This is a long post that I hope will lead to discussion among others who are dealing with a diagnosis of hypotonia.
Ds was recently diagnosed with pervasive hypotonia. To fit a long story into one sentence, I had him evaluated as a toddler (motor delayed but not enough to get services), and again as a 4 year old (pt thought he was just weak from a recent heart surgery) and each year I brought up motor skill concerns at every check up--the issue was always blamed (by the doctor) on ds not wanting to be a very active, outdoors-y child. This answer was never good enough for me, but I let it go, encouraged more outdoor activities, and when ds still displayed hypotonic behaviors, I finally decided to force his new doctor into a referral for a pt evaluation.
The new pt was stunned by this past history. Her swift and accurate diagnosis was pervasive hypotonia and a host of hypotonia-related problems (pronation of the ankles, postural orientation problems, etc.). She was frankly amazed that ds has displayed hypotonia for so long, in the presence of so many doctors, with me *saying* something seemed wrong, and not a single one made an accurate diagnosis. I don't think she was surprised, just amazed, as doctors are infamous for bungling this kind of diagnosis.
Anyway, now that we have the diagnosis, and ds is getting weekly physical therapy, I am trying to better understand this condition.
Hypotonia in infants is well documented, and ds had all the classic signs--all of his motor skills were very delayed, from holding up his head to walking. He was always floppy, never clung to you when carried, had a slouched posture, and was also a very, very poor nurser, with an unbelievably weak latch. I *knew* something was off, pointed this out to everyone at the time, but it was always brushed aside by doctors as ds' heart condition demanded their attention.
There is less said about hypotonic older children. The symptoms now are subtle but quite pervasive. Ds is physically incapable of moving at the speed of other children. He can get there--eventually--but he goes pretty slow at any gross motor activity. He cannot, and I must emphaise cannot, be rushed or hurried without disastrous results. Hurrying gross motor activities of any sort leads to panic, tripping, falling, confusion, total frustration etc.
Good posture is difficult.
His joints are hyper flexible--if he extends his arm fully, it keeps going past the straight point and bends in the other direction. He could (but is forbidden as it is bad for the joint), turn his ankle around practically sideways (yes he totally freaked me out the first time he did this!).
He uses his eyes to compensate for instinct--he watches his feet and hands when climbing a ladder, for example, to know where to place them, and must train his brain through repetition, rather than instinctive assessment, when learning competency at a new skill (such as navigating unfamiliar styles of stairways, or walking a narrow ledge). He can't just do these things quickly from the start--he has to go slowly, practice, and eventually, the skill becomes a habit.
Mainly, ds has compensating by becoming a highly verbal, intellectual person. He loves conversation, discussion of any kind, board games, computer games, anything that can be done at the table. He also loves slow paced walking and hiking, and was born the best traveller on the planet. He has a zest for going somewhere new, and with his very active mind, is almost never bored.
With other children ds will volunteer to be "the announcer" or "the referee" or "scorekeeper" if a group decides on a fast paced game. He did this naturally from an early age, knowing he could not keep up with running or moving quickly. I suppose this is a great era in which to be a hypotonic child, as ds has no problem making friends with sit-down activities like yu-gi-oh, Wii, Manga, you name it.
I have read that hypotonia is sometimes classified as a form of non-degenerative muscular dystrophy. Has anyone heard this description? It does fit, as ds simply cannot do more than he does, without habit, practice, and routine to replace the instinctive coordination and skills children naturally possess.
This is an excerpt from the excellent website linked below:
http://www.lightlink.com/vulcan/benign/
Ds was recently diagnosed with pervasive hypotonia. To fit a long story into one sentence, I had him evaluated as a toddler (motor delayed but not enough to get services), and again as a 4 year old (pt thought he was just weak from a recent heart surgery) and each year I brought up motor skill concerns at every check up--the issue was always blamed (by the doctor) on ds not wanting to be a very active, outdoors-y child. This answer was never good enough for me, but I let it go, encouraged more outdoor activities, and when ds still displayed hypotonic behaviors, I finally decided to force his new doctor into a referral for a pt evaluation.
The new pt was stunned by this past history. Her swift and accurate diagnosis was pervasive hypotonia and a host of hypotonia-related problems (pronation of the ankles, postural orientation problems, etc.). She was frankly amazed that ds has displayed hypotonia for so long, in the presence of so many doctors, with me *saying* something seemed wrong, and not a single one made an accurate diagnosis. I don't think she was surprised, just amazed, as doctors are infamous for bungling this kind of diagnosis.
Anyway, now that we have the diagnosis, and ds is getting weekly physical therapy, I am trying to better understand this condition.
Hypotonia in infants is well documented, and ds had all the classic signs--all of his motor skills were very delayed, from holding up his head to walking. He was always floppy, never clung to you when carried, had a slouched posture, and was also a very, very poor nurser, with an unbelievably weak latch. I *knew* something was off, pointed this out to everyone at the time, but it was always brushed aside by doctors as ds' heart condition demanded their attention.
There is less said about hypotonic older children. The symptoms now are subtle but quite pervasive. Ds is physically incapable of moving at the speed of other children. He can get there--eventually--but he goes pretty slow at any gross motor activity. He cannot, and I must emphaise cannot, be rushed or hurried without disastrous results. Hurrying gross motor activities of any sort leads to panic, tripping, falling, confusion, total frustration etc.
Good posture is difficult.
His joints are hyper flexible--if he extends his arm fully, it keeps going past the straight point and bends in the other direction. He could (but is forbidden as it is bad for the joint), turn his ankle around practically sideways (yes he totally freaked me out the first time he did this!).
He uses his eyes to compensate for instinct--he watches his feet and hands when climbing a ladder, for example, to know where to place them, and must train his brain through repetition, rather than instinctive assessment, when learning competency at a new skill (such as navigating unfamiliar styles of stairways, or walking a narrow ledge). He can't just do these things quickly from the start--he has to go slowly, practice, and eventually, the skill becomes a habit.
Mainly, ds has compensating by becoming a highly verbal, intellectual person. He loves conversation, discussion of any kind, board games, computer games, anything that can be done at the table. He also loves slow paced walking and hiking, and was born the best traveller on the planet. He has a zest for going somewhere new, and with his very active mind, is almost never bored.
With other children ds will volunteer to be "the announcer" or "the referee" or "scorekeeper" if a group decides on a fast paced game. He did this naturally from an early age, knowing he could not keep up with running or moving quickly. I suppose this is a great era in which to be a hypotonic child, as ds has no problem making friends with sit-down activities like yu-gi-oh, Wii, Manga, you name it.
I have read that hypotonia is sometimes classified as a form of non-degenerative muscular dystrophy. Has anyone heard this description? It does fit, as ds simply cannot do more than he does, without habit, practice, and routine to replace the instinctive coordination and skills children naturally possess.
This is an excerpt from the excellent website linked below:
Quote:
| For the child with BCH, “every movement is a fight against gravity” (Brown, 1998). While other children are reaching out for toys and exploring their environment, the hypotonic child is struggling to maintain his position. As a result of this struggle, development is delayed for the child with BCH. Parents carry the child with BCH like a young infant and lay the child flat for dressing. As a result, the hypotonic child becomes a passive onlooker. The child with BCH also talks late due to facial muscle weakness. Nonverbal communication is frequently limited which is interpreted as low cognitive ability. |
She totally gets dd, gets what keeps her motivated, and pushes her just enough to see some real gains.
: ) but i still see it. he's always been prone to tripping and stumbling over apparently nothing. he was a poor nurser, to the point where he wasn't gaining weight b/c he couldn't latch well or for long, and, sadly, i let the dr's and WIC push me to give him formula rather than doing any serious pumping so he was weaned by 4 months old. if i knew then what i know now.... but that's another thread!
Gosh, reading your story is so hard--just imagining that experience. 
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