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Hello everyone,
Some of you may have received a text message from NHS Coronavirus Service about ‘shielding’ (staying home for 12 weeks). NHS England wants to ensure no-one at high risk of coronavirus misses its vital health advice. As a result, some patients who are not at high risk have also received that text message. Follow the advice of your own transplant team and check our full up-to-date coronavirus guidance here: www.anthonynolan.org/coronavirus.

Advice for parent

Hi I'm new to the forum. My 16 month old little boy will soon be undergoing a BMT and as you can imagine the conditioning treatment beforehand is going to be challenging. He is not yet walking but cruising and very active. How do you keep a toddler still, entertained whilst there is so much going on? Trying to keep him safe from banging his head or falling over is proving hard as all he wants to do is crawl or walk.

Comments

  • Hii there and welcome to the forum.

    I'm not sure we've had anyone yet with a child so young, but hopefully some of our members may have older children that are active duiring transplant with similar challenges, as I'm sure the treatment regimes are just as frustrating for them as they want to be up and about.

    Perhaps somebody can shed some light on how to keep a youngster calm during treatment, even if it was for a different reason that undergoing a BMT. I guess he is going through the same things that any child will encounter as they become more mobile but it's likely that his treatment may make things more difficult and he is parhaps less stable as a result?

    The Anthony Nolan team may also have some advice based on experience of a wider variety of ages?

    How is your son coping generally with the treatment he is undergoing? It must be very traumatic for him and for you as his parents to go through such an ordeal at such a young age. I hope he is handling it well.

    All the best to you and your son,

    Steve
  • He has been diagnosed with very severe Aplastic Anaemia so treatment has involved blood and platelets transfusions, bone marrow biopsy and Hickman line. We are having issues agreeing dates with the donor but hopeful he will get the transplant within the next 4 weeks.

    I haven't seen anyone with experience with a child so young and I'm really not sure what to expect. He's very active but I am thinking he will be very tired when the chemo starts.
  • Hi Eleroo

    Both my children went through transplants last year and my youngest was 1 when she went in, so was the closest to your little boy's age. She'd just learnt to walk before going in and was/is an extremely active child so like you, there was concern on how I was going to entertain her throughout! Here are some of the things we did, which you might want to do:

    - Speak honestly with one of the hospital playworkers about your concerns and ask them for their suggestions. Also, make sure you have a dedicated playworker down to visit a few times a week, for the duration of your hospital stay.
    - While you're not in isolation at first, make the most of regular short walks around the ward throughout the day to break up the time spent in the cot. If your little one is cruising then a walker from the ward's playroom would be great to use. Our ward's playroom had those big car toys that kid's sit in while being pushed around (with a bit of practice we learnt to push the drug stand behind the car!).
    - Favorite dvds/films/nursery rhyme clips at the ready to play when your child's in their cot getting bored/frustrated. We used one of the hospital's portable dvd players- which we had throughout our time in isolation too. This was a great way of showing clips our daughter liked, at any time of the day (and the dvd player wasn't too bulky so could be placed in her cot)
    - Snacks (this is particularly useful at the start of conditioning, when they still feel up to eating)
    - Puppets! For us, this was the best toy decision we made. Pre- transplant I bought 4 or 5 small cloth puppet from a website so that during my daughter's isolation stay, she still had characters to interact with (when she couldn't interact with people!). They were a great hit and because they were washable, they could be put in the required daily washing. The puppets would help with game play, distract her when upset and acted as a comfort toy to cuddle up to as well.
    - Favorite music to simply wiggle about to, even if they have to stay in their cot
    - A small wipe-able white board and pens were used to draw with during our stay
    - We had a variety of cheap back up toys to whip out when needed. These were often basic toys from pound shops/the works etc and were things like small wind up toy, silly key ring toys (from shops such as Claire accessories), cars toys etc. A new cheapy toy would be brought out after a difficult procedure/experience or when they were just plain fed-up.
    - We found that our daughter was much more happy to play in her cot if we brought down the bars of her cot on the side we were sitting at- so it felt to her like we were all on the same level during play rather then reaching over.
    - Mats from the physio department were kept in our room and put down in the room (with clean bed sheets put on top) for when she did fancy a play (we did this a few weeks post transplant when she was connected up a bit less and had some more energy).

    It's also worth noting that your child is likely to go through a temporary period of time where they're a bit weaker- when they won't want to play as much so will therefore need less entertaining.

    Entertaining in general is tricky business, so there will naturally be times when you feel like your entertainment skills were rubbish (and exhausting) and other times when you feel like super mum after great times of play! Don't be too hard on yourself. You'll both adapt and get into the swing of things as the weeks go on.

    Wishing your little boy all the best :)
  • That's really helpful thank you, love the idea of the puppets and I think Freddie would like them.
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