Hypotonia - Developmental Delays

[mamasanace]

Thanks so much SJL,

We're already joking with the genetics team that we may have to name what she has 'Tess Syndrome' since she's not fitting into any particular box at the moment! These doctors do love a lable don't they?

We are indeed blessed to have access to so much support and to live so near Randwick and the services here in Sydney. I think we are so lucky to have all of these amazing professionals helping us. It sounds like you have had a similar journey to what we are going through and been able to access good help as well

You've made me feel a lot better about the MRI, I appreciate that. I know it's a necessary evil, but it's definitely hard to commit to.

Thanks again!

[MantaRay]

Hun, this must be very stressful for you at the moment My DS has low muscle tone and is also gifted, this is a common thing among gifted kids (so the things that hypotonia go with aren't all bad ). DS1 actually hit all his early physical milestones early - rolling, crawling, walking etc. It was only later that he seemed to be "behind" his aged peers in gross and fine motor skills. The first we knew of the low tone was when he was having a multi-disciplinary assessment to see if he had ASD or ADD. As it turned out it was neither, but was two different things that we really weren't expecting!

We haven't been through an MRI etc, but I wish you all the best with it. I can understand your concerns I just wanted to let you know that low tone is not always associated with "bad" things, and if there seems to be no fit, maybe you can just go with the flow for now and see what the future holds. Also, we have found things like swimming, bike riding and the trampoline have been really helpful to help bring DS's gross motor skills up a bit. Anything repetitive is good apparently. Kindy gym type things are great too. Low tone, when well managed, doesn't have to be something that holds kids back. With enough work to build up their core strength and endurance, it can be barely noticeable.

All the best hun

[SJL]

We're already joking with the genetics team that we may have to name what she has 'Tess Syndrome' since she's not fitting into any particular box at the moment!

My daughter was labelled as having 'Sarah syndrome' for about a year and a half. So yes that sort of labeling does happen.