What if we disagree with diagnosis?

amother

Babyblue

Wed, May 30 2018, 9:46 am

Um to re-clarify, I never said he only has 1 diagnosis, the neuropsychologist suggested that -pending final testing. I expected a few different things which is why I am puzzled.
Secondly we did discuss sensory processing disorder with both hackensack and the neuropsychologist. and we have tried OT with no sucess.
Both hackensack and this dr feel he has some underlying issue other than spd.

But I still don't get how nvld can cover all his issues.
That is my question.

amother

Denim

Wed, May 30 2018, 10:27 am

amother wrote:

I think you're jumping the gun here. As far as I understand, the testing has not yet been completed. Once all testing is completed, a report is written. The neuropsychologist then typically meets with the parents to discuss the findings and diagnosis, share how she arrived at that diagnosis, and make recommendations to address the child's issues for the best functional outcomes. This is all part of the evaluation process. Since you are still in middle of the process, I suggest you trust the process and let the professionals do their job. Once it is completed, likely you will find all of your questions answered. You will also have the opportunity to ask all of your questions in the feedback session with the neuropsychologist.

amother

Babyblue

Wed, May 30 2018, 11:02 am

Yes it makes sense I'm just super anxious about ds and want him to get the right Dx and hopefully finally help him.
I also hope the school will finally give him the services he's been entitled to but not always getting.

ETA in hindsight this has a lot of info about my son I might ask to delete this thread.
Thank u all

amother

Oak

Wed, May 30 2018, 11:51 am

amother wrote:

The neuropsychologist does or does not see sensory processing disorder? It's not in the DSM so perhaps it isn't considered a "real" diagnosis. That doesn't mean it won't feature prominently in the report. She may have meant that NVLD is the only official diagnosis, as listed in the DSM, while other aspects of his behavior are unrelated and don't necessarily fit into an official diagnosis.

amother

Mint

Wed, May 30 2018, 12:31 pm

I really feel for you - this is a really hard place to be in

I have a son with a number of similar issues. We were told at various times various diagnoses ranging from non-specific executive functioning disorder (as opposed to adhd which is a specific executive functioning disorder) and across to aspergers (to me obviously ridiculous)
We tried all kinds of therapy.
fyi occupational therapy for sensory processing does not have a high success rate unless you find a really good therapist who specializes only in this.
how are his thinking skills? is there a big gap between his reasoning and his expression? where is he emotionally?

bottom line is that you as a mother know your kid. Trust yourself. What is your gut reaction? and then fight for what you feel is right. (obviously you have to be honest with yourself about whether you are avoiding or not)

amother

Babyblue

Wed, May 30 2018, 12:45 pm

Thanks mint, that's just how I feel. We took him as a preschooler for testing too bec he was having such a hard time already then; but we got no clear answers.
I also know that testing and neuropsychology are not infallible and diagnosing isn't always correct.
I'm trying to avoid that.
Agree about the Ot completely.

Oak, the neuropsychologist heard our concerns about sensory problems but did not say if that will be part of the diagnosis.

amother

Mint

Wed, May 30 2018, 1:11 pm

the problem I struck was that each specialist only knows their own area of expertise and they are all so sure that they can help!
do you know of a child development doctor who can look at the bigger picture? I found I needed someone who wasnt a specialist to put a finger on the core issue.

something else that helped me make a list for yourself of what you see the difficulties are and what progress you would like to achieve in each area. then ask yourself what is a priority and work on one thing at a time. obviously this is not an alternative to carrying on looking for a diagnosis but honestly who says that the diagnosis will help? you want to see progress! a good diagnosis can give you a direction to a solution but you can look for the solution on your own as well.

I once had a child who needed stitches in a place which needed a plastic surgeon. the doctor told me "drive them crazy until they bring in a specialist you are your child's only advocate" note not best advocate ONLY advocate I think this point is true in all life.....

amother

Babyblue

Wed, May 30 2018, 1:29 pm

Mint, the hackensack place was a child development center. However they totally misled us as to what will be tested for, what diagnosis etc.
We didn't want to wait months for the developmental pediatrician, so we opted to see the nurse practitioner.
She was supposed to do a lot of testing and then discuss it all with the developmental pediatrician before giving a diagnosis.
None of that happened.
The neuropsychologist is giving him tests on iq, emotional and learning abilities and is supposed to address each area of concern- except his physical issues.
So we thought she will give us s comprehensive overview.

Trust me, I've been advocating for years with limited to no results. I am hoping that a clear diagnosis will give us leverage w the school and help us figure out the best path for ds.

amother

Denim

Wed, May 30 2018, 2:08 pm

amother wrote:

What kind of leverage are you looking for with the school? Also, you seem to be pretty fixed on getting a specific diagnosis for him. Why do you think the specific diagnosis will be so important?

amother

Babyblue

Wed, May 30 2018, 2:28 pm

Because for $4000 I would like to have some better understanding of what is causing my son's issues. And with a clear diagnosis the school will hopefully give the services he has not been getting.
If a professional again tells me I'm not sure what's wrong with him, (or worse he will grow out of it, or nothing's really wrong) or it might be xyz but we try to treat that and he doesn't respond to that, it's a waste of time, effort, money and the problems then compound.
Or if a professional tells me it is ADHD and we as parents disagree, I can't treat that with meds etc bec it is not the right thing for my son.
The diagnosis needs to fit my son.

amother

Denim

Wed, May 30 2018, 2:49 pm

Why are you assuming that they won't give you a clear picture or diagnosis? I think your anxiety is getting the better of you. The process hasn't even been completed- let the professionals do their job. Part of that job will be educating you so that you are clear on the diagnosis and recommendations. I won't think there is any reason to believe or assume they won't do that.

amother

Babyblue

Wed, May 30 2018, 3:46 pm

I am concerned bec the diagnosis that was mentioned a few times as being the most likely so far is non verbal learning disability; which does not seem to fit the circumstances. I am trying to plan ahead and figure out what to do if that is the case; and also learn more about that diagnosis.

amother

Mint

Wed, May 30 2018, 4:19 pm

I really honestly think that you should, at the same time as pursuing the evaluation, write up like I said before what you want to see progress in
You are a million percent right that the school will be much more cooperative with a clear diagnosis but unfortunately there is not always a clear diagnosis and sometimes there are a few concurrent issues....
Hatzlocho! and I know it sounds preachy but daven? and daven again??? each time we had finished yet another type of intervention and not seen results and poured money and time and hope! down the drain and I hit rock bottom and davened from there, a new avenue opened and the truth is that each type of therapy got us a little further down the road even as it did not provide a full solution...
We have had our ups and downs... more downs than ups bH this year the situation is (bah) reasonably um.. stablish?

amother

Copper

Thu, May 31 2018, 12:14 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.

ABM (Anat Baniel Movement) is an offshoot from Feldenkreis. ABM was originally geared for children. There are a couple good practioners in NYC that work with this method. Reflex integration is also very beneficial for such kids. While nothing is a cure in and of itself, we saw major improvement physically and emotionally. We did reflex integration before ABM.
http://www.advancedtherapyofam.....eech/