Can someone please help re blood tests. I’m a walking mess

[Kieranerin]

Hi I’ve posted before but have more of an insight now. Basically my cousin who was 6 passed away in December of a rare blood disorder that went undetected until it was too late. (HLH) 5 weeks later my husband’s niece who was 24 passed away of a rare blood disorder that also went undetected until it was too late (TTP)

We decided to have the children’s bloods tested to be on the safe side. Son aged 14 at the time cane back fine, my daughter aged 7 at the time came back with slighty reduced white blood cells and the doctor said I didn’t need them re testing but I said yes. This was in February of this year. My daughter 2 weeks before the blood test had tonsillitis. Her second blood test was done in April and came back even lower. To cut a very long story short the doctor said he was referring her to a haemotoligst. I’ve been out of my mind with worry, to the point where I’ve made myself very poorly, mentally. Her appointment is tomorrow. The doctor said over all her bloods were fine other than one element of her bloods were low and obviously went lower. This I’ve now discovered is her lymphocytes. I know my appointment is tomorrow and this thread may be wasting people’s time but I really want to know if anyone has come across this. She’s fit and healthy other than a stomach bug she had mid June. X

TTP causes low platelets. From what you say the platelets are fine. HLH causes pancytopenia (all of low white cells, and low red cells, and low platelets). From what you say the red cells and platelets are fine, as are the other sorts of white cells (lymphocytes are just one sort of white cell). So it sounds like it definitely isn't the first one and is incredibly unlikely to be the second one. Lots and lots of things cause slightly low lymphocytes. From incredibly common things like a recent virus, to incredibly rare (and most of them not really worrying) things. It's very unusual to find something worrying from just a slightly low lymphocyte count. Seeing a haematologist is reasonable, to try to draw a line under this, but the single most common thing to happen (which would be lovely!) is for the count to go back to normal by the time they're seen.

Apologies for arriving late to this, my daughter has only recently been diagnosed with HLH and I searched Mumsnet for mentions of it.

My daughter has had tests to find out if her HLH was triggered by a gene fault, there are quite a few different genetic causes. Can you get your children tested for that? I know it’s a costly test, but my daughter’s were covered by the NHS.

I wouldn’t have thought the blood counts tests would be any use as a predictor, only as a diagnostic tool when HLH symptoms are present?

Hope you’ve had comforting answers already.

Hi Betty. My eldest also had HLH recently. It's terrifying. Until your post id not found it on here. Have you had the genetic results yet? A's was acquired rather than genetic and no cause was found despite all the tests.

OP hlh wouldn't show in general bloods unless it was active so to speak and your child would be very ill. If there was a genetic cause that could be checked but nhs unlikely to do that unless a sibling had it. Also with genetic hlh the child tends to show symptoms under 1yr old.

Blueflower my daughter’s genetic tests came back clear, so acquired, rather than genetic (although drs have said this doesn’t mean it’s definitely not genetic, just that if it is, the science doesn’t know about it yet). No full siblings to worry about, so that’s something.

My daughter’s was kicked off by the EB virus and seems to have been diagnosed very early so she’s doing as well as can be expected, but really struggling with the side effects of the medication.

How is your eldest doing?

That's pretty much what we were told re genetics, not enough research since it's so rare I think.

A is ok, HLH is in remission after 8wk protocol. Had been unwell for weeks before diagnosis so it caused inflammation in the brain and has left A with seizures and some personality changes.

What stage is your daughter at? If there is a clear cause that can be treated does that help?

A didn't notice the medication/side effects or just didn't have any but was incredibly ill so it was hard to tell.

Yes, it’s a terrifying illness and hard to unpick symptoms from side effects. My daughter was in the GP on Friday afternoon with a persistent fever and on a ventilator in Paediatric ICU by Sunday night.

She is really struggling with steroid toxicity, but is now home and attending the Leukaemia clinic weekly. Dr is hoping to wean her steroid dose faster than initially planned.

Feel free to PM for connections on other social media, HLH affects only 1.2 children in a million so peer to peer support is hard to come by.

Wow our stories are similar. GP on Monday, sent to hospital in an ambulance then transferred to bigger hospital with PICU on Wednesday.

Sounds like your daughter is doing well so far. That's good news about the steroids. Does she have any neuro involvement do you mind me asking?

I'll pm you later, don't think you can on the app. It's good to talk to someone who gets it without a huge explanation.