Home from Neurologist!

[mom22kids]

removed

Edited August 27, 2016 by mermaid'smom

[PeterPan]

Don't accept psychosomatic, mercy.  

 

So remind me, when he's saying disconnect, ADHD that has an atypical reaction to meds, and severe and unusual degree of SPD, why is ASD or NVLD not on the table?

 

Again, psychosomatic is code for I don't know the answer so I blame you.

[kbutton]

It sounds like he thinks she might have a real issue making her behave this way given what he's tested and how she's responded, not because he just wants to pass the buck. I think he has identified concerning things, and he said it's a component. He's not finished. People who are looking to blame things on patient or mom often do not order additional tests or continue to be thorough. He could be setting them up to just be not helpful, but I wouldn't necessarily go there just on what the OP has said so far.

 

OP, I don't remember what language testing you've done, but is there any chance that when she's asked directly, she's "normal" spaced out, or she needs processing time, but when he's asking you stuff, it feels like the process slows, and she can think about it longer? If she's responding quickly and not just adding to what you say, I would think maybe something is off. If you are answering, it's jogging her memory, that could simply be slower processing or lower receptive language--what you are saying could be clarifying the question for her.

 

I think you should not jump to conclusions, but how he treats you on return visits with other results in hand would be a tip-off to me of whether he's jumping to psychosomatic based on evidence or on the fact that he can't find anything, and so he has to say something. 

[PeterPan]

Figure out the consequences if you let him put psychosomatic in there.  You've got a state system, so if he puts that in does that *stop* you from getting more evals from other people?  I've been in other circles with other labels where this was a common tactic.  It was really one of those things people tried to be cautious of, because there are actual explanations for their problems.  It fine to say counseling.  She has clinical anxiety or ADHD or whatever.  Counseling is fine.  But it's that psychosomatic I would avoid.

[kbutton]

Figure out the consequences if you let him put psychosomatic in there.  You've got a state system, so if he puts that in does that *stop* you from getting more evals from other people?  I've been in other circles with other labels where this was a common tactic.  It was really one of those things people tried to be cautious of, because there are actual explanations for their problems.  It fine to say counseling.  She has clinical anxiety or ADHD or whatever.  Counseling is fine.  But it's that psychosomatic I would avoid.

 

That makes more sense! Yes, that is a word that could be prejudicial even if it is correct in the sense that there is a mental component of some kind. 

[Ottakee]

You might want to ask him to test for mitochondrial issues as well as those can include neurological symptoms,m muscle weakness, ADD, processing, etc. My girls have to take very high levels.of B vitamins, carnivorous, Co Q 10

[Ottakee]

The more I read on your other thread, the more she sounds like my girls. Mito has intermittent muscle weakness, gastro issues, etc.

 

http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934631

[mom22kids]

Ok so much to touch on...it was a 2 hour appointment that I condensed down to 30 some sentences.

 

The Psychosomatic comment was JUST in reference to some diagrams I brought that we used to "log" her leg complaints.  So the page is a human figure and she colors the legs to correspond with how they feel.  So Blue means numb (she often colors the feet this color) orange is tired - she may have colored the quads this way etc.

 

We had compiled about a weeks worth (2-3 sheets per day).  He flipped through them and said point blank that what she is reporting (that she feels) is not possible from a neurological standpoint.  The variability of them, the things she was reporting didn't fall in line with a person who had neurological issues.  They didn't match up with what he would expect to see form a person who had a neurological issue.  But he quickly added that he didn't discount what she is reporting that she is feeling. 

 

Then he said humans have the ability to block out pain AND to exacerbate it just by how they focus on it and he wondered if these leg sensations are new to her and there fore she is hyper aware about them and therefore he is wondering if there may be a level psychosomatic interference with her reports.  It was a SMALL blip of a comment in the big picture.  And his follow up comment was that it was his job to tease out if there is some psychosomatic activity coming into play and that he can tease that out in a few ways.  One being our feedback and her history (which are biased) and some key neurological "flags" that are completely unbiased.  These flags were such things as chronic pneumonia, people who seem to cough a lot etc.  They are concrete indicators for neurological issues.  In our short meeting her history/feedback didn't indicate Neuro flags nor did she have any of the unbiased flags present in her history.  so he said that is in her favor.  But this is ONLY in regards to these leg complaints.

 

ASD is on the table.  It is always something that I mention but in the framework that she is not diagnosed as ASD.  Just that she displays behaviors that are in line with that diagnosis.  But it isn't overly relevant to what we are seeing.  He nodded along and wrote it down.  He wasn't overly concerned but he clearly didn't think it was absurd.

 

As well I am in Canada.  Psychosomatic does not mean a loss of services.  It is all free in Canada. It was just something he was throwing out there as something that he is supposed to rule out.  In fairness...I think he has a point.  She has struggled with anxiety her whole life and I don't think it's a big jump in thinking.

 

Kbutton:  OP, I don't remember what language testing you've done, but is there any chance that when she's asked directly, she's "normal" spaced out, or she needs processing time, but when he's asking you stuff, it feels like the process slows, and she can think about it longer? If she's responding quickly and not just adding to what you say, I would think maybe something is off. If you are answering, it's jogging her memory, that could simply be slower processing or lower receptive language--what you are saying could be clarifying the question for her.

 

So...he actually asked her to step out of the room early on so he could point out what he was seeing and wondered if I was aware.  I was not.  My gut response was to say EXACTLY what you said.  She has slow processing speed so I think she is just commenting as it comes to her.  But then she came back in and lo and behold she was answering/commenting pretty quickly.  Evident that she was more comfortable conversing THROUGH me.  I have a good friend that works in this field and has a child with many of these issues and she said - which resonated with me- that she might be in "flight" mode when someone directly speaks to her.  Sort of an anxiety trigger from having some language processing struggles.  And just a knee jerk reaction to being confused and feeling stupid.  That spoke to me given her personality.

 

The blood work requested is: TSH, Creatine, (eGFR), Uric Acid, Sodium, Potassium, Chloride, CK, ALT, Vit B12, Ferritin, Under Hematology - CBC. 

 

No idea if any of that includes mitochondria??

 

 

[mom22kids]

The more I read on your other thread, the more she sounds like my girls. Mito has intermittent muscle weakness, gastro issues, etc.

 

http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934631

 

I'm at the point where I think EVERYTHING sounds like her!  From Lymes disease to pregnancy! LOL!

 

[mom22kids]

Oh I reread my OP and I do see that my comment: 

 

He also thinks there may be a component that is Psychosomatic - which I can get on board with even though it never occurred to me - he thinks she should be seeing her Psychologist on a reg basis. This was based on how she shut down when he asked her questions  - lots of:  what? I don't know? I don't get it? But when he spoke to me she was constantly giving her input -  all "Oh and tell him about when I xyz" though she seemed VERY comfortable.

 

Should have been typed to read like this:

 

He also thinks there may be a component that is Psychosomatic - which I can get on board with even though it never occurred to me. He also thinks she should be seeing her Psychologist on a reg basis. This was based on how she shut down when he asked her questions  - lots of:  what? I don't know? I don't get it? But when he spoke to me she was constantly giving her input -  all "Oh and tell him about when I xyz" though she seemed VERY comfortable.

 

I literally was 5 mins home from the appt and my fingers were typing faster than my brain!  But I see that it was misleading.

[mom22kids]

Oh and even if all this boils down to "just"  SPD/dyspraxia I believe she will still be in his care - because he said something like SPD is a brain based condition where your brain does not process info correctly.  The MRI will reveal if there is any physical abnormalities in that area of the brain - but it seemed to me that he still felt that this fell under his area of care.

[PeterPan]

CBT is known (from what I've been told) to be good for pain, so when he's saying try CBT for the pain it actually *can* be a good technique.  Doesn't change how her body is wired or that she's having the problems, lol, but yes, it's a good technique and good to get referred for.  It will help the anxiety AND the pain AND... And if the referral gets you coverage, all the better!

 

I don't think mito is just all or nothing, just my opinion.  Unsubstantiated here (no data, no facts, just watching things), I *think* that if you were to do the tests that a lot of spectrum and SPD people have *some* degree of mito going on.  When they do those biopsies and the new genetics testing and stuff, they're looking at percentages of mutations.  *I* think it explains some of the extreme reactions in the ASD/SPD community. (why stress has such a visceral, multi-day reaction, etc.)

 

Btw, the psychosomatic label is thrown around a lot in the MCS community (go for help, get labeled that), and that's where you have a non-traditional problem with no standard explanation so they want to lump and write you off.  Not having an explanation yet does NOT mean there is not one.  It just means it's complex enough that they haven't figured it out. 

 

But yes, I agree with you that the CBT is good no matter what.  :)

 

Mito they do biopsies of muscle tissue (must be live) or there was talk of some kind of new blood or genetics test.  But that was like super cutting edge when I looked into it.

 

Yes, your explanation of her language and how the emotional response to the situation shuts it down is EXACTLY what I was assuming was happening there.  

[PeterPan]

Yes, to see the psychologist and do CBT, work on the anxiety, this would all be good stuff!  And if you pick a psych who has experience in ASD and social thinking, that too would be smart.  ;)  Then they could weave that into the sessions as well.

[Ottakee]

 

Mito they do biopsies of muscle tissue (must be live) or there was talk of some kind of new blood or genetics test.  But that was like super cutting edge when I looked into it.

 

 

When we did mito tests on my older dd it was a muscle biopsy but now they can do at least some of the tests with blood work as they did with younger dd.  There is just still so much to be figured out.

 

Also, as mentioned above you can have a small degree of mito mutation (say 5%) or a high degree (say 95%) and vary from no to severe symptoms.  It isn't like Down Syndrome where you either have or not have it.

[PeterPan]

Yeah, that was why we passed a couple years ago, because the children's hospital ped neuro was going to want muscle biopsies.  She was an expert in it or something.  I just felt like that was too invasive at the time for the question we had.  But I think it's a really serious and important issue, because it connects a LOT of weird dots for our kids.

 

For the op, you might find it really, really interesting to read about what makes the mito flare up.  I'm probably not putting that right.  It's really fascinating.  Then you'll be like oh THAT'S why...

[Crimson Wife]

When we did mito tests on my older dd it was a muscle biopsy but now they can do at least some of the tests with blood work as they did with younger dd.  There is just still so much to be figured out.

 

Also, as mentioned above you can have a small degree of mito mutation (say 5%) or a high degree (say 95%) and vary from no to severe symptoms.  It isn't like Down Syndrome where you either have or not have it.

 

My SN child has suspected mild mito but the neurologist didn't think it was worth doing an invasive muscle biopsy when there is no good treatment aside from what we are already doing. What has helped has been acetyl-l-carnitine (she tested deficient in it), Coenzyme Q10, and coconut milk & oil. MCT oil is supposed to be a better source of medium-chain triglycerides but it is pricey so I just use coconut.

[Kat w]

Yeah, that was why we passed a couple years ago, because the children's hospital ped neuro was going to want muscle biopsies. She was an expert in it or something. I just felt like that was too invasive at the time for the question we had. But I think it's a really serious and important issue, because it connects a LOT of weird dots for our kids.

 

For the op, you might find it really, really interesting to read about what makes the mito flare up. I'm probably not putting that right. It's really fascinating. Then you'll be like oh THAT'S why...

We passed on the muscle biopsies too in ds12. I felt the same way, he's been through so much testing...he's completely shut down. They did do blood work, I can't even remember what for really, or what results that brought back, we were getting results from so much, not sure which was the blood.

 

We give our guys Bvitamins liquid, fish oil, ( I puncture the capsule and put it in a spoon of peanut butter), I forget the co Q 10. I need to put a visual up so I don't forget it. Thought I had that down.

 

OP, it would be good though to not give her anything ( like B vitamins etc) until all the testing is completed.

He won't get an actual true read of what's going on if intervention has been started .

 

I'm glad he feels comfortable taking CP off the table.

I'm also glad you're getting an MRI. That has helped us alot in sorting it all out.

 

Don't forget to 'mom' log. Log everything , even how she reacts and acts when she is home from testing too.

OhE reminded me of this and was able stop some things, get in front of others .

Mommy logs are powerful info.

 

Glad your feeling relived. :)

I always want a nap afterwards lol.

[mom22kids]

We passed on the muscle biopsies too in ds12. I felt the same way, he's been through so much testing...he's completely shut down. They did do blood work, I can't even remember what for really, or what results that brought back, we were getting results from so much, not sure which was the blood.

 

We give our guys Bvitamins liquid, fish oil, ( I puncture the capsule and put it in a spoon of peanut butter), I forget the co Q 10. I need to put a visual up so I don't forget it. Thought I had that down.

 

OP, it would be good though to not give her anything ( like B vitamins etc) until all the testing is completed.

He won't get an actual true read of what's going on if intervention has been started .

 

I'm glad he feels comfortable taking CP off the table.

I'm also glad you're getting an MRI. That has helped us alot in sorting it all out.

 

Don't forget to 'mom' log. Log everything , even how she reacts and acts when she is home from testing too.

OhE reminded me of this and was able stop some things, get in front of others .

Mommy logs are powerful info.

 

Glad your feeling relived. :)

I always want a nap afterwards lol.

 

Yeah I decided not to give any supplements etc until we have answers.  I wouldn't know where to start anyway! LOL

 

You will laugh but my mommy "log" is like nothing you have seen before...I started it when she was having difficulty swallowing.  We had OT's turn us away for treatment because they had no idea how to help.  When we found this OT and she was so stellar I started taking VERY detailed notes so that if she (the OT) got hit by a bus (God forbid) another OT could read what we were doing and where we were heading and hopefully just step in and take over.

 

Well it has morphed into a 100+ page word document that we intend to turn into a book one day (maybe co-writing with the OT).  We have a family member in the publishing industry so we shall see!  lol

 

[Kat w]

Yeah I decided not to give any supplements etc until we have answers. I wouldn't know where to start anyway! LOL

 

You will laugh but my mommy "log" is like nothing you have seen before...I started it when she was having difficulty swallowing. We had OT's turn us away for treatment because they had no idea how to help. When we found this OT and she was so stellar I started taking VERY detailed notes so that if she (the OT) got hit by a bus (God forbid) another OT could read what we were doing and where we were heading and hopefully just step in and take over.

 

Well it has morphed into a 100+ page word document that we intend to turn into a book one day (maybe co-writing with the OT). We have a family member in the publishing industry so we shall see! lol

 

That...is awesome. Hey, that's how good books come to fruition and available for the gen. Pop.

Write it girl! I'll read it :)

 

I love writing. I need to find a better way . I have nerve damage and pain stemming from disk issues at the top of my spine. Writing leaves me doing nothing for days due to pain ,inflammation ,etc.

Typing even hurts.

Hey! I need speak to text ir whatever it's called lol.

 

Sounds funny but. I need that :)

What is that? Like dragon box ir something?