Developmental delay in 18 mth old

[Backflip]

Don't really know if I should post this or not... or where...or why really..

My almost 18 mth old IVF son has been seeing specialists for 10 months now. He is currently under the care of a paed, a neuro, a physio, an Occupational therapist, a speech therapist, a dietician and has a referral to the Early Childhood Intervention Service.

It was thought early on that he may have a type of Muscular dystrophy, he has had genetic karyotyping done, and has had GT for Myotonic Dystrophy and Prader Willi syndrome done and they have been ruled out. The current suspicion is a type of Spinal Muscular Atrophy (type 3 or 4).

At his most recent appt he was assessed as being at the typical development of a 12 month old. He is underweight (8.9kg-putting him half a kilo off the 3%) on the 10% for his height, 50% for his head. He is delayed in his motor, learning, and play skills development. He doesn't walk or stand. He doesn't call us mum or dad, he doesn't cuddle or kiss us. He sleeps too much, he eats too little. He laughs like there is no tomorrow.

He is a delightful happy boy who we all adore.

I don't know what I am asking for or looking for, I guess some positive stories that their placid kids 'caught up'. I look at him and the awful thoughts of him maybe not leading a 'normal' life creep in and I feel sick. It gives me a lump in my throat just writing it.

I just wish I knew, I wish I could help him more. I wish I could make it all better.


Just don't know. Hate not knowing.

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[estherderu]

Dear Blackflip,

By the sounds of it, you are are doing your utmost as parents and are going to enough professionals.
The quality of the medical/health profession is Australia is high so it is safe to assume these people know
what they are doing and are giving you their best.

They cannot help you with the acceptance and the sadness this must be causing.
Not knowing is the worse. Not being sure of what the future holds. I have often heard people say this.
Most people prefer hearing a "bad diagnosis", to not knowing. The problem is that is it not always
that easy to know what is wrong. And you do not want to hurry people and get a wrong diagnosis.

I am glad for you that he laughs a lot. That will be of some comfort.

I wish you all strength and patience, you will probably be needing a lot of patience.
I do agree with the notion that there is no better means of communicating than touch.
Touch him everywhere (not only feet and hands), move him around,
love and cuddle him....find out what he really likes you to do.
I am very sure he should be able to let you know what he really loves most.

kind regards and wishing you all the best. Esther

[gcoe]

Posted in relation to a chiropractic comment (now removed)

..while chiropractic can claim some legitimacy as musculoskeletal therapists for conditions such as back pain the management of children with neurological and other developmental issues is way beyond their scope of practice and there have been some appalling instances of claims made by chiropractors and their associations that have no scientific backing in the treatment of children. craniotherapy has not been substantiated for the treatment of any condition and it is concerning and disturbing to see such a therapy being advocated for neurological disorder, particularly of vulnerable children. As for the claim that treatments are safe I would want to see evidence of that before subjecting a young child to the treatment - evidence that the cranial therapists can't provide.

The best practice for management of these problems is by a highly skilled and functional multidisciplinary team like the one you are attending: a paediatrician, neurologist or pediatric neurologist, OT, PT, SLT, Dietitian, Nurse, psychologist etc who can each help with the appropriate management