Caring 4 Krabbe Kids
A Resource for Families Dealing With Krabbe Disease

Equipment

Equipment

A)    Sources of Equipment:

1)    Equipment exchange/loaning:

a      Hunter’s Hope has an equipment exchange program.  There are photos on the website of equipment that families no longer need.  Hunter’s Hope will pay the shipping to the new family who needs it.  (However, there is not a very big selection).  http://www.huntershope.org/site/PageServer?pagename=familyprograms_equipment

b      SMA Support:  http://www.smasupport.com/equipment_list.htm

c       United Cerebral Palsy organization:    http://ucpmidtn.org/wp/
This organization was wonderful for us.  They provide an equipment exchange program through which we received several items.  There should be one in your area also, but here is the contact information for Tennessee. 
United Cerebral Palsy of Middle Tennessee
1200 9th Avenue North, Suite 110
Nashville, TN 37208
Phone: (615) 242-4091
Fax: (615) 242-3582
Email: request@ucpnashville.org
Home Page:
http://www.ucpnashville.org

d      Facebook page for Krabbe families – If you can’t find what you need from the equipment exchange sites, try posting on the Krabbe Family group page what you are looking for.  You may find other families that aren’t using their equipment and are willing to send to you.

2)    General Equipment Shopping for special needs children:

a      www.AdaptiveMall.com 

b      www.Abilitations.com  This company will also send a catalog, which can be quite useful for browsing to get ideas. 

B)    Equipment – Alphabetical Listing: 

1)    Adapted Therapeutic Strollers:

a      There are many types and styles of strollers available.  It is probably best to discuss the appropriate options for your child with the therapist and a medical vendor.  You may also find that asking your therapist (usually PT)  to join you on a shopping trip to buy a stroller is the best way to get the perfect stroller for your child.

2)    AFO’s  (Ankle Foot Orthoses): These are fabricated by a pediatric orthotist. 

3)    Bath Chairs:

a      Leckey: http://www.leckey.com/products/#bathing-and-toileting

b      Colombia: http://columbiamedical.com/special-needs-disabilities-products-categories.asp?SubCategoryID=19

4)    Benik Splints:   http://www.benik.com/peds/wrist/  These were ordered through our OT and were used to keep the flexibility in Dylan’s thumb, which tended to be pulled into the fist. 

5)    Benik Vests: A vest that covers your child’s entire trunk and provides extra support for the back and abdomen.
http://www.benik.com/peds/trunk/v-100

6)    Bottle Warmer for Car:
http://www.walmart.com/ip/The-First-Years-Quick-Time-Auto-Bottle-Warmer/4631182

7)    Car Seats:  You can recline seats further than normal with pool noodles or rolled up towels.  For older kids, support feet with pillows to take some weight off the back of the legs. 

a      Evenflo Triumph (seat immediately following infant carrier – up to age 4)

b      Britax Traveler Plus http://www.adaptivemall.com/brtrpl1.html

c       Cosco Alpha Omega (wider and better recline)

d      Infant car beds - http://carseats.babycatalog.com/carseat-infant-bed.html
http://www.naturalbabyhome.com/infant-car-bed.html
http://www.showeryourbaby.com/couldrri1.html

e      Bebe Confort’s “Iseos TT”:  http://www.bebeconfort.com/products/car-seats/toddler/iseos-tt.aspx

f       Adaptive car seats can be found at www.Snugseat.com which includes the Gorilla car seat for older children with special needs.  There are also bases that you can purchase that swivel with some booster style seats that make transfers in/out of the car easier. 

8)    Jiggler:  www.Abilitations.com

9)    Knee Immobilizers:  http://www.rcai.com/
These are typically ordered through an orthotist so that they can be billed to your insurance, but you can also order them directly and pay yourself.  RCAI (Restorative Care of America) carries a good version.

10) McKie splints: Hand and Thumb splints  http://www.mckiesplints.com/about.htm

11) Nuk Brush:  Oral stimulation device http://www.beyondplay.com/ITEMS/T496.HTM

12) Nutritional Supplement:  Ambrotose glyconutritional supplement
http://mannatechscience.org/home/products/ambrotose

13) Oxygen: If your doctor prescribes oxygen for your child, your hospice organization will be able to assist in providing an at-home oxygen tank for your child.

14) P and Q rings:  For sensory and oral stimulation  http://www.amazon.com/PS-AND-QS-CHEWY-TUBE/dp/B0018C0HTI

15) Percussor:  for stimulation and relaxation of muscles. 
http://www.impacinc.net/client/index.php?action=show_product_box&page=7)
New Dimension Percussor Instrument by IMPAC
P.O. Box 353 Salem OR  97308
(503) 581-3239

16) Pool Chair (see listing for Bath Chair)  - Dylan seemed to enjoy time in our pool in the summer, but he was not able to control his body enough to sit in normal baby floating devices.  Phil built a pool chair from PVC pipe that allowed his bath chair to be placed on top of the PVC “box” so he was comfortable in the pool.  See photos #10-#11 below that show the makeup of the pool chair (with Dylan’s bath chair placed on top).

17) Pulse/ox Monitor:  This machine measures the amount of oxygen your child’s blood is carrying.  A pediatric version can be placed on your child’s finger or toe.  Generally, the reading should be at least 95%.  Changing your child’s position may increase or decrease the oxygen %.  Discuss with your doctor if the percentage is below 95%.  Also discuss what your child’s “Normal” range is. 
http://www.clinicalguard.com/pediatric-pulse-oximeter-p-75.html

18) Standers:   Weight bearing activities strengthen bones and increase circulation. 

a      www.Leckey.com

b      www.Theradapt.com

19) Strollers (see also “Adapted Therapeutic Strollers” above and “Wheelchairs” below ):  It is important to take your child to the store to see how the stroller fits, if at all possible.  We were quite surprised when we tried different ones.  Strollers with a 5-point harness (see photo #12 below) are quite common now (and much more effective), but were just coming out during Dylan’s illness.  We liked the shape of this one:

a      Quinny:  http://www.quinny.com/us-en

20) Suction Machines:  These machines act as a vacuum with a small nozzle that can be inserted into a child’s mouth if they are struggling to manage their saliva.
http://www.amazon.com/DeVilbiss-Vacu-Aide-Homecare-Stationary-Suction/dp/B000ROJAMS

21) TLSO (Thoracic Lumbo Sacral Orthosis):  This is custom molded by an orthotist with a referral from your primary care physician.  The PT and orthopedic doctor can determine if this type of brace would be helpful in maintaining proper spinal alignment.  It can be worn for a few hours at a time, or longer depending on the deformity.  It can also be used as support for sitting activities if the child still demonstrates head control.

22) Tumbleform:  www.Tumbleform.com Adapted floor and feeder sitters with bases that allow for adjustment of incline  http://www.adaptivemall.com/floorsitandf.html

23) Versaform:  These pillows can be formed into whatever shape is needed to best support your child.  Once the desired shape is established, air is pumped out of the pillow so it holds its shape and becomes firm (hard as a rock).  The chair is more comfortable if covered with a blanket. 
http://www.pattersonmedical.com/app.aspx?cmd=get_subsections&id=100662

24)  Weighted Blankets: http://www.sensacalm.com/weighted-blankets/?gclid=CMLivrqPva0CFQpV7Aod0W9YCQ
There are many places on the internet to buy weighted blankets or you can make them yourself from online directions.  They can be filled with a variety of objects, such as beans or popcorn, which make them heavy.  The rule of thumb is that the blanket should be 10% of the child’s body weight. If you are using a smaller pad, (such as a lap pad), the typical rule of thumb is 5% of body weight (because it is not covering the entire body). 

25) Wheelchairs:  Proper head and neck support are key for comfort and optimal breathing. Supportive strollers and wheelchairs are very expensive.  You may be able to work with your insurance company to secure one of these.   Your Physical Therapist should help you with the selection and fitting of the wheelchair, which will need to be adjusted over time. 
See the Bingo stroller at
http://www.southwestmedical.com/products/Hoggi-Bingo-Push-Chair-Stroller-Size-1-32667.html 
and the Kid Kart at
http://www.usatechguide.org/itemreview.php?itemid=841. 

26) Z-vibe oral stimulation tools:  http://www.superduperinc.com/products/view.aspx?stid=398




PHOTOS:

Photos # 10, 11 - Pool chair we made from PVC pipe.  Dylan's bath chair set in PVC cups on top of the pool chair.





Photo #12 - Five-point harness stroller





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