posted
My husband and I have been advised by our LLMD's to have a neuro psych eval done on our child, who is 5 and has episodes of of OCD and impulse control issues, mixed in with tantrums, ect, in conjunction with Lyme.
After much searching for a doc that will do assessments on children that young, I came up with 2 names,
one recommended by Dr. F, who is a colleague at Columbia, the other a local dr, who has published extensively on Lyme, but our LLMD wasn't that enthusiastic about.
The local guy does a 1 hour eval, for $400, but no written report.
The other does a full day eval including a full battery of tests, with separate appointents for parents only that include intake and outcomes, with a written report following. All for $4200.
Neither accepts insurance.
We are experiencing sticker shock.
Those of you who have been through this process, please advise!!!
posted
I wouldn't pay any doc to 'officially' diagnose me or anyone I love as being a mental case.
What purpose does it serve? Will it improve your kid's health? What makes any of these doctors experts anyway? Seems like a good way to quickly increase their income. Why not just look for surveys on myspace that assess mental health and neuro function?
I have inflammation, reduced blood flow, bacteria, fungus, viruses, toxins, metals in my brain - all of which are constantly being 'charged' by nearby cell phone towers and wi-fi.
What exactly is the psychologically sound way to behave under these circumstances? And do I need someone with a professional license who has never experienced the hell of Lyme to tell me?
As far as I'm concerned, I'm sane. I wasn't always this way though.
Ever trusting my doctors was a clear indication of insanity.
we have psychologists/psychiatrists members on board; hopefully, some of them will come along eventually at night, and be able to give you some guidance!
i don't know if TREEPATROL would have anything related at all in his newbie links AT TOP OF MEDICAL. check it out ok! normally has a specific heading to help in searching.
posted
As a Special Educator in my other life, I have a different perspective. IF your child's symptoms mean he may need additional services in school, then a good neuropsych would be a great tool.
Having said that, if he appears to need evaluation in school, it's the responsibility of the district to do a psychological assessment.
It all depends on your child's needs and the willingness of your district to support him. If he's unlikely to need supports in school, then it may be a moot point.
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
What would be the benefit of the neuropsych eval?
My dd was dx lyme in 6/05 and rx, unsuccessfully. She had major neuropsych issues including ocd, bi-polar, depression, suicide and anorxia symptoms. At three and half she was telling me "I wish I was dead, Mommy."
That really threw me for a loop. What I found was that we wouldn't be likely to get a firm psych diagnosis in a kid with lyme. Thus we pursued further lyme rx. She's now seeing the eminent Dr. J, in Ct.
Within 10 days of beginning rx for Babeosis (which we hadn't known she had) she went through a complete personality change!!!!! I'm talking almost overnight. She went from hating herself, wishing she was dead, to singing happy songs. When she was sick she only drew frownie faces and within 10 days she was drawing all happy stick figures. I have the pictures!!!
I say if you are still seeing alot of neuropsych symptoms in a young child, maybe there is an overlooked co-infection. How long have you been treating, etc.
I agree with Tailz that a psych dx may not be helpful. It is just a label. On the other hand, if you think that psych meds would help--maybe its worth pursuing. But for me, given the stigma and bad side effects from psych meds, I would really give lyme rx a chance.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
We had a similar experience with our daughter. In her case, she went from being a very confident and happy child to extremely reactive, not just with us but also with her friends. Pointing out the color of the sky could make her angry. She also had some strange body image perceptions.
When we began lyme treatment, things started to change, and the more treatment she receives, the deeper the change. It just keeps getting better.
This is not medical advice, but simply our own personal experience.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Hey, you two moms with turn-around stories. Thanks for sharing.
The story about sad art - treatment - happy art is stunning.
I sent that to a friend who is an art therapist.
I had to re-read it before noticing you were talking about Babesia tx, not just lyme.
posted
As a teen with neurological Lyme I have yet another perspective. I had the neuro psych testing as one of my first things upon finding out I had Lyme. It was one of the big eye openers with Lyme and helped all of us out a ton. This also has helped immensely with the understanding of the school and they have helped meet my needs.
Not only does it give you a good idea of what is going on it also provides a written summery of your child's weaknesses and can aid in helping you understand what he is going through. I know it helped my parents understand me more and understand things I was going through such as poor short-term memory and low concentration levels. Although the price is high you can frequently submit the evaluation to your insurance yourself and sometimes you can get it covered. Not always does this work but I know that my mom was able to get my evaluation covered by the insurance company and it was an invaluable tool for our journey and us.
So please consider using it and definitely discuss the financial issues you're experiencing with your doctor who recommended you go through with this test. He might be able to advise a neuro psych specialist who is very good with a less expensive price tag.
I wish you the best of luck and I am very sorry to hear of another kid with Lyme!
- Vic
Posts: 82 | From New York | Registered: Feb 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Lymemom-
sorry to drop out of sight for so long, and will send you a PM separately.
on this question, though.
i'm not sure i understand what you are saying about the referrals for neuro-psych testing, and have several questions. my mind is mostly sludge for the time beign, so sorry if i am missing the obvious.
your dd has already been diagnosed with Lyme, right, and is in treatment? does her llmd confer with Dr. J? why does the llmd think she needs neuro-pysch testing?
i'm assuming the two referrals you mention must be for 2 different types of neuro testing, because the price is just too different.
the 400 dollar version sounds like it will consist of a trip to a neurologist of one stripe or another, who will do the "testing" one on one in a very short time- an hour at the most- and the test will be highly subjective.
the full-bore neuro-psych (NP)tests i had done at Columbia lasted 2 full days, were scientifically sound, and were NOT meant to decide whether or not i was mentally ill, but to determine what kind and of what degree were my cognitive deficits.
columbia's neuro-psych (NP) tests are the only ones in the US designed to differentiate Lyme-related neuro problems from problems that are primarily psychological.
is it possible your llmd is suggesting tests to make that distinction?
btw, the price tag of $4,000 is ASTOUNDINGLY high! i think my Columbia NP tests PLUS a Lyme eval and tons of lab work all came in at least 1,000 less than that, and i can't see why you would need to have anything but the straight NP tests, if that.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I'm sorry I've taken so long to get back to this post, and I have only a few minutes now, will be back later after the kids go to bed.
The LLMD's recommended an eval to provide further documentation to support moving towards IV abx. He has been on orals for 8 months now, with some improvement in physical symptoms, and an increase in behavioral/psych symptoms.
I am not seeking a psych diagnosis, as his symptoms are transient, and do not meet DSM IV criteria for a dx anyway. Nor do I want that label hooked on my kid. At his age, meds are contraindicated, although some docs might prescribe anyway.
At the same time, his behaviors are becoming increasingly difficult to manage at home, and today he came home from school telling me that a kid in class twisted his arm, so he hurt the kid because the kid wanted to be hurt.
I am very concerned about these symptoms spilling over into his school days!!
The research center at Columbia will not do evals on pediatric patients, nor will Dr. F. I spoke with him directly today, and he referred the colleague mentioned in my initial post (the $4200 one).
I did a search on the LDA site and posted in seeking docs here, the next closest doc is in PA, then Illinois.
I think the biggest challange is his age. He is only 5. It is not easy to have your 5 year old punch you in your stomach or say that he wants to lock you outside of the house until you die, then 5 minutes later hear him say how much he loves you.
Nor is it easy to hear his not quite 3 year old brother say over and over again that his brother has hurt him.
This is not an easy path to pursue, but at the same time, i'm not sure that we have much choice.
As to the school district paying, he goes to catholic school.
Our public school had an incoming kindergarten class of 150, and our son is very overwhelmed by overly stimulating situations
(ie: he has a tough time tolerating the lunch room, and leaves school by a different exit as he was too overwhelmed by going out the front door with 100 other kids at the end of his school day. )
The school district may still have an obligation to pay, but since at this point they are not involved, I would rather take the opportunity to go to the doc of my choosing (an LLMD).
As to coinfections, he has been tested, but all came back negative.
His LLMD is considering that we may have a bartonella coinfection, given that he has significant GI issues and behavioral issues.
She feels that his current meds should be addressing the bart as well though.
He is allergic to amox. too young for a lot of the meds that adults take for Lyme and bart.
I hoped that answers some of the questions raised, i will be back after 9 to check on the thread.
Thanks all for your input. kp.
ps, for those of you who weren't around when I first started posting here, my son had over 20 em rashes at the time he was diagnosed. In retrospect, he was symptomatic for about a year before that.
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Here a different perspective. I worked with Neuro psych's on
Stroke Rehab teams. Incredible knowledge of the brain.
I never really knew what the man would be saying to me
(Way over my level of neuro), but I would just smile and nod at the appropriate times.
I guess he thought I was that smart.
He brought a really good insight to the patient.
He could support my findings as a Speech Pathologist.
As much as I hate to say it......What good is an eval if there is no written report?
What will this guy do? Give a verbal report?
That is scary. Whose to say he doesn't "stand" by what he says.
Or refutes it? Yikes!
I would expect an eval. A written one. That is the only one
That could help your child in school.
That being said can you appeal your insurance to possibly cover some of it?
Denials are common with insurance.
Check with the cheaper doctor and see what exactly he gives you.
It would have to be written/documented to be of any help.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I had neuropsych testing done at the recommendation of my SSDI attorney. There are plenty of psychologists who are competent enough to do this related to Lyme.
My testing showed my widespread cognitive problems and the report outlined how they affected my ability to work.
I assume with a child they would show how school work would be affected. This testing has nothing to do with a psych dx.
A test without a report is worthless and not worth a penny, in my opinion.
I agree with Geneal that if the school needs the info and his behavior is affecting his school work or behavior then they should be doing the testing.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I had a little chuckle when I saw this post on the board as I have just returned from bring my five year old daughter from her appointment for a neuro-psych evaluation. I found personally found it quite informative, and gave me an insight what specific cognitive difficulties she has as well as how I can help her with those weaknesses. I hope with antibiotic treatment will make these symptoms improve, but it is nice to know how I can help her in the interm. I am having both children elvaluated, my son is going for his evaluation next week. I don't look at it as getting a psyhcological diagnosis for my kids but understanding how lyme affects them psyhologically.
Tracy
[ 31. January 2008, 11:17 AM: Message edited by: tad ]
Posts: 41 | From Singapore | Registered: Jan 2008
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neuropsychological testing is imperative even after a correct diagnosis has been made. My 10 year old daughter is suffering from congenital bartonella and lyme. She has been in Title 1 reading since she entered school. Much trouble with word comprehension etc. The school took her out of Title 1 this year as she passed the MCAS. After much struggling and effort on my part they put her back in as her reading skills are very poor. We are having a neuropsych eval next week...after much research...this will help validate for the school her continued need...this is her future...there is a very good neuropsych doc in New york that deals with lyme and kids. If you email me I can give you his name. The best! Lisa
Posts: 67 | From cape cod | Registered: Aug 2006
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bettyg
Unregistered
posted
glad to see you are getting input from other moms w/kids who have/are doing this.
victoria, thanks for your input from a teen who HAD this testing done, and your feedback to help the moms too!!
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