Annelise had a seizure today
Yes, you read that right. Annelise, not my older daughter Ella (the one with the unspecified seizure disorder) had a seizure this afternoon.
Annelise was running a low grade fever about 4 pm today, and I gave her some allergy medicine to dry up her nose, and planned to let her fever burn. She had some pears, and we went to lay down in her room. She started seizing about quarter to five, and it was a very familiar sight, though of course terrifying, since I've been through this with Ella several times. Her eyes rolled back a little and fluttered, she was making motions with her mouth like she was trying to breathe but was not breathing, and she started to turn bluish-grey and was unresponsive. I know from my directions from Ella's neurologist that if she starts to turn blue, I am to give rescue breaths (covering her nose and breathing into her mouth). So I did that with Annelise. It didn't help. I did it again, and continued to watch her, and it didn't work a second time. I called 911, and while I was on the phone with the dispatcher, I gave her a third set of rescue breaths. She did finally breathe, but her seizure progressed at that point.. she put her arms up by her face and they were palsied in and twitching, and she was making chewing motions with her mouth, and her body was rigid. I would estimate her seizure lasted about 3 minutes. She finally relaxed and lay on the bed still, but breathing. I called out to Ella to tell her what had happened, and to go to the neighbors to see if they could come over. The EMS staff showed up about 5 minutes later, and they determined that her temp was not really very high (I dont recall the number they said, and I didnt see the sheet, but I remember the group of them saying things like "she doesnt feel hot" and "that's not very high" and "that's not that bad" or words to that effect while I was giving info to the guy writing stuff down for his fact sheet. I called my mom, my husband, and a friend from church to come get rElla and Maddie, and then opted to take the ambulance ride withAnnelise instead of following them in the minivan since she was still really lethargic and I ws not sure it wouldnt happen a second time.
We arrived at the ER, and they took her temp, which was 103.4. They gave her tylenol followed immediately by motrin. She started coming around when they did her rectal temp, and was pretty angry for the rest of our time there! The doctor said he thought it was a febrile seizure, and diagnosed her with an ear infection as well. Even with Ella's history of seizures, they opted to not run any tests. I guess I'm okay with that, but I am also not relaxing and assuming it was a one time thing, since Ella's first seizure also coincided with an ear infection, and then a week alter she had 3 more in one night. We got home about 2 hours after we went to the ER, and have had dinner and Annelise is acting like herself. With the amount of medication in her system, combined with the thunderstorm of brain activity from earlier will surely cause her to crash hard in a while.
Please pray that the ER doc was right about this being a febrile seizure, and for health for Annelise. Pray that I can relax and trust God over the next few weeks whether this recurs or was a one time thing. I havent yet looked up info about febrile seizures, I looked it up when Ella had her first one, but not since. Felicity had a simple partial with secondary generalization, Ella's most common type of seizure.
Thanks for praying for us/sending positive vibes to us!
Friday, May 11, 2007
Thursday, April 12, 2007
Ella graduated from Physical Therapy!
Lots of medical lingo, ask me if you need something clarified!
In late 2005 after several years of EEGs and MRIs related to her mysterious unspecified seizure disorder, we finally got Ella into some developmental testing related to her most recent MRI's revealing of abnormally low myelinated (white matter) areas in her brain. (This probably has nothing to do with her seizure disorder, though!)
The specialists we saw at UNC found her to be in the normal range for speech, hearing, vision, and issues relating to psychology. She was in the lower range according to the developmental pediatrician, the physical therapist, and the occupational therapist. In addition to OT and PT they recommended her for sensory therapy. We never did get sensory therapy covered by insurance, but her OT has worked on some things with her, and I have been doing a lot of reading on that front to address ongoing issues.
Ella received an evaluation from her OT a few weeks ago. She has made great strides, but continues to test lowest (two standard deviations below the norm) in the areas of manual dexterity and motor planning, but has some additional things to work on as well. She sees her OT twice a month, and we will probably re-evalulate in the fall.
Ella received an evaluation from her PT in the last few weeks, and I got the results today. Ella was given the Peabody Inventory at age 5 yrs 11 months, a fairly easy basic skills test compared to some others, plus she was at the top end of the age range suggested for administration of the Peabody. Her biggest areas of delay in PT were that she toe walked almost all the time (a neurological concern, we discovered) and still used the w-sitting position when she sat down, rather than legs crossed, poor muscle tone and several coordination issues. At that time, she scored between 36 and 48 months of age. She tested **two to three years** behind her chronological age at that time. Ella was given the BOT in March, a harder inventory, at age 7 yrs 3 months, and she scored
***AVERAGE*** !!!!
This is a huge jump in a year of therapy. Her PT suggested that they work in the next few weeks on an exercise program for her over the summer, and will probably recommend a certain number of minutes per week of bike riding and scooter riding and monkey bar crossing and rock wall scaling.. but after May, she gets to stop going to PT! We will check back in after summer and see how often we want to check in.
I am so thankful that we were able to have Ella evaluated at UNC, and that we have had such wonderful therapists to work with Ella. And I am so thankful that Grace has worked so hard. We are probably going to take Ella out for supper one night soon, and then go choose a new bike as a celebration for her hard work (since she has gotten too tall for her current one!).
I just wanted to share my excitement over my oldest daughter's accomplishment!
In late 2005 after several years of EEGs and MRIs related to her mysterious unspecified seizure disorder, we finally got Ella into some developmental testing related to her most recent MRI's revealing of abnormally low myelinated (white matter) areas in her brain. (This probably has nothing to do with her seizure disorder, though!)
The specialists we saw at UNC found her to be in the normal range for speech, hearing, vision, and issues relating to psychology. She was in the lower range according to the developmental pediatrician, the physical therapist, and the occupational therapist. In addition to OT and PT they recommended her for sensory therapy. We never did get sensory therapy covered by insurance, but her OT has worked on some things with her, and I have been doing a lot of reading on that front to address ongoing issues.
Ella received an evaluation from her OT a few weeks ago. She has made great strides, but continues to test lowest (two standard deviations below the norm) in the areas of manual dexterity and motor planning, but has some additional things to work on as well. She sees her OT twice a month, and we will probably re-evalulate in the fall.
Ella received an evaluation from her PT in the last few weeks, and I got the results today. Ella was given the Peabody Inventory at age 5 yrs 11 months, a fairly easy basic skills test compared to some others, plus she was at the top end of the age range suggested for administration of the Peabody. Her biggest areas of delay in PT were that she toe walked almost all the time (a neurological concern, we discovered) and still used the w-sitting position when she sat down, rather than legs crossed, poor muscle tone and several coordination issues. At that time, she scored between 36 and 48 months of age. She tested **two to three years** behind her chronological age at that time. Ella was given the BOT in March, a harder inventory, at age 7 yrs 3 months, and she scored
***AVERAGE*** !!!!
This is a huge jump in a year of therapy. Her PT suggested that they work in the next few weeks on an exercise program for her over the summer, and will probably recommend a certain number of minutes per week of bike riding and scooter riding and monkey bar crossing and rock wall scaling.. but after May, she gets to stop going to PT! We will check back in after summer and see how often we want to check in.
I am so thankful that we were able to have Ella evaluated at UNC, and that we have had such wonderful therapists to work with Ella. And I am so thankful that Grace has worked so hard. We are probably going to take Ella out for supper one night soon, and then go choose a new bike as a celebration for her hard work (since she has gotten too tall for her current one!).
I just wanted to share my excitement over my oldest daughter's accomplishment!
Saturday, April 7, 2007
Sensory Processing Disorder
I just wanted to post about this disorder, as it is one of the issues we deal with concerning our oldest child.
Ella was a high need baby (if you are unfamiliar with this term, here is a link to a checklist about that, sometimes referred to as fussy, intense babies who don't sleep! http://www.askdrsears.com/html/5/t050400.asp ) and I don't think ALL high need babies turn into children with sensory issues, but I think a fair amount do.
If you have not heard of Sensory Integration Disoreder or Sensory Processing Dysfuction, think of it sort of like dyslexia, but related to processing sensation rather than words and numbers. That's really simplistic, but gives somewhere to start. Great information can be found at these sites:
http://www.sensory-processing-disorder.com/index.html
and
http://www.kid-power.org/sid.html
We first wondered about sensory issues with Ella because she hated having dirty hands and would ask us to clean her hands multiple times during a meal, even as a young toddler (hand! hand! hand!), and she would not eat meat. She seemed to have difficulty as preschooler in figuring out how to clean up after herself (she would get lost if you told her to put the books n the shelf, the clothes in the hamper, and the toys in the toybox), and when Maddie was old enough to put her own velcro shoes on, Ella would have trouble understanding how to coordinate taking her shoes off and switching them to the right feet, but Maddie at 18 months understood and executed it well.
Ella had some seizures as a 14 month old and a 4 yr old, and she had yearly EEGs and MRIs. At her 5 yr old MRI, we found that she had a low level of myelination in her temporal lobes, and I started being a bit of a mama bear about finding out why she had this low amount and what that meant for her. We had an evaluation done when she turned 6, and along with gross and fine motor delays, her team of specialists decided that she had significant enough sensory issues to warrant Sensory Therapy along with OT and PT. Sadly, we can't afford sensory therapy as it is not covered by insurance, but it said a lot to me that they recommended therapy for it.
The biggest things that are difficult on a daily basis for us are her ways of making her needs known (often tends to either whine or throw a tantrum or accuse people of mistreating her or wanting her to hurt, be hungry, be sad, or whatever), hair shampooing with screaming and crying, lack of willingness to eat meat or try new foods with meat in them, clothes are too tight, show her belly, too itchy, too small, too big, tooooo something!, lack of desire to do outside play as it makes her too tired, poor posture and muscle tone as well as fine motor control get frustrating when doing school, and just in general, reaction to situtions out of proportion to stimulus!!!!
I read a great book called "The Out Of Sync Child" that really validated my suspicions about her issues, and showed me that her quirks all sort of fit into two categories, tactile defensiveness and proprioceptive/vestibular.
SIGNS OF TACTILE DYSFUNCTION:
1. HYPERSENSITIVITY TO TOUCH (tactile defensiveness):
__ becomes fearful, anxious or aggressive with light or unexpected touch
(Ella reacts with fight or flight to this and may strike out)
__ as an infant, did/does not like to be held or cuddled; may arch back, cry, and pull away
__ distressed when diaper is being, or needs to be, changed
__ appears fearful of, or avoids standing in close proximity to other people or peers (especially in lines)
__ becomes frightened when touched from behind or by someone/something they can not see (such as under a blanket)
__ complains about having hair brushed; may be very picky about using a particular brush
(at 7 Ella still cries when her hair is brushed and screams when being shampooed)
__ bothered by rough bed sheets (i.e., if old and "bumpy")
(has specific bed sheets, heavy for weight, and often sleeps on the floor)
__ avoids group situations for fear of the unexpected touch
__ resists friendly or affectionate touch from anyone besides parents or siblings (and sometimes them too!)
__ dislikes kisses, will "wipe off" place where kissed
__ prefers hugs
__ a raindrop, water from the shower, or wind blowing on the skin may feel like torture and produce adverse and avoidance reactions
__ may overreact to minor cuts, scrapes, and or bug bites
(elevate the limb! cancel social engagements!!)
__ avoids touching certain textures of material (blankets, rugs, stuffed animals)
__ refuses to wear new or stiff clothes, clothes with rough textures, turtlenecks, jeans, hats, or belts, etc.
(and will remember uncomfortable clothes still in he closet from a year ago!)
__ avoids using hands for play
__ avoids/dislikes/aversive to "messy play", i.e., sand, mud, water, glue, glitter, playdoh, slime, shaving cream/funny foam etc.
(absolutely)
__ will be distressed by dirty hands and want to wipe or wash them frequently
(absolutely)
__ excessively ticklish
(this too)
__ distressed by seams in socks and may refuse to wear them
(ys yes yes, seamless socks are the answer!!)
__ distressed by clothes rubbing on skin; may want to wear shorts and short sleeves year round, toddlers may prefer to be naked and pull diapers and clothes off constantly
(has funky textured clothes, prefers skirts and loose yoga pants, and no turtlenecks or lacy sleeves or neckline)
__ or, may want to wear long sleeve shirts and long pants year round to avoid having skin exposed
__ distressed about having face washed
__ distressed about having hair, toenails, or fingernails cut
__ resists brushing teeth and is extremely fearful of the dentist
__ is a picky eater, only eating certain tastes and textures; mixed textures tend to be avoided as well as hot or cold foods; resists trying new foods
(does not eat meat, resists trying new foods)
__ may refuse to walk barefoot on grass or sand
__ may walk on toes only
(Ella toe walked for so long that she has permanently shortened heel cords and wears night braces to elongate them)
3. POOR TACTILE PERCEPTION AND DISCRIMINATION:
__ has difficulty with fine motor tasks such as buttoning, zipping, and fastening clothes
(Ella's manual dexterity scores are more than 2 standard deviations below the norm)
__ may not be able to identify which part of their body was touched if they were not looking
(yep)
__ may be afraid of the dark
__ may be a messy dresser; looks disheveled, does not notice pants are twisted, shirt is half untucked, shoes are untied, one pant leg is up and one is down, etc.
__ has difficulty using scissors, crayons, or silverware
(scissors especially, and handwriting is not age appropriate)
__ continues to mouth objects to explore them even after age two
__ has difficulty figuring out physical characteristics of objects; shape, size, texture, temperature, weight, etc.
__ may not be able to identify objects by feel, uses vision to help; such as, reaching into backpack or desk to retrieve an item
(if she cant see her hands, she has trouble figuring out what they are doing or feeling)
VESTIBULAR SENSE: input from the inner ear about equilibrium, gravitational changes, movement experiences, and position in space.
SIGNS OF VESTIBULAR DYSFUNCTION:
1. HYPERSENSITIVITY TO MOVEMENT (over-responsive):
__ avoids/dislikes playground equipment; i.e., swings, ladders, slides, or merry-go-rounds
(took her a long time to enjoy things besides swings and slides)
__ prefers sedentary tasks, moves slowly and cautiously, avoids taking risks, and may appear "wimpy"
(yes, doesnt want to risk take and is afraid of appearing clumsy)
__ avoids/dislikes elevators and escalators; may prefer sitting while they are on them or, actually get motion sickness from them
__ may physically cling to an adult they trust
__ may appear terrified of falling even when there is no real risk of it
__ afraid of heights, even the height of a curb or step
(has trouble navigating these things)
__ fearful of feet leaving the ground
__ fearful of going up or down stairs or walking on uneven surfaces
__ afraid of being tipped upside down, sideways or backwards; will strongly resist getting hair washed over the sink
__ startles if someone else moves them; i.e., pushing his/her chair closer to the table
__ as an infant, may never have liked baby swings or jumpers
__ may be fearful of, and have difficulty riding a bike, jumping, hopping, or balancing on one foot (especially if eyes are closed)
(at 7 still has difficulty with a bike, has training wheels and leans terribly to one side, as her muscle tone is not good in her hips and back, and her left side is weaker than her right)
__ may have disliked being placed on stomach as an infant
__ loses balance easily and may appear clumsy
(and her middle name is Grace, we really work on this!!!)
__ fearful of activities which require good balance
(yep)
__ avoids rapid or rotating movements
3. POOR MUSCLE TONE AND/OR COORDINATION:
__ has a limp, "floppy" body
__ frequently slumps, lies down, and/or leans head on hand or arm while working at his/her desk
(yes, as does her father)
__ difficulty simultaneously lifting head, arms, and legs off the floor while lying on stomach ("superman" position)
__ often sits in a "W sit" position on the floor to stabilize body
(did this until she as 6 and we were told she shouldnt be doing it!)
__ fatigues easily!
(you have no idea!)
__ compensates for "looseness" by grasping objects tightly
__ difficulty turning doorknobs, handles, opening and closing items
(yep)
__ difficulty catching him/her self if falling
(this too)
__ difficulty getting dressed and doing fasteners, zippers, and buttons
(took a good long while, also related to manual dexterity)
__ may have never crawled as an baby
__ has poor body awareness; bumps into things, knocks things over, trips, and/or appears clumsy
(yep)
__ poor gross motor skills; jumping, catching a ball, jumping jacks, climbing a ladder etc.
(yes, at 6 had delays to between 36 anbd 48 months old)
__ poor fine motor skills; difficulty using "tools", such as pencils, silverware, combs, scissors etc.
(yes)
__ may appear ambidextrous, frequently switching hands for coloring, cutting, writing etc.; does not have an established hand preference/dominance by 4 or 5 years old
(yes, she does beginning cartwheels and she bats lefthanded, can write with both hands)
__ has difficulty licking an ice cream cone
__ seems to be unsure about how to move body during movement, for example, stepping over something
(yes, motor planning)
__ difficulty learning exercise or dance steps
(this is getting better with age and practice)
PROPRIOCEPTIVE SENSE: input from the muscles and joints about body position, weight, pressure, stretch, movement, and changes in position in space.
SIGNS OF PROPRIOCEPTIVE DYSFUNCTION:
1. SENSORY SEEKING BEHAVIORS:
__ seeks out jumping, bumping, and crashing activities
__ stomps feet when walking
(yes, walks on her heels hard)
__ kicks his/her feet on floor or chair while sitting at desk/table
(constantly)
__ bites or sucks on fingers and/or frequently cracks his/her knuckles
__ loves to be tightly wrapped in many or weighted blankets, especially at bedtime
(yes!!!)
__ prefers clothes (and belts, hoods, shoelaces) to be as tight as possible
(shoelaces!)
__ loves/seeks out "squishing" activities
(loves to be steamrolled)
__ enjoys bear hugs
__ excessive banging on/with toys and objects
__ loves "roughhousing" and tackling/wrestling games
__ frequently falls on floor intentionally
(the rest of these sound like her younger sister, Lily!)
__ would jump on a trampoline for hours on end
__ grinds his/her teeth throughout the day
__ loves pushing/pulling/dragging objects
__ loves jumping off furniture or from high places
__ frequently hits, bumps or pushes other children
__ chews on pens, straws, shirt sleeves etc.
. DIFFICULTY WITH "GRADING OF MOVEMENT":
__ misjudges how much to flex and extend muscles during tasks/activities (i.e., putting arms into sleeves or climbing)
__ difficulty regulating pressure when writing/drawing; may be too light to see or so hard the tip of writing utensil breaks
(often, but this has gotten better with practice)
__ written work is messy and he/she often rips the paper when erasing
(nearly every day)
__ always seems to be breaking objects and toys
__ misjudges the weight of an object, such as a glass of juice, picking it up with too much force sending it flying or spilling, or with too little force and complaining about objects being too heavy
__ may not understand the idea of "heavy" or "light"; would not be able to hold two objects and tell you which weighs more
__ seems to do everything with too much force; i.e., walking, slamming doors, pressing things too hard, slamming objects down
(all the time)
__ plays with animals with too much force, often hurting them
(also, she would often not understand how to remove her hand, and might push the animal to be able to pull her hand back)
1. HYPERSENSITIVITY TO ORAL INPUT (oral defensiveness):
__ picky eater, often with extreme food preferences; i.e., limited repertoire of foods, picky about brands, resistive to trying new foods or restaurants, and may not eat at other people's houses)
(absolutely a small repetoire of foods, but lots of veggies and fruits, and most breads and pastas are ok... but meats, meat dishes, main courses, those are hard)
__ may only eat "soft" or pureed foods past 24 months of age
__ may gag with textured foods
(absolutely, even at age 7)
__ has difficulty with sucking, chewing, and swallowing; may choke or have a fear of choking
__ resists/refuses/extremely fearful of going to the dentist or having dental work done
__ may only eat hot or cold foods
__ refuses to lick envelopes, stamps, or stickers because of their taste
__ dislikes or complains about toothpaste and mouthwash
__ avoids seasoned, spicy, sweet, sour or salty foods; prefers bland foods
(yes indeedy)
SOCIAL, EMOTIONAL, PLAY, AND SELF-REGULATION DYSFUNCTION:
EMOTIONAL:
__ difficulty accepting changes in routine (to the point of tantrums)
__ gets easily frustrated
__ often impulsive
__ functions best in small group or individually
__ variable and quickly changing moods; prone to outbursts and tantrums
__ prefers to play on the outside, away from groups, or just be an observer (no)
__ avoids eye contact (no)
__ difficulty appropriately making needs known
(yes to all of the above except those two I marked), and especially this last one, tends to either whine or throw a tantrum or accuse people of mistreating her or wanting her to hurt, be hungry, be sad, or whatever)
SELF-REGULATION:
__ excessive irritability, fussiness or colic as an infant
__ can't calm or soothe self through pacifier, comfort object, or caregiver
__ can't go from sleeping to awake without distress (waking was ok)
__ requires excessive help from caregiver to fall asleep; i.e., rubbing back or head, rocking, long walks, or car rides
(yes to the above)
Again, just wanted to share. Do any of the above sound like your child? I'd love to talk to you if it does!
Ella was a high need baby (if you are unfamiliar with this term, here is a link to a checklist about that, sometimes referred to as fussy, intense babies who don't sleep! http://www.askdrsears.com/html/5/t050400.asp ) and I don't think ALL high need babies turn into children with sensory issues, but I think a fair amount do.
If you have not heard of Sensory Integration Disoreder or Sensory Processing Dysfuction, think of it sort of like dyslexia, but related to processing sensation rather than words and numbers. That's really simplistic, but gives somewhere to start. Great information can be found at these sites:
http://www.sensory-processing-disorder.com/index.html
and
http://www.kid-power.org/sid.html
We first wondered about sensory issues with Ella because she hated having dirty hands and would ask us to clean her hands multiple times during a meal, even as a young toddler (hand! hand! hand!), and she would not eat meat. She seemed to have difficulty as preschooler in figuring out how to clean up after herself (she would get lost if you told her to put the books n the shelf, the clothes in the hamper, and the toys in the toybox), and when Maddie was old enough to put her own velcro shoes on, Ella would have trouble understanding how to coordinate taking her shoes off and switching them to the right feet, but Maddie at 18 months understood and executed it well.
Ella had some seizures as a 14 month old and a 4 yr old, and she had yearly EEGs and MRIs. At her 5 yr old MRI, we found that she had a low level of myelination in her temporal lobes, and I started being a bit of a mama bear about finding out why she had this low amount and what that meant for her. We had an evaluation done when she turned 6, and along with gross and fine motor delays, her team of specialists decided that she had significant enough sensory issues to warrant Sensory Therapy along with OT and PT. Sadly, we can't afford sensory therapy as it is not covered by insurance, but it said a lot to me that they recommended therapy for it.
The biggest things that are difficult on a daily basis for us are her ways of making her needs known (often tends to either whine or throw a tantrum or accuse people of mistreating her or wanting her to hurt, be hungry, be sad, or whatever), hair shampooing with screaming and crying, lack of willingness to eat meat or try new foods with meat in them, clothes are too tight, show her belly, too itchy, too small, too big, tooooo something!, lack of desire to do outside play as it makes her too tired, poor posture and muscle tone as well as fine motor control get frustrating when doing school, and just in general, reaction to situtions out of proportion to stimulus!!!!
I read a great book called "The Out Of Sync Child" that really validated my suspicions about her issues, and showed me that her quirks all sort of fit into two categories, tactile defensiveness and proprioceptive/vestibular.
SIGNS OF TACTILE DYSFUNCTION:
1. HYPERSENSITIVITY TO TOUCH (tactile defensiveness):
__ becomes fearful, anxious or aggressive with light or unexpected touch
(Ella reacts with fight or flight to this and may strike out)
__ as an infant, did/does not like to be held or cuddled; may arch back, cry, and pull away
__ distressed when diaper is being, or needs to be, changed
__ appears fearful of, or avoids standing in close proximity to other people or peers (especially in lines)
__ becomes frightened when touched from behind or by someone/something they can not see (such as under a blanket)
__ complains about having hair brushed; may be very picky about using a particular brush
(at 7 Ella still cries when her hair is brushed and screams when being shampooed)
__ bothered by rough bed sheets (i.e., if old and "bumpy")
(has specific bed sheets, heavy for weight, and often sleeps on the floor)
__ avoids group situations for fear of the unexpected touch
__ resists friendly or affectionate touch from anyone besides parents or siblings (and sometimes them too!)
__ dislikes kisses, will "wipe off" place where kissed
__ prefers hugs
__ a raindrop, water from the shower, or wind blowing on the skin may feel like torture and produce adverse and avoidance reactions
__ may overreact to minor cuts, scrapes, and or bug bites
(elevate the limb! cancel social engagements!!)
__ avoids touching certain textures of material (blankets, rugs, stuffed animals)
__ refuses to wear new or stiff clothes, clothes with rough textures, turtlenecks, jeans, hats, or belts, etc.
(and will remember uncomfortable clothes still in he closet from a year ago!)
__ avoids using hands for play
__ avoids/dislikes/aversive to "messy play", i.e., sand, mud, water, glue, glitter, playdoh, slime, shaving cream/funny foam etc.
(absolutely)
__ will be distressed by dirty hands and want to wipe or wash them frequently
(absolutely)
__ excessively ticklish
(this too)
__ distressed by seams in socks and may refuse to wear them
(ys yes yes, seamless socks are the answer!!)
__ distressed by clothes rubbing on skin; may want to wear shorts and short sleeves year round, toddlers may prefer to be naked and pull diapers and clothes off constantly
(has funky textured clothes, prefers skirts and loose yoga pants, and no turtlenecks or lacy sleeves or neckline)
__ or, may want to wear long sleeve shirts and long pants year round to avoid having skin exposed
__ distressed about having face washed
__ distressed about having hair, toenails, or fingernails cut
__ resists brushing teeth and is extremely fearful of the dentist
__ is a picky eater, only eating certain tastes and textures; mixed textures tend to be avoided as well as hot or cold foods; resists trying new foods
(does not eat meat, resists trying new foods)
__ may refuse to walk barefoot on grass or sand
__ may walk on toes only
(Ella toe walked for so long that she has permanently shortened heel cords and wears night braces to elongate them)
3. POOR TACTILE PERCEPTION AND DISCRIMINATION:
__ has difficulty with fine motor tasks such as buttoning, zipping, and fastening clothes
(Ella's manual dexterity scores are more than 2 standard deviations below the norm)
__ may not be able to identify which part of their body was touched if they were not looking
(yep)
__ may be afraid of the dark
__ may be a messy dresser; looks disheveled, does not notice pants are twisted, shirt is half untucked, shoes are untied, one pant leg is up and one is down, etc.
__ has difficulty using scissors, crayons, or silverware
(scissors especially, and handwriting is not age appropriate)
__ continues to mouth objects to explore them even after age two
__ has difficulty figuring out physical characteristics of objects; shape, size, texture, temperature, weight, etc.
__ may not be able to identify objects by feel, uses vision to help; such as, reaching into backpack or desk to retrieve an item
(if she cant see her hands, she has trouble figuring out what they are doing or feeling)
VESTIBULAR SENSE: input from the inner ear about equilibrium, gravitational changes, movement experiences, and position in space.
SIGNS OF VESTIBULAR DYSFUNCTION:
1. HYPERSENSITIVITY TO MOVEMENT (over-responsive):
__ avoids/dislikes playground equipment; i.e., swings, ladders, slides, or merry-go-rounds
(took her a long time to enjoy things besides swings and slides)
__ prefers sedentary tasks, moves slowly and cautiously, avoids taking risks, and may appear "wimpy"
(yes, doesnt want to risk take and is afraid of appearing clumsy)
__ avoids/dislikes elevators and escalators; may prefer sitting while they are on them or, actually get motion sickness from them
__ may physically cling to an adult they trust
__ may appear terrified of falling even when there is no real risk of it
__ afraid of heights, even the height of a curb or step
(has trouble navigating these things)
__ fearful of feet leaving the ground
__ fearful of going up or down stairs or walking on uneven surfaces
__ afraid of being tipped upside down, sideways or backwards; will strongly resist getting hair washed over the sink
__ startles if someone else moves them; i.e., pushing his/her chair closer to the table
__ as an infant, may never have liked baby swings or jumpers
__ may be fearful of, and have difficulty riding a bike, jumping, hopping, or balancing on one foot (especially if eyes are closed)
(at 7 still has difficulty with a bike, has training wheels and leans terribly to one side, as her muscle tone is not good in her hips and back, and her left side is weaker than her right)
__ may have disliked being placed on stomach as an infant
__ loses balance easily and may appear clumsy
(and her middle name is Grace, we really work on this!!!)
__ fearful of activities which require good balance
(yep)
__ avoids rapid or rotating movements
3. POOR MUSCLE TONE AND/OR COORDINATION:
__ has a limp, "floppy" body
__ frequently slumps, lies down, and/or leans head on hand or arm while working at his/her desk
(yes, as does her father)
__ difficulty simultaneously lifting head, arms, and legs off the floor while lying on stomach ("superman" position)
__ often sits in a "W sit" position on the floor to stabilize body
(did this until she as 6 and we were told she shouldnt be doing it!)
__ fatigues easily!
(you have no idea!)
__ compensates for "looseness" by grasping objects tightly
__ difficulty turning doorknobs, handles, opening and closing items
(yep)
__ difficulty catching him/her self if falling
(this too)
__ difficulty getting dressed and doing fasteners, zippers, and buttons
(took a good long while, also related to manual dexterity)
__ may have never crawled as an baby
__ has poor body awareness; bumps into things, knocks things over, trips, and/or appears clumsy
(yep)
__ poor gross motor skills; jumping, catching a ball, jumping jacks, climbing a ladder etc.
(yes, at 6 had delays to between 36 anbd 48 months old)
__ poor fine motor skills; difficulty using "tools", such as pencils, silverware, combs, scissors etc.
(yes)
__ may appear ambidextrous, frequently switching hands for coloring, cutting, writing etc.; does not have an established hand preference/dominance by 4 or 5 years old
(yes, she does beginning cartwheels and she bats lefthanded, can write with both hands)
__ has difficulty licking an ice cream cone
__ seems to be unsure about how to move body during movement, for example, stepping over something
(yes, motor planning)
__ difficulty learning exercise or dance steps
(this is getting better with age and practice)
PROPRIOCEPTIVE SENSE: input from the muscles and joints about body position, weight, pressure, stretch, movement, and changes in position in space.
SIGNS OF PROPRIOCEPTIVE DYSFUNCTION:
1. SENSORY SEEKING BEHAVIORS:
__ seeks out jumping, bumping, and crashing activities
__ stomps feet when walking
(yes, walks on her heels hard)
__ kicks his/her feet on floor or chair while sitting at desk/table
(constantly)
__ bites or sucks on fingers and/or frequently cracks his/her knuckles
__ loves to be tightly wrapped in many or weighted blankets, especially at bedtime
(yes!!!)
__ prefers clothes (and belts, hoods, shoelaces) to be as tight as possible
(shoelaces!)
__ loves/seeks out "squishing" activities
(loves to be steamrolled)
__ enjoys bear hugs
__ excessive banging on/with toys and objects
__ loves "roughhousing" and tackling/wrestling games
__ frequently falls on floor intentionally
(the rest of these sound like her younger sister, Lily!)
__ would jump on a trampoline for hours on end
__ grinds his/her teeth throughout the day
__ loves pushing/pulling/dragging objects
__ loves jumping off furniture or from high places
__ frequently hits, bumps or pushes other children
__ chews on pens, straws, shirt sleeves etc.
. DIFFICULTY WITH "GRADING OF MOVEMENT":
__ misjudges how much to flex and extend muscles during tasks/activities (i.e., putting arms into sleeves or climbing)
__ difficulty regulating pressure when writing/drawing; may be too light to see or so hard the tip of writing utensil breaks
(often, but this has gotten better with practice)
__ written work is messy and he/she often rips the paper when erasing
(nearly every day)
__ always seems to be breaking objects and toys
__ misjudges the weight of an object, such as a glass of juice, picking it up with too much force sending it flying or spilling, or with too little force and complaining about objects being too heavy
__ may not understand the idea of "heavy" or "light"; would not be able to hold two objects and tell you which weighs more
__ seems to do everything with too much force; i.e., walking, slamming doors, pressing things too hard, slamming objects down
(all the time)
__ plays with animals with too much force, often hurting them
(also, she would often not understand how to remove her hand, and might push the animal to be able to pull her hand back)
1. HYPERSENSITIVITY TO ORAL INPUT (oral defensiveness):
__ picky eater, often with extreme food preferences; i.e., limited repertoire of foods, picky about brands, resistive to trying new foods or restaurants, and may not eat at other people's houses)
(absolutely a small repetoire of foods, but lots of veggies and fruits, and most breads and pastas are ok... but meats, meat dishes, main courses, those are hard)
__ may only eat "soft" or pureed foods past 24 months of age
__ may gag with textured foods
(absolutely, even at age 7)
__ has difficulty with sucking, chewing, and swallowing; may choke or have a fear of choking
__ resists/refuses/extremely fearful of going to the dentist or having dental work done
__ may only eat hot or cold foods
__ refuses to lick envelopes, stamps, or stickers because of their taste
__ dislikes or complains about toothpaste and mouthwash
__ avoids seasoned, spicy, sweet, sour or salty foods; prefers bland foods
(yes indeedy)
SOCIAL, EMOTIONAL, PLAY, AND SELF-REGULATION DYSFUNCTION:
EMOTIONAL:
__ difficulty accepting changes in routine (to the point of tantrums)
__ gets easily frustrated
__ often impulsive
__ functions best in small group or individually
__ variable and quickly changing moods; prone to outbursts and tantrums
__ prefers to play on the outside, away from groups, or just be an observer (no)
__ avoids eye contact (no)
__ difficulty appropriately making needs known
(yes to all of the above except those two I marked), and especially this last one, tends to either whine or throw a tantrum or accuse people of mistreating her or wanting her to hurt, be hungry, be sad, or whatever)
SELF-REGULATION:
__ excessive irritability, fussiness or colic as an infant
__ can't calm or soothe self through pacifier, comfort object, or caregiver
__ can't go from sleeping to awake without distress (waking was ok)
__ requires excessive help from caregiver to fall asleep; i.e., rubbing back or head, rocking, long walks, or car rides
(yes to the above)
Again, just wanted to share. Do any of the above sound like your child? I'd love to talk to you if it does!
Friday, January 19, 2007
The Con of COntrolled Crying
Friday, 19 January 2007
*
The Con of Controlled Crying (CIO)
This is a subject I feel very passionately about, and I think this is a great article. It is a book excerpt, permission given to post:
The Con of Controlled Crying
by Pinky McKay
When controlled crying ("graduated extinction") was first advocated around twenty years ago, it was recommended for infants over six months old, not newborns. While there are still professionals who feel comfortable with variations of controlled crying for older babies, many of these people would see any such methods as inappropriate for younger babies. However, popular advice by various authors and even some baby sleep centers now commonly includes leaving babies as young as a couple of weeks old to cry in order to teach them to sleep, much like advice offered in the 1850s. Sometimes modern sleep-training methods are couched in euphemistic labels like “controlled comforting” or even “controlled soothing” and within each definition there can be different recommendations about how long to leave babies to cry and how often or how long to "comfort". Others simply advise leaving the baby to cry until he falls asleep.
Although many baby sleep trainers claim there is no evidence of harm from practices such as controlled crying, it is worth noting that there is a vast difference between "no evidence of harm" and "evidence of no harm". In fact, a growing number of health professionals are now claiming that training infants to sleep too deeply, too soon, is not in babies’ best psychological or physiological interests. A policy statement on controlled crying issued by the Australian Association of Infant Mental Health (AAIMHI) advises, "Controlled crying is not consistent with what infants need for their optimal emotional and psychological health, and may have unintended negative consequences." According to AAIMHI, "There have been no studies, such as sleep laboratory studies, to our knowledge, that assess the physiological stress levels of infants who undergo controlled crying, or its emotional or psychological impact on the developing child." Controlled crying is not consistent with what infants need.
Despite the popularity of controlled crying, it is not an evidence-based practice. Professor James McKenna, director of the Mother–Baby Behavioral Sleep Laboratory at the University of Notre Dame and acclaimed SIDS expert, described controlled crying as "social ideology masquerading as science". What this means is that despite a plethora of opinions on how long you should leave your baby to cry in order to train her to sleep, nobody has studied exactly how long it is safe to leave a baby to cry, if at all. Babies who are forced to sleep alone (or cry, because many do not sleep) for hours may miss out on both adequate nutrition and sensory stimulation such as touch, which is as important as food for infant development. Leaving a baby to "cry it out" in order to enforce a strict routine when the baby may, in fact, be hungry, is similar to expecting an adult to adopt a strenuous exercise program accompanied by a reduced food intake. The result of expending energy through crying while being deprived of food is likely to be weight loss and failure to thrive. Pediatrician William Sears has claimed that "babies who are 'trained' not to express their needs may appear to be docile, compliant or "good" babies. Yet, these babies could be depressed babies who are shutting down the expression of their needs."
Often the predisposing conditions for depression in infants are beyond our control, such as trauma due to early hospitalization and medical treatments. However, if we consider the baby’s perspective, it is easy to understand how extremely rigid regimes can also be associated with infant depression and why it isn’t worth risking, especially if your child has already experienced early separation. You too would withdraw and become sad if the people you loved avoided eye contact, as some sleep training techniques advise, and repeatedly ignored your cries.
Crying infants experience an increase in heart rate, body temperature and blood pressure. Leaving a baby to cry evokes physiological responses that increase stress hormones. Crying infants experience an increase in heart rate, body temperature and blood pressure. These reactions are likely to result in overheating and, along with vomiting due to extreme distress, could pose a potential risk of SIDS in vulnerable infants. There may also be longer-term emotional effects. There is compelling evidence that increased levels of stress hormones may cause permanent changes in the stress responses of the infant’s developing brain. These changes then affect memory, attention, and emotion, and can trigger an elevated response to stress throughout life, including a predisposition to later anxiety and depressive disorders. English psychotherapist, Sue Gerhardt, author of Why Love Matters: How Affection Shapes a Baby’s Brain, explains that when a baby is upset, the hypothalamus produces cortisol. In normal amounts cortisol is fine, but if a baby is exposed for too long or too often to stressful situations (such as being left to cry) its brain becomes flooded with cortisol and it will then either over- or under-produce cortisol whenever the child is exposed to stress. Too much cortisol is linked to depression and fearfulness; too little to emotional detachment and aggression.
One of the arguments for using controlled crying is that it "works", but perhaps the definition of success needs to be examined more closely. A recent Australian baby magazine survey revealed that although 57 per cent of mothers who responded to the survey had tried controlled crying, 27 per cent reported no success, 27 per cent found it worked for one or two nights, and only 8 per cent found that controlled crying worked for longer than a week. To me, this suggests that even if harsher regimes work initially, babies are likely to start waking again as they reach new developmental stages or conversely, they may become more settled and sleep (without any intervention) as they reach appropriate developmental levels.
I am so glad that I didn’t cave and do controlled crying. My baby is now fifteen months old and even my husband has thanked me for standing my ground on this one. Learning to listen to what is in my heart when it comes to parenting has been the greatest gift. I know myself better now and I think it has helped me in every area of my life. Just knowing that my instinctive responses are the right ones give me so much confidence as a mother. - Michelle
Controlled crying and other similar regimes may indeed work to produce a self-soothing, solitary sleeping infant. However, the trade-off could be an anxious, clingy or hyper-vigilant child or even worse, a child whose trust is broken. Unfortunately, we can’t measure attributes such as trust and empathy which are the basic skills for forming all relationships. We can’t, for instance, give a child a trust quotient like we can give him an intelligence quotient. One of the saddest emails I have received was from a mother who did controlled crying with her one-year-old toddler.
After a week of controlled crying he slept, but he stopped talking (he was saying single words). For the past year, he has refused all physical contact from me. If he hurts himself, he goes to his older brother (a preschooler) for comfort. I feel devastated that I have betrayed my child. - Sonia
It is the very principle that makes controlled crying “work” that is of greatest concern: when controlled crying “succeeds” in teaching a baby to fall asleep alone, it is due to a process that neurobiologist Bruce Perry calls the “defeat response”. Normally, when humans feel threatened, our bodies flood with stress hormones and we go into “fight” or “flight”. However, babies can’t fight and they can’t flee, so they communicate their distress by crying. When infant cries are ignored, this trauma elicits a “freeze” or “defeat” response. Babies eventually abandon their crying as the nervous system shuts down the emotional pain and the striving to reach out. Whether sleep "success" is due to behavioral principles (that is, a lack of "rewards" when baby wakes) or whether the baby is overwhelmed by a stress reaction, the saddest risk of all is that as he tries to communicate in the only way available to him, the baby who is left to cry in order to teach him to sleep will learn a much crueler lesson – that he cannot make a difference, so what is the point of reaching out. This is learned helplessness.
Secure attachments in infancy are the foundation for good adult mental health.
Neuroscientists and clinicians have documented that loving interactions that are sensitive to a child’s needs influence the way the brain grows and can increase the number of connections between nerve cells. The Australian Association of Infant Mental Health advises: “Infants are more likely to form secure attachments when their distress is responded to promptly, consistently and appropriately. Secure attachments in infancy are the foundation for good adult mental health.” So, when you adopt the perspective that your baby’s night howls are the expression of a need, and she is not trying to “manipulate” you, and you respond appropriately (this will vary depending on your baby’s age and needs), you are not only making her smarter, but you will be hardwiring her brain for future mental health.
Excerpted with permission of the author from "Sleeping Like a Baby".
Pinky McKay is the mother of five, an International Board Certified Lactation Consultant (IBCLC) and a Certified Infant Massage Instructor based in Melbourne, Australia. In addition to Sleeping Like a Baby, she is the author of Parenting By Heart, 100 Ways to Calm the Crying, and How do we Tell the Kids?. For more information, visit the author's website at http://www.pinky-mychild.com/
*
The Con of Controlled Crying (CIO)
This is a subject I feel very passionately about, and I think this is a great article. It is a book excerpt, permission given to post:
The Con of Controlled Crying
by Pinky McKay
When controlled crying ("graduated extinction") was first advocated around twenty years ago, it was recommended for infants over six months old, not newborns. While there are still professionals who feel comfortable with variations of controlled crying for older babies, many of these people would see any such methods as inappropriate for younger babies. However, popular advice by various authors and even some baby sleep centers now commonly includes leaving babies as young as a couple of weeks old to cry in order to teach them to sleep, much like advice offered in the 1850s. Sometimes modern sleep-training methods are couched in euphemistic labels like “controlled comforting” or even “controlled soothing” and within each definition there can be different recommendations about how long to leave babies to cry and how often or how long to "comfort". Others simply advise leaving the baby to cry until he falls asleep.
Although many baby sleep trainers claim there is no evidence of harm from practices such as controlled crying, it is worth noting that there is a vast difference between "no evidence of harm" and "evidence of no harm". In fact, a growing number of health professionals are now claiming that training infants to sleep too deeply, too soon, is not in babies’ best psychological or physiological interests. A policy statement on controlled crying issued by the Australian Association of Infant Mental Health (AAIMHI) advises, "Controlled crying is not consistent with what infants need for their optimal emotional and psychological health, and may have unintended negative consequences." According to AAIMHI, "There have been no studies, such as sleep laboratory studies, to our knowledge, that assess the physiological stress levels of infants who undergo controlled crying, or its emotional or psychological impact on the developing child." Controlled crying is not consistent with what infants need.
Despite the popularity of controlled crying, it is not an evidence-based practice. Professor James McKenna, director of the Mother–Baby Behavioral Sleep Laboratory at the University of Notre Dame and acclaimed SIDS expert, described controlled crying as "social ideology masquerading as science". What this means is that despite a plethora of opinions on how long you should leave your baby to cry in order to train her to sleep, nobody has studied exactly how long it is safe to leave a baby to cry, if at all. Babies who are forced to sleep alone (or cry, because many do not sleep) for hours may miss out on both adequate nutrition and sensory stimulation such as touch, which is as important as food for infant development. Leaving a baby to "cry it out" in order to enforce a strict routine when the baby may, in fact, be hungry, is similar to expecting an adult to adopt a strenuous exercise program accompanied by a reduced food intake. The result of expending energy through crying while being deprived of food is likely to be weight loss and failure to thrive. Pediatrician William Sears has claimed that "babies who are 'trained' not to express their needs may appear to be docile, compliant or "good" babies. Yet, these babies could be depressed babies who are shutting down the expression of their needs."
Often the predisposing conditions for depression in infants are beyond our control, such as trauma due to early hospitalization and medical treatments. However, if we consider the baby’s perspective, it is easy to understand how extremely rigid regimes can also be associated with infant depression and why it isn’t worth risking, especially if your child has already experienced early separation. You too would withdraw and become sad if the people you loved avoided eye contact, as some sleep training techniques advise, and repeatedly ignored your cries.
Crying infants experience an increase in heart rate, body temperature and blood pressure. Leaving a baby to cry evokes physiological responses that increase stress hormones. Crying infants experience an increase in heart rate, body temperature and blood pressure. These reactions are likely to result in overheating and, along with vomiting due to extreme distress, could pose a potential risk of SIDS in vulnerable infants. There may also be longer-term emotional effects. There is compelling evidence that increased levels of stress hormones may cause permanent changes in the stress responses of the infant’s developing brain. These changes then affect memory, attention, and emotion, and can trigger an elevated response to stress throughout life, including a predisposition to later anxiety and depressive disorders. English psychotherapist, Sue Gerhardt, author of Why Love Matters: How Affection Shapes a Baby’s Brain, explains that when a baby is upset, the hypothalamus produces cortisol. In normal amounts cortisol is fine, but if a baby is exposed for too long or too often to stressful situations (such as being left to cry) its brain becomes flooded with cortisol and it will then either over- or under-produce cortisol whenever the child is exposed to stress. Too much cortisol is linked to depression and fearfulness; too little to emotional detachment and aggression.
One of the arguments for using controlled crying is that it "works", but perhaps the definition of success needs to be examined more closely. A recent Australian baby magazine survey revealed that although 57 per cent of mothers who responded to the survey had tried controlled crying, 27 per cent reported no success, 27 per cent found it worked for one or two nights, and only 8 per cent found that controlled crying worked for longer than a week. To me, this suggests that even if harsher regimes work initially, babies are likely to start waking again as they reach new developmental stages or conversely, they may become more settled and sleep (without any intervention) as they reach appropriate developmental levels.
I am so glad that I didn’t cave and do controlled crying. My baby is now fifteen months old and even my husband has thanked me for standing my ground on this one. Learning to listen to what is in my heart when it comes to parenting has been the greatest gift. I know myself better now and I think it has helped me in every area of my life. Just knowing that my instinctive responses are the right ones give me so much confidence as a mother. - Michelle
Controlled crying and other similar regimes may indeed work to produce a self-soothing, solitary sleeping infant. However, the trade-off could be an anxious, clingy or hyper-vigilant child or even worse, a child whose trust is broken. Unfortunately, we can’t measure attributes such as trust and empathy which are the basic skills for forming all relationships. We can’t, for instance, give a child a trust quotient like we can give him an intelligence quotient. One of the saddest emails I have received was from a mother who did controlled crying with her one-year-old toddler.
After a week of controlled crying he slept, but he stopped talking (he was saying single words). For the past year, he has refused all physical contact from me. If he hurts himself, he goes to his older brother (a preschooler) for comfort. I feel devastated that I have betrayed my child. - Sonia
It is the very principle that makes controlled crying “work” that is of greatest concern: when controlled crying “succeeds” in teaching a baby to fall asleep alone, it is due to a process that neurobiologist Bruce Perry calls the “defeat response”. Normally, when humans feel threatened, our bodies flood with stress hormones and we go into “fight” or “flight”. However, babies can’t fight and they can’t flee, so they communicate their distress by crying. When infant cries are ignored, this trauma elicits a “freeze” or “defeat” response. Babies eventually abandon their crying as the nervous system shuts down the emotional pain and the striving to reach out. Whether sleep "success" is due to behavioral principles (that is, a lack of "rewards" when baby wakes) or whether the baby is overwhelmed by a stress reaction, the saddest risk of all is that as he tries to communicate in the only way available to him, the baby who is left to cry in order to teach him to sleep will learn a much crueler lesson – that he cannot make a difference, so what is the point of reaching out. This is learned helplessness.
Secure attachments in infancy are the foundation for good adult mental health.
Neuroscientists and clinicians have documented that loving interactions that are sensitive to a child’s needs influence the way the brain grows and can increase the number of connections between nerve cells. The Australian Association of Infant Mental Health advises: “Infants are more likely to form secure attachments when their distress is responded to promptly, consistently and appropriately. Secure attachments in infancy are the foundation for good adult mental health.” So, when you adopt the perspective that your baby’s night howls are the expression of a need, and she is not trying to “manipulate” you, and you respond appropriately (this will vary depending on your baby’s age and needs), you are not only making her smarter, but you will be hardwiring her brain for future mental health.
Excerpted with permission of the author from "Sleeping Like a Baby".
Pinky McKay is the mother of five, an International Board Certified Lactation Consultant (IBCLC) and a Certified Infant Massage Instructor based in Melbourne, Australia. In addition to Sleeping Like a Baby, she is the author of Parenting By Heart, 100 Ways to Calm the Crying, and How do we Tell the Kids?. For more information, visit the author's website at http://www.pinky-mychild.com/
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