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Original poster

Low white blood cells/Neutropenic/? Crohn's

13 replies

Mumofboys33 · 23/04/2024 18:55

Hi,
I'm not sure what advice I'm looking for but I'm hoping somebody could advise. My 7 year old son started to wake in the night back in August with severe stomach pains, unable to walk and hysterical, the only time he settles is when he vomits, this is with blood in his stool on occasion.This started to happen once a month, it was happening at different times of the day. In November he had a blood test which came back showing low white blood cells. He's had these bloods repeated every 3-4 weeks since and they have not improved, he is Neutropenic and we have a referral to haematology. Alongside this the symptoms have got worse, he has lost weight, he's lethargic to the point of falling asleep in a full football stadium, not eating, refusing food, so pale, stomach pains more frequent, occasional blood in stools. His paediatric consultant refused to refer him to gastro as she feels he's too young for anything bowel related. We are now 9 months on and my son has had a few occasions of upset stomach and having accidents, we now feel we have no choice and are taking him private for a colonoscopy and gastroscopy.
I was hoping someone could shed any light at what we are up against as we are sat waiting and in the dark about everything. :(

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Hazelmaybe · 23/04/2024 19:18

Hello you are doing the right thing going private to get a Gastro appointment. I am surprised the paediatrician said he was too young because babies get Gastro issues so that doesn’t make any sense. A proper Gastro review will help.

Underwatersally · 23/04/2024 19:22

Going private seems like a good plan.

My brother has coeliac and is often neutropenic when he has a bad flare up and it lasts for months so it might be worth asking them to screen for that too if they haven't already.
He also used to have accidents and an upset stomach when he had a flare up as well as abdominal pain and vomiting.
He wouldn't eat as it caused him stomach pain and his growth was slow, he was also tired all the time.

I hope you get answers soon.

GoneIsAnotherSummersDay · 23/04/2024 21:27

So what is the paeds consultant's plan? Surely they're not just leaving you to it with the severity of these symptoms?

You need to see a gastro. If you can go privately I'd do that.

Your alternative is to go to A&E at your nearest big hospital that has an IBD (bowel disease) team and see if they can set the wheels in motion and get some investigations booked. I wouldn't feel bad about going to A&E with a young child with these symptoms. He needs medical help.

Original poster
Mumofboys33 · 23/04/2024 22:25

Underwatersally · 23/04/2024 19:22

Going private seems like a good plan.

My brother has coeliac and is often neutropenic when he has a bad flare up and it lasts for months so it might be worth asking them to screen for that too if they haven't already.
He also used to have accidents and an upset stomach when he had a flare up as well as abdominal pain and vomiting.
He wouldn't eat as it caused him stomach pain and his growth was slow, he was also tired all the time.

I hope you get answers soon.

Edited

Thank you for your reply.

My son has had the tests for coeliac , lactose, milk, h pylori , culture and sensitivity. The works. All negative

Thank you for your reply it's very appreciated. Just a mum needing answers and for someone else to tell me I'm not crazy :(

OP posts:
Original poster
Mumofboys33 · 23/04/2024 22:27

GoneIsAnotherSummersDay · 23/04/2024 21:27

So what is the paeds consultant's plan? Surely they're not just leaving you to it with the severity of these symptoms?

You need to see a gastro. If you can go privately I'd do that.

Your alternative is to go to A&E at your nearest big hospital that has an IBD (bowel disease) team and see if they can set the wheels in motion and get some investigations booked. I wouldn't feel bad about going to A&E with a young child with these symptoms. He needs medical help.

Thank you for your reply.

So. Consultant refused to refer him back in January, after numerous trips to a&e where we sat for 8 hours , had a temp check and sent home, his GP wrote to her to ask her to refer him. He's got urgent referrals to both haematology and gastro sent - gastro being a 65 week waiting list.

We are now booked in private for investigations next month costing £4,000 minimum.

We are watching him deteriorate and don't know what else to do .

OP posts:
GoneIsAnotherSummersDay · 23/04/2024 22:38

If the investigations show something that needs treatment, hopefully you'll be able to switch to NHS down the line.

I'm so sorry you're going through this. I've had a few months of DD (7) having a serious health issue and it's been horribly stressful even with access to the right doctors.

I have ulcerative colitis which has some similar symptoms to your DS with the blood and the urgency. I do also get extreme tiredness at times.

Original poster
Mumofboys33 · 23/04/2024 22:41

GoneIsAnotherSummersDay · 23/04/2024 22:38

If the investigations show something that needs treatment, hopefully you'll be able to switch to NHS down the line.

I'm so sorry you're going through this. I've had a few months of DD (7) having a serious health issue and it's been horribly stressful even with access to the right doctors.

I have ulcerative colitis which has some similar symptoms to your DS with the blood and the urgency. I do also get extreme tiredness at times.

We have been told if he gets a diagnosis he will be transferred onto the NHS so there is always that.

Thank you for your reply.
I hope your DD is okay

X

OP posts:
Hazelmaybe · 24/04/2024 07:18

Just wanted to add that I have been through a lot of the same things getting my son diagnosed. We had years of issues getting a diagnosis and he ended up with a rare diagnosis. Even if they don't find anything in the tests doesn't mean he is fine. My son had what is called psuedo obstruction which causes similar symptoms. If you'd like to message me feel free. It's a hard place to be. x

turkeyboots · 24/04/2024 07:36

Will the GP or Peads order a calprotectin stool test? Non invasive and will give a good indication if the other tests are needed.
I'm not in the UK, but private hospitals here don't do scopes for children as it's a very specialist procedure, and the market isn't there for it. So triple check the private option does offer it for peads before you hand over any cash.

Edited to say my DS was 10 when diagnosed with Crohns. And the peads IBD team exists for a reason.

kivas · 24/04/2024 07:44

Get a calprotectin test done - it'll show inflammation in his gut if there is and the drs use that to confirm if colonoscopy is required. Its just a stool sample - ask your gp to initiate that request.

Original poster
Mumofboys33 · 24/04/2024 08:35

turkeyboots · 24/04/2024 07:36

Will the GP or Peads order a calprotectin stool test? Non invasive and will give a good indication if the other tests are needed.
I'm not in the UK, but private hospitals here don't do scopes for children as it's a very specialist procedure, and the market isn't there for it. So triple check the private option does offer it for peads before you hand over any cash.

Edited to say my DS was 10 when diagnosed with Crohns. And the peads IBD team exists for a reason.

Edited

Thank you for your reply.

Yes my son has had a Faecal calprotectin test and it was normal. He's only ever had any tests done when he's "well" not sure if that makes any difference.

We have already had a private consultation and have been advised we need the colonoscopy and gastroscopy and biopsies to rule out any bowel issues.

X

OP posts:
Original poster
Mumofboys33 · 24/04/2024 08:36

kivas · 24/04/2024 07:44

Get a calprotectin test done - it'll show inflammation in his gut if there is and the drs use that to confirm if colonoscopy is required. Its just a stool sample - ask your gp to initiate that request.

Thank you. He's had this done. He's had every test you can think of.x

OP posts:
user28883 · 18/07/2024 18:37

Hi- did you ever get to the bottom of what was going on with your DS? Hope he's now feeling better- we are in a similar situation with my DD

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