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Hello all.
I'm fairly new to this section of the forums. We've been acquainted with special needs for some time; but our newest addition has some issues I'm not so familiar with. I'm learning more every day with our therapists from EI; but it always helps to hear/read/know someone who's child has already BTDT so I can know a bit more of what to possibly expect.
Our newest is only 8months old with a history of some alcohol exposure. (Not sure how much because what's been said might not be the truth either; AND, if the truth, the amount could still have affected her, KWIM?)
But, she's definately hypotonic...not to a huge degree, but limp, nonetheless. We've dealt with hyPERtonic with one of our children...but his issues werent' severe and within several months of EI, that basically disappeared.
My questions then involve the hypotonia and the possibility of a CP dx's in months to come. GENERALLY----does the hypotonia improve significantly over the months...or it is just a crap shoot that it might stay relatively the same?
I know what our therapist has told us....we'll have to wait. I also know she's making big progress....but she's still not able to sit up by herself, nor does she put a lot of weight on her legs when being held-up, KWIM? Not that it means there'll be no issues, BUT, her MRI was normal, chromosonal testings were 'normal'..and realizing we could test forever and still find no resolution, we've decided not to do genetic counseling until something more prominent would show up.
Any comments about parents of babies with hypotonia will be appreciated.
Sincerely,
Linny
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Not sure you want to hear my answers because my kid turned out to be the far worst case scenario but DD was/is hypotonic. I would say it did not improve gradually like a regular child but more in spurts. Like we would finally get her tummy muscles trained and then she could sit. The day before that she just fell over.
HyPOtonia, is not like HyPERtonia. Its not like its the end of the world to go a week without doing excersises.
Until you know the cause of the tone issues it is a little hard to actually fix but obviously nothing bad will come from doing the excersises given to you by the PT.
I don't know if its relevant to your DD or not but the biggest leap in physical skill my daughter ever had was a result of getting her eyes fixed. So if she has any potential vision issues get her eyes checked out.
Also, be aware that low tone does not mean she is otherwise disabled so make sure you are age appropriate with her. For instance, people sit in front of their 8 month olds and look at them while they play with them. You need to find a way she can be adaquately supported to play and learn age appropriately. I think bumbo's work pretty well. Also DD could sit in a ball pit long before she could safely sit on the floor.
My favorite site for adaptive stuff is [url=http://www.adaptivemall.com]Special Needs Strollers, Special Needs Car Seats, Adaptive Equipment[/url] Sometimes just looking at the stuff gives me ideas for things to try at home.
If you have any specific questions, let me know.
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Thanks for the link, Nevada. I'll be checking it out. Regarding her eyesight, there are no problems. We've had two pediatric opthomologists examine her closely....no problems.
I think I can relate to the improvements coming in spurts...as this might be what we're seeing now. But, I guess the main thing is to be positive and know that she-is-improving. At what age was *your* child able to sit up on her own? Is she in a wheelchair or able to walk?
Thanks for any input.
Sincerely,
Linny
She sat for a second on her first birthday and then was actually a good sitter around age 2. Yes she is in a wheel chair. SHe has an extrmely rare genetic condition. At one point she could walk with a walker but she has had a couple of strokes and you can't really use a walker for support when one of your arms does not work.
I guess my advice would be to just make sure she is doing as many age appropraite things as she can at this point so that once you get the physical stuff caught up she is not behind in other areas like small motor and academic. At that age for my DD we used her high chair a lot, the excersaucer, swing and a video game chair. Not for their original purposes but for sitting support so she could work on normal 8 month old stuff.
When we brought our son home in January, he was like a limp doll, his trunk strength was BEYOND horrible. We were told he would never walk without assistance... a VERY short time later, he walked, though very poorly (fell dozens and dozens of times a day). I did daily strengthening exercises with him for a loooong time. In June he receieved orthodics, which have helped his gait SOOOO much, he now falls maybe 4-5 times a day. He is also much stronger now and climbs up on things, runs around, etc... all without assistance. So, there you have the opposite scenario from Nevada Jen's daughter. I will say my son's walk and movements are not "typical" but he can do it.FYI my son did not sit up until one. He put very little weight through his legs even as he was learning to walk (he looked like his legs had no joints - sorta humorous in hind sight) which was part of the challenge for him I think.
Thank you both so much for your replies. This is basically unknown territory for me; yet years ago in college I worked with many children/adults with conditions similar to what our baby has. I'm not discouraged insomuch as I want to be sure I'm aware we're doing all we can---when we can. It's a good tip, Nevada to tell me to go ahead and try to get her to do 'age-appropriate things'...because I know in my mind, I find myself 'waiting for her to snap into normal'....before we'd try something else. I've not been negligent; in fact, the birth-three says I'm very good at 'carrying through'....but I find hesitation in attempting some things she might be able to do because, for instance, she's not 'sitting up yet by herself'...or, 'she's not verbalizing as she should'.
Anyway....thank you for being another form of resource....I'm going to need it.
Most Sincerely,
Linny
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