Pain is just weakness leaving the body...NOPE!
We all watch our kids,
We monitor their safety
Keep a mental track record of bumps, bruises, and scrapes.
But what do you do when you notice something wrong?
As if we don’t feel bad enough that they were “hurt” in any way on our watch
What if you begin to notice an alarming trend?
They don’t react normally to pain!
We are in the early stages of this alarming trend in our son.
I have high hopes that more testing and understanding on the doctor's part will unlock our kid’s future.
If this sounds melodramatic then so be it, but in the special needs community
A diagnosis is the difference between a doctor and Insurance company recognizing a need and ignoring one
Our tubie tornado Nico
Now we’ve always joked he has a head as hard as a rock because he flings himself to the floor, and connects frequently. He has SPD and this is part of sensory seeking for him.
We try to curb this with heavy work and some days it’s more effective than others.
But as he gets older and experiences more bumps and bruises I see him come away from them as if
Nothing is wrong…literally as if he was chilling and just got up to go play.
Nothing like what a typical reaction would be of at least being unhappy that he just gave himself a shiner
Bonking his eye on his sister’s metal bunk bed!
YES, this really happened
We have consulted his Pediatrician and his 3 year check up is this week.
I am fairly certain with his lack of knowledge and understanding for his own safety we are going to be doing some testing
One of them is for something called Kleefstra Syndrome…
It’s a genetic code deletion or mutation that can cause a majority of my 2 dysphagia kid’s issues.
What is a deletion in genetic code mean?
Imagine 200 cookies...
with chocolate chips
all have a specific # order
but in the 9th cookie spot it’s missing (deleted)
or instead of being regular chocolate it’s white chocolate (mutated)
Now in 200 cookies this deletion would be difficult to find and a mutation almost undetectable unless
You highlight it with color…
Floressence a highlighter that attaches to the malformed cookie
and makes It light up like Christmas bulbs!
It’s called a FISH test and we will see our local genetic hospital for this test
We have seen them once on this journey already but the test they did called a Micro-array
Wouldn’t be able to detect this level of genetic code
it would make sense that we have “normal” test results on all previous testing for both kids if this is the diagnosis.
Why would this only come about after almost 5 years and 2 kids?
It because they think you just want attention.
In previous posts we talked about a safety bed, this desensitization to pain and a diagnosis involving it
Would give us the leverage needed to have insurance help us get it without problem.
Nico can’t be trusted to roam free without supervision day or night
And that’s with or without the feeding tube if he really can’t distinguish danger either mentally or physically.
Pain tells us when we shouldn’t do something or alerts us something could be wrong.
Can you imagine not having that instinct? I can’t and it makes us nervous to see our child in this situation and makes me want to continue to advocate for the kids in the feeding tube community to SEEK ANSWERS WITHOUT CEASING!
"Pain is just weakness leaving the body...NOPE!" it's a matter of life or death and we choose life lived to the best of our ability.
