|
|
|
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 |
Medication and Sleeping ProblemsSleeping problems are also common for our children. There are a variety of reasons for this; inactivity, pain, discomfort, etc. Another problem is that because our children are mostly visually impaired (VI) their brains don't excrete the hormone melatonin. In many children who are VI giving melatonin at night does wonders. Unfortunately it often doesn't in our kids. An explanation given to me by a neurologist is that melatonin is processed by the hypothalamus gland and it appears that many children with Hydranencephaly are missing it, or it doesn't work. So.... living with a child who doesn't sleep well is a real challenge. I've found very little on the "net" about sleep problems in children with multiply "challenged" children. Just know that you're not alone. I'm including information on some of the more common medications parents use to help their child sleep. The first medication I have included information on; Trazodone is an antidepressant that has a strong sedative effect. Before we tried it, Kayda would only sleep every 2nd or 3rd night and would scream or laugh hysterically on the days and nights in-between. We tried absolutely everything. One time when Kayda was in the hospital, I saw her pediatrician downstairs in the lobby. I mentioned to him in passing that I had a question for him next time he was on the ward. He looked at me and said right away "I don't know what to try to help her sleep" We tried Melatonin and even at an extremely high dose it did nothing. Then we used Nitrazepam (an anticonvulsant with a strong sedative effect. That worked well for quite awhile but as it's in the Valium family it is addictive. Kayda needed increasing amounts of it-she was up to 20 mg at bedtime and still she would only sleep every 2nd night Summers were the worst. I remember at one point calling to get an appointment with any of her doctors to come up with a new sleep strategy. When the secretary of the 3rd Doctor I tried, told me that like all the other Drs, he was on holidays and couldn't see us for a month, I wailed "I can't go another month without sleeping." Every night I was so tense worrying if Kayda would sleep or not. Finally after asking people on several mailing lists I was on for non-addictive medications to help people sleep, we were told about Trazodone. At first our pediatrician was sceptical but agreed to prescribe it for her. In the 3 years she was on Trazodone she had no more than 2 or 3 totally sleepless nights. She didn't always sleep all night on it but she slept long enough to allow her to be not as tired. Her love for taped stories helped as well as she'd be quite happy listening to stories once she woke up and would often go back to sleep once a story was put on. I purposely taped them on long tapes so I didn't have to keep getting up. Trazodone hasn't worked for all of the children we know, who have tried it but for us it was a wonder drug. Trazodone Chloral Hydrate (Systemic) Note: For many of the children with Hydranencephaly, Chloral Hydrate is a wonder drug. It's usually the first one tried. However, some children are overly sensitive to it. With Kayda and several other children, it over sedates them to the point where you can't tell if they are breathing. Kayda also, would scream half of the next day after having had it the night before. We only used it a few times and then gave up. It is also the medication most often used to sedate children for tests. It is very important that your child is watched carefully when given any new medication, just in case they have a reaction to it.
Melatonin: Use of melatonin in the treatment of
paediatric sleep disorders.
Other pages in this section:
|
|
Subscribe to the
Hydranencephaly Mailing list
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
|
