Should I push for a diagnosis?

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Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)

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amother

Cobalt

Thu, Jan 12 2023, 12:04 pm

amother Cornsilk wrote:

How would extended hospital stay affect his core development?
Would a parent notice other symptoms of under-developed core?
What does behavior have to do with tongue tie, can you please explain that again?

If they were immobile or non ideal positions for long amounts of time and missed critical windows in development.

Also lots of medications and anesthesia affect the development of the central nervous system and ultimately muscle tone is a function of the nervous system.

Tongue ties affect behavior in development in lots of different ways but some things to think about:

Is tongue tie leading to mouth breathing which deprives the brain of oxygen and stunts the development of the prefrontal cortex?

Is tongue tie restricting movement which is under or overestimating the vagus nerve leading to nervous system stuck in fight flight?

Is tongue restriction leading to maloclusion (bite issues) which is putting undue pressure on trigeminal nerves that feed directly into the brain stem?

Is compromised airway leading to pathogens thriving in the back of the throat in the tonsils and adenoids and contributing to neuroinflammation?

amother

Thu, Jan 12 2023, 3:26 pm

amother Viola wrote:

Be careful with pursuing a genetic/congenital problem you may learn more than you
Want. Also a diagnosis doesn’t magically solve
Anything it just gives a name to the gehenom. BTDT

Please tell me more if you can.

amother

Thu, Jan 12 2023, 3:27 pm

thornyrose wrote:

If you're interested in an alternative route, you can pm me for a recommendation. (crainial, reflex integration, etc.)

I’d also love to hear about this! People in or around monsey that you know of?

amother

Thu, Jan 12 2023, 3:29 pm

amother Blonde wrote:

Holistic and all those approaches mentioned here are good to explore but that won't help your child in the moment!
Why don't you start with a visit at your pediatrician to rule out any medical cause? Your child seems like he's in pain.
Then, if a medical cause is ruled out you can explore your other options. There are many early intervention agencies ( I think ppl are happy with Judy Dobner) you can take your child over to and see what she suggests.
If you get a diagnosis, you can get many hours of services and working on behaviors, but you don't have to jump to that yet ( if you do I would be glad to help you in the process).

Signed
A licensed BCBA and Special Ed Professional

Thank you so much for your response!
He is currently getting PT and OT twice weekly from Judy Dobners agency.
What type of medical reasons could there be?

amother

Thu, Jan 12 2023, 3:31 pm

amother Geranium wrote:

If he has a heart defect and behavioral issues, I would pursue two avenues in parallel:
- Genetic diagnosis
- Developmental evaluation

Good luck

How would I do genetic testing and also why would I do that? Supposedly I was told that No Intervention was needed…
Like what would I find out?

amother

Thu, Jan 12 2023, 3:32 pm

amother Cobalt wrote:

I agree that a genetic workup is a great idea, if he hasn't had one yet.

Can you explain more about genetic testing? I’m not aware of any of this..

amother

Cobalt

Thu, Jan 12 2023, 3:49 pm

amother OP wrote:

Can you explain more about genetic testing? I’m not aware of any of this..

Sometimes cardiac defects are part of a larger genetic or chromosomal syndrome that can present with developmental delays. Most of the time it's not, but it's good to rule this out. Sometimes it's dome at birth, so you may want to ask his cardiology team if they ever ran any genetic testing on him. If you want to pursue this you can make an appointment with a geneticist and they can guide you from there.

thornyrose

Thu, Jan 12 2023, 3:52 pm

amother OP wrote:

I’d also love to hear about this! People in or around monsey that you know of?

I know of someone in Monroe area that I believed I was helped by. (DH is skeptical, saying you can't prove that DC's improvements wouldn't have happened on its own...)
My child's issues were way less severe than what you're describing, but I've heard a lot about her and there's a good chance she can help.

I'm not comfortable publicizing her name, so pm me for info or give me an email address I can send info to.

amother

Geranium

Thu, Jan 12 2023, 3:53 pm

Even if the heart problem itself doesn't require any medical treatment or follow up, and even if on its own it is unlikely to be genetic, there are plenty of genetic problems which also involve the heart.

I have a mild heart problem, but I was only diagnosed with a genetic disorder at age 30, because my toddler daughter was having medical and developmental issues even though it did not involve her heart at the time (though she has since developed a heart issue), and my daughter was only diagnosed with this genetic disorder at age 9. What we have does not sound like what your son has. But mild heart problems sometimes are linked to a greater genetic disorder, and some of them are also linked to developmental or behavioral issues.

Genetic testing will tell you if there is an underlying genetic cause to the heart problem and or the developmental problem. It is not always simple to understand the results - sometimes they can tell you there is a known genetic disorder and sometimes they find a gene mutation but it is something rare and they don't know how it will play out. If it is a known disorder, they can help you understand what your child's problems are likely to be and point you in the right direction for therapies and treatments as needed. If it is a more rare mutation, there may be less they can tell you, but it will point you in some direction for help. And if it isn't genetic, that can also help you understand which routes to take as next steps, and give you some relief that there isn't some major genetic syndrome underlying things.

amother

Blonde

Thu, Jan 12 2023, 4:03 pm

amother OP wrote:

Thank you so much for your response!
He is currently getting PT and OT twice weekly from Judy Dobners agency.
What type of medical reasons could there be?

A pediatrician would know what to look for. When did the symptoms start? Is he sleeping and eating appropriately? Any digestion issues etc etc.

Behavioral Therapy would probably involve A diagnosis and ABA: I'd be glad to help you with that if you ever pursue that route:)
Hopefully he gets better soon!

amother

Blush

Thu, Jan 12 2023, 4:41 pm

If he gets a diagnosis you can get free ABA.

amother

Blonde

Thu, Jan 12 2023, 4:45 pm

As a BCBA, that's what I do.

As mentioned before, if you pursue that route I'd be glad to help you.

amother

Hydrangea

Thu, Jan 12 2023, 7:23 pm

Don’t waste your time looking for a genetic diagnosis.
Focus on the behavior. The heart issue is not a big deal and it’s distracting you from focusing on the main problem.

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