Disabled child needs treatment nightmare

[MrsBobDylan]

I'm posting here for traffic because I need advice.

DS 11 has ASD and LD and goes to a special school. He is scared of everything and unless he is in his bed watching his iPad, he is a big ball of anxiety.

He needs a blood test and the Doctor won't prescribe a sedative to him because he's a minor.

Without it he will scream and fight and even two of us won't be able to hold him still for long enough. Plus it is cruel.

What can I do? He is pale, loosing weight and for the last year has had monthly episodes when he feels dizzy, goes limp, vomits and then is out of it for a few hours.

How do other parents with disabled children manage their child's care? It feels as if HCPs ignore the disability and treat ds as though he is just your average NT child.

In contrast, he needs regular dental care and there is a SN dental service which is awesome. But nothing like that for general health. What am I going to do?

Hi, I take children's blood in my hospital so hope I can help.

A few pointers:

1. GP should absolutely refer you to paeds - he should be referring you anyway if your child has ongoing illness.

2. Phone ahead, let us know what you and your child need and we will go out of our way to make sure we can help you as much as possible. (I have taken bloods under a table before as the child was happy!) We can also make sure there is a quiet room ready for you arriving if needed.

3. I deal with a variety of children and I always find it helpful if the parent guides me on what works best - but I won't lie sometimes we do need to just hold the child. For some children the fight or flight is too much and regardless of the importance of the bloods we cannot talk/encourage them into it.

4. if you don't feel comfortable phoning ahead ask on arrival if there is a quiet area - if I see a child who is struggling with the wait or is visibly nervous/upset I will always try to take them in first. Other parents genuinely don't mind in my experience and I always apologise for keeping them waiting. Nobody has ever complained.

5. there should be a play specialist attached to your hospital - they might be able to do a work up beforehand. They are amazing.

There has never been a child we haven't been able to get bloods from - it might not happen on the first attempt but we can always get them to come back & give it a go even at a later date! Also please don't lie to your child, if they ask let them know there is a possibility they may have bloods taken. It is awful when a parent promises their child no bloods today and then I need to do it anyway! Hope this helps!

Thanks @lordalmighty It is helpful to gather suggestions.

I have asked dh to come with me, he is just about the loveliest person in the world but not good at the cruel to be kind stuff.

I have always done the medical appointments because I can separate my emotions from the situation and just get it done. He is the one who said he won't take ds without a sedative but I don't think that's a possibility. The other option is to wait for a paed appointment to finally come up and have the bloods done then. I will defo call ahead and discuss what's available but also talk to the dr in the morning to see if she can get him to a children's ward/child assessment unit.

Last week he had some dental work with gas and air and I was very proud of him but it has taken two years of visits every three months to get to this stage

She suggested someone but the consultant at the Special Needs Dental Clinic said if I contacted the suggested private dentist, he would have to contact her and she could not authorise the private treatment so it couldn’t go ahead. 😡

I’m so sorry, @Rafflesway. That’s so cruel and infuriating.

Massive update you lovely, lovely people!

Doctor useless again, phlebotomy clinic not picking up the phone, so tried the children's ward and they have booked him in for 9am on the 9th! I am popping over today to pick up some Emla cream which I'll put on him while he sleeps. They will try entinox and if that doesn't work they will sedate him.

I would never had known they offer this service without the advice I got on here!

Please accept and from me and little Bob

I am so very grateful, I truly am.

Brilliant, I hope it all goes well glad you have found someone helpful. It’s awful we have to chase to get basic support in place

Really is it just in general phlebotomy clinic? That sounds awful.

Last time I had blood taken at phlebotomy it was hell.

I had a 90-minute wait, the waiting room was jam-packed with people, hot and noisy, and the seats were marginally less comfortable than the average church pew.

It nearly freaked me out, and I'm an NT adult who has no fear of needles etc. An ND child would have found it hellish.

That's a great update.

I think it was these ones

www.gooutdoors.co.uk/15908063/cotswold-chase-snow-boot-15908063

I’m so glad the hospital are trying to help.. I do wish all this stuff was more easy to find out about.

Great news @MrsBobDylan let us know how you both get on. X

So pleased, Mrs BD. Well done everyone.