Genetic Testing- do it or not do it?

[Anonymous]

Hi everyone. A developmental ped just diagnosed my son with global dyspraxia and expressive language disorder. She recommended genetic testing if we wanted to do it. Is this something I should do? Im unclear of what the testing will do for us? Ive already had enough emotional distress the last year and a half with teachers expressing concern and with private ot and speech- watching the sessions and trying to learn/understand whats going on. The diagnosis makes perfect sense and Im finally in a place where I understand/accept everything and am less stressed from it all. What is genetic testing going to show or not show? Is it info that we need or is it just extra digging to potentially cause more distress? Im just unclear and dont want to put unnecessary stress on ourselves after what has been a very stressful process. Thanks!

[Anonymous]

Will your insurance cover it?

It could be helpful if you expect to have more children.

[Anonymous]

Anonymous wrote:Will your insurance cover it?

It could be helpful if you expect to have more children.

I have to do some kind of genetic counseking session and then it will be covered. My son with dyspraxia is 4 and I already have a 19 month old who doesnt exhibit any of the signs my older son did so far, but of course Ill always keep an extra eye on it. Im just wondering if it says its says its genetic then does that mean there us less that wikl help him progress etc? Or if its not genetic does that mean it was something environmental that caused it? Like I guess Im bot sure looking for the cause would be helpful?

[Anonymous]

Parent of a child with an extremely rare disorder here. I think you should do it. Knowledge is power. I needed to know why and am glad I could stop searching for a cause, in our case it was unclear if my child had a degenerative disease so finding out relieved us of that worry. Also, if you do find something, and with testing becoming more sophisticated everyday you might find something and then have the significance be unclear. If you find out something is genetic in origin, you do not need to and probably should not disclose it to your educational team. This is what we have been advised by several people including our geneticist. Visit the website Complex Child and look under the genetic/rare diseases tab. There are some essays that discuss whether to test or not.

[Anonymous]

You sound overwhelmed, but I have to say, I see not reason NOT to do this. What if these results unlock the door to helping your child?

[Anonymous]

If your child has a rare disorder and could benefit from a certain cocktail of medications, shouldn't you find out?

[Anonymous]

Dyspraxia isn't a diagnosis. It's a description of functioning.

[Anonymous]

Dyspraxia and expressive language disorder can be caused by many conditions. Knowing the underlying condition can be extremely helpful and can predict how your child will improve and whether and how much.

[Anonymous]

Anonymous wrote:Dyspraxia isn't a diagnosis. It's a description of functioning.

I was told by dev ped its a diagnosis

[Anonymous]

Anonymous wrote:

Anonymous wrote:Dyspraxia isn't a diagnosis. It's a description of functioning.

I was told by dev ped its a diagnosis

In the DSM V - developmental coordination disorder (also known as dyspraxia). It is a diagnosis.

My teen has it. We did genetic testing - found nothing. We also did an MRI and there was an area of 'unchanging brain damage of unknown origin' that likely caused the DCD.

[Anonymous]

Anonymous wrote:Dyspraxia and expressive language disorder can be caused by many conditions. Knowing the underlying condition can be extremely helpful and can predict how your child will improve and whether and how much.

OP here- yeah, for so long Ive questioned what has caused this. Wondering if I didnt do enough, if something happened when I was pregnant, things like that. I beat myself up and carried this weight but Ive finally stopped with that a bit and been able to breathe easier. But I do agree that any added knowledge may help us in helping him, so that would be worthwhile. Dev ped said time and therapy is what he needs at this point. Hes made good progress in just one year of therapies so hopefully having this extra clarity of whats going on will help that progress continue.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Dyspraxia isn't a diagnosis. It's a description of functioning.

I was told by dev ped its a diagnosis

In the DSM V - developmental coordination disorder (also known as dyspraxia). It is a diagnosis.

My teen has it. We did genetic testing - found nothing. We also did an MRI and there was an area of 'unchanging brain damage of unknown origin' that likely caused the DCD.

PP- one thing that has eaten me up inside is that DS fell at age 2 and had a mild comcussion. It was the worst day of my life- the scare of it and not knowing if damage was done. He had shown sensory things before the fall and was already slow to talk before the fall, but I always wonder. Dev Ped said that would not cause the global dyspraxia but when hes older we could always do mri to make sure everything looks okay. What does unchanging brain damage mean?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Dyspraxia isn't a diagnosis. It's a description of functioning.

I was told by dev ped its a diagnosis

In the DSM V - developmental coordination disorder (also known as dyspraxia). It is a diagnosis.

My teen has it. We did genetic testing - found nothing. We also did an MRI and there was an area of 'unchanging brain damage of unknown origin' that likely caused the DCD.

PP Also, how does this dx look in a teen? Does ur teen have an iep?

[Anonymous]

OP -- your child is young and you are at the start of this. Some kids with this diagnosis tackle it and have a super functional life. For others, it is a symptom of a larger problem. I hope you fall in the former category but looking back I would have liked to known earlier that it is a symptom

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Dyspraxia isn't a diagnosis. It's a description of functioning.

I was told by dev ped its a diagnosis

In the DSM V - developmental coordination disorder (also known as dyspraxia). It is a diagnosis.

My teen has it. We did genetic testing - found nothing. We also did an MRI and there was an area of 'unchanging brain damage of unknown origin' that likely caused the DCD.

PP Also, how does this dx look in a teen? Does ur teen have an iep?

My teen has DCD, ADHD and Anxiety disorder.

Speech and gross/fine motor were biggest issues through elementary school (was in speech therapy for 8-9 years, OT for about 5). Speech and language were considered resolved by about age 11. My DC is not athletic and a bit clumsy but fine. Has an IEP for expressive language issues, and accommodations for the ADHD and fine motor issues (add'l time, keyboarding, calculator). But taking AP classes, has friends and is engaged in school. Takes medication for the ADHD and anxiety.

Getting a good neuropsych evaluation when DC was ~8 was really helpful. We learned both where challenges and strengths were and went from there.