It's been a very stressful week ...

but I think we may have finally come out the other side now!

After initially seeing the first out-of-hours doctor on Saturday who told me to have Alyssa seen again if I was worried about her breathing at any point, or if I felt she'd worsened, I took her back again - to a different doctor - who told me he didn't think she had the flu at all (!?!). That he didn't think she had a chest infection (!), that her chest was clear and that she probably had "slapped cheek syndrome" which was ... a ... virus! And that she would just get better on her own.

I could have accepted that - especially as taking her out in the cold had brought her temperature down a bit again, and she did look better than she had when I phoned - except the only thing that was actually bringing her temperature down (though only to 38C) was the antibiotics that the first doctor had given us. When I said as much, he said that I should just finish the course anyway but that he really didn't believe that she had anything bacterial going on! This would be when he then felt the need to tell me "what a virus was" in the most patronising tone ever, and in language that a 3 year old would have understood! I was not a happy bunny, but also pleased that Alyssa herself was much more alert and comfortable so I left anyway and brought her home.

She had a few "dips" throughout Sunday and was most definitely a poorly girl at times but did seem to be a bit better overall, so I hoped that she was on the mend. But I still planned to phone her own doctor - for sensible advice, given the two completely conflicting opinions on Saturday - and although was up and down quite a bit Saturday and Sunday nights, I was a bit happier with her come Monday morning.

Phoned Alyssa's paediatrician and discussed the whole thing with her. She felt that the antibiotics Alyssa had been prescribed were definitely the right ones "if she had a chest infection" and that she would probably continue to improve. That I should just take her into the ward however, if I felt that she was worse at any point as we still do not really know for sure that her immune system was fully functioning and we were better to err on the side of caution. She said that some children - particularly those with a family history of asthma - would need inhalers etc to get them through the worst of a chest infection, so I reminded her that there is a lot of asthma in my family. Something Alyssa has never shown any signs of thankfully, but something which neither of us want triggered in her. She has enough problems without asthma!!!

As the day progressed, I was still concerned about Alyssa's breathing at times but the second doctor had shaken my confidence in my ability to know Alyssa so well. I would probably have just taken her home (we were at mum's for a while) if my mum hadn't been so concerned about her. My mum has very bad asthma - triggered when she was 40 by a viral infection - and she is far more of an expert on the subject than me. Although I have seen many of my family suffer from it, I have never personally had to be involved with the treatment and found it hard to gauge whether she needed help or not. Alyssa then had a coughing fit which she found it difficult to breathe through at all and that made it a bit more obvious how much she was struggling. Mum felt that she needed something more than she was getting, so I decided it was better to be safe than sorry and - instead of yet again having to phone in the middle of the night, wishing I'd phoned during the day - I opted to phone and say I was bringing her in. Felt I could cope more with being worried and wrong, than not being worried enough! :-(

She obviously looked much better (to me) by the time we arrived at the hospital and I felt like a bit of a drama queen to be honest! She was playful and chattering to the staff we knew, and I said as much to the nurse who was in charge of her care. That I didn't want to be wasting anyone's time but that I usually know her so well, and that she'd looked really bad when I phoned. The nurse just looked at me and said that she could already tell Alyssa was working very hard! She also seemed a bit shocked that Alyssa's temperature was 38.2 but I was not conerned by this, so had to explain that temperature in Alyssa is not always a very good judge of how she is. The doctor then came in then and also said Alyssa was working pretty hard - that she still looked good and he wasn't overly concerned - but that he felt she definitely needed some help.

He listened to her chest and - like the first out-of-hours doctor I saw on Saturday - said she had a chest infection (more so on the left side, also like the first doctor said), which made me angry at the second doctor I saw! He gave me an inhaler for her with a special little chamber for her to breathe it from, and seemed amused when I said that mum had one similar but bigger. He said he thought it was only children that got them! :-) I explained that if mum is having a particularly bad attack then it is easier for her to pump it into the chamber and breathe from that, than to actually try to breathe it in directly from the inhaler.

We then discussed Alyssa's other problems and I mentioned the dysautonomia and HSAN. He asked where she was diagnosed with dysautonomia so I told him about the recent NY trip and meeting Dr Axelrod. He was so helpful and said that he met a little girl with HSAN when he was in London!!! I have never met a doctor who has heard of HSAN before meeting Alyssa, let alone one who has actually been in contact with a similar patient! He offered to get me her contact details and I said I would be very grateful if he could manage that, the more of us who know about each other, the better!

Alyssa's paediatrician came to see us before she left and changed Alyssa's antibiotics to an even broader spectrum than she was already on, just in case it was H1N1 (swine flu) that she'd had. And happy for me to take Alyssa home, as soon as I felt ready to.

The next few days had a lot of ups and downs - with 4 hourly inhaler treatments - but I could see a gradual improvement. And after the first dose of the new antibiotic, Alyssa's temperature dropped to 36.6, the lowest it's been in over 2 months! So looks like it actually was a low-grade fever this time but other than being a bit snotty, she had no symptoms. And her paed had checked her chest when we last saw her and found nothing to worry her, so she has obviously been fighting the low-grade viral infection for some time ... before she then got the secondary bacterial infection. She is now more or less over both of them now thankfully, it's been a very long week!

However; now that she is "better" from the chest infection, I think she is now more aware of how miserable her day-to-day life is a lot of the time. When she was really poorly and having to make so much more effort to breathe, she was ironically happier. Now that she is over that, she is moaning/whining about absolutely everything and having a complete emotional breakdown over minor things! Which is really sad, because I also hadn't realised how miserable she was at times. She's always seemed to cope really well with everything she has to endure daily, but the sudden mood change back to this emotionally unstable girl makes me sure that it was just a case of her knowing no difference before. It always came on so gradually, with her growing awareness ... and now she's suddenly feeling better ... yet worse! :-(

I am hoping I can find a better way to distract her from her misery, and help her to cope with what is potentially just what she has to deal with for the forseeable future. It's difficult with her age, because it's hard to know how she really feels and also hard to constantly distract her without becoming exhausted yourself. But such is the challenge, by the looks of it.

xx