My Low Muscle Tone (but tense?) baby

[dailyamayzed]

Hello! I am not frequent on these forums, but I like it here when my issues are very personal, because It feels nice to be "with" like minded folks .

My DD #3 is 7 months old and was Failure to Thrive @ 4 months weighing 8.5 lbs. I was EBF when I found out and she would take supplements by bottle (or any other way) so we nurse with an SNS now. She is gaining, but slowly!

She was evaluated by a Speech Therapist and diagnosed with low tone and suck issues. We had weekly therapy and did the Beckman regimen. It helped some, her tone is improved, but she still can take an hour to eat sometimes. :-x

Or ST referred us be evaluated by a PT out of concern for her other issues: not sitting, high sensitivity to noises, and other "quirky" stuff. The PT came and said she is low tone and she would benefit immensely from therapy.

I am relieved to know that we can help her, but also confused since I don't understand this "condition?". Also, my DD isn't "floppy" like described by many parents regarding this. She is actually quite tense most of the time. She is extending her legs tight and straight and also with her arms and back bending kind of backwards when laying on the floor. Has anyone else had a similar experience? ? Thanks for "listening"....

Renee

[by-the-lake]

Wow, I could have written half of your post! My son, 9 months, is dx as central hypotonia by a neurologist and has been in PT since 7 months for gross motor delays. Since birth, he would lock his legs and 'stand'. My PT identified that as an extention reflex to compensate for low tone. Make sense? Your baby could really benefit from PT. I have learned tons, and DS is making progress. Since our PT has worked with DS to 'break up' the tension, he doesnt lock his legs anymore, and its been easier to work with him.
He still has a ways to go and some other things we are seeing, but if not for the PT, we would be so much further behind!
I hope you seek your answers and good luck.

[dailyamayzed]

Thanks so much for sharing this! It sounds like what the PT was trying to tell me, but all my internet "research" has turned up nothing about that.

I am anxious to have a real therapy session when I can learn what to do for her. No one , including her doctor, thought she was low tone and that was because of her seeming to be so strong and straightening her legs and the like.

How is therapy? Is it easy/ hard? I have no idea what to expect! Just wading though it all...

[by-the-lake]

Therapy is alot of hard work for my son. He gets tired after about 25-30 minutes. Slowly, he is increasing his strength and goes a bit longer each time. The therapist is wonderful. She anticipates his needs and keeps things fun.
When do you start?

[marge234]

Have sensory issues been ruled out for your DD? If not, you might want to have her checked out by an OT who specializes in infants. My DS had very similar issues (also missed by peds). We got PT--which helped--but it turns out he has sensory integration problems. This is not uncommon with low tone and suck/swallow difficulties. His gross motor got on track but as he got older we started seeing trouble with communicating and relating.

There's also a book by Stanley Greenspan called Building Healthy Minds that might be helpful. Good for you taking care of business and getting her the help she needs!

[sbgrace]

My son was failure to thrive and had suck issues (and motor delays) due to low tone. He felt less than solid to me but that was in comparison to his twin. He wasn't excessively floppy but neither was he stiff. I do remember the PT telling me that his twin (who was a little stiff) probably had low tone as well but was compensating by being stiff. He could roll, hold up his head and things like that from, essentially, birth due to the tense tone stuff. I'd be wondering if sensory issues might be behind your daughter's mixed tone.

My son had a metabolic condition dx'd at 3.5 but he had other issues (severe reflux, other GI stuff, and on).

Therapy was very helpful for my child.

[CalaRei]

My littler twin is exactly as you're describing. Doesn't have the muscle tone, and seems to "tense up" in order to compensate. He couldn't sit up until this week, and if we tried to get him into that position, he'd be stiff as a board! He does a perfect "push up" pose where he's strait as a rail the whole way through, but didn't do proper "cross limb" crawling until recently - he'd flop on his belly and then drag with his arms over and over.

Our Ped hasn't brought anything up about it, though I was prepared to if he hadn't sat up by his 9 month. I still may address it briefly.

He also battled with pretty bad reflux.

[Moonchild77]

Have sensory issues been ruled out for your DD? If not, you might want to have her checked out by an OT who specializes in infants. My DS had very similar issues (also missed by peds). We got PT--which helped--but it turns out he has sensory integration problems. This is not uncommon with low tone and suck/swallow difficulties. His gross motor got on track but as he got older we started seeing trouble with communicating and relating.

yeah this!

you describe my 4.5 y old to the bone!!

He has Verbal Dyspraxia and SPD, so he gets OT and Wilbarger atm, I would let an OT take a look at him.
My son has a high neurological border-treashhold - http://classes.kumc.edu/sah/resource..._threshold.htm - - http://www.sensoryintelligence.co.za/educational-faqs he compensates his low muscle tone with high activity: at 4 mo old, he looked like a pullpuppet ,you know, with the string attached and when yoou pull, his legs and arms flare out ..

[dailyamayzed]

Originally Posted by by-the-lake

Therapy is alot of hard work for my son. He gets tired after about 25-30 minutes. Slowly, he is increasing his strength and goes a bit longer each time. The therapist is wonderful. She anticipates his needs and keeps things fun.
When do you start?

soon i hope! (crossing fingers) I have to get approved first. I am anxious to get started so that I know what I am doing is helping. Right now, I am still clueless!

The good news, for me, is that DD has just made it onto "the chart" and is in the third percentile. She has been around negative 10 for long time. It was a big high five moment and the docs office!

I guess its baby steps, huh?

[dailyamayzed]

Originally Posted by CalaRei

My littler twin is exactly as you're describing. Doesn't have the muscle tone, and seems to "tense up" in order to compensate. He couldn't sit up until this week, and if we tried to get him into that position, he'd be stiff as a board! He does a perfect "push up" pose where he's strait as a rail the whole way through, but didn't do proper "cross limb" crawling until recently - he'd flop on his belly and then drag with his arms over and over.

Our Ped hasn't brought anything up about it, though I was prepared to if he hadn't sat up by his 9 month. I still may address it briefly.

He also battled with pretty bad reflux.

it CAN'T hurt to bring it up and express your concerns! It took a PT evaluation for me to find this out (NOT my baby's dr.) so you might ask for a referral just for peace of mind...