Personal Care:
Tips and Equipment

Bathing a Child with Hydranencephaly
http://www.caringforcerebralpalsy.com/bathing.html

Bathing: Personal Experiences

From Karen, mom to Heather age 4: We have a Rifton Blue Wave Bath Chair that her health aide plops into the tub. He straps her in and does all of her cleaning, clipping, brushing, combing, right in the tub. I recommend the L'Oreal Quick-Drying Children's shampoo. It's gentle on eyes and hair and does really dry faster. There is also a "dry hair" shampoo that the hospital gave us. I've seen it in some stores. It works ok, but I think leaves the hair looking a little greasy. (Maybe I didn't use it the right way).

From Barb, mom to Kayda (12/2/88-6/23/00): The first couple of years we used a custom made bath frame. It was made of webbing (like in a seat belt) that was woven like an old fashioned lawn chair. It laid over the tub. I just laid her on that and used the hand held shower head. It was great when she was in casts. But, it meant she wasn't in the water and would get cold. Once we had our ceiling lift I just bathed her in her sling. The water was deep enough she could be right in the water. It was much easier than taking her out of the sling and using a bath seat.  

Bathing Aides

Beds and Sleeping
http://www.caringforcerebralpalsy.com/sleep.html

Beds

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 STOCKTON^TM 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/ 

Beds Personal Experiences

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"

Tooth/Dental Care

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