Has your child had an MRI to determine the cause of the Hypotonia?

Kimberly - posted on 08/21/2012

Everything came back "normal" at Geneticist appt. All labs- normal.
Kylie has also been taking several unassisted steps lately.

Kylie moved "normal" but she just wasn't growing. I had placenta previa and they took her early- 32 weeks. She was tiny. 2 lbs 13 ozs. More like a 27-28 weeker.

I am upping her speech to 3X week, and OT to 3X week. She already gets PT 3X/week and horse therapy every Saturday morning. I have been getting them to come out to the house all this time (minus the horse :)) But I am going to start taking her to clinic for her OT visits and see if that makes a difference- since they have so much equipment there and it over laps with PT. We'll see...

Sharon - posted on 08/10/2012

My son jaylin had a MRI with 3 days and they found nothing. How was it for you mommies while u were pregnant? Was the baby moving normal?

Lindsay - posted on 06/01/2012

My LO has speech therapy as well. We used to deal with a lot of eating issues. No chewing, difficulty swallowing. Speech therapy helped so much. He can chew no problem now. No more throwing up at meal times. Liam took 23 steps by himself yesterday. He looked like the scarecrow from Wizard of Oz but he still took 23 steps. Progress. :-)

Let us know about the Geneticist and how it all goes. We are still debating whether or not to go see one.

Kimberly - posted on 05/30/2012

We actually go to see the genetics folks tomorrow. MRI has shown "indirect evidence of PVL" but the last image in November seemed to show "regrowth of white matter" and overall improvement. making it appear pretty much "normal". Yeah, I didn't know that was possible either but I like the sound of it. Kylie is 3 years olds and 2 months and is not walking YET. I have faith that she will in her own time. Earlier this year she was taking around 10 unassisted steps as well but hasn't lately. She can also walk holding my hand- slowly as well. And can walk using a gait trainer. BUT, in the last week she has been crazy fast "tall kneel walking". Maybe that is the "step" before she gets up and goes...ya never know with this one. ;) (Hypotonia also affects her jaw- still working on textures and not talking YET).

Michelle - posted on 05/30/2012

Joseph has moderate hypotonia of the trunk. The hypotonia extends into the face (jaw) and legs. We did the MRI and nothing was evident. We did micro-array genetic testing and found nothing. Joseph is now 4.5 and does not walk. His weak trunk reduces his hio stability and makes it had for him to stand up. Joseph also has balance issues but we are not sure if it is due to hypotonia of the trunk or some other issue.

Joseph can walk with the help of a gait trainer or holding someone's hand (VERY SLOWLY).

Lindsay - posted on 05/30/2012

New to this group! My LO is 22 months and had his first MRI back in March which came back normal. Thank goodness. Still debating weather or not to go with genetic testing. Not sure I feel we need to. My LO is 22 months and still don't walk unassisted for more than 10 steps. Balance is pretty bad. Did you ladies deal with this at all. If so, when did you start to see improvements? Thanks.

Michelle - posted on 05/23/2012

We had Margaret and Joseph get an MRI. Both are hypotonic. Margaret is pretty high functioning and Joseph is very low functioning with significant hypotonia of the trunk. The MRI showed Margaret has PVL and disseminated white brain matter injury. Joseph on the other hand had a completely normal MRI. So we have NO idea why he has such a problem with hypotonia. It is perplexing!

Kimberly - posted on 03/28/2012

Everything is still such a mystery with us too. She was like a baby bird that fell out of the nest. :)

Sherry - posted on 03/16/2012

They are not sure as to exactly why my daughter was diagnosed with it. They said it could either be due to the oxygen deprivation that she experienced during labor or from the fever she had when she was 27 days old. She was born at 39 weeks, so that wasn't a factor.



Kylie was tiny!! ;-)

Kimberly - posted on 03/15/2012

No- they do not...but it is very very common in low birth weight premature babies. Kylie was a 32 weeker weighing in at 2 lbs 13 ozs...

Sherry - posted on 03/14/2012

Do the doctors know what was the cause of your daughter's PVL?

Sherry - posted on 03/14/2012

My daughter is actually doing great. She is now 7 1/2 (first grade). She received physical therapy from the time that she was 19 months until until she was 5 1/2. She received speech therapy from 19 month until 6 years old. She was denied speech last year, but she is being re-evaluated next week by our school district, and they are pretty certain that she will qualify. Her low muscle tone definitely affects her speech...which affects her spelling...which affects her reading...which affects her grades. It is like a domino effect!



Physically, she is doing fair. She will never qualify for physical therapy ever again, unless it it through my private insurance. We have tried many activites to help with her muscle tone...dance, gymnastics, soccer, ice skating. But the activity that has helped the most is competitive cheerleading. She didn't walk until she was almost 2 years old, and now she is working on front and back walkovers!

Kimberly - posted on 03/05/2012

How is your daughter doing? My Kylie will be turning 3 on the 9th and will start attending the PPCD program. We had our ARD meeting this morning. :)

Sherry - posted on 03/05/2012

My daughter had an MRI done at 18 months which gave us the PVL diagnosis. She had another one done at 3 years old to make sure that there was no change in the first MRI. Luckily there was no change.

Kimberly - posted on 01/17/2011

Here's a little about PVL:
https://health.google.com/health/ref/Periventricular+leukomalacia

Lisa - posted on 01/17/2011

Sorry what is PVL? My son JJ had an MRI shows multiple cavernous hemangiomas, and is having a CT scan next Friday because the Drs are arguing that it might be calcifications...wonder what they will find!

MICHELLE - posted on 01/02/2011

Jake had one at 6 mo's -it showed nothing. He had an EGG and then a muscle biopsi which gave us his conginital muscular dystrophy with merosin negative results.

Sarah - posted on 09/24/2010

Nick has one at 18 months and it showed nothing.