Anyone else had this experience?

[RebeccaTee]

Hi all, just popping a thread out in the hope anyone will be able to relate to my current situation, if so, is there any hope?
My daughter is 2 years and nearly five months. She can't say any distinctive words but does babble a lot and point- she also uses the potty which is positive. But she is very behind as she still cannot walk independently- she has a physio and has a walker which she walks very well with, so not sure if at this point she's just relying on the walker. We've had all the tests including genetics with her pediatrician- they've all come back normal. Pregnancy was absolutely fine with no issues, she's was born at 37 weeks and 2 days so although she was early, not abnormally early. Birth was fine and she was hitting all of her milestones up until the sitting independently. I love her dearly but my partner and I feel so alone as in her clubs etc there isn't any children like her. Can anyone relate? This is an ongoing anxiety and sometimes I can incredibly upset by it, especially when I see children younger than her being able to form sentences and running around. It just makes me so worried for her future. We're waiting in speech therapy!

I can understand your worry. Has the Paediatrician given you any reason why she might be delayed?

No and that makes it more frustrating. They just don't know. They say there could be a few factors such as her dairy allergy, acid reflux or her hyper mobility but there's no specific answers. :(

I can totally understand how frustrating that would be. Have they made referrals to Portage and for an OT assessment?

I can relate to your worry. My daughter didn’t walk until 30 months and is still way behind other kids her age with gross motor skills and can’t run or jump or climb much at 34 months. I frequently see other kids a year or more younger being able to do much more at the playground. My daughter is not so delayed in speech but it is possible to catch up. Apparently I didn’t speak a word until 2.5 years.

What kind of genetic testing have you had? There are different types of testing offered and it seems hard to get the most detailed tests done on the NHS so they might have missed something (or it’s an unknown gene). We don’t have a diagnosis either but the paediatrician says DD has hypotonia (low muscle tone) and some hypermobility.

Yes she's had all the referrals and also attends a fab nursery. Honestly, it is so frustrating and upsetting.

Thank you! It is nice to see that someone can relate! Also thank you for sharing experiences, as this helps! Apparently they said they tested for everything they could think of. I know they tested for PWS. But yes I know what you mean with the NHS! Thank you, forgot to mention that they did say she has hypotonia as well.