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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Hematology doctors

61 replies

maggie222 · 18/01/2020 21:46

Any hematology doctors on here that can have a quick look at some results.

Background: my son had 2 x bone marrow transplants in childhood. Just been transferred to adult services and 2 different consultants have said his hematology results are abnormal and referred back to his BMT doctor who is not getting back.

Son has recently gone downhill will lots of infections, nosebleeds and just sleeping constantly. His mental health has declined massively this past week and GP just asked for him to fill in a form at reception then a telephone consultation.

My gut feeling is screaming at me like it was he was a baby, took 18 months for diagnosis then he was seriously ill.

I would be grateful if somebody could take a quick look.

OP posts:

Lockheart · 18/01/2020 21:50

I'm sorry but you really should not be showing your sons medical data to randoms on the internet. It's a very bad idea for so many reasons.

Please speak to a known doctor in real life. Seek a second opinion if you're not satisfied with the way your regular GP is handling this.

YenniferOfVengeberg · 18/01/2020 21:51

You are asking people to risk their professional registration, or far more likely getting someone who isn't a haematologist, and whose opinion can't be trusted. Not very sensible.

Original poster

maggie222 · 18/01/2020 21:55

Ok, point taken.

No identifying data. Just banging my head with NHS doctors who gave him large dose chemo and steroids for 6 years but now discharge and ignore and calls as he turned "adult".

Hes far from adult due to his earlier years and I can see him crumbling before me.

OP posts:

FraglesRock · 18/01/2020 22:07

Which results are abnormal. Not a haematologist but see him enough sadly

Original poster

maggie222 · 18/01/2020 22:18

Very low white blood cells
Low red blood cells
Mean cell haemoglobin high
Hematocrit low
Platelets low
Neutrophils very low
Eosinophils low

OP posts:

FraglesRock · 18/01/2020 22:35

There's a great group called healthline. Loads of experience on there and you can be anonymous.

It's not my disease so I've no idea

Ariesscientist90 · 18/01/2020 22:38

I'm an ex blood scientist specialising in haematology and transfusion, without the actual values it's hard to give much of an opinion, but those results do not sound good imo.

Original poster

maggie222 · 18/01/2020 22:51

Thank you for replying.

I do have the values, but was advised not to state them. For example neutrophil count is 0.73 and white blood count 2.6

I know this is low as it has the stars next to them. He seems to have become lost in the system between child and adult healthcare.

He had a big nosebleed a couple of days ago and sleeps all the time and just cries as he is so down and lethargic. I have arranged for a private counsellor as I thought his mental health was failing but the nosebleeds and bruising are ringing alarm bells.

OP posts:

Ariesscientist90 · 18/01/2020 22:58

He probably needs a bone marrow biopsy unless there is an obvious cause for his abnormal results, from what you've said he has pancytopenia, which means that all three of his blood cells are low, it has a variety of causes, so would be impossible and inappropriate of me to say what I think is going on. Sorry I can't give you more info, but no one online will be able to as there are so many potential causes.

Original poster

maggie222 · 18/01/2020 23:04

Thank you for replying.

I think I need to be more forceful this week when I call,.I understand resources are stretched but I feel that as they have given all his treatment in his childhood and they did say he would have complications in later life they cannot just wash their hands surely?

Thanks once again for your help

OP posts:

raspberrymolakoff · 18/01/2020 23:27

If he was treated in a paediatric unit I'd be inclined to contact them on Monday and ask for advice they may be able to make a call on his behalf. Consultant's PA to PA is usually the best route.

Badgerstmary · 18/01/2020 23:41

Please push to get him a bmb . Was it leukamia he was diagnosed with initially?

Original poster

maggie222 · 18/01/2020 23:48

He was treated in a paediatric Bone Marrow Unit, his first transplant aged 3 failed so he had another aged 5.

He has been fairly stable other than bone issues which has affected knees, hips, has 4 fractures at bottom of spine. His bloods had not been done for many years as consultant said he judges by how he is.

He has now turned 18 so they have been gradually moving him over to adult clinics. His 2 new adult consultants who deal with metabolic bone issues and renal (he has kidney disease ) both wrote to me to say his hematology results were abnormal so they were referring back to his BMT doctor for advice. I didn't hear anything so spoke to BMT secretary who advised me to email the blood results to his consultant and copy her in, nothing came of it so I did a follow up email, nothing again so I presumed I was worrying about nothing.

Over the past 6 months or so he always seems to be ill, his skin is like infected acne on his body and face, he is having nosebleeds and sleeps and cries everyday.
He has had to come away from college just before A Levels as he is falling apart. I just thought it was stress of exams and he was down but he broke down last week saying he has nothing to be here for and is just sad all the time. Nothing in life makes him happy.

GP is just filling forms and a telephone consultation. Local teen counselling said up to 12 months waiting list.

I'm exhausted as I am watching him constantly, he eats and goes back to sleep and just cries.

Sorry...its been a long week.

OP posts:

DustyD2 · 18/01/2020 23:50

Take him to A&E but choose a hospital with a haematology ward if possible

Ariesscientist90 · 18/01/2020 23:52

They can't ignore this, these results and his symptoms are huge red flags, and that's without his history. I personally would call the secretary of his previous (childhood) haematologist and explain the situation and that you're concerned that no one has got back to you yet despite his symptoms and abnormal blood test results, how long has it been since his blood test? If you don't mind sharing, what is his hb and platelet count?

Original poster

maggie222 · 18/01/2020 23:53

Badgerstmary

No he was born without most of his immune system working, called CGD so he couldn't fight off bacterial and fungal infections. Very rare so it took 18 months of me crying in the doctors as he was so poorly. Eventually I went to the local childrens hospital without referral and refused to go home as he was having over 40 bloody nappies a day and nobody would listen.
He needed a blood transfusion that night and surgery and then the next 6 years were a blur.

I remember them saying he is at risk now of solid cancers and leukemia as he had been treated with Campath and busulfan.
I just thought I was worrying about nothing as they didn't get back to me.

OP posts:

nothingcomestonothing · 18/01/2020 23:55

I would be phoning the hospital main reception on Monday and asking them to bleep the BMT Clinical Nurse Specialist. I think if you have been transitioned from paeds to adults without being given his/her contact info that's really shoddy, especially if your DC has had megatherapy and BMT. If they cant reach the BMT CNS insist they bleep another Haem CNS and say he is pancytopaenic and needs to be seen in Haem clinic this week.

I'm not trying to worry you, it could all be something explained or treated very easily, but clearly your DC needs seeing in Haem to get things sorted. Adult Haem CNSs are usually knowledgeable and sensible, all the best.

Original poster

maggie222 · 18/01/2020 23:56

His blood results were June and then July last year and I have been chasing with his old consultant.

It is in the past couple of months he has crashed.

His platelet is 105
HB is 124

It is the neutrophil side of things I worry about as that was the issue before transplant if that makes sense.

OP posts:

ClientListQueen · 18/01/2020 23:59

I'm neutropenic and v tired a lot of the time and also pick up illness/infections. My count varies, but I was 0.3 at diagnosis. I'm now on lenograstim (GCSF) weekly which is helping, my count hovers around 1.5 but they've upped my dose recently

Ariesscientist90 · 19/01/2020 00:02

Are these results from June/July?? Has he not had any bloods since?? You said his doctor never did blood tests, so they have no baseline to compare these results to, so I have no idea why he's not been followed up or had repeat tests especially with symptoms, this is very very poor imo.

His Hb is a tad low, but in isolation, not something that would overly concern me, his platelets are quite low, our cut off for calling urgently about results was 100, so he is just above the cut off, but my concern is if these were done in June or July and he's been having regular nose bleeds over the last fews months they now may be a lot lower. I think you need to get him another blood test asap if these results are that old.

Original poster

maggie222 · 19/01/2020 00:13

As I said previously, I tried with his consultant but presumed I was being over anxious and he knew what he was doing.

I will arrange urgent bloods this week even if I have to turn up at clinic ad hoc. He is a shadow of himself but the mental health side has been taking precedent since before Christmas.

The nosebleeds is a recent symptom.

OP posts:

DustyD2 · 19/01/2020 00:19

As you are in the uk just take him to A&E, get the blood tests done there and they can call the appropriate consultant and get him assessed and treated promptly and appropriately. It sounds as if he's not been well at all in the last few days so really appropriate to take him to emergency services.

Sorry you are going through this.

nothingcomestonothing · 19/01/2020 00:21

Did I read that right, his paed consultant hadn't done bloods for years? On a child who has had two BMT? Jesus wept, once your DC is sorted I'd be asking some questions about what magical powers this Dr used to monitor haematological status? I don't know the ins and outs of your DCs condition, but you don't seem to have been offered great follow up. The Trust I work in follows up BMT patients basically for life, seeing in clinic at least yearly (with bloods!), and the patients know that if they ring with concerns, the team will see them the same week.

Original poster

maggie222 · 19/01/2020 00:27

nothingcomestonothing

No that's right, it been at least 7 or 8 years since they did bloods. He was under the late effects clinic in paediatrics who dealt with puberty as he needed growth injections. They said no need to come as he was still seeing his bmt consultant.
I emailed the late effects doctor before Christmas regarding his mental health decline and stated I was concerned he was going to do something stupid due to his messages the night before as he went out for a drive for hours.
She had referred him to psychology a few before as he was struggling so I thought she would help but no - she said as he is now 18 he has to go through the system via GP like everybody else.

He no longer gets BMT clinic or late effects appointments. We feel totally abandoned especially with the no reply to emails and discussions with secretary.

OP posts:

ClientListQueen · 19/01/2020 00:31

That's shocking. I'm under adult haematology and they're excellent - I'm seen every 10 weeks and blood taken every time and results back within 30-45 mins
Hoping you get some answers soon

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