Neutropenia

[gfuche]

Hi
My 6 month old has finished her first round of chemo and is having 2.5 weeks off to recover. Her bloods showed severe neutropenia so they said be very careful for illness etc. She has a cold- snotty nose etc and has been fine but this morning spiked a temp of 37.9. But this came down within 1/2 hr and is now sitting around 37.3/37.5. I phoned the emergency line at the hospital and they were happy as long as it doesn’t go to 38.

shes tired and ratty and snotty but otherwise ok. Not eating solids much today but having her breastmilk ok. I’m just so worried!! Any advice? Feel like this will be my life for the foreseeable!!

Our wee one is neutropenic, and Immune suppressed due to a genetic mutation. Otherwise well. We have to be careful of temperatures, 38 means a run to hospital if it stays there and generally we need immediate IV access for blood cultures and possibly IV antibiotics. Their neurtraplils go up qnd down fairly randomly, so we always need a full blood count on admission.

Do they get mild temperatures or coughs and colds that don’t need antibiotics or admission?

Do they get mild temperatures or coughs and colds that don’t need antiobiotics or admission?
I suppose I hoping this infection that’s causing her to have a mild temp will go asap and we won’t need a dash to the hospital!

It's a horrible feeling but remember you have a clear plan from the hospital, go in at 38. The rule is there because they are at risk of sepsis, especially with a central line, so neutropenia+fever needs checking. You are right to be cautious and keep taking temperature, but if she has cold symptoms serious illness is unlikely.y DC only had one neutropenic fever and it turned out to be COVID, my friends younger child was back and forth a few times but always minor childhood illness
Have a bag ready to go just in case, but fingers crossed she's just got a cold.
When did her last bloods come out? My DC used to go to zero and then come back quite quickly so she might already have some neutrophils to start fighting off this cold.

Thank you that is reassuring! Her bloods were only done yesterday, I’m keeping a very very close eye and if it creeps close to 38 I’ll contact them again. But like u said, fingers crossed it’s just a cold and she gets over it soon!!! I feel like a dose of calpol would be brilliant right now but obviously am not allowed to give it…..

she does get colds etc too. We have been in fairly often over the past few winters often if neutrophil count is ok were home fairly quickly with oral antibiotics, but we have a finger O2monitor and a good thermometer to keep track. We also have a grab bag rucksack kept packed and ready with Pjs, underwear for child and adult, some basic toiletries and spare meds, spare charger, couple of small books and toys, and trousers and tops for child.

If going in and have time, we add a tablet to watch programmes, to draw on etc, a water bottle each and some snacks/cheese sandwich apple etc. We can be sitting for a while in triage or a cubicle in A&E and we tend to be put in a single room if admitted, so have some emergency food for parents (child will be fed) and something to keep them occupied.

We have had a lot of colds that didn't develop into worse as well.

Thanks, that is great advice. I think she’s a wee bit better today but will be keeping close eye and my bag etc is packed if we need to go in.

How’s your wee one doing today? My dc spent a lot of time on chemo being neutropenic and the worry is hard going. Hope her temperature is back to normal now. I was so glad I could drive (passed my test late in life) and had a bag packed and ready at all times.

Yes her temperature seems back to normal now, thank goodness. She’s very snotty and looks like her teeth are bothering her loads too but she’s in good form! I am a bit obsessed with her temperature at the minute 🫣.
We also use the owlet sock and it’s very interesting because her heart rate was also up while she had a temp but last night was back to normal. So must be on the mend 🤞

Thanks for everyone’s advice- My bag will stay packed now incase of a dash to the hospital, always good to be prepared, and we only live 10mins from the hospital so we are very lucky.

@gfuche i remember well the folder of info we got when DD first diagnosed, neutropenia was mentioned but I didn’t really focus on it and it was lost in so much info. Sadly neutropenia, the magic number 38 and your local hospital will almost certainly become a big part of
your life from now on. I had no concept of how big an issue it was. We didn’t even have a thermometer at home pre diagnosis. Make the most of the good days, never hesitate to phone the team if in any doubt at all and best of
luck to you and your daughter.