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.

xabena · October 2016

Hi my baby has Down syndrome and also has hypotonia. She received physical therapy while in Nicu and at home since she was 3 months through early intervention. Has the pediatrician suggested that you called early intervention? I would do it anyways. My baby has benefited so much from it. She's 5 months and is already rolling over. Call early intervention. You won't regret it

sqfibemom · October 2016

My DS has hypotonia. Microarray only tests certain things so it can miss a lot of syndromes/conditions. DS had his microarray come back normal and was later diagnosed with Noonan Syndrome.

jacobsone2 · October 2016

Thanks ladies. Yes I was reading the microarray doesn't detect everything, so I'm sure it will come back ok. His neurologist said that after this we will do what is called the Next step test and that takes about 3-4 months, but looks at the genes closer. It's a process and it's so hard because you want answers right away. I haven't called early intervention. The doctors haven't mentioned it to me yet. He has an appt with his neuro this coming week and his 4 month with his pedi next week. So we will see what happens

arcanejinx · April 2017

My daughters tone fluctuates-she has cerebral palsy due to a birth injury (so we've known for awhile) but babies tones change a lot during the first few years of life. Which is why for CP it's not really diagnosed before 3 years of age.

Hopefully you have found some answers by now, but I wanted to add in another possibility for those who may still read this.

7Kaby · April 2018

While I know the post is old. You might consider having your son or daughter checked for Joubert Syndrome. My oldest has that and she couldn't/wouldn't tolerate tummy time until after she was one year old. Early intervention is crucial and/or PT and OT on your own. The sooner you get started on OT/PT the sooner your baby will be able to roll, stand, crawl and walk because they don't have the natural muscle tone they have to build everything up from scratch and it takes persistence, dedication and therapy/technique to get there.

Erinka · May 2018

My DD has/had Hypotonia and started with early intervention services at 12 months. She started walking at 19 month. Still at 26 months she is not right where her peers are but we are so happy with her progress. Our school district, state and insurance cover all costs. And the therapists are amazing.

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Anyone dealing with hypotonia?

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