Best Beds for a Child with Special Needs and Feeding Tubes

Growing kids takes so long and yet it happens so quickly!  As soon as I got used to my child’s at home bedtime routine and was comfortable in what it took to get my daughter to sleep at night, she turned into a toddler!

Transitioning a special needs kid with a feeding tube from a crib to toddler bed should be a normal milestone.  Unfortunately, it is not easy to make this transition from a crib to a toddler bed with more freedom to move around.  Let’s go over some different mom recommended solutions and beds for special needs children.

How to Keep a Special Needs Child in Bed

Once a child is sitting, crawling, or even walking it is much harder to keep them contained.  My daughter took a little bit longer than her brother to figure out how to hook her leg over the edge of her pack-n-play.  As soon as we saw that she was figuring out how to climb and was at risk to fall out of her crib, we knew that it was time to find a better place for her to sleep safely!

What is a Safe Sleep for a Toddler?

Typically speaking, the rules of safe sleep are much easier for a toddler than they are for a baby or an infant.  Even though a lot of us medical moms, have had to weigh the benefits of safe sleep rules versus what our child actually needed.  For instance, my child had to sleep on a wedge from an early age due to severe reflux even though wedges and pillows are not considered safe sleep for babies.

The main points of safe sleep for toddlers and older kids are basically that once they are 35 inches or taller, actively climbing, or need more space that it is time to move out of the crib or pack-n-play.  In general, once a child is 18 months old the danger of SIDS is less, and they can sleep an any position that is comfortable.

Of course, you want to make sure their sleeping situation is away from objects with ties and strings like blinds or curtains, but that is difficult if your child is getting overnight feeds by a feeding tube.

There are many ways to help a child not get tangled up in their medical cords and tubes:

• aim the cords or feeding tube extension away from their head and body (feed the cords down towards their legs or feet, and place IV poles or backpacks at the foot of the bed not at the head of the bed)
• If your child is not a chewer, you can use insulation pipe covers or pool noodles to prevent the wires and tubes getting wrapped around the child. (Be aware that these foam type tubes will break apart if bitten or chewed, and this can be a choking hazard)
• If you child rolls and flips around a lot while they are sleeping, you may want to see about lessening night feeds and doing more day feeds.

 Depending on each child’s needs and conditions, safe sleep can look very different. We rounded up a couple different options that have been tried and worked for others.  Some children just have a feeding tube, and other’s need oxygen support, have a trach, have autism or development issues, or other medical requirements. 

DIY Special Needs Bed for a Toddler

After looking through so many different options, I realized that I could not make a decision yet and that I needed more time.  Unfortunately, my daughter also figured out how to start climbing the corners of her crib.  I was pressed for time, and decided to use what we had on hand to make it work for now.

When we first brought my daughter home from the NICU, it made the most sense to set her up in the corner of our living room.  There wasn’t enough room in our bedroom and the constant alarms going off was not helping my husband get a good night’s sleep.

We finally figured out that being in the living room gave us easy access to the refrigerator, sink, and didn’t have carpet to clean.  This set up may not work for all families, but it worked well for us.

Ideally, we wanted to move her to a toddler bed situation in a shared bedroom with her older brother, but until we knew what bed we were going to use, it made the most sense to leave her in the living room.

We took down the pack-n-play that she loved (she was scared to death of her wooden crib so she refused to sleep in it).  After assessing the corner area that she was used to, we realized that we had a metal baby fence that could cover almost the whole area.  The fence is great because it has a lock she can’t work and it is tall enough that she can’t climb it.

We wanted to get her used to a traditional mattress, so we took the toddler mattress and placed it directly on the floor.  This gave her a few feet of floor space, but overall it is mostly just a bed with fence.

When we showed her the new bed and her new space, she loved it!  It was like her own little personal space.  She immediately let everyone know that only she was allowed to be in it unless she invited you.  I think it took a few hours to convince her to come out that first day.

There was an outlet that was near the bed so we made sure to add covers, but the old cable outlet was more difficult, so in a pinch we covered it with duct tape, until we could get a cover.

Now this was a spur of the moment idea to solve our sleep issue right away, but it’s actually turned out to work pretty well!  When she has overnight feeds, we simply hook up her feeding pump in a backpack and place it on the floor next to her.  At times we used a hook to connect the backpack to the fence, so it didn’t fall over and set off an alarm.

Our main concern was that if she woke up in the middle of the night, she would get up and drag her back pack behind her.  I was terrified that she would either hurt her stoma or pull out her g tube.  Even though we used a belly band, dragging a back pack behind you will probably still cause an injury.

She was only about 20 months old, so she was not understanding the concept that the bag had to go with her wherever she went.  It’s not really reasonable to think that she would wake up, put on her backpack, and then come find her parents.

This combination of a tall fence and toddler bed worked perfectly and was very cost efficient since we already had these items at home. If you want to recreate this at home, you can find everything on Amazon!

Affordable Special Needs Bed

If the mattress on the floor option does not appeal to you and you would like you child up higher, there are affordable options for that too! 

The easiest solution is to add bed rails to an existing toddler or twin bed.  They are fairly inexpensive and can be added to any standard bed.  I like the ones with the breathable mesh so you can still see through it, but you may find a more solid option better for your needs.

These rails can help to encourage a child to stay in bed while connected to overnight feeds, but there will probably be gaps so your child could still get out of their bed.

Another affordable option is to get a daybed with high sides and instead of the open side facing out, you put the open side towards a wall.  This basically creates a larger crib-like setting with a twin or full size bed.

The great part about the day bed option is that if your needs change later on and no longer need to discourage your child from leaving the bed, you can always turn the bed back around.  

No specialty bedding or mattress is needed for the bed rails or daybed option, so this adds to these being the more affordable option.

If your child is a climber or very clever and will still escape these options, you may want to go with an affordable way to enclose your child and keep them safe.  This next option is aone part affordable and one part DIY since some assembly will be required.

Ikea Kura Bed Hack

There are 3 main items needed to create your own enclosed bed on a budget.  The first is the Ikea Kura reversible bed and it typically runs about $220.  This bed can be used as a top bunk type of bed or in the reverse it is a bed with high open rails.

This bed does not come with the mattress so you will have to purchase that separately.  You can use a twin size mattress with this frame and you can find them on amazon for less than $200.

I suggest going with a water-resistant mattress with a vinyl cover similar to a crib mattress because “feeding the bed” is a common occurrence with tube feedings overnight.

The next part needed is a Safe Night Net that is made by an Australian company that hand makes this add on specifically for the Ikea Kura bed.

It is basically super strong mesh sides that are easy to install to the Ikea Kura bed to create an enclosed bed.  The sides are washable and have an easy access zipper.

The safe night nets typically run about $289 and right now includes free shipping from Australia.  Since this will be shipped internationally, their website warns that it typically can take 2-3 weeks to be delivered to the US. (The free shipping is available to Australia, New Zealand, the US, Canada, most of Western Europe and most of Asia, if you are outside of these areas, you will see a charge for shipping).

The total cost of this Ikea Kura bed hack will typically run about $710.  The only downside to this plan is that the Ikea Kura bed is sold out a lot in most areas.  If you are willing to travel a few hours you may be able to pick this up in a nearby store, because delivery options are not always available.

Pro Tip: If you are interested in this option and it is currently sold out near you, use the “Notify me” button on the Ikea website and they will email you when it is back in stock.

Travel Bed for Special Needs Child

 This next option qualifies as not only affordable but also a bed that can travel with your child.  There are times that you want to go on vacation or spend the night with grandparents, so you will need an adaptive bed option that can travel with you.

This bed starts with a large playpen from amazon that is basically an oversized pack-n-play.  Most of the ones I have found are typically 26 to 27 inches tall on the side walls, so if you have a child that is a climber this may not be a suitable option.

These large playpens generally measure 60inches by 70inches, so a typical mattress will not fit the whole area. Keep a close eye on the product details, because some do include a thick foam padded mat that goes at the bottom.  Others just have a standard flat mat or rug like bottom.

A typical full-size mattress is 54 x 75 inches and will de difficult to travel with, so most people use a thick foam mattress topper for added thickness and comfort. The foam mattress in a full size won’t be a perfect fit, but can usually be squished into place.  This is not a perfect system but it does travel easier than all the other options.

Can Special Needs Bed be Covered by Insurance?

Depending on your insurance plan, you may be able to get coverage for a special needs toddler bed.  Typically, your child will have to show a medical necessity and that other options were tried and not successful.

The usual route that is taken to get coverage is to start with a referral or prescription for a special needs bed. A letter of medical necessity will be written and show exact reasons like severe acid reflux, autism or sensory issues, endangerment during feeds, etc.

The best course of action is to also get recommendation letters from other medical providers as well, like your occupational or physical therapist, GI doctor, and any specialists that you see.

Lots of parents have said that the more recommendations that you can provide the easier it is to get approved by insurance.  A lot of special needs bed providers will actually work with you and help you jump all hoops to get approved. 

Unfortunately depending on your situation and insurance coverage there is no guarantee that it will be covered in full.  In some cases, they will only assist in covering a partial amount or will deny any coverage at all.

You can go through an appeals process and you can keep applying for coverage as your child’s needs and situation change.

There are also some resources like grants, scholarships, and charity programs that can help with the cost of these special needs beds.  The best resource for this would be to contact your children’s hospital social worker or check out this list of resources available online.

Special Needs Enclosed Bed

The following beds are ones that are typically covered by insurance and are enclosed to keep a child contained while sleeping.

The Safety Sleeper

The Safety Sleeper bed comes in a range of sizes from twin to queen, and is basically a customizable mattress with a tent cover built around it.  They offer a standard version and also optional add-ons for specific needs.  The standard option runs about $3700 when on sale.  They do have a section on their website for resources to help get coverage with your insurance.

SleepSafe Tall Bed

This enclosed bed option from SleepSafe comes in a range of sizes from twin to queen size.  They do offer a lots of customizable colors and options to make sure that it services all the special needs you have like adjustable mattress, extra padding, and tubing channels.

This bed has a hard shell so it will be more stable than the tent options.  The SleepSafe bed system starts at about $6300 with added costs for customized options.  Their website also offers resources if your insurance has denied coverage for a special needs bed.

Check out their giveaway as well because every quarter they gift a bed to someone in need especially for kids with disabilities!

There are a few other options for enclosed special needs beds but they don’t share their pricing online.  Those would be Beds by George and Pediacraft.

You can also look at other options that are offered by a special needs equipment dealer.  I found that Adaptive Specialties had a fairly large assortment of pediatric beds available.  They will also help with insurance coverage! As an added bonus they also offer replacement mattresses to a lot of speciality beds.

Alternate Sources for Special Needs Bed

Depending on where you live and which hospital you get your care at, you may find that a local social worker or Ronald McDonald House organization may be able to assist you.  Some are able to get second hand beds and pass them on to families in need, or they can help arrange fundraising for you.

Another option for finding a special needs bed if insurance coverage has been denied, is to check out the marketplace on Facebook.  If you live near a large city or are willing to travel, you may find some good deals or beds being donated by families that no longer need them.

Special Needs Bedding

Most of the options that we discussed used standard size mattress so standard bedding is all that you need for your special needs bed.  This is great because you can find linens in your child’s favorite characters or colors to make their bed feel more comfortable.

Waterproof mattress covers are a great option to ensure that the mattress stays clean and doesn’t trap any odors.  There are tons of different options available on Amazon depending on your needs.

Depending on the conditions and diagnosis you may need additional support and a way to lift your child’s head.  Amazon has a bunch of options for pillow wedges and body positioners.

Are Special Needs Beds Tax Deductible?

Tax returns are very personal and different for each family.  In general most families claim the standard deduction on taxes so medical expenses won’t be included.

If you have a large amount of uncovered medical expenses, you will want to check with your accountant or tax preparer.  Typically, if your medical expenses are higher than 7.5% of your adjusted gross income, then you can deduct them under itemized deductions.

I recommend discussing these tax strategies and qualifications with a CPA or accountant to learn more information on what is covered and what will not be covered.

Special Needs Beds for Kids with G tube and GJ Tubes

There is no single answer for the best bed for kids with feeding tubes, so I have given the best list of moms recommended options.  Depending on your situation and specific needs, you may do better with an affordable option, or you may need a hospital type pediatric bed.

If you have experience with special needs beds and have tried other options, please drop a comment below.  I would love to hear any out-of-the-box solutions or other DIY options!

If once you have the bed set up and you are struggling with establishing a sleep schedule, check out this article about melatonin and feeding tubes! 

We also have covered multiple pajama options like the best G Tube Pajamas and how to DIY Footie Pajamas to make easy access.