Neutrophil count

[CDJ]

I have just got home from work to an email from the IBD team saying that Josh's last bloods show that his neutrophil count has dropped, and to stop the azathioprine straight away, and to get repeat bloods done in a weeks time.

This really concerns me as it sounds pretty dramatic and also Josh is going away for two weeks tonight with his dad and won't be able to have a blood test until he gets back.

Reading up a little on it, it is showing that it can be a indication of cancer, and this really scares me.
Can someone please tell a very worried mum what to do about this and how important it is to do a blood test next week and not wait until he gets back home in two weeks.

This couldn't have come at a worst time with Josh being away and not able to deal with it.

 

[Mr chicken]

Are there no hospitals or labs by his dad ??
He really needs to have the follow up bloodwork done
It's not a wait and see sorta thing

 

[CDJ]

They are staying in a holiday town for the next week, so I can't see that they will be able to get anything done there.
The following week they are back in Scotland, so I will ask his dad as to whether the surgery there will do bloods.
It is difficult sometimes as the blood results have to go to the correct hospital and as we live in England and his dad in Scotland I am not sure how this will work.

 

[DanceMom]

A is sometimes Neutropenic. During those times we are extra careful about hand washing and germ exposure. Could be just a blip, but retesting in 2 weeks or so is reasonable.

 

[littlemissh]

You can attend any local GP as a temporary resident and get his bloods rechecked. They should be checked. Do you know what his numbers were?
If his numbers were really bad he would have been admitted. My white count and neutrophil count have been low since I have been on meds- it's not an uncommon problem-first aza now Humira but they are just monitored now ( white cell count usually about 3 - should be 4-11, neutrophils 1.0-1.6 (should be above 1.8)

 

[CDJ]

Littlemissh I don't know what his numbers are. The email I had was very basic, just saying the neutrophil count is low, stop azathioprine, and to repeat bloods.

Josh has gone with his dad now. I am going to contact the IBD team on Monday to find out more. His dad is willing to take him anywhere to get bloods done, even if it means coming back here. I really don't want him admitted to a hospital away from me. He has never had to go through anything, including have blood taken with anyone other than me. His dad isn't the most patient or understanding of people, so I do worry about this. On the plus side Josh seems to be really well, he isn't showing any signs of being ill. So that is on his side.

Why do these things have to come up on a Friday, when you can't do anything until Monday??

 

[littlemissh]

I doubt very much it is anything to worry about. Counts pick up quickly after withholding aza. Haematologists don't worry about infection risk until neuts are <0.5!
Get dad to ring a GP local to where they are on Monday and book a blood test explains why it is needed. It will help the GP if he/she knows current numbers so they know if better.
It is very unlikely he would need admission- this is generally only with pancytopaenia (very low Hb, red count and white count) which from what you say isn't the case with josh.
I have had some spectacularly low white counts and not been admitted because of that (once dropped to neuts of 0.1)
Just be careful with hand hygiene etc.

 

[positivemum]

Hi After 2 years on Aza my son had to stop because of low neutrophils and lymphocytes counts. It has to be stopped in case damage is being caused to the liver. He was ok. but it took a year for his counts to start improving and even had a bone marrow biopsy to check he was making his white blood cells in his bone marrow.

we are also in England. We are now in infliximab(remicade)

 

[Johnnysmom]

My son got low neutrophils as well, his level was a 1.0 at one point. The only thing you need to be aware of is that he is vulnerable IF he gets an infection. So if he were to get a fever or illness this week while with his dad you would want to call his dr. straight away. It is not uncommon to have this type of side effect and his numbers should go up quickly once he stops his meds. I wouldn't worry about cancer. My son has had this issue numerous times. The first time they cut his dose of meds and put him on Allipurinol and he was fine. The second time he had pneumonia and it attacked his bone marrow and that lowered his level, so they took him off his meds for 2 weeks and his level returned to normal and then he commenced his meds as usual. You will work this out. If they thought he had cancer or his level was so low that he was very vulnerable to infection they would admit him to the hospital and get to the bottom of things immediately . I don't blame you for being nervous though, I was as well! Big ((((hugs))))