trial (Thalidomide) because it really wasn't doing enough to warrant keeping her on it, with it's strict guidelines for administration etc. And - of course - within 2 days, she was scratching more .... but she also had a cold and resulting low-grade fever, so I was trying to put it down to that ....! However, the excessive sweating has now kicked back in so the Thalidomide is clearly getting out of her system now, and I've spent most of the day feeling like part of the WWF team in wrestling her to the ground at times just to stop her attacking the back of her head! *sigh* I'm not convinced it's actually the Thalidomide which stopped the itching as such ... but that because it reduced the excessive sweating, it in turn made her less itchy! I shall now have to update the specialists and see if there is something we could try to test this theory - ie putting her on something that will reduce her sweating, without attempting to touch the itching like the Thalidomide was meant to be doing - so we know for sure which is making her worse. I obviously don't want her on Thalidomide longterm if it's not having a significant improvement to her symptoms, although her symptoms are so many ..... it's hard to know what's best for her sometimes!

She's not been too bad today with respect to her guts, but am still having to help her pass motions using baby massage. She has also just automatically crying out for me to "help" as soon as she feels she needs to go, poor girl. It's just so much effort for her to do it by herself, not to mention the pain she feels at the time. Here's hoping this procedure which is now planned will be sooner rather than later! And with that in mind, I spoke to the anaesthetist on Thursday and we both agreed that it's sounding very much that this procedure will help resolve or at least reduce the pain she's in with bowel movements. It should also help reduce or eliminate the straining she always has to do, by reducing the pressure that builds up there. It's not clear (to me at least) if her rectal/anal passage is too narrow, or if the autonomic nerves used in that area are just not working as they should to aid defaecation but hopefully the procedure to stretch the anal area will still make her more comfortable. This procedure is mainly used now for children with chronic constipation, so fingers crossed.

The teeth are still an annoying factor, as I'm now fairly sure that the ulcerated area is now either bigger again or more damaged than it was on Tuesday. Alyssa is meant to be being reassessed in a couple of weeks from our visit but - as per usual - the dental team are so busy, that it's actually 4 weeks from our appointment last week. Presuming the operation goes ahead before that (as we're hoping it will) that leaves me in a difficult position. If I ask for someone to assess it on the day of the op, we may decide that the teeth need to be removed .... but they may not have a dental surgeon available then, but if I try to get her assessed before that it's a lot of hassle to actually get someone who knows what they're looking for ... AND someone who is actually able to make the decision to remove them - with my permission of course. Hmmm ... think I'll e-mail the specialists and ask if a dental reassessment could be made prior to the GA for the op and see what happens!

Ok, rambled long enough. Will update again as soon as I can. Life here is even more hectic than normal with all the fundraising organising going on!

How things are today ...

It's been a pretty bad weekend as far as gut pain goes, and poor Alyssa's been complaining fairly constantly about her "sooo" (sore) tummy/bum. It's still causing her pain for up to 2-3 hours before a bowel movement and sometimes afterwards as well, if she hasn't passed enough. So ... pretty much most of her waking (and some of her non-waking) hours! *sigh* So much for Pain Insensitivity!

Saw the dentists today and we discussed the large ulcerated area on the inside of Alyssa's cheek. The other side which had a small area starting appears to have almost healed again, and the large one is looking slightly better than it was on Thursday. So we had yet another debate about her teeth. The dentist feels it has to be a joint decision (which I'm glad about, but it would obviously be easier if it wasn't MY decision in any way!) so we're going to leave things for now and have her seen again in another few weeks ... unless she decides not to wait that long! I just can't bring myself to remove them at the moment when - gut pain aside - she's eating so much better because she can actually chew most things now with them, and I really don't want her going backwards. Each time she has teeth, she learns to use them (which sounds really obvious, but it is a major thing for her ... she keeps learning to use teeth then has them removed and learns to use her gums alone ... then we start all over again!) ... and we go through the gagging/choking cycle again, because she's used to just shoving stuff in her mouth and leaving it up to the teeth to sort out - like she should be able to.

I am not as bothered by her chewing the insides of her cheeks as I am about her chewing her tongue ... that's not to say I'm NOT bothered by it! I just have to balance everything up - constantly! If this can be passed over as yet another "accident" .. or she's chewing them again because she's biting down due to the gut pain ... then I have to try to save them, because overall she's better with them. If she's going to continue to destroy the inside of her mouth with them, then the ulcerated areas will become infected and that will change. But the decision is harder to just say "get them out" when it's gradual like this. If I discover her - AT ANY POINT - chewing her tongue, then they shall be removed as soon as is absolutely possible! As awful as it sounds, it's easier to make such a drastic decision when the potential damage is just as drastic!

None of this is fair! :-(

I also caught up with the neurologist, but sadly the anaesthetist was held up in theatre (although it's his busiest day and I knew there was the possibility that would happen!) and we had a bit of a chat about what's going on with her gut pain. Thankfully (for once!) Alyssa actually demonstrated fairly well the level of pain she's in ... instead of just "dealing" with it like she usually does on hospital outings! Why do they do that?!?!

We discussed a procedure which would hopefully help Alyssa's pain on passing bowel movements and I shall discuss it in more detail once the anaesthetist manages to call me (he's off on a wednesday, so I'm guessing it will be Thursday now before we chat). It will require another GA but there's the possibility of that with her teeth anyway, and it's hardly anything really that new to us. She's had more of them in her 2 1/2 years than most people have had in a lifetime! It doesn't sound particularly pleasant ... but anything is better than 2 1/2 years of chronic excruciating pain. It would be so nice to think she could be knocked out in pain, and wake up feeling none for the first time (after recovery time, obviously) .... but I'm also thinking that it seems too good to be true after all this time. However, if it even made life a bit more bearable for us then it's definitely worth it. And - if the teeth need to come out - at least they could both be done at the same time, so one less GA.

Will know more after speaking to the anaesthetist .... and will update. Thank you to all of you who continue to read! x x x

Been a bit AWOL lately ....

but have just been so busy, trying to organise some fundraising options. People have been really lovely and have donated lots of stuff for me to sell at a car boot sale, and I've been listing other stuff on ebay. It's pretty time-consuming but easier than having to travel about finding car boot sales - particularly with bigger stuff that sells better on ebay! Had a lot of Alyssa's baby stuff which was practically brand new (because she was constantly in and out of hospital and rarely used any of it!) so that is selling pretty successfully, and finished listing the main items last night .... well, very early this morning if I'm honest!

I have various collection/donation tubs dotted about here and there and would have more, but have run out! So am waiting to collect some more. The problem I have is that with all being different shapes and sizes, I have to keep recreating a poster that will fit on them ... and some are fairly hard to customise posters onto! Especially with all the information I need on them (being that it's so rare and people ALWAYS immediately think that "no pain" is a good thing!!! It's only once you start describing the biting injuries, the self-mutilation and (for most parents of children with Pain Insensitivity) the fractures that went un-noticed until found by accident, or only because the child couldn't use the limb affected!

Have also been a bit missing in action because Alyssa has been in a lot of pain with her guts again recently, and it's been increasing daily it seems like! Have been very confused because there's been nothing to link that to which is worrying, in case there's "something new" going on - insted of the "usual" gut pain! Even though we don't know what causes the usual gut pain, it's been suddenly so much more severe and with no change in medications that it's just thrown me a bit! But after resorting to going back to basics this morning and using baby massage, managed to help her pass a fairly big motion (sorry if TMI but is really unavoidable with Alyssa, because she's always got gut pain which is always much worse when she needs to go!) so she's been a bit happier since that. Hoping she'll settle down a bit again now, and maybe even go a bit more regularly with any luck. Also put the TSE intensity up slightly, in hopes that it was perhaps not having the same effect on her and she was adjusting to it .... but not sure that it made any difference. She's only been happier since the massage session this morning.

Also discovered (today!) that the inside of her left cheek is extremely ulcerated now :-( so - depending on what the dentists think next week - we could be about to undergo yet another GA and dental extractions. The inner right cheek has a very small ulcerated patch, but this looks to be just starting - insted of healing. Have just phoned the dentists and have an urgent appointment for reassessment on Tuesday ... so will be interested to see what they have to say this time. Will post here what is happening!

Plans for this weekend are to go to a car boot sale (fairly far away from us, because the one we used last weekend "to get a feel for it" was extremely disappointing and even the stuff being sold was shocking). Since been told that it's gone downhill since being moved from it's original placement, and hoping the one this weekend will be better. Assuming it is, then the plan will be to get all the stuff I have at the moment priced throughout the week and take it for our first car boot sale the following weekend. Watch this space!

Thanks to all of you who continue to read this, and also to those of you who have either donated goods or accepted collection tubs! Alyssa says "ta" as well! ;-)

Today's visit to the hospital ...

was pretty good actually. Alyssa had Nerve Conduction Studies (NCS) done today because of the drug she's been trialling (can pretty much say now that it's Thalidomide, which is a drug that most people are shocked over ... but has amazing results when used correctly). It can cause a type of peripheral neuropathy and - because we already wonder if Alyssa has this anyway - we're not sure how we'd know in Alyssa. The usual symptoms are "intense burning pain" ... which Alyssa may or may not feel so the NCS studies the electrical signals that the nerves are giving and receiving. Unsurprisingly (and positively) her results today were normal, and despite me thinking that we were abandoning the Thalidomide trial today because after 6 weeks on it, it's still not helping - the neuro still wants to give it a chance. So, we're sticking with it for the time being and she'll have the NCS repeated in 2-3 months.

As per usual, he was delighted with Alyssa's progress since we last met and asked how I felt the TSE was doing. I advised him that I am pretty sure it's making a big difference. She's eating better, complaining about a "sore tum/bum" far less and doesn't have the constant "frown" she was beginning to wear all the time. She IS being a typical 2 year old now so some of that was hard to distinguish between what was her just being "normal" and what was her being miserable due to her condition. Alyssa is still complaining for quite a long time about going to the loo, and still having problems actually passing motions but she's relatively happy the rest of the time - which is still an improvement. Will ask the anaesthetist next time I have contact if we can attempt to reduce the Gabapentin again and see if she really is coping better now with the TSE ... and hopefully get her off the Gabapentin altogether.

Saw the dentist; who was very pleased to discover that Alyssa has not bitten herself or caused oral damage recently, and who is now very hopeful that Alyssa is now old enough to be a bit more aware of what she's doing ... so possibly may get to keep the molars after all. Told her that Alyssa has literally just started chewing her hands - in the usual places - but that she does stop if told to (and as she is wearing arm restraints overnight to stop her tearing her skin off, she is also unable to bite her fingers/hands then either, which is when she used to do it!). So we'll see, and hope that the worst of the biting is over and that she may get to keep these teeth. She is eating so much better now that she can just chew easily with them, compared to tiring herself out "gumming" everything hard. They have suggested going back to see them again in 3 months ... but sooner if nec, as usual.

Saw the dermatologist. Discussed that neither the Phenergan nor the Sinepin (the two newest drugs introduced to try and sedate her but also reduce the itching) did not seem to be having much if any effect on her. The derm has suggested trialling two different types of cream - not really designed for Alyssa's problems, but which may work in a roundabout way. Something else worth trying is always a good thing!

All in all, a good hospital day! Will have to wait a few days for one of the creams, and a couple of weeks for the other one but will post as I learn if/how well they help.

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 ...

Back again ...

The hospital stay:

Ok, so home from the hospital again. Turns out the anaesthetist originally said 3-5 days because he thought the neuro would want to do some tests while Alyssa was in as well ... then discovered he (the neuro) only wanted to repeat the histamine flare skin challenge. So Alyssa only had to be in for the one night, and that was actually to teach me how to give her the medication ... and keep everyone else safe. The drug is potentially dangerous if not used safely, so we all need to know that it's being given and stored correctly.

The anaesthetist said that any improvement in the itching would be subtle, and it would be a few days before it would start to show so haven't really been too worried about noticing or not noticing a reduction in the itching. We discussed the potential severe side effects - which also will not be showing for about a couple of weeks on it - and what that means for Alyssa. It's most major side effect is that it can cause peripheral neuropathy (nerve damage in the extremities etc) and - to most people - this is felt as an "intense burning pain" or tingling/pins and needles sensation. As to how we'll know if Alyssa is feeling this will most likely depend on the the neuro repeating the nerve conduction studies, and then we'll take things from the results of those! As per usual, she cannot bear to do anything "normal" for us!

The dermatologist came up to see Alyssa while she was in the ward, and prescribed a new dressing for Alyssa's arm. One which will absorb the excess fluid a bit better than the dressings she's wearing currently. She was - as usual - disappointed to see the state of Alyssa's neck, although glad to hear that the chest wounds have now finally healed and that I am now only dealing with the "reduction of scar tissue" in that area.

The dentist also came up to examine the damage to Alyssa's mouth, because I requested an assessment for their records. The dentist we usually see (who is used to the damage and doesn't get shocked easily) wasn't available, so we saw another dentist. He had perhaps read Alyssa's notes but was still stunned when I explained about her condition, and the fact that the ulceration inside her cheek now is not much bigger than when I phoned last week ... but is very deep. He had a look in her mouth (bless, she's now showing off her "big mouth" when asked!) and was horrified. I told him that it still was not bleeding that much yet, and really just wanted him to note down what it currently looks like for when we see the other dentist again on the 14th. He thinks it is not necessary to remove her teeth at this particular moment but he said that he also felt that she was going to need them removed fairly soon!

How she is now:

Well; it's a bit too early to tell how it's affecting the itching, because it's also sedating her a bit, so she's a little bit sleepier than normal. This affects her itching as well as everything else. She definitely isn't scratching as much - but we won't know if this is actually a result of the drug or the sedation until she's showing no signs of sedation (or much less, she may always be a bit drowsier on it).

HOWEVER .... since THE FIRST DOSE, I've noticed a huge improvement in her mood! Lately, she has just been frowning, irritable, and having a complete emotional meltdown over absolutely everything (and usually something trivial!) which usually ends up in her screaming her head off. It has been exhausting - for both of us, but - although she has always been very sensitive and emotional, I wasn't sure if she was just getting worse because she was doing the "terrible twos" thing. Since the very first tablet she took as part of this trial she has been so much happier, and more contented than I can remember her being in a very long time. I have my sweet, happy and playful baby girl back ... one who laughs and doesn't get upset constantly over nothing!!! I am now having to hope that - as with the stuff posted above - this is not yet another "temporary" effect and that it will stay. I can't actually put into words what it means to see her like this again ... and am dreading it wearing off. Fingers (and everything else!) crossed!!!

Update ...

Ok, so been off the radar for a bit. Just too much Alyssa-related stuff going on and trying to pack what I thought she might need for the weekend away - in view of the fact I had no idea how much/little she might chew her own mouth and bleed. Weekend was nice, although they were having a heatwave so it was too hot for her there and she was miserable a lot of the time. She sweats excessively in the heat so most of the time her clothes were soaked through, and at one point you could actually ring the water out from her vest!

Unfortunately, it's a bit of a catch 22 because she has to wear a layer of special material which clings to her body and puts pressure on her skin. This helps to reduce the itching sensation she feels .... but makes her overheat! Which in turn makes her sweat more. But if she goes without it, "normal" clothes make her tear at herself constantly and then she removes entire sections of skin. So it's a lesser of two evils! Here's hoping the drug trial is about to change all that, and she could be allowed the luxury of wearing clothes that every other little girl does. Of course, it won't help her "temperature sensation" issues, where she over-reacts to cold items coming into contact with her - and more recently - hot (warm!) sensations. Things like baths, baby wipes, rain, washing her hands, walking on any floor other than carpet with no socks on, getting in her car seat ... all are a major drama due to her excessive distress brought on by having to touch (with any part of her body, with her hands to a lesser degree) and she will have a complete meltdown if she has no choice.

But any improvement in her day-to-day life will be a welcome achievement! She could do with having a bit of an easier time of it ... as could I! It was suggested to me recently by the mum of another child with pain insensitivity (she has HSAN V) that I buy a baby video monitor - which is basically a baby monitor with a video screen, so you can watch your baby as well as hear them. I debated on that for a bit because when she is in her cot, is the only time I get to myself and get things done which need doing ... or SLEEP! And I worried that if I can see her scratching/tearing herself, instead of just assuming she was already asleep, that I would get even less sleep than I do now. But after she managed to get her arm dressing off while having a nap at her dads' house (so clearly, she was awake but not alerting him to it) I decided to just go ahead and see if it helps. It also has 2 way talkback, so I can see her attacking herself and just press a button and tell her to stop it. I won't have to actually go in to her room and disturb her, just remind her she's not to do it! Fingers crossed.

Last night was awful! :-( We were up almost all night, because her tummy was sore due to constipation again. She is drinking loads at the moment, but also sweating excessively so some will be lost through that - but it's also really warm for our area and she just can't tolerate hotter environments well. So spent most of it either just giving her cuddles which she wanted, or going in to give her water and trying not to freak out over how much blood there was on her mitts, running down her neck and all over her sheet! *sigh* Couldn't use the new video monitor last night as it had to be charged for 12-16 hours first! Hoping that tonight will be better ... and that once we're home from the hospital, perhaps she'll not be scratching as much ....!?!

Am not really getting my hopes up for this to be honest - we've been through so many drug trials which have all failed to have the desired result, or have actually made her other problems worse! So I can't afford to let myself get to the point where I think this is the one that's going to work, it's just too devastating when it isn't! I tend to sit more on the sidelines of "this would be fabulous if it worked but let's not just assume it's going to" ... because it's a way of stopping myself getting too depressed if it doesn't work. If it does, excellent!! Fingers AND toes crossed!

Ok, will be off the radar again for a bit from tomorrow. Still not completely sure what tomorrow will bring. The anaesthetist is only expecting us to be there until Friday teatime but I'm a tad more skeptical than that. But again, brilliant if she adjusts well to it and we can get home then! Will keep you all posted on our progress!

x x x x

Today ...

Picked Alyssa up from her dad's house this morning to find her arm was all swollen, and seeping large amounts of serous fluid. Redressed it and took her to the family centre so she could play, because we've missed the last 2 weeks due to her being ill ... and phoned the hospital from there to see if Alyssa's arm could be assessed. Was told to take her up this afternoon when we were ready.

While at the family centre; the girls looking after Alyssa and the other children, got lunch ready and offered her scampi and chips. She did really well and took a few bites of scampi ... and then I realised that her mouth was bleeding. After a quick check to make sure she hadn't stabbed the inside of her mouth with her fork (she does that occasionally, because she jabs it in and doesn't feel it hitting the back of her mouth!) .. realised it was - unsurprisingly - her teeth chewing the inside of her cheek. She'd chewed her inner cheek surface by accident, while chewing the scampi. Had yet another feeling of deja vu, and got her ready to go home. Phoned and left a message for the dentist at the paediatric hospital and put Alyssa down for a much-needed nap. Being at the family centre and playing (or anywhere and playing) exhausts her very quickly and she needs to sleep for 3 hours most afternoons.

Dentist phoned and we debated the options - bearing in mind that we have LITERALLY just booked a long weekend to Blackpool (because things were going relatively well ... and we left it as last-minute as possible!) so we leave first thing Friday morning and I'm so scared she'll start biting her tongue once we get down there, and are in a hospital where no-one knows Alyssa, or her history! AND that Alyssa is going in to the paediatric hospital next week!!! After a lot of deliberating and the dentist going off to check with the dental consultant, we had to just agree to leave the situation still as a "gauge each day" scenario and take it as it comes. We shall hope (yet again!) that this was "another accident" caused by her chewing on her dinner and she suggested that I just offer Alyssa softer food from now until we come back on Monday. You'd think something like Friday to Monday would be the easiest thing in the world to achieve ... but not in the world of Alyssa! Obviously, if there is any worse damage overnight tonight or first thing in the morning, then I've just to starve her and phone them back - and she'll go in for an emergency GA tomorrow ... but the dentist herself won't be there, and I'd prefer her to be there for it as she's been present for all but the emergency incisor removal and tongue repair.

Got Alyssa up from her nap to discover - to my horror - that she hadn't slept as long as she should have (we were at mums' and not in her own bed) and she'd been at her arm again!! Took her downstairs where my mum and sister were shocked to see the amount of blood running down her arm. The swelling had gone down, because of the amount of fluid she'd drained from it while scratching at it. Cleaned her up and set off for the childrens ward. Spent the afternoon having her arm assessed by one of the nurses. We did wait for a doctor for a while, but the nurse ended up deciding that her arm needed to be dressed and that we couldn't wait any longer for the doctors to be free. She was really worried about Alyssa's - extensively burned - arm being exposed for the length of time we'd already waited, and didn't want it to become infected. So she dressed it as she would a "scalding injury" (which is essentially what it is - except it's been burned by friction, instead of boiling water) and put a lot of bandaging over it to absorb the exudate leaking from it. She also gave me lots of supplies and advice on changing it, as well as "adapting" a pair of eczema tights into a full arm covering, to try and keep Alyssa away from either end of the bandaged section.

Please keep everything crossed for me, that Alyssa will not chew or cause any more damage between now and Monday!!! If we can make it until then, it will be pretty easy to organise another GA if nec, and I will just see if she can be admitted a day or two early for the impending drug trial!

I am absolutely exhausted today. Think it's probably the last few days of constant wounds, worrying about her teeth coming through and today just having both at once! This would be one of the days when I just feel completely drained! :-( Hopefully, I'll be back to my normal "can cope with this" self soon, I'll need it for next week!

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!

Update after seeing the dentist today ...

Hi guys,

Am feeling much more relaxed now that the dentist and I have discussed the current situation, and agreed that we are "on the same page" so to speak. She has seen Alyssa many times thankfully; so is no stranger to our dental mishaps with her, and we discussed the other things I'd thought about - such as leaving one molar (either one top or one bottom) on either side and hoping that if she didn't have two at each side that she wouldn't lacerate her inner cheeks, trying to file them under GA again but that it would still be a GA and my tendency to just want them removed if she has to have a GA - considering she's already had 7 in the past 2 years ! - rather than attempt to file them, then find out a few weeks later that it didn't work ... and have to GA her again! She also said that she has been hoping that these ones could be saved, because of how far back they are and hopefully less likely to cause damage.

I agreed that I was also hoping to save them if it is at all possible (possible being no damage caused to her tongue, which has already had emergency repair!) but mentioned that we had also had this thought with the premolars. We left one at the time of tongue repair .. and then had to have her brought back in for GA about 3 weeks later as soon as the others erupted, because she almost chewed the side of her tongue off in 2 days! However; those were slightly further forward, and there is still the hope that she can manage to let these ones come in and not cause any further trauma ...

So ... the plan (I always use that term very loosely with Alyssa) now is to monitor things for the next 3-4 weeks until she goes in for the drug trial which is planned and take things from there once she's in. If she holds out until then, the dentist will come to the ward and we'll reassess for signs of damage and then create another "plan." If she starts biting herself before then, she'll be taken in immediately and have the molars removed as another emergency procedure. All in all, I'm pretty happy with that, considering. I just needed to know that "having them removed" is an option - IF it becomes necessary. Now I just have to try and hope that it's not.

Thank you all for reading our daily saga ... it means a lot! And remember - feel free to post any comments or suggestions to anything I've written. I want your thoughts and ideas, even if I've had them suggested before. It's the only way that everyone else will know the answers too! :-)

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!!