GDD & Axial and appendicular hypotonia diagnoses!
I'm a mother of twin boys aged 23 months corrected (they were 4 weeks prem). I finally got a referral from our GP (for a neonatal specialist who looked after them in NICU), when they were 12 months of age, as they were not meeting their milestones and younger twin had only just started crawling.
Twins, Boys, Prem - were the reasons for their maturational delay given to me up until this point.
They are still not walking, and the older twin has about 10-15 words, whereas younger twin can only say "mama" - with grunts, or other "wawa" babble sounds.
They're both lovely in nature, I would say older is more sociable - whereas the younger twin is more of a reluctant communicator.
However both they understand a lot more, than they can express/verbalise.
We have been seeing a PT since they were 14 months old, and have also started seeing a ST.
They have had several blood tests and all have come back "normal". I understand that the tests performed were to rule out any metabolic, degenerative disorders or "any nasties" as our neurologist has referred to.
Neurologist has given them the above diagnoses. They have not yet had an MRI scan, since this would require a general anaesthetic - and neurologist feels that a non invasive approach is better since they are not showing any signs of regression. However, if they are not walking by the end of the year, this will be highly likely to be performed early in the new year.
Autism has been ruled out
Muscular Dystrophy has been ruled out
We have a referral for:
a geneticist for further blood testing,
a dermatologist as their hair is very fine and brittle, and
a dentist as they only have their incisor teeth come through
Am I missing anything?
My family keeps telling me they will be "fine", however my partner and I don't know of anyone who is going through similar situation as us.
Will they grow out of it?
I mean, I know there is something there - and not knowing what it is... I can't explain it. I just want to help my kids.
Has anyone been in a similar situation? Any advise would be helpful.