Thursday, 9 April 2015

Hospital Update

Today was the day we went back to see the consultant about L's blood tests which were trying to determine whether or not she is suffering with neutropenia, cyclic neutropenia to be precise.

I wasn't expecting a brilliant outcome, and to make me feel worse, when we arrived the pay on exit system wasn't working and you had to pay and display, luckily I still had L's purse with me as I had no change. (The pay on exit system takes notes)  Once we had paid and displayed we went to check L in and wait.  L and R played table football whilst we waited, and luckily we were only kept waiting about 20 minutes after her appointment time.

I had taken the names of two Dr's here in the UK who are on the NNN (National Neutropenia Network) just in case I needed to refer to them.  However the consultant surprised me.  He firstly told L how brave she had been to undergo all of the blood tests, he offered her a sticker but she doesn't like stickers, and so he said he'd get a certificate sent to her instead.  Then he showed me her blood test results and said that although they are generally the low end of normal, and do drop off the normal range when she goes low, they do recover (all of this I already knew really) and so he and his colleagues don't think they want to put her through any further testing to verify cyclic or not, they are happy to say she has constant mild neutropenia, because he levels don't really drop low enough that they would intervene, he did say that the injection they can give probably would improve her levels, they weren't low enough for her to qualify, and after the reading I've done on them I really don't want her on them either, so I was happy there (he was at least proving to me that he did know what he was talking about, which with the other Dr I wasn't convinced he knew anything about it). 

He has agreed to send me a letter saying that L has neutropenia and is going to be more susceptible to catching illnesses and suffering from fevers than your average child.  He is going to put in the letter that if L suffers with several illnesses one after the other and is struggling to get over them, that he would suggest a blood test, and if her neutrophil count is below 1.0 that she should either be referred to the hospital for investigations on the ward, or, if she is struggling with fevers, that she could be given a course of antibiotics to see if that helps.  He is going to email me a copy of the letter before he finalises it to see if I am happy with it, then, when we're both happy with how it sounds he'll send me and her Dr a copy of the letter, and I can give a copy of the letter to school so that they are aware of her condition and how this might impact her education so that they can work with me when she's suffering, I wanted this in place before she went to senior school and so I'm very happy that he suggested doing this. 

He seems happy to leave communication between myself and him open, even though at present L doesn't need to go back to see him, and for now I am happy to leave it at that.  Whether or not her condition specifies cyclic or not, really doesn't make much difference, the treatment plan would be the same, and if she deteriorates then he would be happy to test further, and I really don't want to put L through any more blood tests than she needs, she has had more than the average child has anyway, and may end up with more if she has a bad patch so that is fine by me.

On a positive note over the last couple of months L has had a brilliant run, she's suffered with mouth ulcers and sore throats, a random rash which cleared up as quickly as it came, but she has had a lot of energy for her, and I'm still hopeful that she will outgrow this and improve with age.

So overall I was happy when I left, as was L as it means no more blood test unless she's really poorly.

Lupin Girl x

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