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?

You haven’t let him down at all. The problem is very much with the system which doesn’t make what is available clear and the fact that it is so much a postcode lottery. There isn’t a clear standard of support offered nationwide when there should be

My now adult DD also has a severe LD and autism. She also has Type 1 diabetes which means full blood tests twice a year. Though she has always tolerated the finger prick blood sugar tests well, the full ones have always been very difficult and now she is an adult they won’t proceed if she kicks off because she is deemed not to be consenting. Plus it’s dangerous. The GP has now arranged for the bloods nurse to come out to our house and do it where she is relaxed, in front of her favourite DVD. We use EMLA cream as well. This doesn’t always work, but it has the last two occasions. Might it be worth exploring this option?

I am a student paediatric nurse, about to qualify, we deal with this a lot of the time. I would ask for a referral for the bloods to be done at the local hospital and speak to the LD team. Ask for LMX4 cream (also known as emola) to be prescribed by GP, it will help as its a topical anaesthetic you can apply before he comes. There's some really good youtube videos tailored towards really young and LD children explaining what will happen. If you speak to the LD team you may even be able to come in and a play specialist go through it with your child first, it's so awful how something so small is so difficult for you both but you know he needs this test so make them work with you. I've spent 3 hours with a little boy with GDD and various medical problems to get him calm enough to have a procedure. Traumatising children unnecessarily is a big concern of mine, I hate it. So please try and get in touch with the LD liaison team at your local hospital, or even your medical team he's under for autism as they will most certainly have experienced this before and may have ways of dealing with it that's different from the GP. Unofficially, I know some parents who have given a slightly sedating antihistamine before procedures, but again this would be something to discuss with the medical professionals. Good luck OP, you're amazing, and I promise you there are people who will be used to this who can offer advice and if necessary medication.

@5zeds I am seriously impressed that you have managed to implement snow boots!! Do you mind me asking if your child has the crocs one or a different brand?

Thank you all again. I need to speak to the dr again I can see that. I just got so excited that she was listening and acting on my concerns that I didn't think about the nightmare logistics and impossibility of the phlebotomy clinic.

The last time he had treatment in a hospital was for ophthalmology and we had four hcps and me pinning ds down which was so wrong.

I have used social stories fairly successfully in the past. The only one which went slightly off plan wasn't laminated and ds was angry and ate it

I will ask his school to make him up one for having bloods. He is such a panicker - out oven temporarily broke yesterday and there was the chance that his fish fingers would have to be cooked on a plug in grill. He kept asked me about it every 10 minutes and reminding me that he likes his food cooked in the oven

He is such a kind and funny boy and I am sad to see him pale and droopy. I don't think lockdown is helping him and can't wait for him to get back to school on the 8th March (as I'm sure all parents are!.

Thank you again, you beautiful people!

I had to giggle at eating the social story. The first copy of any one given to DS tends to be shredded, once hes taken out his initial frustrations on the first on, we might get to look through the second copy.

Interestingly DS has coped much better with his appointments in the main hospital than those in the children's. Boring plain walls and adults sitting quietly on thier chairs suits him rather better than the playroom type waiting area at the children's. Once we noticed I was much more forward in asking for a quiet place to wait.

Does your hospital run any kind of passport system. We have a form which can be filled in with the child's needs that's attached yo the front of thier notes, so is supposed to be the first thing anyone working with them sees.

Dd was petrified the first time, had to leave without it being done, but we did lots of prep, got a fake needle and tourniquet from our gp, numbing cream etc and teddy had quite a few "blood draws" before the appointment. They scheduled the lovely young (long blonde hair) dr to do it because we knew dd liked her, she had an amazing rapport with youngsters with sn. It worked. She's very good now (young adult) and coped with extensive interventions alone last year, she's coping just about with living in halls too (every milestone has been approx 3-4 years behind though)

Can you contact your local children’s learning disability nursing team? My son has Down syndrome and is needle phobic. He was referred to CAHMS and had some sessions with a psychologist which helped somewhat, he was also referred to the children’s nursing team who arrange to take his blood at home as the whole rigmarole of going to the hospital, numbing cream, waiting around was causing major anxiety. My son is nearly 18 now and finally this year had a blood test at the hospital (in the children’s ward). Using freeze spray rather than numbing cream also helped as he hates creams and plasters.

Has he seen an occupational therapist at all for his sensory needs?

Good luck.

PolkaDotBalloon. I did ask my own private dentist is she could recommend someone who offers sedation and could possibly treat our dd. 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 asked her what would happen if dd lost the tooth and she shrugged her shoulders as apparently dd wouldn’t be a suitable candidate for an implant which I feel would be true. However, the chip literally just needs bonding but she says we have to wait until dd needs more serious treatment as, in her opinion, the chip is just cosmetic.

Interestingly though, her subordinate stated in front of her, “I can well understand you wanting it repaired Mrs. Raffles as I would definitely if it was my dd.” 😡

Sorry, didn’t mean to hijack the thread but this is just another example of how D.C. with autism, LD’s etc. are treated so differently.

We have done one of two things (through the Paed) either pre-booked in one of the Phlebotomy clinics at the hospital, where you have a time and two members of staff or the Children's Ward. Actually dd was better at the clinic, weirdly. She is 11, has Down's Syndrome and possible ASD. I completely agree about the waiting, we had a recent doctor's appointment and a child was screaming in another room and she totally lost it.

@LunchWithAGruffalo I learnt two things about social stories that day - first was they have to be laminated and secondly If it's bad news I should sit far enough away so I don't get thumped

We have just had some amazing news and heard that dh has been promoted at work!!! I left my career two years ago to care for ds and we have been struggling for money so this is amazing.

I feel so much more positive than when I started this thread and am going to make some suggestions when I speak to the gp in the morning.

@MrsBobDylan, oh yes, get a few positive stories in there too, otherwise they know it's going to be "bad news"

My DS hates anything laminated, the slight reflections bother him and make it more difficult for him to read. Lots of things get shredded because of this.

You might want to come and join us over on the pub thread in the SNChat section. These sort of conversations tend to come up a lot, along with a lot of virtual

@Rafflesway that's appalling and you are right, it is an example of people with LD being treated as second class citizens.

My LD son is treated so differently to my two other NT sons. I once had an ophthalmologist tell him if he didn't stop swearing during the eye test that she wouldn't treat him. He was 7 - I was astonished that she thought he wasn't cognisant enough to choose not to swear. At that point he wasn't toilet trained and had no idea that he was seven, where he lived, what his surname was...

I do feel society doesn't understand LD. DS is largely oblivious to the world. What he does know of it, he's not bloody interested in!

Our DS has autism and severe learning difficulties, he also has complex health needs that mean he needs blood tests frequently.

I would recommend phoning the Child Assessment Unit at your local hospital. Our lad has seen the same, excellent phlebotomist for years.

The CAU are well used to supporting children with additional needs. I phone as we arrive to check they are running to time so there is no waiting. Have Emla and tegaderm at home so it has time to work on the way to the hospital. Bloods are taken from his feet as he is super sensitive to having his hands touched. He has a blanket on his lap and it distracted as much as possible.

Good luck!

@LunchWithAGruffalo I will do that - I'll bring a virtual bottle with me! I do need to talk about it a bit. I just offloaded to dh who developed a headache and had to lie down for a nap

@SFCA that's really useful - have made a note of the child assessment unit and will ask the dr to refer us. Hopefully she'll just be so relived I'm not asking for sedation she be delighted to refer him.

Another vote for speaking to the loca children's ward, our one is great for kids blood tests and older children with SEN or anxiety. Ours prescribe emla cream for us to put on at home before the appt, lots of distraction methods and patience, they also will give gas and air if really necessary. Good luck, it's so tough.

@MrsBobDylan. Firstly mega congratulations on your DH's promotion! Don't you find as a parent of a dc with disabilities/LD's just the smallest thing adds so much light to your life? A promotion is way more so a well deserved celebration is called for! 🥂🍾

I just find it so wearing fighting for what my dd needs all the time. We are not rich but financially comfortable and are more than happy to pay as we understand the NHS is overstretched and especially dentistry. This woman just seems to have taken a dislike to our family! She has failed to arrive for loads of appointments to see dd - dd lives in a supported living centre who has special arrangements with this clinic - and when I mentioned paying - honestly thought her refusal to treat was down to budget - I was seriously rebuked.

I was so tempted to ask "Who do you think you are talking to" as she was so rude but of course again, when you are told there is no alternative person allowed to treat your child, you have to suck it up.
I would NEVER have treated a client in this manner during my business life. 😡

Call her bluff, @Rafflesway! You may find that is not true and at the very least if she's that horrid, all the other dentists will know her by reputation...

Hi MrsBobDylan,

I have a son with severe LD and autism. We have used EMLA cream before a blood test and it worked well. We had to ask for this after a nurse tutted and rolled her eyes at him when she stuck the needle and he screamed .
This despite me ringing ahead to explain his condition . I was so angry with how he was treated, they didn’t even suggest emla cream first.
Also to the poster with the dental issue, my son also needs some cosmetic dental work and the dental consultant was very dismissive and said it couldn’t be done . No real reason given. There is discrimination there I think. I have been asking his psychiatrist to note it and to advocate for him, and his social worker. Enough noise from different directions may put enough pressure on the dental department

@Rafflesway try contacting the Eastman Dental clinic if you are able to have treatment in London. They were fantastic with my DD with SLD and autism when she broke a tooth aged 3. They definitely didn’t contact her dentist for permission before treating her.

They specialise in special needs dentistry and our experience was 100% positive - my DD was really skittish about having her mouth looked at due to how rubbish the NHS dentists had all been by the time we landed there but she wasn’t spooked at all by them.

@katrinawaves great idea but unfortunately we are about 300 miles from London and definitely no way of getting dd there. ☹️ (We have to have 2 carers with her just for us to take her out in the car a few miles as she also displays challenging behaviour.)

The consultant hitler failed to turn up for dd's last appointment - no surprise there - and then covid hit so haven't heard a peep from her or the clinic since October 2019!

I am going to wait until life is pretty much back to normal - hopefully dd's teeth will still be as they are now - and then investigate further.

Reading all these posts it always helps to know we are not alone with medical difficulties. These practitioners have a knack of making you feel it is you and no-one else has these problems. 🙄

MrsBob I hope you are claiming DLA (or PIP I think they call it now) if you are struggling for money. You should also be entitled to Carers Allowance.
Good Luck for the blood test. Hope it goes ok.

We had to go to the hospital for my sons (he was 11). They tried and failed to get blood so rescheduled and got the play therapist in.
This also failed.
They then decided they could manage without bloods and not to stress him.
I think at that point if they needed it desperately they would have offered sedation

We know what's going to happen, unfortunately sometimes medical professional need to see it happen before they agree to the plan you wanted.

@walkrefuser that's what I would like people in charge to know about - that someone with LD was treated like a nuisance for being scared to have an injection. It's not right is it?

I am still struggling from this summer when the site owner where we have a static caravan (very basic, old static, no bathroom, basic site facilities etc) became obsessed with ds making 'a mess' on the toilet. He have only started using the toilet for number 2s a year before which we explained and apologies for. We went in after him with wipes to check and then one day he accused ds of breaking the toilet seat in the disabled loo. It was only when I said that was impossible because we don't have a radar key that he shut up.

One holiday in France we queued for an ice cream for 10mins and ds was making a low noise in anxiety and when we got to the front the guy looked straight past us and served the people behind.

Once during an ophthalmology appointment ds was crying and very scared and the consultant said we could go now because he was getting a headache. Pompous bastard.

On the opposite side of the coin, ds once has the most almighty meltdown in a swimming pool reception. He was grabbing swim goggles and floats off the display and lobbing them at the people in the cafe and yelling "fuck you Mum, you're a bitch". I apologise on our way out and the reception made a point of telling me that ds and I were always welcome and she looked forward to seeing us soon. How faith-restoring was that!

People can surprise you!
But I think I've steadily reduced my / his world down , restricting it to people and places where he will be accepted ( special school , limited family members)
I don't know if I do it for his benefit or mine.