What if we disagree with diagnosis?

amother

Babyblue

Tue, May 29 2018, 9:11 pm

Ds has been struggling for years ( really since he was a baby) and we have tried many things to help him with no sucess.
We are finally doing a comprehensive study into IQ, emotional development etc by a neuropsychologist.
She also observed him in school, had us and ds fill out questionnaires.

She has mentioned a tentative diagnosis pending further testing.
Dh and I do not agree with this diagnosis at all. Based on what we ow of ds' struggles and based on hours of online reading , it makes no sense.
I'm at a total loss.
It is costing over $ 4,000 out of pocket.
I don't know what to do.

imasinger

Tue, May 29 2018, 10:04 pm

Neuropsychology evaluations are expensive, so it's not like a person can just run out and get another one for a second opinion.

Still, there can be other resources for testing and evaluation.

Since you are amother, and nobody can tell who you are, it might help if you would share what the diagnosis is, and why you think it's not accurate. Also, the age of your DS.

amother

Babyblue

Tue, May 29 2018, 10:36 pm

We live in north NJ. Originally a nurse at hackensack saw him and gave a tentative Dx of ADHD. However she did not discuss the testing w her supervisor, or take any of our reporting into account.
The neuropsychologist disagrees.
She was suggesting a non verbal learning disability.
Ds is 10, has a lot of suspected sensory issues, learning difficulties (mainly math & writing), fine motor problems, hates to do exercise or physical activity, and zero emotional control, always sees himself as the victim even when he was completely the agressor & gets furious when called out on bad behavior.
He can get violent sometimes.

He is less difficult by Hebrew (not sure if that's bec it's very structured or bec it's easier for him).

He started as a baby with hours of crying, screaming in the bath (he still hates water) , later turned into terrible uncontrollable tantrums, head banging etc.

Since these behaviors started as a baby & include so many behavioral issues, I really don't understand how it can be a learning disability. That wouldn't manifest itself from birth.

Also, we contacted her after his latest violent outburst about how to handle him, and she basically said give him a strict punishment.
However he doesn't learn from punishments since he sees himself as the victim (poor me I got punished ; instead of my poor sibling who I attacked & therefore got punished.)

Well ok but she said she will tell us how to deal with him & that's not very specific nor helpful.

I do plan to talk to the neuropsychologist about my concerns, but wondered if anyone had guidance.

creditcards

Tue, May 29 2018, 10:44 pm

amother wrote:

How is he socially? Can you evaluate him for autism. If you are able to get ABA therapy at home for him it would be a great help for you with his behavior issues.

Children specialized hospital and children's hospital of Philadelphia both take NJ insurance and do these evals.

Last edited by creditcards on Tue, May 29 2018, 10:48 pm; edited 1 time in total

amother

Saddlebrown

Tue, May 29 2018, 10:47 pm

amother wrote:

OP can it be more than one thing? LD and also sensory issues, maybe also a behavioral-related diagnosis as well?

As an aside, I've read that there can be some overlap with adhd, dyslexia and sensory issues, where one can be confused for the other. And, they it's not uncommon for 2 or 3 of these to exist together.

advocate

Tue, May 29 2018, 11:01 pm

I assume that he is in a day school? While your private evaluator is probably excellent, and did more complete testing that a public school would, it might be worth referring him to ChildFind for testing. It would be free, and if you refer now, legally should be completed before the end of the summer, and you would get a second opinion without paying for it. I do wonder if there was a discussion of a rule-out for autism spectrum disorders. Students in private and parochial schools have the same rights to testing as public school students. It obligates you to NOTHING.

4pom

Tue, May 29 2018, 11:19 pm

amother wrote:

Was there any both trauma such as c-section, or drugged birth, or improper handling of him as he moved through the birth canal?

I recently heard of Anat Baniel. Wonder if she might have some leads for you.

As a parent of a child whose “issues” we are also trying to get to the bottom of I was thinking how to share this other approach and mauve expressed it well. Its worth exploring. I too am looking into Anat Baniel.

amother

Babyblue

Tue, May 29 2018, 11:39 pm

The neuropsychologist said this Dx explains all of his behaviors and issues but didn't explain how.
Nor how that makes sense for a baby/toddler to have these problems. Can babies have learning disabilities?

I read a lot of lengthy articles by psychologists explaining this Dx, none mentioned it manifesting In such young kids.
I had called child find about another child of mine who was struggling; and they said they cant do anything for me. They gave me a name of an agency in south Jersey that they said will call me but never did.

He was evaluated a few yrs ago by the boe but I wanted a more thorough evaluation.

I'm not sure who or what anat baniel is.

creditcards

Wed, May 30 2018, 12:43 am

amother wrote:

Of course a very young child can have a learning disability. Generally learning disabilities are only diagnosed once a child is in school, but the disability is there from early on.

OP is right. I just read up on NVLD. It usually doesn't show any symptoms before age 3-4.
A toddler can have it but they don't show any symptoms at that age yet. OP's child had symptoms so early on. It might be NVLD together with another thing though. It can be ADHD and NVLD....

4pom

Wed, May 30 2018, 12:51 am

creditcards wrote:

To clarify :
The obvious symptoms may only manifest later but other symptoms and the root issue is there from birth. Its a brain issue!
With my son , BH we caught his issues early (bc I have some back ground )despite the school saying he was fine - the neuropsychologist said his issies aren’t usually obvious until 3rd grade but its great to have a head start.

Reading up in NLVD and executive functions will explain this all

amother

Babyblue

Wed, May 30 2018, 1:23 am

I read up on lnvd extensively, including articles by neuropsychologist. None of them mention this issue in infancy. Some said a toddler might have it.
None discuss the sensory or some other issues he has, like aggression.
If anyone has links to where I can read about babies w nvld I would be grateful.

He is way to sedentary to be adhd; maybe Add. However, the neuropsychologist disagreed.

creditcards

Wed, May 30 2018, 1:27 am

amother wrote:

Today they call ADD "ADHD inattentive type".
So ADHD doesn't mean hyper anymore.

amother

Oak

Wed, May 30 2018, 8:28 am

I think your confusion may stem from a common misunderstanding. Many parents assume that once a child is tested, they will be given a single diagnosis to explain all of the symptoms. However, that is not usually the case. More often, the child is given multiple diagnoses or diagnosis plus caveat that child doesn't meet clinical criteria for additional diagnosis but features many symptoms of it etc.

This is not because diagnosticians love throwing around labels. It's because the human brain is such that once one area is affected (and all of this stems from neurological function), other areas are often affected as well. Either both stemming from the same source, or one influencing the other.

In your case, it sounds as though the official diagnosis is not going to cover every symptom. It seems very clear to me (based on my professional background) that your child has sensory processing disorder as well. This would account for the sensitivities and related behaviors, as well as disinterest in motor activities. Sensorimotor disorders are very real, but they are not listed in the DSM. OT can help tremendously.

Again, I urge you to discuss this with the psychologist and listen carefully to her reasoning.

4pom

Wed, May 30 2018, 9:26 am

amother wrote:

Really sounds like my son. I use the same word- sedentary.

Not sure what I’m reading that’s different and resonated with me. Although of course I wouldnt consider him classic. I ofen say he is unique with such conflicting sides. And I do find somethings contradictory.
Will try find some links.
However, I am saying this despite knowing that my first post received some hugs!, we are pursuing different avenues to deal with this simultaneously.