blood test

[Chezza61]

Good morning, 1st post 😬. My daughter has non verbal autism, epilepsy and can be very aggressive. She needs a blood test but has poor veins so attempts at home have so far been unsuccessful resulting in her kicking off. She functions at 2-3 year old level so cannot understand what is happening. Has anyone any tips or experiences around this to minimise her distress as it’s proving impossible even with me and 2 carers trying to help. Local hospital have not been able to offer any solutions

[Jofisher]

I would suggest sedation as that would be in her best interest as holding her down will just create more fear for her and that’s wrong. My son is the same and if it’s necessary and in his best interest you have to do what you have to do to reduce her stress and fear and yours as well at the end of the day. My son has to have heavy sedation or a general anaesthesia for his teeth otherwise he wouldn’t ever get treatment.

[Chezza61 in reply to Jofisher]

Thank you, she is actually pretty good when dentist visits but that has taken time to develop. I broached sedation at the hospital but they are very reluctant but I fear it may be our only option. X

[Jofisher in reply to Chezza61]

Well your thinking about her best interests that’s all and if she lacks mental capacity then a best interest decision has to be made speak to her doctor

[MissStumble]

The hospital should have a learning disability nurse. Please ask the team if they have carried out the Oliver McGowan mandatory training. Also sedation is absolutely a reasonable adjustment and necessary in this case. Our son is the same just be aware that Autistic people can react differently to meds that others would be ok with. Diazepam for example should calm but makes our son hyper. Very difficult situation but it really does bother me that the NHS simply cannot keep up with kind and nurturing techniques for Disabled people and there is no equitable treatment. Good luck and please trust your intuition.

[SpeedyH in reply to MissStumble]

My son reacted the same way to Diazepam. We have been told that other prescribable sedatives are likely to have the same effect ie make him on high alert and high and that he can only have madizolan in hospital. Please could I ask if you have found an alternative sedative that works for your son. We need something for covid vaccinations as a priority and also bloods.

[Chezza61 in reply to MissStumble]

Thank you, I’ve never heard of the Oliver McGowan training or know if they have a learning disability nurse but will ring tomorrow. I agree about the medication, when she was small they gave here some medication to make her sleepy for an eeg and were amazed she was still running round the ward an hour later! Thanks for taking the time xx

[redyogamj]

maybe not for a quick solution but my son was similar - wouldn’t even allow hospital staff to take his temperature. His staff set up a ‘pretend blood test’ every day. No forcing, just made it gradually fun activity. He now has blood tests, vaccinations , scans, X-rays and colonoscopies. it’s all about trust. Good luck x

[Chezza61 in reply to redyogamj]

This could be something we could implement for the long term, she copes well now with visits from the dentist and going to GP surgery but that’s taken years to achieve. Thank you for the suggestion xx

[Silverelephant]

As a mum of an autistic daughter, now 31, who hated blood tests I remember how distressing this is. I work with families and have recently done a social story for a little boy who was petrified of having blood tests. His particular fear was someone taking all his blood out of his body so our social story centred around how amazing our body is at replacing blood in very simple terms. It takes lots of repetition of the story. I agree with others comments that if nothing else works sedation may be a reasonable adjustment if the blood test is needed. Good luck.

[Chezza61 in reply to Silverelephant]

Thank you xx

[Bergersil400]

We are the same with our 28 year old daughter . She has a severe learning disability, is non verbal and has no understanding of what is going on. She doesn't like invasive procedures.She required blood testing recently and both times we were prescribed Emla cream which I requested. It is a type of numbing cream children are prescribed before anaesthetics.

It seemed to work as the nurses managed to get blood on both occasions. It did require both of us to be on hand in case she needed to be kept still.

[Chezza61 in reply to Bergersil400]

Thank you, yes they’ve used the cream but she has very poor veins so it’s difficult to find one which is an added problem even with 3 of us trying to distract her. She has a high pain threshold so don’t think it’s that. Thank you for replying xx

[Bergersil400 in reply to Chezza61]

It is so difficult for us all with a family member with profound learning disability. People don't realise itWe recently received an invite for her to have a smear test we had to decline. The procedure would be too invasive and require sedation.

[Chezza61 in reply to Bergersil400]

We had the same, my daughter is 35, there was no way we could even consider it! X

[BenjiB]

My son is supposed to have yearly blood tests because of his medication but there’s absolutely no way. The last time he had a general anaesthetic for his teeth they did take blood then but that’s the only way he’s going to let anyone put a needle in him. To sedate him for a GA , it took 9 of us told him for the gas to take effect. It’s all quite traumatic.

[Chezza61 in reply to BenjiB]

I agree, it’s very upsetting, she had to have a stomach ultrasound a couple of years ago, it was awful.

[Oto3]

We had neonatologist because our daughter's vein issue after trying out other method.

[Chezza61 in reply to Oto3]

I’m sorry, what is this please, it’s new to me

[Oto3 in reply to Chezza61]

sorry i was too short in words. My daughter's vein is narrower and difficult to draw blood from . Of course she was scared and not cooperative. So we are advised to have a neonatal specialist to administer it. We also had it done at a familiar doctors office so that she feels more comfortable.

[Chezza61 in reply to Oto3]

Aah, thank you, yes same with my daughters veins, I’m waiting on call back from hospital so will mention this to them when they call x

[Tigertiger7]

My son is 37 and impossible to take blood always try explaining to Drs nurses and healthcare that only real chance of getting blood would be sedation so far they have not agreed with me