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!
Welcome to Alyssa's blog ...
- Alyssa's Mum
- My name is Moira, and I hope to share with you what my daughter's life has been like so far ... so you can all truly understand and appreciate the gift of pain, which we take very much for granted! Alyssa does not feel "peripheral" pain, which means she does not feel pain anywhere other than internally. This has led to many unintentional injuries and self-mutilation. My aim is to not only find others like Alyssa, and help those who may be going through what we are, as well as raising awareness about this condition, and how feeling pain is actually a GOOD thing! I am thankfully now part of a support group run on FB which is an amazing group of people, who all have varying types of experience with pain insensitivity. I can be contacted directly via understandingalyssa@hotmail.co.uk
Showing posts with label itching. Show all posts
Showing posts with label itching. Show all posts
Sunday, 6 September 2009
Sunday, 2 August 2009
How things are going ...
Well, it's been a fairly good week (and not sure when I could last write that!) so am leaning towards thinking that perhaps the TSE is helping ... but not yet ready to say it definitely is. Don't get me wrong, she's still been cranky and telling me her tummy hurts, but not screaming in pain and definitely not crying so much that I've been frustratedly trying to get hold of the anaesthetist. So all in all, that's pretty positive! It can take up to two weeks to see the full benefit so I'll reserve full judgement until we've gotten to that point, but am pretty optimistic about her gut pain and the TSE.
The itching however, has not changed in the slightest and I am having to remind Alyssa constantly not to scratch. At times she actually seems unable to stop when I tell her to, which is not usual but at least when she is at her daycare placement, they are able to distract her easily.
She's had the first week where she was there for two mornings (the third was spent at the hospital getting the TSE machine) and she had a great time. She's eating better since starting there - the other kids eating at the same time definitely helps - and she's apparently a "good influence" on the other children. Lol! She's always tidying up the toys (not that I'm a neat freak or anything!) and they copy her, and she really loves jigsaws, books and puzzles ... which is rubbing off on the others too - creating a much more peaceful playtime! Which is nice to hear, and also that - although she asks for me every so often - she is easily distracted and isn't getting too upset now that I'm not there with her. When I left her the first time last week, her little face just looked heartbroken. She saw me and mum leaving ... and kept pointing to herself to go too, as if she didn't understand why she wasn't leaving as well! Poor girl, but she had fun after that, and was much better on Friday. Didn't want to come home once I returned to collect her! Well, not until she realised I was leaving again!
Saw her paediatrician again this week for a general review, and it went pretty well. We discussed her various medications and the TSE, and what I think is/isn't making a difference. Alyssa was pretty pale again (I'd noticed that again a few days previously, she was the same when she first started this drug trial although it cleared up after she adjusted) and after checking the insides of Alyssa's eyes, her paediatrician decided that they were pale too so it was best to just check her bloods. Things had run late that day, so we all decided it was easier to reschedule for the bloods to be taken, and should get notice of that shortly. She has previously had periods of being really pale, yet not anaemic so we're not that worried ... and she's still doing everything she was doing when she wasn't pale - no change or any other symptoms, so it's probably nothing. But best to check anyway.
Think that's all for now - told you, it has been a pretty good week!
Oh! I took her to "the shows" one evening this week, and she absolutely loved it - had a total blast! Charmed everyone (as per usual), to the point where she was getting free rides, lol! Then she gave the poor ride owner a heart attack as she watched him bolt the little car door from the outside .... and immediately opened it once the ride had started!!! I'm busy shouting at her to leave it alone, and the poor guy was rushing over to close it again! Hee, it's meant to be a safety bolt to stop kids just opening the door! And after him giving her a ride for free too! Poor bloke! He just looked at me in complete amazement and said "She's really bright, isn't she!?" and asked how old she was. I said "2 1/2 ... going on 90!" :-)
But it was SO nice to actually see her getting to do things like a "normal" child, and giggling her little head off. I just don't get to see that enough ... and can't wait to take her back again. She heard the ice cream van playing it's tune the following day and kept saying "shows, shows" ... Bless!
The itching however, has not changed in the slightest and I am having to remind Alyssa constantly not to scratch. At times she actually seems unable to stop when I tell her to, which is not usual but at least when she is at her daycare placement, they are able to distract her easily.
She's had the first week where she was there for two mornings (the third was spent at the hospital getting the TSE machine) and she had a great time. She's eating better since starting there - the other kids eating at the same time definitely helps - and she's apparently a "good influence" on the other children. Lol! She's always tidying up the toys (not that I'm a neat freak or anything!) and they copy her, and she really loves jigsaws, books and puzzles ... which is rubbing off on the others too - creating a much more peaceful playtime! Which is nice to hear, and also that - although she asks for me every so often - she is easily distracted and isn't getting too upset now that I'm not there with her. When I left her the first time last week, her little face just looked heartbroken. She saw me and mum leaving ... and kept pointing to herself to go too, as if she didn't understand why she wasn't leaving as well! Poor girl, but she had fun after that, and was much better on Friday. Didn't want to come home once I returned to collect her! Well, not until she realised I was leaving again!
Saw her paediatrician again this week for a general review, and it went pretty well. We discussed her various medications and the TSE, and what I think is/isn't making a difference. Alyssa was pretty pale again (I'd noticed that again a few days previously, she was the same when she first started this drug trial although it cleared up after she adjusted) and after checking the insides of Alyssa's eyes, her paediatrician decided that they were pale too so it was best to just check her bloods. Things had run late that day, so we all decided it was easier to reschedule for the bloods to be taken, and should get notice of that shortly. She has previously had periods of being really pale, yet not anaemic so we're not that worried ... and she's still doing everything she was doing when she wasn't pale - no change or any other symptoms, so it's probably nothing. But best to check anyway.
Think that's all for now - told you, it has been a pretty good week!
Oh! I took her to "the shows" one evening this week, and she absolutely loved it - had a total blast! Charmed everyone (as per usual), to the point where she was getting free rides, lol! Then she gave the poor ride owner a heart attack as she watched him bolt the little car door from the outside .... and immediately opened it once the ride had started!!! I'm busy shouting at her to leave it alone, and the poor guy was rushing over to close it again! Hee, it's meant to be a safety bolt to stop kids just opening the door! And after him giving her a ride for free too! Poor bloke! He just looked at me in complete amazement and said "She's really bright, isn't she!?" and asked how old she was. I said "2 1/2 ... going on 90!" :-)
But it was SO nice to actually see her getting to do things like a "normal" child, and giggling her little head off. I just don't get to see that enough ... and can't wait to take her back again. She heard the ice cream van playing it's tune the following day and kept saying "shows, shows" ... Bless!
Monday, 13 July 2009
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
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
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