Anyone dealing with hypotonia?

jacobsone2 · September 2016

Hello ladies.

I took my 3 month son into his pedi last week because he is not lifting his head during tummy time. He is not even trying. She noticed how floppy he was when you pick him up and seemed very concerned. She did some bloodwork and ordered an MRI, which is tomorrow afternoon. The nurse swabbed him and are waiting on the results for the microarray test. I hate the waiting. I'm so sick about all of it. I am terrified for my son. For those dealing with hypotonia, have they found the cause? What was the diagnosis?

Also, has anyone had the microarray test? I read some reviews that said the results were normal and their child got diagnosed later on.

Any info would be great.

SaphireSweetie88 · September 2016

@jacobsone2

I don't have any experience with it but I hope you get some good news after the tests results come back.

jacobsone2 · September 2016

Thank you!

amp61470 · September 2016

My son was born with low muscle tone. He spent 12 days in the hospital due to it. He was not taking deep breaths when he went to sleep so they kept him until the muscle tone developed more. He had some minor issues at first with it. At a year old he is doing great and has hit all his milestones.

jacobsone2 · September 2016

@amp61470 did they ever say what caused it?

jacobsone2 · September 2016

My son had his MRI on Friday. It came back normal. Now we are just waiting on the genetic testing. The waiting sucks

amp61470 · September 2016

Jacobsone2 it was due to a medication I was taking when I was pregnant that everyone said was safe. We had early intervention involved, and at a year old he is perfectly fine and hitting all milestones. At one point he wouldn't turn his head left during tummy time, but had no problem when he was being held. Is LO lifting his head when you hold him? Without knowing all the details it's hard to tell if it's the same problem but don't worry til you know more. And if it's muscle tone it will hopefully correct itself.

amp61470 · October 2016

Jacobsone2 how is your little one doing?

jacobsone2 · October 2016

Oops. Haven't been on in a while. I'm glad your little one is doing better! Well all of his bloodwork, MRI and EEG have all come back normal. So we are just waiting on the genetic tests to come back. He still will not lift his head if he is on his tummy on the floor, but if we prop him up on the boppy he will lift it a little. We have seen a little progress over the last week. His neurologist said that each time a test comes back normal we are ruling out more and more. She thinks it's either genetic or he just needs more time bc he was almost 3 weeks early. At first I thought it might be bc he was early too, but his pedi doesn't agree with us. Since 37w3d is not considered early. I'm just keeping my fingers crossed that these last tests come out ok.

amp61470 · October 2016

Little man saw a neurologist due to the muscle tone. All was normal and we had to just let him develop strength. I highly recommend contacting early intervention. From the sounds of it he would qualify. It's a great program and it's free. They came out to us once a week. Our girl was a PT and worked on his development of his core muscles. He is almost 13 months old now and hit all milestones in the proper time frame. Ease your mind and call them, they are great. Does he hold his head up when you are holding him? I seem to think at 3 months little man was still a bit wobbly hold his head up but we knew it was muscle tone so we weren't overly concerned as we had been dealing with this since he was born. He spent 13 days in the hospital because of it.
Please keep me posted and don't panic. If you are seeing improvement it will likely continue, again early intervention. It's things like this that they are there for. I also found it so stress relieving. I did not know the broad range of time for most milestones. He is 13 months old and everyone acts surprised he isn't walking on his own yet. EI said he is doing perfect. They don't worry until 18 months and he is cruising furniture, walking when I hold his hands. You get the picture. He isn't saying words I really understand but is always vocal, unbeknownst to me this is also normal. I don't worry about milestones I would if I didn't have them to reassure me. This Mommy thing is hard, take any help you can get

jacobsone2 · October 2016

Thank you! It's so good to hear your story. It makes me feel like he is going to be ok. We have seen a little improvement. Not much, but something is better than nothing. He still won't lift up when laying on the floor, but when propped up on the boppy of wedge he tries sometimes. He is starting to try to lift his head when you hold him, instead of resting it on my shoulder. But it is all over the place, not much control. If he really wants to see something he will hold it up. He likes to look up at the tv, so I try to give him stuff he wants to look at. I called to see why his genetic test results were taking so long. They said they had to start over and that we should have something back by the end of the week.

jacobsone2 · October 2016

Was you lo a reflux baby by any chance? Mine is and I have read that a lot of reflux babies have issues like these

amp61470 · October 2016

Yes he had reflux or a milk issue. I am weaning him off nutramigen as we speak. Have you contacted early intervention?

amp61470 · November 2016

Any updates?

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