Welcome to Alyssa's blog ...

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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

Self-injuries to date:

The following will give you some idea of what Alyssa has already done to herself ... so far!

* Knocked a few of her own teeth out while "teething" and caused huge ulcerated sores in her mouth, from "rubbing" her teeth on her tongue and inner cheeks

* Bitten straight through her lower lip - didn't even flinch!

* Chewed the end of her tongue off, resulting in emergency repair and incisor removal. After having the tip of her tongue repaired, she then began chewing the side of her tongue as soon as her molars erupted

* Chewed a finger almost down to the bone

* Torn entire patches of skin off, and is scarred fairly extensively as a result! :-(

* Broken both feet - and I had to argue with doctors for almost 10 weeks with one of them, because they didn't believe it was broken! Even a lot of doctors haven't heard of Pain Insensitivity!

* Broken her left leg, just under the knee, and walked about on it quite happily for at least a couple of days. We'll never know how she broke it. Any time she says "my --- is moving, all by itself," we get x-rays done!

* She had to have all of her baby teeth removed, as and when they came in, due to all the biting injuries.
She is still dealing with the after-effects of that, as a teen.

* Required spinal surgery to correct a vertebral slippage issue, which she was completely unaware of. The op itself was pretty straightforward. The post-op period was lengthy, and anything but fun.

* Developed septicaemia from one of her many episodes of cellulitis because nobody realised it hadn't gone away, and was just grumbling away as an abscess in her elbow. When she collapsed, it was scary!

* Managed to dislocate her left hip, falling from her trike .... but it took us 4 months to realise, because she didn't feel it!

* Had corrective surgery performed on both hips. Unfortunate complications ensued, which eventually caused the entire removal of her Right hip, and part of her femur.

Tuesday, 28 July 2009

A week's gone past already ...!

Wow, it's been a week since I've been able to update! Can't believe that's passed so quickly, it's been yet another intense week!

So ... the plan to use something simple like peppermint water turned out to be extremely difficult to achieve! The peppermint water originally came in a made-up amount and as a concentrate but is now only available as a concentrate - by private prescription! Due to a tragic incident involving an infant dispensed the incorrect dosage of peppermint water, pharmacists are now not meant to make it up themselves - but to order an exact amount and strength from the suppliers. Which meant I had to run about trying to get someone to do a private prescription for me AND find me a dosage. Long story short (with lots of people involved!), I did eventually manage that last week, but as yet still do not have the actual peppermint water. I will receive a phone call from the pharmacy once it has been delivered. So much for something easy!

For the first time ever was able to leave Alyssa for a couple of hours at the family centre she goes to once a week. She paints, has stories read, plays with other children and (eventually) will go for outings with the wonderful girls who work there. She really enjoys it, although misses out a lot of the time due to her physical issues or her neverending appointments. Usually I have to stay as well because she gets so upset at me attempting to leave (so I go there, and sit in the foyer for the entire time ... and they bring her out every 10 mins to "show I'm still there") ;-) This week; she had a really sore tummy before we left so I expected her to be even worse than usual, but once we were there - and she realised her usual carer was back from sick leave - she was perfectly happy and in her element. I even L.E.F.T the building, did some shopping and came back!!! MAJOR PROGRESS!!! :-)

We also had a scheduled meeting to discuss Alyssa's placement there, and the frequency of her sessions. They initially offered her a wednesday morning slot because she is so unusual, they wanted to make sure they could provide undivided attention to her while they got to know her needs, and to allow her a "settling in" period. They feel they now know her well enough to be able to respond to the rest of her needs in a longer session, and hope that if offered 3 sessions per week that she'll make at least one a week. So - starting this week - she'll be going for 3 mornings a week, dependant on her health and her constantly changing medical commitments. Which will be good for us both ... if somewhat strange for me to get my head round! Not sure what I'll do with myself on these mornings!!!

Alyssa's exceptional paediatrician has been off doing her own research (again!) and - bizarrely, just as I was looking into it - came up with the suggestion of TENS (Transcutaneous Electrical Nerve Stimulation as something to look into with Alyssa. The anaesthetist advised us that TENS itself would not really be helpful for Alyssa because it works on the skin surface and causes a great deal of sensation, preventing the potential to apply much power. It works on a single nerve and is designed to be placed between "the pain and the brain" which would require putting the electrode on the back of Alyssa's neck ... which we already know she will not tolerate! She has refused to allow the application of any dressings etc to that area for more than a few minutes so it really wasn't an option. Plus,;we don't know what sensation she would feel from it and I wouldn't want to put something on that she may perceive as painful, irritant or anything else that may add to her misery.

However; he says that TSE (Transcutaneous Spinal Electroanalgesia) is something that could potentially be very helpful for her. It has been used with up to 80% effectiveness in patitents with chronic gut pain, and is used for a variety of pain types. It is effectively high-powered TENS but works slightly differently. It uses very high frequency electrical stimulation and at very rapid speeds, which allow for a much deeper penetration ... and - because of the frequency and speed - very little sensation (if any) is felt by the patient, allowing for much more power to be applied. TSE uses a single pair of electrodes, placed at either end of the spinal column and is very good for larger areas of pain, unlike TENS which is better for localised pain. TSE is estimated to be 10x the power of TENS and because the electrodes are placed over the spinal area, they intercept all types of pain signals from one singular place. The anaesthetist says it must be used religiously every 12 hours if we are to expect improvement in her, so I shall be starting it tonight. I have specific instructions regarding signal strength, length of time to be applied etc, so it will be interesting to see if any difference in her is noted.

After reading the online medical section, I noted that the majority of patients also had an increase in mood which is interesting. It is hard to know if that is due to them finally having some relief from their chronic pain (which would obviously make one feel better, and in a better mood!) or if the signals being sent to their nerves have some effect. Either way, I am hopeful that this will also happen in Alyssa - she deserves to be happy with all she suffers! The anaesthetist wants me to let him know how things are going, and says it should give Alyssa some relief from the gut pain .... and - with a bit of a miracle - it may help the itching as well.

I'll let you know ...! :-)

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