If your child has a large head or low muscle tone you may find that positioning them can be
a challenge. You may also be asked to have your child sleep at an angle either to help with
shunt drainage or reflux. This page contains some helpful hints and products to help you out.
The first items on this page are for infants and then work their way up to
older kids. You will also note that I do not share actual links to the
commercially available products. Companies change their web pages all the time
and my links all lead to nowhere within a few months. Instead I will give
a link to the manufacturer's main website or I will simply encourage you to
Google the product name.
Receiving Blankets
The first hint is for an item that is easy to find in stores and is relatively cheap. These are the
small cotton receiving blankets that you can buy at Walmart or Target in packages of 5 for $10 or so:
These are very useful to roll up and place under their neck and over your arm when you hold your child. It
keeps the heavy head from moving into a position where the chin is touching the chest, which
makes it difficult for the child to breathe.
Below you can see Miss Claire modeling how this works:
You can see the pink and white striped blanket rolled up and supporting
her neck.
They are also useful for putting around their heads or
under their necks in strollers and elsewhere to keep their heads
in a comfortable position.
Leckey Early Activity System
Above you see baby Mark using the Leckey Early Activity System in various configurations. This product
didn't exist when Owen was an infant but I wish it had. It can be used to keep a child's head in
midline with their body while working on their back, as a seat, and in a sidelying position. It can
be configured in so many ways that I can see it being useful for almost any needed position. This is the
sort of product that costs enough that you will most definitely want to get your insurance to pay for it.
Ask your physical therapist if this product is appropriate for your child and if it is the therapist will
be able to help you to obtain one. Visit
www.leckey.com for more information.
Sleeping Wedges
A child may need to sleep at an angle either for shunt drainage or because of reflux.
If your doctor has recommended this then these items may be useful.
Note the towel rolled up under the baby's neck, another instance where the
receiving blankets mentioned above would be helpful.
Res-Q Wedge
This wedge has two sides. The side shown here has an indent so that the baby
can sleep comfortably on their back. You can also flip over the wedge to a flat
side for the child to spend time on their tummy if that is need. There is a
sling to hold the child in place. Visit
www.resqwedge.com for
more information. This company uses many other resellers who have better websites
so just Google the Res-q wedge to find out more. The Res-Q wedge
is FDA approved as a Class 1 medical device and therefore it
is likely that you will be able to get your insurance to pay for it
with a bit of help from your doctor.
Tucker Sling
The Tucker Sling can either be purchased with a wedge, as shown in the
first picture, or so that it can go over a mattress with a different wedge
underneath. Visit
www.tuckersling.com for
more information. This company uses many other resellers who have better websites
so just Google Tucker Sling to find out more. The Tucker
Sling is also FDA listed and they also claim that they are covered
by many insurances. If you don't have insurance, the Tucker
Sling is about half the price of the Res-Q wedge and therefore
might be a better option. Please be sure that if you use the version
that is meant to hang over a mattress that you put the wedge
under the mattress to keep your kiddo safe.
Homemade Solutions
I don't know that either of the above products existed when Owen was
born, if so I didn't know about them and had to make my own. If you don't have
insurance or can't afford the commercially available items you can build your
own wedges. In general I do recommend the commercial solutions
because the slings will keep your child secured safely, but
if that isn't an option then below is what we did.
I had a roll of foam laying around from an old project. I cut the foam into
layers, each layer just a bit smaller than the one before it. I then glued
the layers together. Then I topped the whole thing with one solid piece of foam
and put a thick ledge along the bottom.
I then covered the whole thing with a baby blanket:
Owen's feet would hang over the lip on the bottom and the lip would keep him
from sliding down. We used this platform during the day to keep him elevated.
I am still not certain if the commercial products shown above would have worked
for Owen during sleep in the very early months though. Owen's head measured 52.6 cm at
birth and only went down to 49 cm after shunting. It was so big that it would
often slide down on the wedge or when the head of the hospital bed was raised and
cut off his airway during sleep. To solve this problem
the physical therapist at the hospital built Owen a custom foam thing to
keep his head positioned correctly to keep his airway open.
She took a standard abduction wedge and carved out an indent for his head
and his body, leaving behind support for his neck so that his airway would
stay open. We used a bendy-bumper (found all over pediatric wards in
hospitals) for his little bottom to rest on so that he wouldn't slide down.
The picture on the right is Owen relaxing in his foam lounger.
While we were in the hospital the back of the bed was raised to get the angle
we needed. Once we were home I put it on the wedge that I had built at night
to keep him safe. Please be very careful with any homemade solution
and be sure that the child cannot become trapped anywhere or
can slide down in such a way that their air supply can be compromised.
Special Tomato Soft Touch Sitter
The Leckey EAS is for infants. When they get a bit bigger you may still need a way to help them sit up. The
Soft Touch Sitter is recommended starting at about a year old, and they go through
adult sizes. There are other
brands of these types of seats, but the Soft Touch ones are the nicest I have found
simply because they are, well, soft. You can get them either on a base
that you can roll around:
Or you can just attach them to a kitchen chair with the provided straps so that
they can sit at a table or use a tray:
There are honestly hundreds of different products out there
for helping to support your child in a seated position and I can't
cover them all here, so I am just choosing a few that either I have
used or that seemed particularly well suited to the job. You
should definitely ask your physical therapist for recommendations.
The Soft Touch sitter is a nice compact solution that is easy to throw in the
car. However it may not be flexible enough for some people's needs and if I had
known that these existed, I probably would have chosen one of these to be honest.
If you need more options there are several seating systems available.
Everything on these seats is configurable including seat depth, seat width, back height,
footrest height and more.
These seating systems
often have multiple bases meaning that the seat can be attached either to a stroller or
a high-low base. A high-low base is used indoors and its height is adjustable so
that they can be positioned correctly in various places. These seats also have chest
harnesses, head reads, lateral supports, trays, abductors and lots of other options.
The Otto Bock Kimba is a very popular seating system.
Below are Matthew and Elisabeth
modeling it on the high-low base:
The Kimba also has a stroller base and that is
shown on the Mobility page link shown on the left menu.
Matthew's chair is now configured with a Whitmyer headrest which cups the head nicely
and provides a bit of extra support. Here is a closeup picture of
one from the manufacturer's website:
The Leckey Squiggles
Seating System is a brand new seating system that looks promising and here it is on its high-low
base:
I don't know anyone who has it yet so I don't have any pictures with kiddos in it yet.
I'm including it here because Leckey is known for making comfortable products and I probably
would have chosen it if it had been available when Owen was younger. If anyone has used
this product and can provide any info or pictures, please send me an email
here. The Squiggles is also available
on a stroller base which is shown on the Mobility link shown on the left menu.
Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.
