also a sleep question, zzzzzz, me tired

January 21, 2007

For the first 8 months of Chrystine's life, she slept very well. Buttttt,

for about 3 months, she has been waking up about every hour on the hour. It is

exhausting. And, I don't really know how to fix it. She is almost 15 months

old and still needs a nap during the day so I cannot cut her nap out otherwise

she gets very grouchy and sluggish. I recognize this as an association with

charge syndrome, and it is so amazing to me that she is starting to posess all

these other traits. Who do I talk to about her sleeping difficulties?

Pediatrician first? Is this a phase or is this the beginning of a lifelong

issue or

is it because of the new addition to our family?

chrystal (me tired)

arleigh-4

chrystine-almost 15 months CHaRGE

silas-almost 4 months

January 21, 2007

Chrystal,

I think the sleep issue is very important and very complex!

There are so many factors that can affect sleep. As Krista brought up, there

could be apnea.

As we have all discussed in the past, there could be pain from unknown causes,

pain or discomfort from digestive issues, or difficulty regulating the sleep

cycle.

From our perspective I think it can be helpful to carefully evaluate the dietary

issue. Sometimes it is not obvious that certain nutrients are not being

digested well or that they contribute to discomfort. In our daughter's case, we

know that milk, soy, wheat and some other foods are problematic.

Then I think it could be helpful to know that in our case, when our daughter

started waking frequently and staying awake for long amounts of time, that the

serotonin was apparently connected. After several years of lack of sleep, we

finally gave her a medicine that affected her sleep. The medicine changed the

amount of serotonin. For her it was immediate and the sleep problems stopped

within a day or two of starting the medicine. That was ten years ago. No more

sleep problems. BUT! I am definitely not suggesting that Chrystine starts the

medicine. In the first place we don't know what is contributing to the problem

and second, this particular medicine would not be prescribed for a toddler.

However, knowing that neurotransmitters might be involved could be helpful. For

example, perhaps specific comforting protocols during the day such as infant

massage could affect neurotransmitters also.

In my readings, I have found that melatonin (important in sleep regulation) is

created in the pineal gland and that sunlight or natural outdoor light can

affect the production. Additionally, when indoor lights are turned on, the

melatonin cycle is affected. So, for me, this seems like interesting

information. Children with CHARGE may have colobomas which, in my personal

opinion, could affect how light enters the eye. Maybe that has an effect on how

the melatonin works. Maybe that bit of information could be helpful in

understanding the sleep difficulties experienced by so many kids with CHARGE.

In my, also personal opinion, taking melatonin supplements could lead to other

problems. In my viewpoint, getting the body to work optimally, without

supplements which may further impede the body's natural system, is the goal for

us in our family.

I hope you have a wonderful day with time for a nap for yourself or a walk in

the sunshine if it is possible. Sleep deprivation is no good for our kids or

for ourselves!

I'll try to send you the specific references to the melatonin/light issues. I'm

running out the door now, but will try to get back to this later this evening.

Mom to Kendra, and Camille