Tone in CP? - Mothering Forums

Thread Tools
#1 of 3 Old 02-21-2012, 04:20 AM - Thread Starter
purplepaisleymama's Avatar
Join Date: Jan 2007
Posts: 516
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

My youngest daughter has been diagnosed with CP, she had hypotonia as a baby, she was a ragdoll for the first 6 months or so and has transitioned  to a more 'normal' tone up until now.  I knew that something was going on with her when she was little, she was very different from our older kids and tone was the very least of my concerns.  She is finally not screaming for 6 hours a day now, so we are able to really see how she is progressing.  She is able to walk now at 15 months, she actually has been pretty on target for walking, she started at about one year.  I am relatively familiar with CP in that my Uncle has CP and we have quite a few friends with CP and friends with children with CP, so I have seen people with different tone and physical differences.  I had known that tone can differ in CP and that increased tone and spasticity is common but I hadn't known that a child with hypotonia could become hypertonic over time.  Our daughter has no real outward physical signs of having CP if she is just being carried or sitting, her tone appears normal if she is not walking.  She has a very odd gait, she doesn't have tight heel cords yet, though we are stretching them daily because her Ped Ortho is concerned that they are getting tighter and he wants to prevent any further progression.  She has always been very clumsy, she took months to stop falling over sitting up and standing, she is good now with sitting though she cannot really stand still without movement, she will sort of waver and sway when she stands.  When she walks she looks drunk, she weaves and stumbles, almost as if she is in a slow motion fall. 


I am wondering if it is normal to have a child transition from a low tone to a high tone at around toddlerhood?  I know that her odd gait is getting more noticable, especially to me.  When we are out and other people see her walking they will comment how she is just learning to walk and that her clumsiness will go away but it just seems to be increasing.....she is getting better at walking but her whole stance is changing now.  I found that putting high top chucks on her has helped her fall less, I feel that her ankles are not supporting her, she was falling and tripping more before we changed her shoes.  She has also started toe walking in the last few weeks, she would not do this before this month and now is doing it more and more....though I think that this might be all sensory related, as her sensory issues seem to be getting more intense now.  We are having her OT eval tomorrow so hopefully they will have some input soon.


I am not sure if the toe walking is reason enough to schedule an appointment with her Ped Ortho right now, she has an appointment in two months.  I guess I am trying to feel out if this is something that I need to be very concerned with or if it is a wait and observe type of thing.  Our Ped is not helpful at all, he is fine with the other kids but is not supportive of much with any of our approaches with our youngest.... he is convinced that our signing with our daughter will keep her from talking etc.  I am not really feeling supported at all and I think that my husband is going to go crazy if I keep asking him about all of this;)


laura, dh Brian, ds Rory 14, dd Ellie 13, ds Caelan 11, ds Seamus 9, ds Finn 7 and Penelope 2 !!!!

purplepaisleymama is offline  
Sponsored Links
#2 of 3 Old 03-04-2012, 09:39 PM
hdirks's Avatar
Join Date: Feb 2010
Location: Iowa
Posts: 195
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I'm not sure about tone changing into toddlerhood but my daughter has an unofficial dx of hypotonic cp and has always been very hypotonic and has hypermobility in her joints. She is one month away from turning three and just in the last week is finally walking on her own. So to me it looks like her tone is improving through physical therapy, but she is definitely still hypotonic and is easily worn out. She also has had to wear SMO orthotics for over a year now, otherwise she also stands on her toes or walks on the insides of her feet. Maybe orthotics would help your little one? Not sure how much help I am but just wanted you to know you're not alone! Hope you find the answers you're looking for :)

Wife to Robert 8-9-08
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
Mommy to Lani 4-24-09
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
and Cambria 3-25-11
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
and Brecken! 6-26-13
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
hdirks is offline  
#3 of 3 Old 03-04-2012, 10:28 PM
dbsam's Avatar
Join Date: Mar 2007
Posts: 2,153
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 4 Post(s)

My son has mild CP.  He is very tight - was tight as an infant and is still tight at age 7. 

I've read that muscle tone can change from low to high in infants with CP but I didn't realize it would change in toddlers.  Since CP is static, not progressive, I didn't think there would be much change (besides improvements that might be made with therapy.)

I feel for you when you mention the constant crying.  My son seemed to cry non-stop for the first two years of his life.



My daughter is low tone and floppy but does not have CP.  She was also a toe walker.  Both her tone and the toe walking have improved quite a bit...she is now 7.





dbsam is offline  

User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page

Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Online Users: 8,389

9 members and 8,380 guests
girlspn , GotProbs , jaho.lore , jamesmorrow , katelove , lisak1234 , manyhatsmom , Springshowers
Most users ever online was 449,755, 06-25-2014 at 12:21 PM.