The drug trial was not successful! :-( We started it on the 28th June and she was given one dosage twice daily - while watching for the extremely dangerous side effects of the condition known as Stevens Johnsons Syndrome (SJS) - and proceeded to trial it for the next couple of weeks. I asked the pain specialist just after starting it, how long it should take to work if it was going to and he replied that I should start to see some improvement by the Sunday of that week ... and definitely by 10 days. That if we got to 10 days and there was no noticeable improvement then he would possibly put the dosage up slightly (although he felt that it was probably the right dosage for her) but that we would probably just stop it. I have to admit now that I spent more time watching and looking for signs of a reaction (being completely paranoid!) than I did watching to see if her pain lessened when she had a bowel movement. The Sunday came and went with no improvement whatsoever ... and then so did the 10 day point.
We agreed that as there was no improvement at all that there was no point keeping her on a drug which - if not helping - could only be doing harm, and the decision was made to wean her back off it. I was sad but not particularly surprised to learn that it hadn't helped her. Her nerves just do not function the way they are meant to, unfortunately. And we discussed what the "next steps" would be, which we've only vaguely talked about previously. Basically; we are running out of drugs which could/would potentially help Alyssa, and are now having to start look at things like injections (of something like local anaesthetic or botox) into her bottom area, to see if this will block the nerve pain she is experiencing in this area. However; because her nerves don't work like everyone elses' this also causes concerns for the medical team, because they are not sure what else injections like these might do to her.
It's a bit worrying for them to try and remove pain ... from a child who doesn't feel any! :-S
Good news we've had this month is that Alyssa's bed has arrived!
And - despite there being some technical issues with the design of it (because the opening end is not quite what we wanted, but this is being dealt with) - Alyssa LOVES it! She calls it her "bouncy castle bed" :-D because it's made of the vinyl-covered foam that's in the soft play centres, so looks to her like a bouncy castle. It's been made with two different shades of pink (her favourite colour) and has a little window for her to see out ... and us to see in! She especially loves the window!
Alyssa is also having an MRI this week - to rule out any other potential diagnoses, such as a spinal or disc injury, or spinal lesion - so she'll be having another GA. We're fairly sure that it will turn out to be normal, but it may just show another reason why she's suffering this nerve pain. And at least - one way or another - we'll know what's going on with her lower spinal area. I'm a bit nervous about it, but she's had many GA's and always been fine so see no reason why this one will be any different. We have another couple of fundraising events coming up in the next few months, so will be posting about those shortly, but will obviously update after the MRI once I know what the results of that are. I don't think we will get immediate results, but should get them once her paediatrician has her.
Thank you to everyone who continues to support us, and sends their love in Alyssa's direction! xx
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
4 comments:
Hello from Duane in Oz,
I can understand your frustration and anguish you are going through, our son Troy was diagnosed with Congential Sensory Neuropathy when he was a very small child, he also "ate" his tongue as an infant and unfortunately before the Dr's could get the infection under control he bit off and swallowed the end whilst in hospital, the dental team made mouth-guards for him so he could not apply full pressure with his teeth to his tongue, Troy also had to wear a helmet as an infant to stop injuries to his head, he would burn himself on heaters in the winter if given a chance, he would also eat the insides of his thumbs so we had to splint his arms to stop him. He has broken a number of bones without knowing there was anything wrong and it was only through careful observation that we would pick up on an injury. Troy is now 21 years old with his full mental capacity,he has very badly deformed knees, one in particular and other joints that his specialist has said you would only find in elderly persons. Thankfully the absence of pain in that regard is a form of blessing as he would suffer greatly from arthritics.
We just took one day at a time and eventually when you can effectively communicate with the child you can explain what an unusual and special person they are and how best to help them by working together.
Troy now takes fish oil and osteo-eze tablets on a daily basis and we work together with openness and honesty about activities he will perhaps want to undertake, (eg skirmish, that was a NO) and current injuries he has.
My wife and I wish you all the best in your future endeavors with Alyssa, I would be interested in the facebook page you have mentioned, any info you can give me would be appreciated.
Duane and Coralie Ramsden
Hi Duane!
I have found that I am unable to contact people directly when they comment on this page (I originally thought I would be able to send a message privately, but this seems not to be the case).
Please e-mail me directly to either mo2_cairns@hotmail.com or to understandingalyssa@hotmail.co.uk so I may give you the information you are looking for. We have approximately 49 members now (some active, some inactive) but all with varying types of cause behind their pain insensitivity. And a few from Oz, one who is learning more from the group about his own problem than he has in his life. We would love to have your experiences and opinions too.
I hope you are notified of this message, and look forward to hearing from you in due course
Moira xx
I am sorry to hear the drug trial didn't help. I can't imagine what a unique situation you are in, trying to find an answer. I hope this next procedure brings something to light that can help!
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