tips on helping a non verbal toddler deal lots of painful tests and hospital

[zebradebra]

Hi.

My DD is 16 months old. She has been in and out of hospital since may. She has a syndrome that is causing her develpoment to regress. I am desperate to now how i can help her deal with lots of painful tests, and stays in hospital. Her world is changing and i am desperate to make it easier for her. I am desperate to help her.

Thanks in advance.

tbh there isn't much point in doing prep stuff - just make sure you have lots of familiar things with you at the hospital/ appointments etc - favourite toys/ snacks/ drinks etc. she isn't likely to understand a great deal about what is going on, so it will be hard for you (as well as her) if it is painful - distraction used to work for dd2 to a certain extent. have a bag of 'new' or surprise toys that you can grab a new one - or make good use of the play room or toy library. try and keep a routine if you can.

tbh you just have to get through it, and make amends afterwards (dd2 used to forget pain etc quite quickly, although developed a complete phobia about hospital beds. we used to only put her into the bed after she had been anaesthetised - and she would wake up and scream blue murder and try to climb out when she woke up) try and focus on why you are doing it (presumably to get answers about what might help) to get you through. and cry and mainline coffee every time they ask you to leave the room.

be kind to yourself - little ones have very short memories and sometimes we have to trust that the med staff have their best interests at heart. bigger kids are sometimes more difficult as they are stronger - at one point it was taking 5 staff and me to hold dd2 for sedation.

make sure you are getting some support yourself x

there's also some merit to asking for 'time out' if the appointments and tests get too much (providing they aren't time sensitive). sometimes parents do need to relax and take some family time away from hospitals and medical professionals, and just 'be'. regroup and get some energy back.

thankyou MWITA. I really appriciate your reply. DD is due for an Lumber puncture soon and i can imagine we will be in a simular situation with holding her down

im like a rabbit in the headlights at the moment.

there are a few posters around who i know have had lumbar punctures etc - i'm sure they'll be along with specific advice for that scenario.

it all feels like a runaway train, i'm sure. try and take some time out and do regular stuff as far as possible, too.

Lots of good advice from madwomanintheattic

From my own experience with non verbal sons and tests over the years, I'd add:

• if you take food and drink, make sure you keep it in a seperate bag where your child can't reach it. She may need to fast before some tests, but as soon as the tests are done, you can whip out her favourite food/drink

• try to prepare yourself to be involved in holding her down (that sounds awful) but depending on the tests, it does happen. For example, trying to get a canuler (spelling?) in if needed, or trying to get her to swallow sedation medication.

• if pain relief if needed, my sons absolutely would not take the hospital Calpol (it's a different colour), so eventually I learned to bring my own and only gave it with the nurses permission.

• there was a thread in SN about lumbar punctures. A quick search should bring that up for you.

I hope I'm not coming across as too negative. Children really do forget quickly when it's all over. As as a mother, you too, get used to doing what needs to be done and it get's less upsetting.

Hope some of this helps

Not really much help on most of this as my dd was v small when she had her blood tests etc, but the reference above to a canula (not sure of sp either!) made me remember how bloody awful this procedure is.

Last time they tried to do one on me, they poked the needle in one side of the vein and out the other trying to site the thing - twice. It made me feel sick, so I asked if the next time they tried I could have a jab of local anaesthetic, which they readily agreed to.

It was brilliant, took all the stress out of having it done, so I guess if you can possibly get them to give your little girl local anaesthetic before any procedures, it's worth asking?

Sorry you are having to go through this, when my dd went for an MRI I cried and cried, even though she wasn't in pain, just had to have earlplugs strapped on her head.

discobeaver Interesting. My boys never got a jab of local anaesthetic. They got a bit of numbing cream on their hand, which was then covered in a transparent cling-film like thing and wrapped with gauze prior to an injection. The gauze was to prevent them removing the cream and covering. The nurse used to say she was wrapping their hand up to give them a 'boxing glove' lol.

They still screamed the bloody place down when given the injection or canula insertion!

It's just a grit-your-teeth-and-bear-it situation imho. There's only so much you can do.

I think you just need to be there to dispense lots of cuddles. If she is staying in hospital make sure that the staff operate a "safe bed" method - which means that they don't do anything nasty to her while she is in her bed - so that she will realise it is a place of safety. Most childrens wards will take them to a treatment room anyway but may just need a gentle reminder sometimes.

We always found the "magic cream" (numbing cream) was more traumatic for ds - it can make the veins harder to find and they would end up digging round for ages and then using a different one anyway; also as he got a bit older he knew what was coming when they used it so would be in a dreadful state; much easier all round just to get it over quickly.

Hi,

My DS is now verbal but wasn't when until he was about 3.5yrs.

He has had many many prodcedures/ hospital admissions ( 35 admissions in 2009!) and has very poor veins so getting bloods/i.v.s are a real trauma for him.

The most important thing which we learned ( and came from the psychologist) was to be honest. If something is going to hurt tell her it will hurt, but that it will be over soon ( if it will be over soon). This really helped DS to trust what was being said. Often docs would come and say.......just looking no needles, but he would be hysterical because he knew that after looking the needles would come and he's be stabbed at least 6 or 7 times before success or they gave up..........that sort of thing.

The other thing which is better now is that due to his real fear ( docs say phobia, but phobias are irrational fears, his fear is very rational - he knows they are going to hurt him!!) he is sedated with Midazolam if he needs to have bloods done or any other invasive procedure. Our team are really good about this and understand that he needs this in order to allow him to 'forget' his traumatic experiences.

Hugs xx

starfishmummy I really agree with you about the safe-bed thing.

We also gave up using the numbing cream as it does make the veins harder to find. My son has had treatment for leukaemia for 2 years. My BIL holds hime down whilst the chemo is injected. The numbing cream just doesn't help in this instance. The doctor needs a good visible vein. We've only got 1 year to go.

shaz298 I think that's a good point to make. I told my sons the same thing when they were non-verbal, until they got verbal at about 3 or 4 years old. "It will hurt, but not for long. It'll be over soon".

My son now generally says "Mummy, wipe my tears" before his treatment even starts.

I stand there, armed and ready, with a tissue, no coat on (because I get stressed and sweaty whilst he's having anything done) and just dab away. Two minutes later, he's asking for crisps and chocolate.

It's a fucker. But's it do-able, and you will get through it OP.

Tales is right - I think the kids cope much better than we do - it's amazing what effect a bravery certificate or sticker has on ds!!

He's 13 but looks much younger (and is younger mentally) and the phlebotomists always feel sorry for him. After his last blood test his stash was a bravery certificate, lolly, some stickers and a macdonalds toy from their stash!!

dd2 has a whole collection of teddies - seemingly every coffee shop in the country donates them to hospitals for kids undergoing procedures...

agree with the discussion re sedatives/ anaesthetics - sometimes it can take a few attempts before you find a method that 'works' - dd2 had so much work as a tiny that they have run out of places they can get a canula in - there's one place on her foot that is still possible, but they can't do it whilst she's awake (and it has to be removed as soon as she wakes up or the world ends...) so we have to use oral sedative or a mask until she's out or v dozy, then they can pull out the big guns.

(and would second the 'take your coat off' advice )

have never heard of the 'safe bed' theory. makes perfect sense - i really wish someone had told me that 8 years ago! it would have saved a lot of angst. at one point even if we visited the gp we had to ask for a room without an examination couch, as she connected the two things in her head. even if we were only there to get anti-b's.

good luck op. let us know when the appointment is and we'll hold your hand x

Forot about the safe place thing....... Ds's safe place has always been his pushchair/wheelchair as sometimes it is unavoidable to have things done in bed. Mummy's knee isn't safe as often she ( or Daddy ) have to hold the little one whilst whatever procedure is needed, takes place. This is definitely a biggie.

The other thing I forgot to mention earlier is about refusing anything which is non-essential in the night. Example - DS had a central line in, they thought it was infected and needed to come out. They gave extra fluids and extra antibiotics in case they couldn't get another line in. Great. No docs around for hours. 3 am they come , wake me to tell me they are just going to try and get a line in..........my response,'No way. He has sufficient fluid and antibiotic cover to last until morning. They made sure of that before removing the central line, so you can come back in the morning to try!'. I was also advised to to this by the psychologist. Docs do things at 3am because it is convenient, not because it's best for the child... Don't be afraid to say,'No' to the docs for things like this or other silly things.

Be particularly wary in August and February. It is entirely possible the doctor you are speaking to is in the middle of their very 1st day! If you're not confident about their decisions, ask for a more senior doc to come and have a look.

I'm sure there are loads more........

my days.. glad i asked! fanbloodytastic. i am really new to all this, so this advice is gold. Thankyou!!!

DD has had the MRI and lots of canulas in her foot. Going to get shoes fitted is a nightmere these days. She also had video telemetry for 4 days and now going to the hairdresser's is awful and impossible -we tried for the first time at the weekend as she can hardly see bless her. She wont let anyone near her head or feet.

I am now wondering what the fall out from the lumber puncture will be That said, the tips on here may help with some damage limitation. The "dont lie" adive sits right with me as does the safe place especially as we are in for the long road and dd will no doubt be in and out of hospital possibliy for life [fecking fecking hell emoticon]

Hi zebra sorry to hear about your dd. There was a thread on here not long ago about lumbar punctures and many of us mums said that we chose not to hold our dc down when they had the procedure so don't feel that you have to - the nurses will be more than happy to and it does only take a second. I cried for longer than my dd did wen she had one x

zebradebra good luck in what you and your DD are going through.

One of my sons also now has a hang up about his feet. Shoe shopping brings out a tantrum every single time. As for haircuts.....I can say I congratulate my VERY patient local hairdresser on being able to cut the hair of a consistent moving target! He rocks and rolls and somehow she manages to make him look decent.

Take care.