I want to scream after neuro visit!

[lovelyboy]

Its now half past 6 in the evening...we have been at hospital since 8h30 this morning!
I dont even have the energy to tell all about the neurologist visit! We did the MRI...it seems normal...Dr not confinsed he has epilepsy....I told him some history...he asked kido to catch a ball, walk up the steps, jump on one legg, some maths, writing exct. difficult child wasnt in a very good mood, because this dr is very quiet and not very friendly....so after he spoke 3 sentences with my son he told my son to drop his bad attitude! My son didnt even heard this....so yes my son was quite rude towards this dr.....but I was also very irritated with the dr!
So then the dr went on saying we must stop looking for psychological problems....that he has no Autism Spectrum Disorders (ASD)...dont need Occupational Therapist (OT) or ST , nothing....my son is a massive manipulater and there is no pills for this! That my husband needs to spend MORE time with our son....by the way,,my hubby spends every night and weekends with difficult child.....that we as parents need to get our priorities right, otherwise we are heading for big trouble with difficult child (as if we dont know this! Thats why we were there!)
That the bible say we need to obey our parents, my son needs to learn who is the boss of the house....bla, bla, bla. I asked him dont he believe in SI exct....he smiled at me and said we need to excuse him he has a very sick pt in theatre who he needs to attend to!
Ok...somwhere does this leave us? So according to him the psychiatrist who was treating him for 6 months is talking nonsence! I want to cry, scream, go mad!

 

[InsaneCdn]

Take all this back to the psychiatrist... and start again.
Most of us have hit endless brick walls and closed doors before we got answers.

{{hugs}}

 

[buddy]

Its now half past 6 in the evening...we have been at hospital since 8h30 this morning!
I dont even have the energy to tell all about the neurologist visit! We did the MRI...it seems normal...Dr not confinsed he has epilepsy....I told him some history...he asked kido to catch a ball, walk up the steps, jump on one legg, some maths, writing exct. difficult child wasnt in a very good mood, because this dr is very quiet and not very friendly....so after he spoke 3 sentences with my son he told my son to drop his bad attitude! My son didnt even heard this....so yes my son was quite rude towards this dr.....but I was also very irritated with the dr!
So then the dr went on saying we must stop looking for psychological problems....that he has no Autism Spectrum Disorders (ASD)...dont need Occupational Therapist (OT) or ST , nothing....my son is a massive manipulater and there is no pills for this! That my husband needs to spend MORE time with our son....by the way,,my hubby spends every night and weekends with difficult child.....that we as parents need to get our priorities right, otherwise we are heading for big trouble with difficult child (as if we dont know this! Thats why we were there!)
That the bible say we need to obey our parents, my son needs to learn who is the boss of the house....bla, bla, bla. I asked him dont he believe in SI exct....he smiled at me and said we need to excuse him he has a very sick pt in theatre who he needs to attend to!
Ok...somwhere does this leave us? So according to him the psychiatrist who was treating him for 6 months is talking nonsence! I want to cry, scream, go mad!

What's that old Western line??? "Get a ROPE"

To be honest, this is exactly what happened to us when we needed someone to take over our neuro care when our neurologist had to stay home with her kids for a while. Some neuro's only get what they can see in their back and white tests....

They dont get the neuropsychologist stuff.

In fact Q's seizures were dismissed too.... they didn't add the right leads and until they did, no way to document what was going on. Do you have the equivalent of an inpatient seizure evaluation? That is how we got it.

Unless they are displaying symptoms at the time they do the eeg or the doctor is there, we are often dismissed. Epilepsy boards are full of people who had been told for many many years that they were to blame, were faking, needed to stop the whining etc.

I would love to run an electrical current through his temporal lobes over and over, even minor ones, and see what he thinks!

send the MRI to another consult. Go to someone else for the neuro evaluation. Ignore this dismissive jerk.

 

[DDD]

Scream into your pillow. Maybe, cry into your pillow. Do whatever you need to fall back and regroup. It is a screaming shame that many specialists just don't have compassion or listening abilities. I had a similar situation with a new psychiatrist. He told difficult child#2 "I am the Doctor. You will sit still and be quiet." Then he added (true story..sigh) "Don't you know that I can Baker Act you?" difficult child#2 was around ten, adhd and AS diagnosis's. I understand wanting to scream...I am not a screamer and I wanted to scream at the psychiatrist
in the office. Sigh!

So...fall back and regroup is my recommendation. Our "next" psychiatrist turned out to be a wonderful, kind, knowledgeable and supportive man. Fingers crossed that you next stop will bring a winner. Hugs. DDD

 

[lovelyboy]

Buddy....you will love this: He said that if we dont see any twitch or something, then he is not having any epilepsy! But before the MRI he siad to me that he just saw my son had a sudden movement...if I see this at home too? He never did give me an answer of what caused the abnormal EEG?
When I spoke to the psychiatrist last week after she received the EEG report, she said she would put him on anti epilepticum immediatly! I am SO confused now....so we are seing psychiatrist tomorrow....so according to the neuro this doctor ( who by the way he has been working with for years and who is talking highly of him!) is spinning nonsense! So how must I believe the psychiatrist in the future....? What if she says tomorrow lets try epilepsy medications?!!!!!He didnt ask ANY questions relating to ANY Autism Spectrum Disorders (ASD)? So how can he dismiss it.....From the start he marked my son as manipulative and rude....nothing else then mattered!
Ok me and hubby did try and force and push difficult child into obying us tonight, being the strict, non manipulative parents! My son went to bed sad and sobbing and this doesnt make me feel good at all!!!!!I even told hubby that maybe he must start giving difficult child hidings....but husband doesnt feel comfortable with this at all!!!!!
I think I am going to take a long time to get over this abusive appointment!!!!!

 

[buddy]

I think these guys sometimes have their very narrow definitions. For example, the doctor inpatient said, these "abnormal electrical discharges" are happening all day every day and night...they wake him and seem to affect his mood, vision and behavior. Now, her partner (not a seizure specialist but a neuro) says, these are simple seizures. Seizure specialist says they technically do not rise to the strict definition YET SHE is the one who put him on Lyrica! They chose lyrica because it was one his body could metabolize (with the enzyme thing) and because for many it is used for headaches and anxiety. For him doesn't seem to help with anxiety but it got rid of the head aches, which DUH seem to only come after seizures so of course it did.

Bottom line, there is something going on and IT MATCHES his symptoms. That right there does not take a genius to figure out. It may not be "seizures" or epilepsy by strict definition but for example...where Q has his brain injury on the frontal lobe area...there is always aberrant patterns. It is these spikes that they look for etc...

but clearly the eeg is still important because it shows problems that back up your experiences with him. I am hoping your psychiatrist will use this guys info as just evidence there is nothing TERRIBLE going on but also as a clue to what IS going on.... and it may not be a bad idea to try a seizure medication as they are used for other issues including the behavioral concerns you have noted. will be interesting to see what psychiatrist says.

Dont take the extra comments from this dink to heart. That is exactly the kind of thing we have all experienced some where along the line and we always find out they were just limited and ignorant.

He might be THE expert in one thing but certainly not ALL things and certainly not YOUR CHILD.

DO not spank him... not yet anyway (smile)... a sudden change like that will demoralize him. Remember, he has been worried about being "sick" too. This has added a huge weight to his already over burdened heart. Just MHO I wish you and TeDo's little one could see Q's therapist.... she is so good with these guys. I saw her take two other boys in when Q was there for Occupational Therapist (OT) and wow is she good with them. We got lucky.

 

[Marguerite]

Your child, under less than optimum conditions, copped an attitude with the doctor who, in my opinion, stepped way outside his bounds in doctoring to assert his own (conservative) views on parenting, without actually finding out how you DO parent at home. He then made assumptions he had no right to make, which of course affected his judgement when it came to assessing your son's medical condition.

Do not get stricter, you saw what happens. What he needs is consistency and positive motivation. That does not mean you have to be a doormat, but you can work towards improved behaviour through positive motivation just as effectively (if not more so) than through regular thrashings.

Take all the findings and your own report back to the psychiatrist who referred you. Maybe psychiatrist won't be so glowingly enthusiastic about this neuro in the future.

Medicine is an inexact science, mental health triply so. I've been ill with a neurological/immunological condition for 28 years (currently doing vastly better - not sure why but doctors have some ideas) and I still do not have one diagnosis that all doctors agree on. Over the years, especially in the earlier days, I was treated as if I was a malingerer, mostly by neuros. And yet my current specialist, a neuro, is marvellous about treatment and working on the physical deficits I now have after so many years.

This level of medical acceptance has taken time and continuity of care. I've had to put up with a lot of crud along the way.

The problem is, when it's us we can put up with a lot more than we can when it's our kids. With kids, we have a narrow window of opportunity in which we can help them reach their potential. Anything getting in the way of that, we find our frustration levels rising rapidly, as well as our panic that we will not be able to get past our hurdles in time to help our child.

So - go back to the psychiatrist. Share your experience. And see where it takes you from there.

Marg

 

[lovelyboy]

Thanx For this info.....it does make alot of sense!
Yes, I agree.......there must be some importance in the EEG results....even before difficult child went for the MRI the neuro said with results like difficult child's it would be irresponsible not to investigate further! BUT at the end he got so caught up with all the emotional stuff he never did give an explenation regarding the EEG results! And yes, for us it does give some explenation regarding symptoms!
I will keep you posted about psychiatrist appointment!

 

[InsaneCdn]

Sometimes, the psychiatrist (or even a family doctor) can get more out of a specialist than you can... some specialists don't speak "human" they speak "medical" and are more comfortable letting somebody else translate...

 

[gcvmom]

I think Marg gave you some very good advice. I'm sorry it was such a horrible exam. Trust your instincts!