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Being referred for hypotonia in 15 mo old

(8 Posts)
Friendlylightupbear Tue 16-May-17 09:41:42

Hello all, wondering if anyone could advise on this. My DD is 15 mo, she's deaf, and recently have a full check over by a paediatric audiologist. He has referred her to a paediatrician for low muscle tone, however I was quite surprised by this. He did say "it's better to over investigate than miss something, etc etc", and I'm happy to accept the referral as he's a doctor and I am not! But I was just wondering a) if my DDs development does indeed sound behind and b) if anyone has experiences of hypotonia they wouldn't mind sharing.

She was born healthy, full-term, and wasn't diagnosed as deaf until she was 13 months old, although investigations started at 9 months after we noticed at around 7/8 months. She's profound, it's auditory neuropathy spectrum disorder.

She began rolling over at 5 months, began sitting unaided but wobbly at 6 months, then very steadily sitting from around 9 months. Was bearing weight on her legs from 6/7 months (I think...) Crawled at 10 months, and was cruising and pulling up from 10.5 months. She seems strong on her legs, and she can stand unaided, but for less than a minute, and needs some help from us to balance. She can walk 10 or so steps between us, but very wide stance, wobbly and feet pointed outwards. She loves walking with her walker and holding one or two of our hands, however in one of her feet the toes point outwards more than the other. She sits in a w-position about 50% of the time, and with her legs in front of her the rest (although I've only been paying attention to this recently).

Fine motor skills seem very good, and apart from obvious speech and language massive delay, she seems fine in other areas. She can do around 50 signs and seems to be very bright.

So any advice appreciated. She is my first DC so I have no frame of reference for how children develop really. Have tried to limit my googling as to not freak myself out!

Timetogrowup2016 Tue 16-May-17 09:51:24

I think she sounds fine .
My dd is 15 months ans can't walk and doesn't take any steps even with a walker or holding onto me etc

katplva Thu 18-May-17 22:42:04

Hi Friendly
Your DD sounds like she is doing really well - meeting motor milestones and using loads of signs too, so well done her! I think when a very young child is 'in the system' for one thing (eg hearing), health professionals like to look into absolutely everything that comes up, as they are so young. But I think that in the majority of cases it's just to rule everything else out as being fine.

My 14 month old has hypotonia and hypermobility and is seeing the physio for regular sessions. She did not meet her motor milestones like your DD did though (which was also partly due to a cast for hip dysplasia). So she only started to sit up at 11 months, and weight bear on her legs at 13 months. She also has an appointment with audiology next month as we have some concerns about her hearing - we'll see what the outcome of that is.

The physiotherapy has been great and I've really noticed great improvements - she started to crawl last week which we were delighted about. So if your DD does get a referral to physiotherapy it might be for some exercises or tips at home to help her strengthen up her muscles a bit more. Swimming has been great for our DD if that's possible for you.

When you get your appointment you could bring along photos or video of her sitting and moving, in case she doesn't want to perform on the day. Bringing a written timeline of her general developmental milestones (like you have in your OP) can be useful to give to the paediatrician, as it is easy to forget things in that moment. And ask him/her what their thinking is and what their next step will be - onward referral, continued monitoring or no issues?

I don't know much about profound deafness, but the outline you've given of your DD sounds very positive. I hope all goes well and good luck with your appointments x

Friendlylightupbear Fri 19-May-17 20:35:42

Thanks both for the replies smile

katplva that's great to hear that the physiotherapy is helping your DD. Great idea about the videos, I will definitely do that. Got the audiology consultants letter through yesterday and from that I think he suspects some kind of neurological problem, as her hearing loss is caused by a neuropathy. I think you're right and that he's covering all bases. If you'd like to talk about your DDs hearing, or have any questions about audiology testing, then please get in touch. She wasn't diagnosed as deaf until she was 13 mo, and we first went to the GP with concerns at 9 months, so we've had a lot of appointments and tests! x

katplva Sat 20-May-17 21:29:28

That's very interesting Friendly, about the neurological basis for your DD's hearing loss also having possible implications for her motor skills - I would never have thought of the two as being linked before. In a positive way, it is great to get everything looked at while they are so young and unaware of any difficulties. Google can be useful but also very scary when it comes to children's health and development!

We have the first audiology assessment next month. I am not sure about her hearing, sometimes I think that it seems fine, and then other times she is quite unresponsive to sound. She is very placid and quiet overall as well, so it might just be her personality too! It would be good to either rule it out as a factor, or potentially find out that she does have a hearing loss. Did you find out at your DD's first audiology appointment about her hearing loss? Or did it take longer to get results?

Friendlylightupbear Sat 20-May-17 22:00:36

It took quite a while for us to get results kat. Her condition, authority neuropathy, is very rare and not very well understood at all, and things were further complicated by the fact that she has had almost permanent glue ear since we started going to audiology, which was a bit of a red herring. My DD passed her newborn screen, kids with this condition always do, so it took quite a while to convince the professionals that she couldn't hear, which was our experience with her at home. She is also amazing at "faking" hearing! A straightforward hearing loss is easier to diagnose, from what i believe, and the behavioural testing will be able to tell you a lot.

Just for your info, check out the blog, just on the off chance that this sounds familiar. Written by a family who's little girl and boy have auditory neuropathy.

katplva Thu 08-Jun-17 22:36:05

Hi Friendly I hope you're well and your little one is continuing to motor on! Did your DD see the paediatrician or physio yet?

We had our first audiology assessment and DD has moderate bilateral hearing loss, hopefully due to fluid in the ears. So next stop is probably grommets to see if draining the fluid helps. I know grommets can work wonders but thanks to your posts I'm keeping an open mind as to any other conditions too. We're still waiting for a paediatrician appointment so it's all a bit piecemeal at the moment.

Other than that she is doing well, starting to pull herself up and not looking as wobbly as before, and being her usual delightful self smile

Wishing you all the best with your DD too.

Friendlylightupbear Tue 13-Jun-17 20:28:16

Hi kat, apologies I've only just seen this. I'm glad you've got some answers from the audiologist, fingers crossed the grommets can be done quickly and will do the job smile Me and my brother both had grommets when we were young and they worked really well for both of us. Did your audiologist mention doing the hearing tests with a bone conductor headband (i assume she did the visual reinforcement tests?) The bone conductor overcomes any fluid in the ears so they can tell if the inner ear is functioning currently.

We have an appointment with a paediatric neurologist next month, haven't heard anything about physio yet, I need to chase that. DD is definitely getting more steady on her feet smile She has had an MRI of ears and auditory nerve, which was normal, and has been approved for bilateral cochlear implants, we're just waiting for a date! So feeling cautiously optimistic at the moment smile

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