soph got a very sketchy preliminary diagnosis of cyclic neutropenia about 2 months ago. i have been hoping against hope that the paediatrician was wrong, but i also started keeping a diary.
2 months on and i'm sad to say i think he's right
so, now is the tie o begin being proactive. we're seeing mr m again in april, but until then are there any tips you can give me on reassuring an overheating, ill child? has anyone's child suffered with this disorder?
thanks in advance.
oh how I love my tea, tea in the afternoon. I can't do without it, and I think I'll have another cup very
ve-he-he-he-heryyyyyyy soooooooooooon!!!!
I'd never heard of it before Mrs F so I googled it. So now I know. Not sure how it would be cyclic though- either enough neutrophils are produced or they aren't can it go up and down. I suppose so.
When my gal was wee she regularly picked up bugs, got a flaming temperature, threw up(because of the temp not the bug) for 24- 48 hrs and was really unwell then was OK for a while. Does that sound like it?
We saw a consultant about her asthma and I mentioned this to him he said "it's just her way of dealing with new bugs - she'll grow out of it). Sort of reassuring but not very helpful. So I sorted it out myself. I couldn't stop her contracting infections but I could minimise their effect.
1) First sign of any illness I gave her Calpol.
2) If I missed it and she threw up the Calpol, I tepid sponged her regularly.
3) I put one drop of Lavender and one drop of peppermint on a cotton wool ball on top of her wardrobe at night. It helped her sleep and helped keep her temp down.
4) When she was really poorly I made her a little bed on the floor next to me in our bedroom - she felt safe and in the numerous times I was up with her in the night we could both get back to sleep quicker.
And she has grown out of it! Hope that helps.
Maggie
Never doubt that you can change history. You already have. Marge Piercy
Life shrinks or expands in proportion to one's courage. Anais Nin
sounds similar, except that sophs is regulary almot as clockwork.
we've had blood tests to check her neutrophyls, two normal weeks, one week with raised tmp to see if the blood cells are responsible.
we first went to see the paediatrician about her getting thrush so often too, and he gave us options. cyclic neutropenia (genetic disorder causing neutrophyl count to drop in a regular 4-6 week cycle, nobody knows why, nobody can cure it), low immune system or something along the lines of rheumatoid arthritis.
basically, her body is reactgin to something and we're trying by process of elimination to find out what the hell it is.
oh how I love my tea, tea in the afternoon. I can't do without it, and I think I'll have another cup very
ve-he-he-he-heryyyyyyy soooooooooooon!!!!
