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Hydranencephaly Resources in caring for a Child with Hydranencephaly Physical Care of a Child with Hydranencephaly Difficult Times
Pt. 1: Taking Care of You Book: Caring for Your Child With Hydranencephaly
Printed Materials |
Personal Care:
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Columbia Contour Supreme Articulating Bath Seat |
Raised bath tub for Cookie |
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Noah is in a Rifton Bath Seat http://www.adaptivemall.com/riblwabasy.html This seat has several different bases that put the seat at different heights
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Leckey Bath Seat |
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Snug Seat Manatee Bath Seat |
Aquatec Bath Lift http://www.adaptivemall.com/aqforbatlif.html I wanted this for Kayda. But, it’s not great for a child with no ability to sit independently. The lady that had Kayda before me had one and she sort of used it backwards so that the head of it was more flat and it worked. |
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Columbia Bath Seat |
Easy Shampoo Basin http://www.dealtime.com/xPC-Easy_Shampoo_Basin~S-P~OR-0 This is great for a child who can’t go in the bathtub easily. |
Beds and
Sleeping
http://www.caringforcerebralpalsy.com/sleep.html
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This is Emily’s Volker Bed |
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In the above pictures Noah is in a symetri sleep system. It’s a wonderful product to help position a child at night but it isn’t currently available in the US. It is available in the UK, Canada & Australia.
http://ebility.com/gtkrehab/products/helpinghand_symmetrisleep.php
HARD The STOCKTONTM YOUTH BED
http://www.hardmfg.com/ (I couldn’t find any pictures of this bed. You need
to just fill out a form on their web page for more info). A number of the
parents like the HARD beds as they look nicer than a typical hospital bed.
Another popular brand of bed for our kids is The Sleep Safe beds. They have
several different models.
http://www.sleepsafebed.com/
Tips on getting funding for specialized beds (and a lot of other equipment):
From Darcy, grandmother to Emily age 6, Just a note of advice to families with younger kids who are looking for a special bed. When we were trying to get Emily's bed when she was almost 4 yrs. old, the insurance company wanted us to get a child size. We argued (and the pediatrician agreed and wrote the script) that Emily was tall for her age, and if they wanted to pay for a child size now, they would just have to pay for an adult size later. So we got a twin size adult bed that hopefully will last Emily forever. Insurance also wanted to get us a "crank" style. We/Pediatrician argued that due to Emily's condition she needed a fully automatic bed. We got exactly what we wanted for her!
The trick is to get the therapists and pediatrician to
write the scripts making the child's condition sound as dire as possible. This
may sound terrible, but we did whatever we had to in order for Emily to get the
right bed. We didn't make things up or lie, but made Emily sound like she was in
very bad physical shape.
Positioning in Bed
From Barb, mom to Kayda (12/2/88-6/23/00) I wanted the symetri sleep system for my son (not hydran) but as he needed a special mattress our government wouldn’t pay for the symetri sleep system. But what I discovered is that if I put pillows or heavy pillows (I used kitty litter to fill them) under his sheet as is done with the symetri sleep system it works almost as well. I put one cross wise on his bed so he doesn’t slide down on the bed, and then another one right in front of him to keep him from slumping forward at night. It works really well. Even just a regular pillow under the sheet works better than on top of the sheet.
Dressing a child with
Hydranencephaly
Clothing suggestions and Ideas
http://www.dinf.ne.jp/doc/english/global/david/dwe002/dwe00239.htm#part1chap37
(this is a really good article on dressing a child with a disability. It is
contained in it's entirety in the book "Caring For Your Child With
Hydranencephaly"
Dental Care and Problems
Many of the children with hydranencephaly have dental problems. There are a wide variety of causes. The following information is taken from the Our-Kids mailing list archives and was written by a pediatric dentist. It's a bit long, but I think the information here is really good. It is contained in it's entirety in the book "Caring For Your Child With Hydranencephaly"
Dentistry for the Disabled Child and
Adult
http://www.our-kids.org/Archives/dentistry_disabled.html
Personal Care Suggestions from Families
Tooth
Brushing
From Renee, mom to Brennan, age 3: You could start the child off with your finger wrapped around a damp
washcloth, or use a baby finger brush, which works well. There are also dental
wedges if your child doesn't keep his/her mouth open long enough to clean. If
you're not able to get it at your dentist's office, then you could probably find
it and purchase it online somewhere. I use a regular infant/toddler toothbrush
and a flavored gel for Brennan and he doesn't seem to mind my brushing his teeth
at all. I'll usually show him the toothbrush or touch it on his lips just to
prepare him, and then I'll gently push down on his chin and he'll eventually
open his mouth and let me brush 5-7 sec. at a time
From Karen; mom to Heather, age 4: We use a Spin Brush on Heather. We usually put a 1/2 used battery into it so it isn¹t too strong. Something left over from a Game Boy or a TV remote. Heather loves the stimulation. For toothpaste we use Gerber Infant and now Toddler toothpaste. It¹s actually a fruit flavored gel. Again, it¹s good stimulation and it doesn¹t have fluoride. We take her to a dentist every 4 6 months. The dentist gave us a "wedge" to insert between her teeth to keep her from clamping down on the toothbrush.
From Karen, mom to Heather age 4: I use baby nail clippers and try to do it when she is very relaxed. I sit cross-legged on the floor and just hold her until she¹s half asleep. Then I get the easy nails first before attacking the thumbs. As much as possible, keep them very curved. Her skin is so tender that corners on the nails just leave ugly red marks. I also use an emery board to file down any jagged parts. If I can¹t get her calmed and the nails are doing a lot of damage, I resort to the sock over the hand until a better time.
From Lisa, mom to Noah age 3 1/2: I always wait till Noah is asleep to cut his nails-it is much easier!
Hair
Cutting:
From Karen, mom to Heather age 4: The first time, we used her microshell seating
system at the hairdressers. The second time we used the wheelchair. The harness
did the hard part. After tha ti was a matter of getting the head to cooperate.
The last time I held her in my lap, but I think that was harder.
Other pages in this section:
Cerebral Palsy
Orthopedic Considerations
Medical Treatments for Spasticity
Orthopedic Surgery links and
resources
Orthopedic Surgery Personal Experiences
Therapy for children with
Hydranencephaly
Range of Motion Therapy
Other Types of Therapy
Principals of Positioning
Positioning:
Orthotics and Splints
Orthotics and Splints Experiences
Equipment
Wheelchairs
Alternate Positioning
Standers
Practical Care: Transportation
Practical Care: Carrying and Lifting
Sleeping Medications
Glossary
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August 16, 2001- January 12, 2005 This website is funded in loving memory of Jason S. by his mother Kammy The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly. Please report any broken links or missing photos to angelbearmom@shaw.ca
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