My 11 year old daughter recently had a blood test which showed neutrophil count of 1.2, white blood cell 3.4, with no signs of obvious infection. All other blood counts are normal - platelets 250 and Hb 132.
If it was any other child I know it would be likely benign but her younger sister had an aggressive form of Myelodysplastic syndrome ('MDS') aged 2 (thankfully she’s in remission 4 years after a stem cell transplant). They did a full genetic panel but didn’t find a genetic predisposition. However, they haven’t ruled it out given the unusual way her Myelodysplastic syndrome ('MDS') developed for a child.
How many of you had isolated low neutrophil count as first sign of Myelodysplastic syndrome ('MDS'), or did most of you have other cytopenias? Her doctor, after consulting with her sister’s haematologist, wants to refer for a microarray test straight away, which feels very scary and a bit excessive given just one ‘off’ count. Not sure how worried I should be.
Hello there @Mel1574, I’m really so sorry to read of your concerns about your daughter’s recent blood test. It must be especially difficult considering your younger daughter’s Myelodysplastic syndrome ('MDS') diagnosis and treatment.
While I am not a doctor and we forum members can’t offer medical advice, it sounds optimistic that your older daughter does not show a genetic predisposition, and that many of her blood test results are in their normal ranges. From my experiences of having many blood tests due to living with Polycythaemia vera ('PV'), I’d say these results are worth holding onto as good news.
I reckon it might help to speak with the lovely specialist Blood Cancer UK nurses who really know their stuff. You’ll see them around the forum and I’ve tagged them here @BloodCancerUK_Nurses but I’d suggest giving them a call on 0808 2080 888. You"ll be able to pass those blood test results by them and see what they say based on their expertise.
Hope that helps a little @Mel1574, do please let us know how you and your daughter get on.
Thank you for your post and welcome to our community.
We are so sorry to hear that you are going through an understandably worrying time.
We can imagine this is overwhelming, especially having a previous experience of Myelodysplastic syndrome ('MDS') in the family. We are glad to hear that your daughter’s younger sibling is in remission and hope you are all doing okay.
In case it is helpful at all we do have information on causes of Myelodysplastic syndrome ('MDS') on our page Myelodysplastic syndromes (MDS) causes | Blood Cancer UK. On this page it states: ‘if your doctor thinks your Myelodysplastic syndrome ('MDS') may be inherited, they will refer you to a genetics service to discuss the chances of other family members having it. However, for most people, Myelodysplastic syndrome ('MDS') is not passed down to children and is not an inherited genetic disease.’
It sounds reassuring that the team have not found any genetic predisposition when examining a panel.
We can imagine it is daunting that they have said they want to complete a microarray test, however it sounds as though the team are being through and aiming to do the best they can to hopefully provide reassurance.
Could we ask if you have a clinical nurse specialist or key worker within the haematology team you could speak to? As it may be a good idea to chat to them how you are feeling and they will be able to explain further about this.
It sounds like you are going through a lot so please know that you can contact one of our nurses on 0808 2080 888 or email us at support@bloodcancer.org.uk should you wish to talk through any of this.