Low muscle tone - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 18 Old 04-13-2008, 08:49 PM - Thread Starter
 
Zoe mum of three's Avatar
 
Join Date: Apr 2008
Location: England
Posts: 10
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi there,

I am new on here so please bare with me, My daughter is 11 months old and has just been diagnosed with low muscle tone, she is unable to sit unaided and can't crawl etc, she is undergoing various tests for Genetics and Chromosomes and possibly a brain scan in the near future, had anyone else come across this?
We are really struggling day to day, for example yesterday we went to try and get her the next size car seat ( forward facing ) but has she is unable to sit unaided she can't go in one but she is too heavy to stay i the rear facing one, has anyone else had this type of problem and what did you do? any advice or help would be much appreciated.
Thank you
Zoe
Zoe mum of three is offline  
#2 of 18 Old 04-13-2008, 08:55 PM
 
bandgeek's Avatar
 
Join Date: Sep 2006
Posts: 2,406
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Zoe mum of three View Post
Hi there,

I am new on here so please bare with me, My daughter is 11 months old and has just been diagnosed with low muscle tone, she is unable to sit unaided and can't crawl etc, she is undergoing various tests for Genetics and Chromosomes and possibly a brain scan in the near future, had anyone else come across this?
We are really struggling day to day, for example yesterday we went to try and get her the next size car seat ( forward facing ) but has she is unable to sit unaided she can't go in one but she is too heavy to stay i the rear facing one, has anyone else had this type of problem and what did you do? any advice or help would be much appreciated.
Thank you
Zoe
Hi and welcome! How much does your DD weigh? If she is under 35 lbs there are many seats available that she could rear-face in. If not, then there are certain seats that can be slightly reclined while forward-facing that would keep her from flopping forward. Sitting up is not the milestone you look for for forward-facing, it is age and size. There's a good chance my DD won't ever sit up, or it will be a long time from now and she'll have to face forward sometime!

No matter what her tests and scan show, she could benefit from therapy. See what your insurance will pay for as far as occupational and physical therapy goes and then get her on a waiting list ASAP.
bandgeek is offline  
#3 of 18 Old 04-13-2008, 08:58 PM
 
bandgeek's Avatar
 
Join Date: Sep 2006
Posts: 2,406
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I just saw that you are in the UK, obviously car seats are different there.

If you post in the family safety forum with that particular issue, and let them know you are in the UK, they will probably be able to help you find the right seat for your DD.
bandgeek is offline  
#4 of 18 Old 04-13-2008, 09:03 PM
 
bandgeek's Avatar
 
Join Date: Sep 2006
Posts: 2,406
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I should probably share my experience.

My DD suffered moderate/severe brain damage at birth and has low muscle tone. At 6 months, she's still pretty much a newborn. She doesn't have very much head control and virtually no trunk control. Her physical therapist is hopeful that by a year she'll sit with minimal support, roll both ways, and get into a pre-crawling position. Of course, this is just what we are hoping for. She may not ever do any of that.

Here is her blog if you are interested in reading it: http://mylittlefighter.blogspot.com
bandgeek is offline  
#5 of 18 Old 04-13-2008, 09:03 PM - Thread Starter
 
Zoe mum of three's Avatar
 
Join Date: Apr 2008
Location: England
Posts: 10
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
That is really helpful thank you so much, She is having physiotherapy at the moment and has been for sometime but appears not to be working at the moment. Thanks again.
Zoe mum of three is offline  
#6 of 18 Old 04-13-2008, 09:05 PM
 
irangel's Avatar
 
Join Date: Aug 2005
Posts: 2,160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Yes, my dd2 has static encphalopathy that manifests itself as moderate hypotonia. She didn't sit up or roll over until 13mos, crawl until 19mos and walk until 23mos. She's now 25mos and still very uncoordinated and much floppier compared to other's her age. Her hypotonia has probably affected her speech and eating more than anything else as her muscles within her mouth are very hypotonic and she's exclusively tube fed and non-verbal.

There are several people here with kids who are hypotonic so you'll get a lot of different stories. We've been to genetics, metabolic, neurology and had several MRIs, CT scans, more blood tests than I can count. Some things come back abnormal but nothing that tells us specifically what's going on. She was born 4mos premature and has coded on more than one occasion and I think our doctors have pretty much decided her "brain damage" is from lack of oxygen.

In terms of the carseat, I don't know your daughter's size but even once she outgrows the infant carseat, you can get a conertible carseat that will hold a child rear facing up to 30-33lbs. My dd2 is only 18lbs and we're a long ways from reaching the minimum of 20lbs she needs to turn around and even once she does we'll keep her rear facing until she reaches whatever the limit is (33lbs I think it is) on our carseat. We have a Britax Roundabout but she often times rides in her brother's Decathlon rear facing (it's much bigger than the Roundabout) and the padding seems to help keep her supported much better.
irangel is offline  
#7 of 18 Old 04-13-2008, 09:08 PM - Thread Starter
 
Zoe mum of three's Avatar
 
Join Date: Apr 2008
Location: England
Posts: 10
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Your DD sounds very similar to my little one in the fact they have both got trunkel weakness, My DD does roll both ways very well now, but she won't sit at all or have any weight put on her legs, when we try and hold her in a standing position she just pulls her legs up. Kids hey, worry worry worry!!!
Zoe mum of three is offline  
#8 of 18 Old 04-13-2008, 09:10 PM - Thread Starter
 
Zoe mum of three's Avatar
 
Join Date: Apr 2008
Location: England
Posts: 10
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thank you, I can't thank you all enough for all your advice, could i just point out though i am in the UK so not sure if the regualtions may be different over here?
Zoe mum of three is offline  
#9 of 18 Old 04-13-2008, 09:22 PM
 
bandgeek's Avatar
 
Join Date: Sep 2006
Posts: 2,406
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Zoe mum of three View Post
Thank you, I can't thank you all enough for all your advice, could i just point out though i am in the UK so not sure if the regualtions may be different over here?
Yes, I know that car seats don't rear-face near as long over there. It's a shame too, since it's so much safer.

I don't know the laws there, but could you import a bigger seat? We can't do it here, but some people still find a way. It's illegal, but if it's or their safety, some parents are willing to accept the legal risk.

Here we have trained child passenger safety techs to help with car seats. Do you have anything like that there? That would be the first person I would go to for help.
bandgeek is offline  
#10 of 18 Old 04-13-2008, 09:30 PM - Thread Starter
 
Zoe mum of three's Avatar
 
Join Date: Apr 2008
Location: England
Posts: 10
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm not sure if we have anything like that over here, i have never heard of it if we have, i will have to mention it to DD Consultant when we see her next.
Zoe mum of three is offline  
#11 of 18 Old 04-13-2008, 09:36 PM
 
bandgeek's Avatar
 
Join Date: Sep 2006
Posts: 2,406
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Zoe mum of three View Post
I'm not sure if we have anything like that over here, i have never heard of it if we have, i will have to mention it to DD Consultant when we see her next.
Even if there is no way to keep her rear-facing, there are things you can do to keep her safer. Making sure the car seat is properly tethered is one of them. I'm not familiar with seats there, but here in the US, some seats do better during testing with head excursion. Picking the seat with the least amount of head excursion and then tethering it is what I would do.
bandgeek is offline  
#12 of 18 Old 04-13-2008, 09:57 PM
 
irangel's Avatar
 
Join Date: Aug 2005
Posts: 2,160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Zoe mum of three View Post
I'm not sure if we have anything like that over here, i have never heard of it if we have, i will have to mention it to DD Consultant when we see her next.
Britax is actually a UK brand and is available over there. It's one of the best brands out there in terms of safety. You might check it out. I don't know what their carseat weight limits are over there but here they stay rear facing a really long time.

http://www.britax.co.uk/index.php?op...id=6&Itemid=31

That's essentially the type of seat you'd need, one that's made to stay rear facing a lot longer than your typical car seats over there.
irangel is offline  
#13 of 18 Old 04-13-2008, 10:04 PM
 
sbgrace's Avatar
 
Join Date: Sep 2004
Posts: 9,213
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Yes, check into a Britax.

My son presented first with hyptonia. We discovered other issues as time went on. At 3.5 we found out he has a metabolic condition (mitochondrial disorder) that was causing all his issues. I'm glad they are testing now for your daughter. Is she otherwise healthy and developmentally on track?

Rachelle, mommy to 8 year old boys! 

My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement

sbgrace is offline  
#14 of 18 Old 04-13-2008, 10:48 PM
 
OMama's Avatar
 
Join Date: Feb 2005
Location: in the moment
Posts: 1,935
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Welcome Zoe!

My DS is 18 months. At 5.5 he was diagnosed with a vascular anomaly in his cerebellum. He had brain surgery at 9.5 months. He continues to be delayed but definitely has made some progress! He didn't really sit up until about 11 months. He still topples over sometimes but not nearly what it was like before. He has hypotonia (low muscle tone) and ataxia (difficulty with balance and coordination). It took him a long time to roll over, and to perfect the "commando" crawl. He can now crawl on his hands and knees but just for short distances. He started pulling to stand at about 14 months. He is still along way from walking since he can't even stand independently but we do believe he'll get there some day. I'd definitely get various tests run and personally I'd have an MRI done if they don't turn up anything else. We would have never known what was in our son's brain had we not gone that route.

Hang in there! And if your current therapy isn't working you could try another therapist, maybe? Not sure how it is structured, and there is no guarantee it would help. One of the hardest things about this is patience! Don't give up hope! Enjoy and celebrate your DD's strengths and accomplishments. Like rolling for example. That is GREAT!

Amazing Mama Birth Services
CD(DONA) and Birthing From Within Mentor and Birth Doula
OMama is offline  
#15 of 18 Old 04-14-2008, 08:44 AM
 
peekyboo's Avatar
 
Join Date: Mar 2005
Location: crocheting a new tinfoil hat
Posts: 2,042
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My dd was first diagnosed with hypotonia at about 13 months. She sat up at 9 months, crawled at ten, pulled up at 12 months. She didn't walk though until almost 23 months.

Now, my dd has since been diagnosed with global delays and a few other things, but all the tests but one have come back normal. (She had an abnormal EEG after having a seizure in December...turns out to be a good thing b/c after started seizure meds, she's talking and doing so much more!) So why she has delays and low muscle tone is still unanswered. Our doctors have reminded us that while yes, we don't know what is causing these things, at the same time, we know she doesn't have something that could be a whole lot of not fun.

On the flipside of hypotonia was the little girl who was in therapy with my dd. She was a couple months older and didn't crawl or pull up, just scooted on her bum to get around. She ended up walking at 20 months and had no other issues.

My daughter is funny - she can be very cautious at times and will hold off trying something new until she's absolutely certain she'll be okay. Like walking - she probably could have walked sooner, but she just wasn't ready mentally to let go. She wanted to make sure she wasn't going to fall over! To this day, she hates unstable surfaces...last week we took her to a place that has those big inflatable jump toys - she was excited and terrified at the same time. We finally found one that wasn't too squishy, that she could manage, and then she had a blast!

Feel free to click on the blog in my signature here if you want to know more about us...there's also a link to handy sites there.
peekyboo is offline  
#16 of 18 Old 04-14-2008, 10:50 AM - Thread Starter
 
Zoe mum of three's Avatar
 
Join Date: Apr 2008
Location: England
Posts: 10
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thank you for your reply, My DD is still only eating pureed food she won't entertain anything with lumps in it at all, my health visitor has referred her to a speech therapist has this could be linked to the low muscle tone and could effect her speech, other than that she is healthy although sometimes i think she is too placid, she very rarely cries ( some might say this s a good thing lol )
I have managed to speak to Britax this morning and they have put me onto a place that will be able to provide us with a car seat 3 hours car journey away :-(
Zoe mum of three is offline  
#17 of 18 Old 04-14-2008, 12:11 PM
 
irangel's Avatar
 
Join Date: Aug 2005
Posts: 2,160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Zoe mum of three View Post
Thank you for your reply, My DD is still only eating pureed food she won't entertain anything with lumps in it at all, my health visitor has referred her to a speech therapist has this could be linked to the low muscle tone and could effect her speech, other than that she is healthy although sometimes i think she is too placid, she very rarely cries ( some might say this s a good thing lol )
I have managed to speak to Britax this morning and they have put me onto a place that will be able to provide us with a car seat 3 hours car journey away :-(
I'm so glad you have the referral to a speech therapist. I hope that she can help you out.

Can they ship the carseat to you so you wouldn't have to drive?
irangel is offline  
#18 of 18 Old 04-15-2008, 03:22 PM - Thread Starter
 
Zoe mum of three's Avatar
 
Join Date: Apr 2008
Location: England
Posts: 10
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I did ask about shipping the car seat but they won't allow it to leave the shop without being fitted by a professional as it is quite complicated, something called tethering comes with it that needs to be fitted to the front seat too, i appreciate why the won't post it and i would rather drive 300 miles there and 300 miles back than us fit it incorrectly and something bad happen because of it being done wrong.
We'll have to make a day of it and go somewhere nice while we are there.
Zoe mum of three is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

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


Forum Jump: 

Posting Rules  
You may post new threads
You may 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