How long do you give something, before trying something "new"?

[mm22bys]

Hi, DS2 is 13 months, and has global development delay. We have had no other dx other than Delayed Visual Maturation. We have done a lot of reading on what could help him, and it seems that now is the time to do the therapies etc while his brain is still "plastic".

He has been going to physio since July, and he can sit now, and he can roll both ways, and is reaching more, but isn't really showing signs of crawling (well his legs want to do it, but his arms don't). We have also been to BIBIC, at the end of October, and try to do their program 4 - 5 times a week. His reaching has improved alot especially since BIBIC.

We are going to Bobath in January, everyday for 2 weeks, and hope to see an improvement there.

I'd like to know if we are not giving things enough time to work? I read on the CE thread, which I found fascinating, about someone's DD who in 6 weeks went from not sitting to crawling. That is amazing.

How long should we give a therapy or approach time to work before trying something "new"?

I would give anything at least 3 months.

Sounds like he's acheived a lot since July. Doesn't sound like it's too long before you go to Bobath. Do you have something 'new' in mind?
My answer to your question would be plenty of time. eg. we have been encouraging DS (5.5yrs with GDD) to stab food with a fork for over 2 years now and he's just starting to give it a go- maybe not a good exaqmple but IME there seems to be a balance between him doing things when he's ready (which sometimes takes us by surprise) and him doing things after loads of practice with us. sometimes i think we hit lucky and the things we are working on happen to be the bits he is ready to do.

School review his goals every 6 months so maybe this is and idea of a fair timescale.

Our portage worker was always very keen to move onto new termly goals but I found it difficult to look at new targets without a bit of a pause to reflect on the things we had acheived.
I also found that although he has goals set in different developmental areas, it is totally unpredictable as to which ones we were going to progress in and that his brain needed to work on one or two areas at a time. He also seems to have periods when he noticably develops and other times when he seems to stand still.

As regards plasticity, I think there is growing research that the brain is capable of new connections throughout life and far more plastic than was once thought so IMO keep going steadily and dont' feel under a crushing pressure that a clock is ticking. Have a bottle of wine and celebrate all you and your dS have achieved in the past few months.

sounds like he's doing well to be honest. I'm really hoping Brainwave therapy will get dd rolling and even some hand function.
I keep hoping this brain plasticity is true as dd has no motor cortex but after 3 years I'm getting a bit despondant as she has no physical movement

Thanks guys. He went to BIBIC at the end of October and is due to be reviewed there at the end of March, so that will be five months.

The only "new" thing we have on the horizon is Bobath.

We got an early Christmas "present" today - a letter from his last hospital, and now they are talking about him having Angelman Syndrome, but he will need to have the genetic tests to give some indication (read today only 70% of the cases actually have the defect on chromosone 15).

Who knows...

Oh NMC, I wanted to ask you, the letter talked about "extra perimidal etiology" - looked up "perimidal" and nothing was there, but Google gave me the option of "pyramidal" etiology. Do you have any idea what this means. I've mentioned before that he mentioned the basal ganglia - is that what "pyramidal" means?

When are you at Brainwave, that mustn't be too far away either!

Good luck,

they would have meant pyramidal. Guess they can't spell.
The motor system is divided in books and medical journals into 'tracts'. Some start movement, others regulate it. Put simply, extrapyramidal regulates the pyramidal tract (main motor system) but isn't all one thing. It has several parts. Damage to anyone can mean that muscle movement/balance/co-ordination/sensation isn't smooth. The basal ganglia is part of it and damage to it usually results in athetoid cerebral palsy or movements being wild and unregulated.
DD has basal ganglia damage but because she also has motor cortex damage she can't make any movements. If she did, they'd be all over the place cos of the basal ganglia damage.
Its an incredibly complex system that really isn't understood, unlike the pyramidal tract which is pretty simple. Which means if they find damage to it on an MRI they will immediately say thats whats causing the unusual symptoms.
Hope thats clearer
(knmew that nueroscience degree would come in handy one day )

etiology just means, very loosely, start or cause. So they are saying its possible the synmptoms orginate in the extra-pyramidal tract.

Thanks NMC, he did talk about movement start / regulation, and the basal ganglia, when we saw him. The letter must have been dictated, then just signed, but you would hope they would read them before signing them.

His MRI from May was "clear" (I appreciate that means nothing however) but the prof wants to review it, and he may very well ask for another one. DS2 will have to be sedated for a spinal tap and muscle biopsy, so I guess he may as well have all three done at once.

I am actually most worried about the Angelman possibility. He will just need a blood test for that, and I am hoping it can be done pretty quickly. We were relieved when we didn't have the MD hanging over his (our) heads anymore, but now it's just something else...hope we can get the results quickly for the blood tests, even if we have to wait a while for everyone to get coordinated for the MRI / spinal tap / muscle biopsy.

Happy Christmas everybody