Tuesday, July 9, 2013

Best equipment for babies with cerebral palsy

I've been emailing with a father from Saudi Arabia, who's asked about the best toys and equipment for babies with cerebral palsy; he has an eight-month-old with CP, and is eager to find ways to boost his development.

The toy guides I've done for kids with special needs—in 2010, 2011 and 2012—have a ton of parent-approved, kid-loved suggestions. As for equipment, these are some things that helped Max as a tot. Ask the therapists and doctors in your life about them, as they best know which will fit your child's level of muscle and trunk control.

Boppy pillow


I had a Boppy around for nursing, anyway, and it was great to put it to more good use for Baby Max and give him support for sitting up. His physical therapist showed us how to position Max inside it, with his chubby little legs (we fondly referred to them as "tree trunks") spread apart to prop him up.

 As your tot gets more core control, the Bumbo seat might be an option


A lot of parents also like the Childrite Seat

TheraTogs


Described as "therapy you wear," Theratogs is a garment system that gives neuromotor, muscular and sensory training. It's made of a special material that "grips" the skin (not in a sticky way!), with straps to control muscles; kids can wear it under their usual clothes. It really helped keep Max's joints in alignment. They recently came out with the Wunzi System for infants. An occupational or physical therapist can help order it and teach you how to use it. I've heard the company lets therapists get ones on trial, free, to test out with kids.

Fisher-Price Health Care Deluxe Booster Seat


Good support during feeding has long been critical for Max, who has issues with chewing and drinking. At first, we fed Max out of a bouncy seat we propped in the middle of the dining room table, with a towel wadded up behind him for extra support. Eventually we got this Fisher-Price Healthy Care Deluxe Booster Seat, which straps onto a chair and gave him good back support. It's easily washable and you can bring it to restaurants.

The Keekaroo Height Right High Chair


After Max outgrew the booster seat, we went with the Keekaroo, which we still have and love. It's really durable—we've only had to replace the foot rest. It actually works for children 6 months to, the site says, 250 pounds (!!!).

Hand splints


Because Max's hands were tight from the CP, and often fisted, he needed help getting them to open up so he could better grasp. Splints have come in handy for that, first Benik hand splints and, as of late, McKie Thumb Splints (above), which con be worn in infants as young as three months old. An occupational therapist can help measure a child for them, then show you how to use them.

Playtex 1st Sipster Cup


Max didn't hold a cup on his own till he was maybe 3; the Playtex 1st Sipster Cup was great, because it was light and had handles to help him hold on.

Snug Seat Pony Gait Trainer


Max was hell on wheels in his Pony Gait Trainer. It seriously encouraged him to pump his legs and get around at age 2, when he wasn't yet able to stand up independently. He'd gleefully fly around the house in it, freedom of movement he'd never had before (here's a good story about Max and his Pony). Luckily, our insurance company paid for it as it is super-expensive; you might be able to find another special needs parent to give theirs away when their child is done with it, which is what I did.

And one more thing!


A big-shot pediatric neurologist examined Max while he was still in the NICU, and recommended we give him Omega 3 fish-oil supplements to boost brain development. Once Max started on solids, we'd slip half of a packet into his meal (consult with your child's doctor to make sure it's OK and get the proper serving size). We used the orange-flavored Coromega Omega 3 Squeeze packets.

I am sure many of you have other suggestions for good equipment for kids with cerebral palsy—please share, and include links.

20 comments:

  1. This may be increbibly simplistic, but my child can't hang onto toys well. I would buy the plastic links, make a chain and connect them to any toy, plush etc. then my son could easily hold onto a "bracelet" of links and his toy. I also used thick hairbands or pony tail holders to slip over toys and connect the links through the hairband. He would swing and manipulate the toys for lots of fun! @Jewelsclee

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  2. In reference to the Omega 3 you were able to give that before age 4? The directions on that says for children over 4....THANKS! These are great products. My son has DS but I have a friend with a newborn who has CP :) I cant wait to share this but the Omega 3 really did catch my eye. Genevie

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    1. Yes, we started giving it to Max at around 6 months old—at the advice of our neurologist. He only got 1/2 packet. That mom would definitely need to check with her doc!

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    2. Cool. i have a word in with my son's neuro to see if we can start this as well. Thanks so much. - Genevie

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  3. I like the balls they use at the physiotherapist's office it helps with core stability.

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  4. What a great post, very helpful. We just got back from three weeks of intensive suit therapy in Winter Parl fl. I just finished ordering several things. First, I ordered an igallop. It's a workout machine by brook stone that mimics horseback riding. It's expensive, but I found one on Craig's list for $125. Levi has a tight pelvis and the igallop will help loosen his pelvis. I am also lookingg for an adaptive tricycle which are also expensive, but I hear that. The Am Vets give them a way twice a year to special needs children. I am going to look into that. The trike will help with the reciprocal feet pattern needed for walking. I ordered a scooter board which I can use to sit while I am behind my son helping him with his walk. I can also have Levi, my son, put his belly down on the scooter board and I tie his but down with an elastic band, he then holds onto ta hula hoop and I give him a ride through the house. This helps with his back extensions.

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  5. This is part two of my post from me (Caroline). My husband who is in the technology business is finishing up a site that he and some others created. Www.leviproject.com. It's a site for families with special needs to become paperless, or store our information that we usually keep in binders we will soon be able to keep that information in our laptops, computers and smartphones. Check out the site and if you are interested, we are looking for beta testers (people to test the program to tell us what they like and what they don't)

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    1. FYI there is NO such thing as "special needs families". Caroline you should know better than to idiotically generalize. Its VERY embarrassing. The proper term is families with kids with special needs.

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    2. Huh. I don't find it embarrassing at all, I think it's great. My son isnt the only one with special needs, my whole family is because we are a unit, and we all need to adapt our lives for our family to function at its best.

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    3. I think what she meant was it IS kind of embarrasing to say "special needs family" because that isnt possible. "Special needs family" makes NO sense at all. What's more it could confuse parents of typical kids. Genetically there is no way all of the family will have extra needs. Parents with children with extra needs should not use language that serves to confuse the world in general.


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    4. Becca its misuse of the word special needs. The word SN should only be used to describe invididuals who have uncommon needs. All other uses of the word are inaccurate no matter if they are "helpful" or "useful". One example is "special needs toy". How can a toy have special needs? It is NOT okay to abuse yes abuse the word as people love to do. Its embarrasing and makes us look like idiots.

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    5. I sort of wonder why it matters. ??? I am a 50 year old mother of 8 children. My 2 youngest have "special needs". In my lifetime, ugly and ignorant words and phrases have been used to describe and pigeon hole people with "special needs". I fully understand that you would not say "a Mongoloid family", "A retarded family", "A Down's family". But, I also think that a family with a special needs child, does become a special needs family. In addition to my 2 special needs babies, I am the mother of a daughter in an alternative lifestyle, a son who died at the age of 23 of a heroin overdose--but really from trying to self medicate his mental illnesses, a USMC son who is suffering from PTSD and various forms of depression and also currently self medicating with marijuana, a daughter with pink hair and tattoos who loves the Lord with all her heart and soul, but is judged by how she looks--she also has Lyme's disease and has suffered from seizures, painful joints and memory lapse issues...I could go on, but I think you get the picture...we are a family of special needs. Just because my 6 oldest children do not have a "special needs" diagnosis from a medical professional does not truly give them the title of "typical". No one looks like an idiot for expressing something in a way that makes sense to them. And if someone labels them as such, it only speaks of them...not of us. This is a hard enough road without those of us that are traversing it, lashing out at one another. (Bren-)

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  6. I really liked my bicycle when I was a kid. A four wheeled bike. I had a tube that I put around me when I was swimming so wouldn't sink. And I really enjoyed that, too.

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  7. I love the honey bear cup to teach kids in my classroom how to drink from a straw. All of my students have multiple disabilities and most of them have fine motor tone issues. Using a straw also helps with speaking as well as eating. You can make your own honey bear by just emptying out (if you like honey, I don't)a typical store-bought honey bear container and then adding some fishtank tubing through the hole in the top or you can buy them in a variety of places, even at Amazon.
    http://www.amazon.com/Mr-Juice-Bear-Teaching-Drinking/dp/B005RD66BC/ref=sr_1_1?ie=UTF8&qid=1373399039&sr=8-1&keywords=honey+bear+cup

    Lisa

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  8. Interested that you mention Omega 3. I have seen recommendations for that for epilepsy regulation (which my girl has) and dyspraxia (which I think she might have). Unfortunately our pediatrician was against giving her supplements. Said we should feed her more oily fish... "Any more mackerel, darling (picky eating 3 year old) daughter?" No, I didn't think so.
    You've reminded me to put it on my list for the neuro-paediatrician.

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  9. Oh the memories! I am going to glue a bumbo to the wooden chair now!!!! My main thought is to always see if a mainstream product is available even with a slight adapt to help save money on disability labelled equipment too.

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  10. One never needs their humor as much a when they argue with a fool.

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  11. Buy Toys for Babies in Australia at our online baby toys store - Babynest.com.au. Browse no. of best baby toys; choose soft toys for baby, shipping available for kid’s toys in Australia.

    http://www.babynest.com.au/

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  12. I once saw a news item about a father in Argentina who developed a very sophisticated treadmill for his son with apparently excellent results. He is a car mechanic, so has a propensity for manufacturing complex machinery. I liked the idea of using a treadmill to "reverse" teach the child the proper sequence of movements needed to walk. I designed a similar, much simpler machine for my daughter and she had no difficulty standing on it while it operated a different speeds. I have read a few research reports comparing the improvements in children using gait trainers and treadmills and the results look positive. Something to think about.

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  13. Hello Cesare,
    is it possible to let me know how I can get one? I would appreciate.
    Rosemary.

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Thanks for sharing!



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