Hypotonia and fatigue but sensory seeking - Mothering Forums

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#1 of 12 Old 07-29-2008, 02:28 PM - Thread Starter
 
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I am curious about others' experiences with young children with hypotonia.

My toddler has been diagnosed with hypotonia (very low muscle tone). I have noticed unwillingness to do any activity that requires more endurance than usual (such as walking).

My child will literally lay on the ground or cling to my legs until I carry them. I am hesitant to always carry, instead of forcing them to walk, because of two reasons...one, I'd like to build up their muscle tone if possible (is that even possible with hypotonia?) and two, they are just too heavy to carry everywhere.

It's an ongoing battle and it makes everything so difficult.

Now, in addition to the hypotonia, my child is also SPD (sensory processing disorder) and is high sensory needs. So, there is a good deal of lethargy and low energy for more endurance activities like walking, but there is frequent, short bursts of intense "energy" (more momentum than energy) where my child is literally bouncing off the walls, crashing into things, climbing, running, falling. It seems like they're totally out of control and not regulating their body while flying around seeking this input.

Anyone else with similar experiences with hypotonic/SPD children?
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#2 of 12 Old 07-29-2008, 02:53 PM
 
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Wow. Sounds like we have the same child!

Devon has been through testing for 2 years with a landslide of tests in between. We are no closer to a dx but I sure can relate to what you are talking about.

Fatigue is the biggest thing for us, next to the low muscle tone. Devon has sensory issues as well. She NEEDs a lot of stimulation to keep her senses "awake" sometimes when she is blah, I will bounce her on the exercise ball to "charge" her up. Devon will start E.I classes where there is a sensory gym. I am totally psyched about this. She is also a sensory avoider and is selectively tactile/auditory defensive. She hates having her hair washed and startles to loud noises sometimes. This has gotten better though. Going outside used to be a nightmare.

We do sensory brushing on Devon and it has helped with her tactile defensiveness. She is still very low tone but has compensated with strength, and yes you can do that through therapy. Devon, like your lo has burst of energy here and there. Mostly when she is excited by something. For ex: when we take the train. She loves train rides. Or when she sees her favorite cartoon characters on t.v.

Is your lo in Early Intervention? An Ot would be able to help with sensory issues though ours do mostly strength training with D because she really needs it. Devon is not yet mobile and I just can't wait till she get there.

Welcome.

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[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#3 of 12 Old 07-29-2008, 03:03 PM - Thread Starter
 
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Hi! Thank you.

Yes, what you described sounded very familar to me. That is what my child is like.

We are doing EI...seeing an OT. We've also done brushing. And a host of other therapies, as well. Some work well, some don't. Nothing has really helped with tone. A lot of it has helped with regulation.

We're just trying to navigate our way through all this.

Thanks for your reply.

What types of testing have you gone through? We've been through a series of testing as well.
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#4 of 12 Old 07-29-2008, 03:31 PM
 
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Geez louise!

Well, it would be easier if I tell you the tests we DIDN'T do. The only thing left are the muscle/skin biopsy and lumbar puncture. We are still waiting for results of the mDNA (mito DNA) and SNIP (testing for a million chromosomal mutations).

How old is your child? and I see he or she is walking. When was this milestone reached if you don't mind me asking? I am curious since you said your child is very low tone.

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[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#5 of 12 Old 07-29-2008, 03:34 PM - Thread Starter
 
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Geez louise!

Well, it would be easier if I tell you the tests we DIDN'T do. The only thing left are the muscle/skin biopsy and lumbar puncture. We are still waiting for results of the mDNA (mito DNA) and SNIP (testing for a million chromosomal mutations).

How old is your child? and I see he or she is walking. When was this milestone reached if you don't mind me asking? I am curious since you said your child is very low tone.

Mary:


You've been through a lot.

We've also had the SNIP test, I believe. Lots of genetic testing. All negative. We've been through other testing, too. Nothing in our family history...

Anyway, yes, my LO is walking. Let's see...I believe that milestone was reached around 16 or 17 months...much later than those in our peer group. Well, that would be for starting to walk. Walked well at around 18 months. For what it's worth, nearly ALL milestones have been delayed slightly or signficantly with my child but all milestones (for the most part) were eventually reached (just not on time).

How much did your LO weigh at birth? Was it a term birth? How big was your placenta? Ours was very small, and had stopped working for some reason. We also had very low Apgars.
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#6 of 12 Old 07-29-2008, 05:20 PM
 
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Walking at 16 or 17 months is hardly late in the low tone world!
My typical nephew walked at 2 yrs. old and no one batted an eye.

Devon was born 41 weeks weight was 7lbs. 11 oz. and was 21-1/2 inches. Apgars were 9/9. No lightweight and placenta was of normal size.

It sounds like the main issue with your los is endurance.
I wonder if your los has has metabolic testing. Some of the basic things are screened like hypothyroidism at birth but it is really basic and metabolics can cover a lot of ground. We have done the metabolics and now are looking at the mitochondria.


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[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#7 of 12 Old 07-29-2008, 05:23 PM - Thread Starter
 
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Originally Posted by newmothermary View Post
Walking at 16 or 17 months is hardly late in the low tone world!
My typical nephew walked at 2 yrs. old and no one batted an eye.

Devon was born 41 weeks weight was 7lbs. 11 oz. and was 21-1/2 inches. Apgars were 9/9. No lightweight and placenta was of normal size.

It sounds like the main issue with your los is endurance.
I wonder if your los has has metabolic testing. Some of the basic things are screened like hypothyroidism at birth but it is really basic and metabolics can cover a lot of ground. We have done the metabolics and now are looking at the mitochondria.


Mary:
Thanks. No, I don't think we've had any metabolic testing. I'll look into that.

We have slight motor skill delays. Walking was delayed (as was crawling) but not extremely so. The major delays are speech and growth. We also have hypotonia, heart murmur, small size, and a few other things...

Thanks again. Best wishes.
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#8 of 12 Old 07-29-2008, 05:54 PM
 
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Sounds like my son! Low tone, fatigue, but sensory seeking!

I agree with looking into metabolic issues. Especially since it looks like there's multi-system involvement.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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#9 of 12 Old 07-29-2008, 06:28 PM - Thread Starter
 
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Originally Posted by my3peanuts View Post
Sounds like my son! Low tone, fatigue, but sensory seeking!

I agree with looking into metabolic issues. Especially since it looks like there's multi-system involvement.
Thanks.

I'm pretty sure we've posted in similar threads before...our LOs must have a few similarities.

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#10 of 12 Old 07-31-2008, 09:43 AM
 
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We have low tone and fatigue, no sensory seeking but a big perfectionist!
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#11 of 12 Old 07-31-2008, 03:06 PM
 
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I think low tone kids are often sensory seeking--especially proprioceptive. My son is. He has a metabolic condition but we didn't know until he was 3.5. His main things were fatigue, hypotonia, severe reflux and other gastro stuff, and developmental delays/differences. I posted on your other thread a link with metabolic information.

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#12 of 12 Old 08-01-2008, 08:57 AM - Thread Starter
 
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Originally Posted by sbgrace View Post
I think low tone kids are often sensory seeking--especially proprioceptive. My son is. He has a metabolic condition but we didn't know until he was 3.5. His main things were fatigue, hypotonia, and developmental delays/differences. I posted on your other thread a link with metabolic information.
I agree!

My LO has low tone (hypotonia diagnosis from a doctor) and is extremely high sensory needs, especially propprioceptive!

The symptoms we've seen so far as fatigue, hypotonia, and developmental delays (speech significantly delayed, receptive speech slightly delayed, motor skills slightly delayed).

We also had a lot of trouble getting started with breastfeeding, but then ended up breastfeeding for 2 plus years.

Also, at birth, we had an abnormally colored, shaped, and sized (very, very small) placenta, low Apgars, small birth weight, heart murmur, and a few other issues that landed us in the NICU.
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