The word for today is CO-ARTICULATION. I am pretty sure it is going to be the kryptonite for Sam's apraxia. Look it up. Let me know if you have questions - especially if you are in or near Dallas!
More info to follow...
Friday, September 24, 2010
Wednesday, March 3, 2010
Sweet Dreams
We might be onto something. I am guardedly excited (ecstatic).
After we returned from the Mayo Clinic and found out about Sam's sleep problems, we went to her Ear, Nose & Throat doctor here in Dallas. This ENT is now with Children's Medical Center of Dallas so she sent us to them for a new sleep study. (great people!) Pretty much the same results as at Mayo. Next, a second sleep study at Children's - to fit Sam with a C-PAP (Continuous Positive Airway Pressure) machine.
We have had the C-PAP at home for a little more than a week now. It is a mighty steep learning curve to get used to this machine - especially for a non-typical child. BIG adjustment. Sam's been through no less than 10 different masks looking for the right one. But she is doing great. We've just had four nights in a row where she did not wake up or kick her legs.
Sleep. It sounds like such a little unimportant thing. You take it for granted and the role it plays for your body and mind. At least I did. Until now.
Sam has not slept well for years. Perhaps her whole life. I can remember not being able to lay her down when she was a baby. She slept better when she slept with me. I just wrote it off to her being the (spoiled) first child and me not wanting to put her down. And while there may be some truth to that - I now think there is more to it.
My Mother and Mother In Law have told me for years how bad Sam's sleep is. I knew it was bad but did not think it was relevant. My answer was to not sleep with her. I never made the connection between the sleeping hours and the waking ones.
Besides, we did a sleep study several years ago and although it was poorly done, I still thought it ruled out any real problems.
Now we know that Sam has moderate sleep apnea. This is after the removal of her tonsils and adenoids when she was five. She has sleep disturbances during REM. She has VIOLENT sleep habits - kicking, hitting, flailing, screaming and then some. She grinds her teeth. For a short time, she pulled her hair out. She has reflux at night. She gets up at night and binge eats. She gets up at night and plays with the dog or watches TV.
Before we went to Mayo we made a home video of Sam sleeping in her own bed. We edited it down to show only the violent episodes. It has been shocking to everyone who has seen it. The sleep specialist at Children's Medical Center suggested putting Sam on a sleep medication because after the first few days on the C-PAP, she was still kicking violently. He said he rarely recommends sleep medication for children but after seeing her (home) video and studying her sleep lab results he felt pharmaceuticals would be necessary.
I told the sleep Dr. I would like to wait a few months before starting the drugs. He agreed to wait. I just want to see what the C-PAP machine does all on it's own. Then low and behold, the last four nights - zero kicking. Maybe that will stick. Maybe it won't. Only time will tell.
You have to wonder; how long has my child not gotten a quality night of sleep? How much of a sleep debt has she accumulated??
And did you know that children who are sleep deprived do not exhibit fatigue like adults do. Kids with sleep deprivation are HYPER. H!Y!P!E!R Kids with sleep deprivation have learning problems.
I did some research to see if there is a known connection between apraxia and sleep apnea. I found a paper on one child with obstructive sleep apnea and childhood apraxia of speech. They removed his tonsils and his speech production started to make a marked improvement. I think this is an area open to more study. How many kids with CAS have sleep apnea?
If Sam has OBSTRUCTIVE sleep apnea and does not have tonsils or adenoids, then what is obstructing her airway? I think it is due to the (CAS) laxity of the muscles in and around the mouth and airway. This is simply one mother's theory and not at all scientific fact.
I have told the Dr and the sleep tech that comes to the house to work with Sam on her machine what my expectations are. I am hopeful that this C-PAP will allow Sam to sleep better. All night. Every night. And once her sleep debt is repaid and deprivation is a thing of the past, I am looking for two things:
1. Better academic performance - to include her speech
2. Improved behavior - which should lead to a decreased need for daily meds.
The Dr and the sleep tech have agreed that my expectations are not out of line. I hope they are right.
I don't think this is a cure all. I don't think Sam will wake up a typical kid in two months. But I am hoping this will get her closer to center.
It's like I told the Dr., "You are not just treating this child. You are treating my entire family."
We get Sam more level, my family will follow.
In just ten days we have already noticed small differences at school and home. She is easier to do home work with. Her appetite is increasing. Her teacher said that she seems happier at school. Happier.
I really want to dance up and down the street. But I remain guardedly optimistic. I have had high hopes before. I have have had expectations squashed.
This is literally one night at a time.
And so far, so good!
After we returned from the Mayo Clinic and found out about Sam's sleep problems, we went to her Ear, Nose & Throat doctor here in Dallas. This ENT is now with Children's Medical Center of Dallas so she sent us to them for a new sleep study. (great people!) Pretty much the same results as at Mayo. Next, a second sleep study at Children's - to fit Sam with a C-PAP (Continuous Positive Airway Pressure) machine.
We have had the C-PAP at home for a little more than a week now. It is a mighty steep learning curve to get used to this machine - especially for a non-typical child. BIG adjustment. Sam's been through no less than 10 different masks looking for the right one. But she is doing great. We've just had four nights in a row where she did not wake up or kick her legs.
Sleep. It sounds like such a little unimportant thing. You take it for granted and the role it plays for your body and mind. At least I did. Until now.
Sam has not slept well for years. Perhaps her whole life. I can remember not being able to lay her down when she was a baby. She slept better when she slept with me. I just wrote it off to her being the (spoiled) first child and me not wanting to put her down. And while there may be some truth to that - I now think there is more to it.
My Mother and Mother In Law have told me for years how bad Sam's sleep is. I knew it was bad but did not think it was relevant. My answer was to not sleep with her. I never made the connection between the sleeping hours and the waking ones.
Besides, we did a sleep study several years ago and although it was poorly done, I still thought it ruled out any real problems.
Now we know that Sam has moderate sleep apnea. This is after the removal of her tonsils and adenoids when she was five. She has sleep disturbances during REM. She has VIOLENT sleep habits - kicking, hitting, flailing, screaming and then some. She grinds her teeth. For a short time, she pulled her hair out. She has reflux at night. She gets up at night and binge eats. She gets up at night and plays with the dog or watches TV.
Before we went to Mayo we made a home video of Sam sleeping in her own bed. We edited it down to show only the violent episodes. It has been shocking to everyone who has seen it. The sleep specialist at Children's Medical Center suggested putting Sam on a sleep medication because after the first few days on the C-PAP, she was still kicking violently. He said he rarely recommends sleep medication for children but after seeing her (home) video and studying her sleep lab results he felt pharmaceuticals would be necessary.
I told the sleep Dr. I would like to wait a few months before starting the drugs. He agreed to wait. I just want to see what the C-PAP machine does all on it's own. Then low and behold, the last four nights - zero kicking. Maybe that will stick. Maybe it won't. Only time will tell.
You have to wonder; how long has my child not gotten a quality night of sleep? How much of a sleep debt has she accumulated??
And did you know that children who are sleep deprived do not exhibit fatigue like adults do. Kids with sleep deprivation are HYPER. H!Y!P!E!R Kids with sleep deprivation have learning problems.
I did some research to see if there is a known connection between apraxia and sleep apnea. I found a paper on one child with obstructive sleep apnea and childhood apraxia of speech. They removed his tonsils and his speech production started to make a marked improvement. I think this is an area open to more study. How many kids with CAS have sleep apnea?
If Sam has OBSTRUCTIVE sleep apnea and does not have tonsils or adenoids, then what is obstructing her airway? I think it is due to the (CAS) laxity of the muscles in and around the mouth and airway. This is simply one mother's theory and not at all scientific fact.
I have told the Dr and the sleep tech that comes to the house to work with Sam on her machine what my expectations are. I am hopeful that this C-PAP will allow Sam to sleep better. All night. Every night. And once her sleep debt is repaid and deprivation is a thing of the past, I am looking for two things:
1. Better academic performance - to include her speech
2. Improved behavior - which should lead to a decreased need for daily meds.
The Dr and the sleep tech have agreed that my expectations are not out of line. I hope they are right.
I don't think this is a cure all. I don't think Sam will wake up a typical kid in two months. But I am hoping this will get her closer to center.
It's like I told the Dr., "You are not just treating this child. You are treating my entire family."
We get Sam more level, my family will follow.
In just ten days we have already noticed small differences at school and home. She is easier to do home work with. Her appetite is increasing. Her teacher said that she seems happier at school. Happier.
I really want to dance up and down the street. But I remain guardedly optimistic. I have had high hopes before. I have have had expectations squashed.
This is literally one night at a time.
And so far, so good!
Subscribe to:
Posts (Atom)
1.jpg)