Neuropsych without qEEG? Other problems...

[amo_mea_filiis.]

Ds had his big appointment with the autism research center. After 5 hours of diagnostics, he does not qualify for the study on eith end. He does not have any type of autism or PDD, but he's very far from neurotypical. They said that he is very complex, and i will be getting a call about his official results and they referred the social worker to us (who will supposedly track down resources from 3 hours away!).

 

We've been through this before. When he went to diagnostic last year, the neurologist was pretty sure he did not have autism. But then the child psychiatrist 6 months later said he absolutely did have autism. The biggest problem we have run into is that most Drs are only concerned with autism. There are other disorders out there!

 

The research center left us with treating the symptoms and brings us back to multiple labels to try and explain him. He's hyper and impulsive when out of his normal environment, absolutely has an expressive language disorder, can be aggressive, little tolerance for frustration, minimal to no problem solving skills, poor fine motor skills, probably learning disabilities, low lying cerebellar tonsils, asthma, sensory problems, poor motor planning, poor oral motor planning, poor language processing, and more i am probably forgetting.

 

We can get a diagnosis ruled out, but no one is will to dig deeper into his brain.

 

The research center stringly suggested a neuropsych eval. He has an appointment in a little over a week with a neuropsych. The problem is that they do not do the qEEG. I do not want to leave the results appt with more questions like we do with every single other Dr.

 

I'm tired of seeing different "experts" and sometimes being accused of looking for problems, or sometimes having bs diagnoses slapped on. Of course one can look at ds and say he's ADHD and defiant. That's easy. But defiance is not the only reason he isnt reading well. ADHD does not explain why is still unable to write in a line.

 

I go back and forth with keeping this neuropsych appt. On one hand, i'd like to get it done and over with and move on with life and teaching. On the other hand, are they going to ignore, or roll their eyes at my specific questions? Not a single Dr he's ever seen has directly answered my questions. Or worse, they look at me like i'm crazy when i ask about something specific i'd read that fits him.

 

My only obsession with the accurate diagnosis is to give me a picture of what needs to be treated! I dont care what it is, and i most certainly do not want it to be there, but it is there, i need to know what it is, and i need a plan to help him.

 

I went off on a vent, sorry. If you have a complex kid, or even not so complex, would you go ahead with the neuropsych, or keep looking for neuropsych with qEEG?

[Kaleidoscope]

:grouphug:

 

I sorry you are facing such frustration.

 

I haven't had a qeeg on any of my children but my 11 year old is having one next week. I'm cautiously hopeful this will give us insight. I don't believe I'd bother with the appt without that test being done. She fits the description for lots of dxs until actually evaluated. When tested she always surprises us though by never actually falling inside the right parameters firm dx. It's been very frustrating. I just want to have some understanding of what is happening so we can try to move forward.

[amo_mea_filiis.]

How do i put together an accurate history?

 

From the time he was first evaled at 8 months old, i spent my time fighting with Drs and therapists for help.

 

Just before preschool at 2yr9mo, he was approved for an early intervention mommy and me group. I wanted to like it, but i hated going. It was ran by a speech pathologist and sped teacher who were shocked at my son's lack of services. We were surrounded by other parents who had firm diagnoses;autism, seizure disorder, down syndrome, and here's my kid, the most unruly of the bunch, undiagnosed. The teachers commented that my "parent trainer" was not allowed near any of their clients because she was such a quack. Basically, i have records that he finally qualified for something, and i rarely took him. :(

 

Then preschool came and i had so much documentation it's not even funny. Within 2-3 minutes of every single evaluation (psych, sped, ot, s/l, and pt) the evaluator commented that he absolutely will meet the qualifications. Every.Single.Evaluation showed some delay. Speech, psych, and sped were the lowest. Yet when we went to the meeting, everything was shot down and ds got a 2.5 hour school day, one day speech, no ot, no pt. Not only did the evals note delays, i had medical documentation requesting a full day in a self contained class.

 

When we got near kindergarten, i requested new evals. Again, multiple delays. Psych said he will likely be bussed to a different school in the district to manage his needs. Go to the meeting, he's not only dumped in the school closest, he's put in regular ed with little support! 5 IEP meetings and at the end of the year, the sped teacher was gearing up to advocate for ds, i get his diagnosis changed (it has a lot of weight in NY), and we're preparing for the next year.

 

Unexpectedly, we have an opportunity to move. I know going into the move that ds already has an IEP and will be able to get a part time one on one aide. The overall class sizes are also smaller, so i didnt push for self contained. We get here, and the principal requests the aide based on observation, but then it never happens. Ds absolutely "behaves" better away from me (i know that he is holding it together), so the school was thrilled.

 

By first report card, there are obvious problems. Ds was not getting the speech services on his IEP (ny slp was increasing speech, while pa slp tried to say he wasnt going to qualify).

 

By second report card, ds had not passed a math test, so i requested evals. The scores came back in the lower kindergarten range. The teacher observation included that ds was a very young 1st grader, so his scores meant changes in the classroom, but no sped math instruction. They also added that one of his modifications would be allowing a calculator! A calculator in FIRST grade!

 

This near pointless post is just rambling about accuracy. Eventually, all the "experts" do see the problems that i see, but not normally on testing or first impression of him. After "experts" work with him, and put me off as the crazy munchausen's mother, they start to see some problems. Each step of the way shows this. Early on, he never qualified for occupational therapy. Wait for an age milestone to move him to a different set of tests, and it's "oh my, he's severely delayed" just like i said all along. Same thing happened with language; he's was eligible for a certain eval at 2yr5mo, but what was expected at 2yr6mo was so drastically different that his private therapists suggested waiting so he would qualify with a higher discrepancy.

 

Through all of this, he was in daycares being "socialized," and going to therapies privately as often as I could afford the gas. His speech therapist and the rep from the insurance company milked treatment as far as they could. The therapist would eval every other month, the rep would "lose" the paperwork giving us 2 more weeks of therapy, the therapist would give a snack at the end and call it feeding therapy, etc. every private therapist saw everything i did, but when it really mattered, when we had the opportunity to get the most help, i was just simply a crazy mother looking for problems.

 

Obviously i am frustrated, tired, and overwhelmed with ds. I'm scared to go to the neuropsych and question the results, but i'm scared that if we don't keep this appt, i'll be accused, yet again, of dr shopping for the preferred diagnosis. I dont even know what this preferred diagnosis is supposed to be!

Edited October 19, 2012 by amo_mea_filiis

[Twinmom]

Personally, I'd hold off until I found someone who will do the QEEG. IMHO, both from my experience with my kids and my experience working in the mental health field, you are likely to get more opinions than facts from a neuropsych minis the Q than you would otherwise. The Q will give you measurable data on the brain to make a clear diagnosis...add this to the medical/psychological expertise of the NP and you have a potent combo. Without it, you are left with an evaluation of how closely your DS fits a set of subjective criteria that day...not as specific as what you are asking for.

 

I've said it before...and maybe on one of your threads!...that my neuropsych is constantly telling people that psychology/psychiatry is the only medical profession in which people treat without evaluating the actual organ in question (the brain) and that to do so is akin to a shot in the dark.

 

Just his (and now my) opinion, but take it for what it is worth and make your own decision! I know that affordability is often a barrier with the Q, so do what you can.

 

 

:grouphug:

Edited October 19, 2012 by Twinmom

[Twinmom]

Oh, and after reading your last post...finding a neuropsych who will do the Q is not "doc shopping" for your favorite diagnosis! It is looking for the RIGHT neuropsych to get the most thorough eval possible so that you don't have to KEEP doc shopping! ;)

 

I do have to add this...being able to walk around with a set of pages showing an objective, measurable difference in my kiddo's brains, complete with little color diagrams comparing them to normal brains, has had a dramatic effect on the willingness of others to "see" the problems...as well as to stop blaming me for them! So has that nifty little regular EEG piece of paper that DD got with her Q that shows an abnormal, regular old EEG...a clear pattern of damaged brain activity!

 

:D

[amo_mea_filiis.]

It's canceled. I am looking for a neuropsych with Q. If anyone has any ideas, let me know. Philly is a bit far. We have been 3 times and it is a hard drive and makes for a very long day.

[PrincessAriel]

NT

[Ottakee]

Has he seen a pediatric neurologist? Have they done any genetic testing with him? My girls have mitochondrial disorders and have pretty much all of the symptoms you mention your son having and more. They have POLG-1, LHON, and TK2.

[eoffg1]

Perhaps we can dig a bit deeper into his brain?

Where his 'low lying cerebellar tonsils' need to be understood?

The cerebellar tonsils are located at the bottom of the cerebellum, which sits at the base of the skull.

But at the base of the skull, is a large hole that the spinal cord passes through.

Where the problem with low lying cerebellar tonsils, is that sitting lower, they intrude into this large hole that the spinal cord passes through. Which causes undue pressure on the spinal cord, and can also reduce the flow of spinal fluid.

Which also causes pressure on the first 2 vertebrae, C1 and C2.

Where C1 and C2 are the pivot point, that moves when we turn our head from left to right.

But the symptoms that this undue pressure causes, are symptoms that you outlined.

Including the asthma, where the nerves control the diaphragm and breathing, emerge from C2. So that pressure on the nerves from C2, cause breathing difficulties.

Though notably, the cerebellar tonsils are involved in emotional regulation.

Their is also something called 'Chiari malformation', which has 4 different types, and is a very similar issue.

Yet their is also OS Odontoid, which is another Tonsil in same area.

Where I have recently been helping a woman with a 'floating Odontoid', to explain it to her neuropsych. As he doesn't understand it, and the symptoms that it causes.

So that to get a diagnosis, you would most likely have to explain low lying cerebellar tonsils to neuropsych. So that they can understand what they are identifying.

[amo_mea_filiis.]

Has he seen a pediatric neurologist? Have they done any genetic testing with him? My girls have mitochondrial disorders and have pretty much all of the symptoms you mention your son having and more. They have POLG-1, LHON, and TK2.

 

4 peds neuros. The first one followed him for years but never did anything (beyond initial screening for fragile x and some muscle disorders). Second one for a second opinion and did the MRI which showed low cerebellar tonsils, but that was not of any concern. 3rd was when we moved and said severely autistic. 4th was part of diagnostics and said possible CP, but not definitive, and no autism.

 

He saw a geneticist who did some basic chromosome testing that came back normal.

 

Nothing with him is really severe, or at least doesnt present very severe because he's still pretty young.

 

Perhaps we can dig a bit deeper into his brain?

Where his 'low lying cerebellar tonsils' need to be understood?

 

2 neurologists and 2 radiologists say it's not a chiari malformation, but they have not convinced me that the cerebellum is not somehow involved, or primarily involved.

[dbmamaz]

Lots of sympathy here!! My son was also a 'complex' kid, and we went through several speciaists, with the first two saying "its not adhd, call me if you need anything else" and the third one saying "adhd and aspergers" and the fourth one saying not adhd or aspergers, but a list of 7 other things. I have NEVER found anyone who could help us with any sort of therapy or anything, except the psychiatric, who finally dx'd him as atypical bipolar. for him, the meds made a huge difference, tho now he's still completely lacking in executive function and obese thanks to the meds.

 

You remind me of a friend of mine who had a very medically complex kid. She followed biomedical autism doctors all over the country. I think her son's dx's at this point are mainly Eosinophilic Esophagitis (a complicated food allergy) and a seizure disorder - which took many many times to get found, because its very minimal seizure activity, but the anti-seizure meds allowed him to speak.

 

She had been working full time, and used up all their savings chasing therapies and meds. She has finally gotten to the point where her 'brag' posts way outweigh her complaint posts,and I sometimes feel twinges of jealousy because, aside from the eating issues, he seems to have a much better chance of a productive life than my son :001_unsure:

 

I admit i have, to some extent, given up on finding helpful therapies or anything for my son. I have made so much progress with him in the 4 years since i pulled him out of school

 

but your son still needs a lot of help! You will be the warrior mother and ignore the accusations of Munchausen. Dont stop and dont let them talk you out of it! :grouphug:

[PeterPan]

Amo, I'll just say this, and it may be repetitive or in left field, but whatever. I glanced back at your posts, and he is in ST. However you mentioned the newest evals showed he has motor control issues. When you combine motor control plus expressive language problems, that's apraxia. Given his age and the problems he's having, is it possible that the *therapist* is the issue? I'm such a harper on this, but PROMPT is amazing for this.

 

The only reason I mention it is because the behavioral stuff you're talking about (the aggression, etc. etc.) is a common result of speech problems. I've seen video of a kid you would have sworn was on the spectrum who was night and day after they got his speech turned around. And PROMPT therapists have lots of cases like that. It might explain why it's so hard to break through and figure out what's going on with him.

 

Also, have you looked into the Rapid Prompting method by Soma (can't pronounce all the names)? Look it up. Our ST had the book, so I got to read it a while back. Fascinating look at how to connect with people. She also has videos on her website.

 

Anyways, it might be a thought to pursue. If the expressive language problem is apraxia, you might benefit from an apraxia specialist. The PROMPT institute website is how you would find them. Look for certified if at all possible.

[amo_mea_filiis.]

We've gone back and forth quite a bit on the possibility of apraxia. One slp said no because ds could repeat "puh tuh kuh" a few times (ok, im sure she did more than that!). Another said poor oral motor planning, to which the ot basically said that IS apraxia.

 

Can apraxia sometimes only "show" when frustrated or angry? It sure would make some sense in a way.

 

But would that leave him with other issues? Apraxia only explains the output problems, right? I have to read more, but i dont think it explains his ADHD -like symptoms (which could really be ADHD).

 

I will look into prompt.

[PeterPan]

We've gone back and forth quite a bit on the possibility of apraxia. One slp said no because ds could repeat "puh tuh kuh" a few times (ok, im sure she did more than that!). Another said poor oral motor planning, to which the ot basically said that IS apraxia.

 

Can apraxia sometimes only "show" when frustrated or angry? It sure would make some sense in a way.

 

But would that leave him with other issues? Apraxia only explains the output problems, right? I have to read more, but i dont think it explains his ADHD -like symptoms (which could really be ADHD).

 

I will look into prompt.

 

Yeah, praxis is motor control, any way you slice it. Praxis with a stroke, praxis of speech, oral praxis, dyspraxia (praxis of movement), it's all motor control. Regular speech therapy struggles to be effective with apraxia. I think if you get an apraxia *specialist* you're going to find a much more thorough evaluation of his motor control and see how it shows up.

 

I tell this all the time, sorry to repeat. When I was looking for therapists, I called and talked with all kinds of people. The PROMPT therapist we ended up using spent an HOUR on the phone with me, on her dime mind you, talking it through. That, from what I can tell, is pretty common. So I suggest you email, call, etc., find the highest level (preferably certified or instructor if at all possible) you can find for PROMPT and just talk it through with them. Then you'll get more expert opinions on your direct questions.

 

The levels on PROMPT are 1,2, bridging, certified, instructor. Many SLPs take courses just for continuing education credits, not because they intend to follow through. Don't take a hard case to a novice. If you call someone who is too far, they'll know all the other people in your state anyway and can guide you better. Ours is certified.

 

I'll be curious to hear what you find out if you do make the calls. :)

[eoffg1]

Amo, I wasn't suggesting Chiari, as this is caused by a malformation of the bone at the lower rear skull, that causes downward pressure on the cerebellum and brainstem.

I rather mentioned it, as it can cause similar symptoms to low lying cerebellar tonsils.

Just as OS Odontoid can also cause similar symptoms.

So that they can help provide further insight.

 

You asked if apraxia can sometimes only show when frustrated or angry?

Which is directly related to the fact that these emotions cause what is termed as 'clenching' of the muscles around the neck.

Which exert extra pressure on the nerves extending from the second top vertebrae C2. Which are the nerves that control the oro-facial muscles, involved with speech.

But this can have a snowball, where the disruption to speech, causes greater frustration, and further pressure on the nerves.

Though if this pressure extends down to C3 ? Then this will effect breathing, as the nerves control the diaphragm, extend from C3.

But in motor control and remediation?

We have motor planning and direction happening in the brain, which is transmitted by the nerves to the relevant muscles.

Though if pressure on the relevant nerves disrupts the flow of communication, between the brain and the muscles?

Then this needs to be considered in terms of remediation?

Where what needs to be focused on, is enabling the greatest flow of information along the nerves.

Which given that you wrote: 'Can apraxia sometimes only show ....?'

Highlights that the nerves are in fact able to fully function.

That reducing the pressure, can allow the flow of communication.

 

So that in terms of a diagnosis? The problem is that they look for problems at either end, but don't look for a problem with connection between them?

Though I've been looking into this quite extensively recently, as I've been helping a neurosurgeon to understand a client who doesn't have a low lying cerebellar tonsil, but rather a 'floating cerebellar tonsil'.

[Mommyof4ks]

I have no idea what a qEEG is , but we got a lot of answers for one of my son's simply with a neuropsych eval, but I will say that basically she did not tell me anything I did not already know. We were given some things to work on at home that 'fixed' his issues, and now he is fine. My other son is my complex kid.

 

We could slap an ADD label on him and move on according to several docs, but his 'ADD' is really related to his auditory and visual processing disorders. He has a lot more going on, but working on those two things has really helped to get his behavior under control. He no longer gets frustrated, because he can do what we ask of him. He is a very compliant child, but for years he could not comply, because he did not comprehend what we were saying. That has helped his reading too, because no amount of reading to him did him a bit of good, because it did not make sense to him. He has visual convergence issues too, and he writes his letters all over the paper, not in a line not even on the same side of the paper all of the time. He is getting better, but I think we need to find a new therapist for that. Keep pushing for answers. It takes a long time in medical land. We actually had to go outside of the medical field to a neurodevelopmentalist to get real helpful information, and now we have some terms to help him get the help we need that the neuro. could not provide. It is a long process for sure. :grouphug: