Saw Pedoc today... What a waste of time!!!! Help!

[almostcrazy]

Pedoc doesn't even want to consider a neuro workup at this time. See the psychiatrist first he says, and we will go from there. Shouldn't we be eliminating the medical possibilities first? Says she seems perfectly normal to him. I gave him the list I posted of all of the sudden behavioral changes, and he said well, we can all find something if we are looking. Isn't that the idea? I am looking because my child turned into a different person overnight. I would think you would want to check the brain: MRI, EEG, to see if there is something wrong medically. He said if there were any problems like a tumor, seizures, stroke, or infection their would be other symtoms.

I am so frustrated. :grrr: I told him to come stay at my house for a day, and he would see that she is not perfectly fine. He tried in his funny little way to make her say the words she wouldn't say like: Mom, Dad, etc. Her response was, I know you are trying to get me to say those words, but I can't, and I don't know why. How much clearer can it be??? When I filled him in on PANDAS he of course said it was not even a proven theory, and would be very rare, and that she tested negative for strep. When I tried to explain what to look for on the blood tests, by what I have read, he still didn't seem interested.
Is it just me, or is he an idiot? :hammer:

We have an appointment on the 29th with the psychiatrist. Can he refer her for a neuropsychologist evaluation? Will he?

I spent the day calling Children's Hospitals to see if they did multi-disciplanary evaulations, and most of them didn't even know what I was talking about. One hospital did say it was called a multi-factoral evaluation, and was usually done by the local school system for learning disabilities. When I asked if this evaluation included a neuropsychologist, psychiatrist, psychologist, etc. The answer was no. Otherwise, they had no clue. I feel like I am in the twilight zone, and can't get out.

My difficult child is still having the same problems, and it does seem better on certain days, worse on others. I haven't found a factor that makes the differences, but they happen.

Just wanting to vent. Thanks for listening.

 

[AllStressedOut]

Today must be the day for these docs to decide they're all smarter than we are and by no means are going to listen to us moms. I'm sorry the appointment went this way. We have an HMO and did not need a referral for a neuropsychologist evaluation. Have you called your insurance to see what they require? You may get lucky and find out for psychiatric care, referrals aren't necessary. I couldn't find anyone who could do a multi-disciplinary evaluation the way I had heard it should be done. Our neuropsychologist definately spent more time with our difficult children than any other doctor did, but it still seemed to fall short of what I had hoped for.

I hope you find what you need! I know how hard this is to go through.

 

[Sara PA]

I love how doctors dismiss possibilities because the percieve them to be "rare". Could some of these conditions and reactions be "rare" because doctors like him refuse to do testing and then report the conditions when they do exist?

I was blown off by the doctor when my son was two and I reported his "temper tantrums" looked like some sort of weird seizure. What did I know? I was just a mother who also got weird seizures. Life would have been a whole lot easier with an earlier diagnosis.

I guess a second opinion or a new pediatrician isn't an option. What are the chances you'd run into the same stone wall again?

 

[smallworld]

The only silver lining in this is that you are seeing a psychiatrist soon. The psychiatrists we've seen have all ruled out physical causes before concluding it's emotional (including blood work and sending us for a neuro workup). I'm hoping for your sake you're going to a psychiatrist who will be thorough and look at all the possibilities. Unfortunately, peds are generalists and refer to specialists for a reason. I'm sorry he treated you so shabbily.

 

[Hound dog]

I'd call your insurance to see if a referral is absolutely necessary. If it isn't, make the appoints yourself.

We were supposed to get doctor referrals for specialists with husband's last insurance. I can't recall a single time that I actually did. I just called and made appoints. Insurance covered it. With one that I had with a neuro, insurance didn't want to pay, so I went back to pediatrician doctor and got the referral. lol pediatrician doctor had no trouble giving it when neuro had given Travis the diagnosis of epilepsy. :rolleyes:

When you called childrens did you ask for the neurology clinic? They should know more of what your talking about. At our childrens both the neurologists and neuropsychs work together in the neurology clinic.

psychiatrist can also referral for the evaluation.

And if it were me and my child's pediatrician doctor chose to ignore such symptoms..... I'd be finding another pediatrician doctor! :grrr:

Unfortunately, I've heard that same response from several docs over the years. Believe me, the good ones don't take that approach.

Hugs

 

[Sara PA]

smallworld, you've been lucky. My experience and those of many people (including ones on this board) I've talked to has been the opposite. Try all the standard drugs first then if nothing gets better maybe, just maybe, consider neurological conditions.

 

[totoro]

Be pushy!!! I have asked for blood work etc so many times only to be told, "oh she doesn't need that" I asked the same things as you... what about this or that... and got the same responses. She is not showing signs of a thyroid issue or siezures or anything... I would say but what if and shouldn't we be safe, than sorry.

I finally with my last psychiatrist demanded a complete blood work up, I figured this was a start! She said well if you want it, I guess we can do that.
We did and nothing abnormal, but I know that now!

Now her psychiatrist3 after spending 4weeks with her I asked a couple of times should we consider looking into any brain scans or seizure possibilities??? I listed off why I thought maybe... he actually said that would be a good idea!!!
Now granted he is in the middle of chabging offices and very busy so I have to remind him on Monday now!!!

I got our nueropsych evaluation referral from our pediatrician. and I also took the blood work up to our pediatrician so it would be in her office and done in her office, since I like her and did not like psychiatrist!!! pediatrician finally agreed that blood work was a good idea at this point in time!!!
This has taken a year to get these things pushed through... lots of pushing!!!
We did not get a MDE but have gone to different places to get each thing done. We have a wonderful center here that does nuero-psychiatric evaluations.

As for someone telling you, we can find something wrong if we look... I have been told that so many times and find that SO insulting!!!
My reply now, when I bother is, "Yes we can, but I am talking about things that cause your child to cease to function in "society", the kinds of things that cause your child to not function on a daily basis and if you ever witness this or live with it you would know what I was talking about and would never question someone with a special needs child."
I also say, "I would never wish what goes on in my childs head on anyone elses child ever, so I hope you never have to truly know what I am talking about"
That usually is about enough... one of my other favorites is, "It is easy to sit and read all about these kids, but to actually live and see the suffering on a daily basis with your own child, that is so much more than any book"

Keep pushing... you will get help!!!

 

[TerryJ2]

Arrrgh! I am so sorry. And to say that Pandas isn't a proven theory, uh, that's what a theory IS! I would change offices for sure. by the way, I went through 4 pediatricians with-my kids ... and that was for normal stuff.

 

[Janna]

I never had to get a referral from anyone to see our neuropsychologist. I called, made the appointment, done and over.

FWIW, we saw the neuropsychologist and didn't get the MRI/EEG, because he didn't see a need.

And I think (you'd want to ask Sara), but the scans, unless something ABNORMAL shows up, you get nada. Could be wrong on that one though.

I dunno what PANDAS is, so not much help. Sorry.

One other thing ~ neuropsychologist wasn't any more helpful than the psychiatrist. I know SOME here have had great results with them, but just as psychiatrists, I think there are good, and bad, and not all neuropsychs are gonna hit the nail on the head so to speak.

We have a great psychiatrist, and I wouldn't trade him for the dopey neuropsychologist we had.

 

[Sara PA]

I've come to the conclusion that unless someone is having petite mal (absence) or grand mal (tonic-clonic) seizures, most neurologists won't treat epilelpsy even if something abnormal does show in an EEG. And it is estimated that only 50% of temporal lobe epilepsy shows up on EEGs. I only got treatment for my slightly abnormal EEG because I was having grand mals. They couldn't blow those off.

My guess is that they think that partial seizure activity isn't serious enough to treat. What happens then is that psychiatrist end up treating the resulting behaviors as "mental illnesses" and prescribe medications more likely to make things worse than better.

To the best of my knowledge, neurological testing like EEGs and MRIs aren't normally a part of neuropsychologist testing. Someone correct me if I'm wrong.

 

[smallworld]

Sara, you're right. MRIs and EEGs are ordered by a neurologist and generally performed in a hospital-like setting. Neuropsychologists administer cognitive, motor and psychological tests whose results can point to a diagnosis like ADHD, Autistic Spectrum Disorder, anxiety, etc.

 

[flutterbee]

Our psychiatrist wrote a script, but also ordered bloodwork and an EEG. It's like with any other doctor...some are good and some aren't worth the paper their diploma is printed on.