Hesitation in scheduling appointment with neuropsychologist

[TiredSoul]

My difficult child was diagnosis’d by a clinical psychologist in 2007. Nearly 3 years have passed and nothing is really getting better. I found out there is now a neuropsychologist in town – and she happens to be at the same office that diagnosis’d him. I called to schedule an appointment. They didn’t seem to understand why I wanted further testing. I explained it was to have a more thorough evaluation done and that it had nearly been 3 years since his diagnosis and nothing seems to be working. They said they needed to call me back. They called back and left a message and told me the original psychiatric recommended so-and-so and she would want to meet with parents first. This is not the neuropsychologist whom I read had been added to their staff. I googled her name. She comes up in another location as a neuropsychologist, but she is listed on this office’s website as a clinical psychologist. She has Psy.D after her name. OK, so is she the right person to see to have a neuropsychologist evaluation done?

My hesitation in scheduling the appointment is that it is exhausting bringing in a new person, who does not know the history. It seems like an impossible feat to explain what it is we are dealing with. It seems like when I try to explain it, it comes across as typical or behavioral and I don’t know how to truly convey what our difficult child really is like. When he comes to the appointment, he will behave well and probably participate with her and she will think he is normal and smart, etc. What I would almost like is for him to go in there un-medicated so she can really see what he is like. Can they really get a clear picture of what they are dealing with when he is on medication? I don’t want them to look at me like I am crazy for wanting more testing done. Sometimes I even question myself and wonder if I am making this more than it is. Ok, so maybe he does just have ADHD and ODD and those are difficult diagnosis’s to deal with. How are they really going to know if more is going on than that? What difference will it make if we label it something else? Maybe we just need to work with him more about aggression and appropriate ways to deal with conflict, etc. We are working with the school to make sure his education is successful. Maybe we just need to implement new strategies at home to make life more peaceful. I don’t know. You see, I am wavering. I don’t even know what it is we need to do. Maybe I just need to relax and go with the flow. That’s what husband thinks, I’m sure. I just want him to 1) be happy and well adjusted, 2) live up to his potential, 3) be a good person.

Thanks for reading all of this. Sometimes I just need to get it out of my head so I can look at it more objectively.

Jules

 

[klmno]

Yes, it sounds like this is the right person. You want a psychiatric who has a PhD. I think I mentioned in my other post on your other thread that different states identify psychs who do neuropsychologist ttesting differently. It is the norm to meet with the parents first- go to that appointment and discuss concerns and ask about experience in testing kids and your other concerns.

 

[smallworld]

Our neuropsychologist has Psy.D. after his name. It's one of the degrees you can get to become a neuropsychologist. When you go to the appointment, ask her the kinds of tests she plans to do to figure out your son's diagnosis.

 

[TiredSoul]

Yes, it sounds like this is the right person. You want a psychiatric who has a PhD. I think I mentioned in my other post on your other thread that different states identify psychs who do neuropsychologist ttesting differently. It is the norm to meet with the parents first- go to that appointment and discuss concerns and ask about experience in testing kids and your other concerns.

Thanks klmno!

Our neuropsychologist has Psy.D. after his name. It's one of the degrees you can get to become a neuropsychologist. When you go to the appointment, ask her the kinds of tests she plans to do to figure out your son's diagnosis.

Thanks sw! What kinds of tests 'should' they use to diagnosis him? Is there a list? I know just in our pediatrician-doctor's office, she gave him a MOAS - Modified Overt Aggression Scale (yep, he's aggressive), and a SCARED - some kind of anxiety scale (a little anxious mostly in the separation area which surprises me somewhat). I guess I wish there was something they could hook up to his brain that would say - bingo - that's it, you have X. The questionnaires bother me because I don't want it to all be based on my perception. Maybe my perception isn't reality - Know what I mean??

 

[susiestar]

IF I understand this, the therapist is listed in one place as a neuropsychologist and in another as a clinical psychologist. Have you called the practice and asked them if she is certified as a neuropsychologist? One listing may be several years old and not have her full credentials listed. If they say yes, and you think they really understand your question, I would book an appointment. If they say yes and don't seem to understand, ask to leave voicemail for the doctor and ask the doctor about her certification and training.

Explaining the history and all that we have endured/tried/explored/been thrown out of/had problems with/yada yada blah blah blah is really hard. Especially if you are doing it from those forms they give you. If your difficult child is like Wiz was, many of the things he did would not be a big deal except that did them with such an intensity or took something to such an extreme that it became a big problem. For example, many people think having a 3 year old who can read the newspaper headlines is great, or a 4 year old who can read chapter books is great. They don't understand what we go through when that 3yo asks what "decapitation" means (from a headline during the OJ trial - first time we realized he could truly read). They don't understand what happens when that 4 yo picks up a Goosebumps type of book and then has screaming nightmares for a week even during his naps. They truly are boggled when they learn we have banned newspapers from the house totally because it is just too difficult to keep him out of them and they mate like rabbits in the recycling bin.

It is esp hard to explain all of this in a short meeting with a new doctor of any kind. It is hard even if you have 2 hours with the person.

This is EXACTLY why we strongly recommend creating a Parent Report. There is a link in my sig that will take you to the Parent Report thread. I believe it is titled Parent Input/Multidisciplinary Evaluation, and it is in the General Archives as one of the first few threads there. A parent report will let you tell the doctor everything - the good and the bad, your hopes and dreams for him, and his hopes and dreams too (if you want). Years ago some of the parents here worked out this outline and it is incredibly helfpul - esp if you update it periodically!

I make sure my difficult child's name is on every page, just up at the top in a header. Our school does photos twice a year. The second time they send home a bunch of little pics with tape on the back so you can stick them on things. I make sure there is a photo of my child on the front, and at the beginning of every section. I even put one in the middle if the section seems really long to me. Most of us have to know someone quite well before we can remember who they are and the details about them if we just read or hear their name. If there is a picture we are able to remember a lot more about them usually. This way the docs remember which kid the report is about as they read it. I cannot take credit for this idea - I was getting a second opinion about some recommended surgery and the office took a picture of me to keep in the file so they could keep my identity straight. When the sticker pictures came home from school it seemed like a great idea to use them that way, rather than letting one of the kids stick them all over something.

AFter you write the Parent Report, make some copies. Put a copy somewhere at home so that you never take it out except to update it. Then mark a copy as yours, so you can make notes in it as you see various docs. Then pull out the sections you want the doctor to have and make them into a separate report. Same for school, IF you want school to have the info. Often we find docs and schools don't always need all the info. Schools especially can use certain things against you, esp if they twist them and/or take them out of context. Many of us have also found that schools don't keep info as confidential as we would like. I am NOT saying it happens to all school, or slamming anyone who works at a school. Some schools understand and use the info very appropriately and it is a benefit to both the teachers and the difficult child. The first sp ed teacher Wiz had was in 5th grade and the info was used well and kept confidential by even her aide in training. The next year was another building, another sp ed teacher, and office staff who gossiped about some of the things in his IEP. That year I was glad to only give them some of the Parent Report - and that I had a good enough relationship with the prior sp ed teacher and could ask her to not send the complete report on with the rest of the records.

As for if the testing can get a clear picture while he is on medications, yes. He is likely to be on the medications for quite a long time, so testing him while he is on them will give them a picture of what is going on. If he is not on the medications he may not be able to do the tests depending on how he is off of them and if he is having any withdrawal from not having them in his system (some of the medications can cause withdrawal problems, which is why medications should not be stopped with-o a doctor's advice). To test him off of the medications you would likely need to do a full medication wash, which would be 6 weeks or so completely off medications after you taper them down. It isn't a fun process.

Some docs do like to do the testing with-o medications, esp if there is no baseline to compare results to in ordewr to find changes. As you have the previous testing, this shouldn't be needed. You should ask the doctor what is recommended as far as medication. It may depend on what medications he is on and what they do, or don't do. As far as the concerta, they might want to do some tests before he takes it and some after he takes it. It will work very soon after he takes it, unlike other medications that have to be in the system for weeks before they reach their full effect.

If they think you are crazy that should be THEIR problem. Letting you see even a hint of that is highly unprofessional. Remember, you are advocating for your son, working to get what is best for him. While he may have only ADHD, often it is just the first diagnosis. Many of us started out with "just" ADHD and later found out we had a LOT of other stuff going on. ADHD is actually a symptom of some things, like Aspergers. ADHD is written as a separate diagnosis for record keeping, but many checklists for Asperger's have it listed as a sign or symptom. Listing it separately is a way to get all the doors open for what he needs and to get insurance to pay for them.

I believe it changes from area to area, but schools usually insist on a new round of testing every so many years. Here it is 4 years I think. Or it was. Either way it really helped to get Wiz some of the accommodations he needed - in year 3 after he was tested he got to the point where he did everything he could to sabotage testing.

Have you done the checklist on Childbrain for Pervasive Developmental Disorder (PDD)? It might be very helpful as you talk to the doctor prior to testing. If you do it, print it out and take it with you. I am not sure of the website, but it should be in the archives or one of the mods or Marg will know it.

I hope this helps. it is frustrating when you get so many different responses from docs. Esp when they manage to make you doubt yourself. (We sure don't need the experts to do that - the difficult children are good enough at it!!!LOL!!!)

 

[TiredSoul]

Thanks for such a great response Susie!

Yes, I did a Parent Report when I first found this website back in 2007. I update it at least yearly, if not more. It's interesting to look back on it and see what are still issues, what are no longer, and what new issues have come up. It's has been very helpful to have it. I also have a medication log so I can keep track of the medications we've tried along with dates/duration and side effects or results. Also very helpful. Good idea on the sticky pictures.

It seems like almost every time I come across someone recommending that checklist on Childbrain for Pervasive Developmental Disorder (PDD) I go there and it does not describe my son. His pediatrician and others have suggested he may have anxiety which I never thought he had, but now I am looking at that more closely and it could be the case. I think I am going to take a look at a new book recommended to someone on another thread called: What Your Explosive Child Is Trying to Tell You: Discovering the Pathway from Symptoms to Solutions. I have a entire library on the subject. Just seems nothing works for us.

Thanks again!
Jules