So .... it's back to the drawing board in some ways!

It's looking - once again - like Alyssa is suffering from a condition called Paroxysmal Extreme Pain Disorder or PEPD for short. This basically means that sufferers get intense and excruciating pain at times, mostly related to bowel movements. Some sufferers - presumably those without an already existing Pain Insensitivity or Indifference like Alyssa - also get pain around the jaw or eyes, and flush in these areas before the pain begins. Alyssa has never really suffered either of these problems because her peripheral pain response is abnormal, and she only reacts to "cold" in her eyes ... she does not react to stimuli which the rest of us would find painful.

Today would be a prime example of that, because she was playing with flower pots and potting soil and using the trowel to scoop soil from them. She flipped it up at one point and ended up with soil all over her face ... including IN her eyes! She just seemed a bit surprised that she had dirt all over her face, didn't even notice that her eyes were full of dirt. Her gran and aunt were also there and we at first thought she couldn't have much in her eyes, but I wanted to check anyway because I'm aware of the possibility of her getting something in her eyes and it causing damage - which could lead to her going blind. When I got her inside she was still pretty much unconcerned about her eyes and - just as I was about to get some baby wipes out to clean her up and check her eyes - she started trying to rub them! I freaked out because by this time I could see that underneath her lower lids, her eyes were FULL OF DIRT!!! She didn't care at all and was about to rub her eyes, and rub the dirt all across the surface of her eyes!

It took about 20 minutes to get all the dirt particles out of her eyes with the baby wipes (which she told me was "a bit itchy") but that to anyone else would have been excruciating! I no longer have to wonder if she really doesn't feel pain in her eyes, because I've seen it for myself today! :-(

Anyway, back to the "screaming" that's the current hellish situation we're in. Spoke to Alyssa's paediatrician as soon as she was back and - after doing some research - she felt that the neurologist was most likely right away back at the beginning, and that the most likely explanation for this sudden intense pain and collapse was due to Extreme Pain Disorder. She recommended that I immediately start Alyssa back on Gabapentin (an anticonvulsant) because it was the closest equivalent to the only known drug which helps ... but which Alyssa has already been trialled on, with horrendous results! She had some sort of reaction to it - still not sure if it was "allergic" or just that it fired up her nerves, but not in the way it was meant to because of her unusual nervous system - but whatever the reaction, it caused her to get so much hotter and itchier than normal that she burned (with friction from her clothes, mitts etc) all the skin off herself from chest to throat ... and wouldn't stop! By the time she was taken off the drug and she started to calm down, she looked like she'd been severely scalded by boiling water ... and she healed in exactly the same way, with scarring to her chest and neck! :-( So there was no way we were going to retrial it, and went with the Gabapentin while we looked into the other possibilities. Saw the neuro, who also said that either Gabapentin or another drug were the best options. Alyssa hadn't really been on it long enough to know if it was helping or not so we decided to continue it until I could see the pain specialist or consultant in anaesthetics this week.

Alyssa had already been on Gabapentin before and - barring a relatively short-lived "falling over" period when we first introduced it but which lessened as soon as we reduced it - we didn't have much in the way of side effects. She did have constipation issues, but she has those anyway and with all of the drugs she trials, they all seem to affect her digestive system. So I didn't expect any problems! O ..... M ..... G!!!!!

Not only was she falling over CONSTANTLY this time round (and on a lower dosage than previously!), her mood changed completely from a happy and well-behaved though somewhat "toddleresque" at times to the toddler from hell! She was argumentative, demanding, refusing completely to do anything asked of her and deliberately doing the opposite of anything she was told to do. Now that doesn't sound too bad does it? A normal toddler? NO! In the world of Alyssa, that included things like her smacking her head off the concrete floor repeatedly, because she'd been told not to! Or taking off at full speed when asked to come over, resulting in yet another fall or injury sustained from wall/door/object (take your pick!). The amount of injuries she's received in the last couple of weeks are just awful. The Gabapentin not only made her disorientated (more than normal) but it obviously tired her, but made her hyperactive at the same time so the more tired she got, the more determined she became. She literally could not sit still, and would fall even sitting in a chair! The first few days were absolutely horrific, with me LITERALLY following her about constantly because she was falling over so often and injuring herself. The family centre where she attends a few hours each morning have done more Incident Reports in the last week than they've done all year for her, as well as also pointing out her mood changes! (they jokingly threatened to exclude her for bad behaviour, though know it was down to the medication).

Those side effects have calmed somewhat thankfully but she is still falling over much more than before, and still walking into things and hurting herself constantly. The special padded room we're fundraising for would have been a godsend at the moment, but unfortunately isn't built yet. I could only truly relax when she was in her cot for those first few days and couldn't go anywhere or do anything to result in injury, but even now am having to be much more careful when she wants to go outside because she's still smacking her head on the ground when she goes down, and still hitting herself off doorways/walls outside too. She's fallen and left marks on herself at least ten times today, without exaggeration!

I was also concerned about the increased level of sweating Alyssa was doing as the gabapentin was increased (usually a precursor for her tearing herself open somewhere) and when I saw the pain specialist this week, I mentioned that I was concerned about increasing it more when she seemed to be getting more and more sweaty. I know she didn't do this last time round so wondered if the gabapentin could be interacting with another medication that she wasn't on at that time. The pain specialist said that the manufacturers of gabapentin say that it reacts with nothing ... but as to whether that's true, or just that it's undocumented is hard to say. The neuro only said to me last week that we should always try to check for potential interactions of all Alyssa's meds before we introduce another one ... BUT to also remember that very few people will be on all of the ones she is on, so there is very likely no information on them. And she is also on most of them for reasons other than those originally prescribed, so again the information will be limited if available at all!

Anyway; we're both a bit skeptical that it's doing anything so he initially wanted me to just stop it, but I'm hoping it's at least taking the edge off her pain. She initially seemed improved in that area, but it may just have been the sedatory effects for the first few days as is generally the case with Alyssa and most drugs which act on her CNS (central nervous system). The other option is to try the lesser used drug (ie less is known about it, other than it's good for rectal pain) but for this, she would need to be admitted to hospital because it's main side effect - if it's going to happen - is a rash. Not all people who get a rash have to come off it, but we're obviously wary with Alyssa's history. ALL rashes in Alyssa cause her to heat up; which then in turn make her become more itchy, and then the drug itself is not necessarily the cause of her skin eruptions .... but just the catalyst for her doing it herself! He said that when it works, it works brilliantly ... but we also have to remember that it could go horribly wrong (and after the last experiment, I shall always be wary of a drug that "may cause a rash"), but unfortunately he is away for a couple of weeks so she can't be started on it immediately. We agreed to keep Alyssa on the gabapentin for that period so we will at least know if it has helped or not, and then deal with the new drug and admission once he's back.

Since that time, I already know that the gabapentin is not helping because she is back to screaming and collapsing! When I picked her up from the family centre on Friday they said "she's only collapsed suddenly a couple of times" .... and it just makes me so frustrated that THAT kind of news is so typical of our lives. In Alyssa's life; THAT is actually good news, and that's just unfair! We've had a horrible day today - with many injuries as mentioned above - but also because each time she needed to go to the loo, she was screaming on and off for half an hour at a time, not always passing something each time! I'm surviving on minimal sleep because she's up through the nights with it too and again, can't always manage to poop until she's been straining or screaming for a while ... then I'm wide awake because she's been so upset that I'm upset ... and then I don't function as well when we do get up again, and still have to face the next day. I'm tired. Alyssa's tired. And none of it is fair!

I've decided that she cannot be left to just go on like this until the pain specialist returns from holiday, so I plan to phone her paediatrician tomorrow and see what other alternatives there are for the timebeing. She had offered me sedatives or different types of stronger painkillers, which are definitely worth trying until she can trial the other drug in a few weeks. They were not my first choice; I do not want my daughter sedated just because it is so difficult to help her, but I also cannot sit and watch her in agony. And for the shorter term, they are definitely a better alternative to that!

Seems a bit late to add in some good news, but maybe it's nice to end with some. The police presentation is tomorrow so hopefully she'll have a good day and we'll make it to that, and not have to get gran to accept the cheque for Alyssa on our behalf. They have been very mysterious about the amount, saying it will just be "a nice surprise" but whatever the amount, it is greatly appreciated and will be put towards Alyssa's sensory room. The rep and OT are coming out on Wednesday to have a look at the room, and design a suitable sensory-based environment for her. One which will not only help protect her from her surroundings, but which will also help t improve her current sensory impairments.