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Development Delay - Gross Motor Skills

(3 Posts)
Overtiredbackagain Fri 17-Jun-16 15:14:44

Hi there

Apologies in advance if I can posting this to the wrong place, but I am looking for some advice and/or support.

Firstly, by way of introduction, I am Overtired and mum to three beautiful children – DS(11), DD(7) and DD(1).

At our 20 week scan, it was noticed that DD(1) has scoliosis, with a missing vertebrae to her lumbar. Her birth was normal, 2 days prior to her due date, and following examination by paediatrician, we were allowed home the same day. We were referred back to St Thomas’ for an xray and review of her spine when she was 4 months old, only to be referred back when she is 12 months old.

At approximately 6 months old, it became apparent (to me especially) that she was becoming delayed in certain aspects and now, she is 1 in a couple of weeks, would still pass for being a baby of six months old. She can sit assisted, but not alone, still struggles with head control and at times can still be quite floppy.

We were referred to a senior paediatrician who ran a series of tests for a genetic abnormality, we are still awaiting results. We have started the process of seeing an OT and PT, having had initial assessments. The OT graded DD as a Level 3 for treatment, recommending her for a Squiggles chair, and visits to her nursery so they can assist the staff with exercises etc for her. We have several pending appointments with both OT and PT over the next couple of months, we are waiting for an assessment with the Community Paediatric Team (where there is a 15 week wait) and also her next appointment at St Thomas’ to review her scoliosis. We are due to see the Senior Paediatrician again in August to discuss her genetic results and diagnosis, but I have reached a stage where my head is swimming.

She is the most delightful, happiest baby you would ever meet. Mentally she is where she needs to be, but her body is restricting her. She is getting very frustrated with aspects of play. She has just started to roll to her side, but that is all. I want to do more to help her, but some days it feels a struggle with her.

I made a lovely group of friends from Mumsnet when we were all pregnant at the same time, we started a FB group and the support when pregnant was amazing, but over time I had to remove myself from the group, it may sound selfish but watching the babies start to roll, sit up, stand, and now walk, has been really difficult and I felt it easier to distance myself.

I have so many questions, but none that anyone can seem to answer. I have had months of people telling me “she’s just lazy”, “she’ll do it when shes good and ready”, when all along I have known deep down there are issues there.

I’m sorry, I seem to be waffling, and not asking anything specific, I just wanted to get my feelings and thoughts down, some days my head feels so foggy with emotion and frustration, and other days I just try to forget.

Thank you for reading.

LovelyWeatherForDucks Fri 17-Jun-16 15:45:54

Not much constructive to add but I'm in much the same position - DS is one next month and miniature (0.4 centile) and very delayed, mostly in gross motor skills (assessed as being at about 6 months). Saw a paed at 8 months who agreed he was behind but wanted to 'wait and see' and referred us to physio, we started private physio while waiting and looking like he might have a form of mild cerebral palsy (weakness on one side), but we aren't sure yet. He has a follow up next month and I'm expecting further referrals/tests etc. Also behind with babbling etc which may or may not be related to that. I've also got to the point of avoiding baby groups, I've just gone back to work and the 'oh he must be running around into everything now' type comments are upsetting as he can't even crawl yet! (Like your DD he can sit but can't be left alone). And 'he'll be fine' comments from friends and family are also making me cross as I don't feel it's being taken seriously. Also spending far too much time googling and scaring myself. He just had his one year check and pretty much failed it, the HV was very ominous about it whereas I am trying to remain positive! I think you can be reassured you are doing all you can for now if you are getting going with OT/PT - from what I can tell, regardless of a 'diagnosis', early intervention to address the immediate issues is key. But I know the feeling, it's pretty much all I can think about at the moment, and the uncertainty is just horrible.

Overtiredbackagain Fri 17-Jun-16 18:56:51

Thanks for sharing Lovely flowers

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