Long..sorry...hear me out -- questions about Neuropsych and follow up
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Anonymous
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I just got the results from the neuropsych exam. I did this primarily so that my 8 year old DD would have any accommodations she needed in place before third grade testing. She has a complicated medical history that has resulted in OT, PT and speech delays, but no clear diagnosis on any front. All problems we've had have been attributed to a surgery she had when she was younger. So fast forward. She is 8, does well in school but has borderline difficulties across the board -- with attention, with visual processing, with social skills. She is very smart too -- everyone comments on this -- how amazing her vocabulary is, what a good reader she is, how creative her stories are, etc. So....when I got the neuropsych results back, I was a little disappointed. I wanted an "a ha" moment. "So, THAT"S what she has..." I didn't get that. I got a super detailed report outlining the problems I already knew she had -- borderline attention, bad visual processing, working memory issues, some other...but here's my question.
When I see her around other kids, I wonder why this child can come home and write a 20 page detailed creative story, but with friends has trouble carrying on a conversation. Her eight year old "friends" talk about kids at school and what happened during the day, etc. They are gorwing into little people. My dd's conversation is stilted and she asks a lot of the same questions over and over again and her play is very immature. I was kind of hoping to get the answers out of the neuropsych to explain this and I didn't. So, I guess I'm asking. Is no one going to be able to answer this who doesn't observe her all day long at school and at home? |
Anonymous
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I had the same experience with a neuropsych (hm . . . wonder if its the same one) years ago. We wondered if our DS had an ASD and brought him in for hours of various evaluations only to get a report that presented scores for this kind of processing and that kind of whatever but no "it." Which is fine if there is no "it." But when we followed up with yet another evaluation, this time with a developmental ped. DS was in fact diagnosed with an Aspergers. Its been years now and we know the diagnosis is correct. The neuropsych evaluation was a waste of time and money.
You have some red flags here for AS as well, but who knows? My suggestion would be to find a good developmental pediatrician. |
Anonymous
| Who did the exam? Was the school or a private shop? Also, when you meet with them to talk over the results, have them explain why ASD wasn't a diagnosis. What is it about her that doesn't put her on the spectrum. |
Anonymous
| Perhaps you're barking up the wrong doctor's tree. Why do some medical testing to see if there are imbalances anywhere? |
Anonymous
| Our child was evaluated similarly, and we found out little we didn't know already. DC is very smart, does well in school, but has social issues. I agree that you may need an eval with a developmental pediatrician. Also, take a look at things like diet and supplements that can help with digestive problems (the gut is the second brain!), which do affect ASD-type issues that you are describing. Look into alternative medicine, which can be very helpful. Traditional peds say it's worthless, but that has not been our experience. Our DC is now neurotypical, thanks to this approach, and DC started where your child is now. But the key is to look at everything, and trust your gut when making decisions. Doctors don't know everything about your child, only you know your child best. |
Anonymous
Or maybe it's just a coincidence; can't cure ASD period. |
Anonymous
| OP here. We've done bio-med already -- our DD does indeed have gluten allergies and has had, in the past, yeast imbalances. I'm surprised, slightly, to hear everyone whose responded so far jump on the ASD possibility -- is that the only possibility, really, with stilted language and awkward conversations? If it is, i'm fine. I've long gotten over the possibility of it being devastating but is that really the only possibility? And if it is Aspergers or PDD-NOS or whatever, would I be doing anything besides what I'm already doing with Speech and OT in school and social group? BTW, it was a private provider and they said when we met that she absolutely did not fall into the ASD category because she was so social -- she is very interested in being social rather. She loves kids, and tries to keep up with them, but something is definitely off. |
Anonymous
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OP here again. I know its all over this board but where are the best dev peds? I was completely disappointed in Children's years ago when she was three. I was told, "she's very bright. if the attention or executive problems continue, put her on a stimulant in a couple years."
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Anonymous
Are you a physician? I hear this all the time from doctors! "It's a coincidence" "Normal development" "Your child grew out of it" It's a cop-out on the part of physicians who dismiss anything they don't understand or have no training in or knowledge of. I deeply respect the dedication of my children's doctors, yet at the same time, I know their knowledge is limited. By calling my child's recovery "a coincidence" you are dismissing the hours and hours and hours of work I and my child's alternative doctors have done to help my child recover. I've seen the direct results of the efforts I have made, and I know what I have done, using diet, biomedical, other alternative approaches, have made a difference. Yes, my child grew, and that was part of recovering, but not all of it. Unfortunately, I do not have a control clone of my child, so I can neither prove nor disprove that my child's recovery has been caused by the work I have done. But I know what I know, and I know what I see, and I know what I've done and I've seen the results. I didn't give my kid some vitamins and say, "Bingo! Recovered!" It's been years of effort, and it's been successful. Dismiss it if you choose, but I could not have done what I've done without the help of other generous parents whose own children have recovered using the alternative approach. I reach out to others to offer my experience because it worked for me and my child. If it helps one other family, that is my reward. But I won't be stifled by people who have no knowledge of my child's situation. Not all ASD children are helped by the biomedical approach, but none of it is harmful, and if it helps, it is a lifesaver. Our whole family suffers when our child is sick, and our whole family recovers when our child recovers. Hippocrates said food should be your medicine. I believe that is true, and I have seen the results of using food as part of a total approach to healing my child. |
Anonymous
not PP you quoted, but I have several friends who have cured their children from ASD as well. There are recovery stories all over the world. Stop claiming that it's not curable when others ARE having success. And if you want to claim that "they never had ASD to begin with", well then, how is anyone supposed to know the difference when the Dev Peds all say the same thing and give them the same label? If your child is curable, you'll never know unless you TRY. Trying doesn't mean OT, ST, PT, and ABA...those are bandaids, not a cure. Trying means having medical testing done to figure out the imbalances. PP is right that the health of the gut determines the health of the brain. |
Anonymous
ASD is basically an opinion. We've taken our child to the same doctor, and at one meeting she says my child is ASD and at another she says my child is completely off the spectrum. BTW, PDD-NOS and Aspergers are both ASD diagnoses. Look at the symptoms. A diagnosis is not necessary, OP, and can be harmful because it squeezes your child into a box. She may have some aspects of Aspergers, some ASD symptoms, some OCD, some ADHD, some sensitivities to various substances, noise, sensory stuff, a whole mishmosh of symptoms that vary depending on the time of day! We've had great success with speech therapy. We also had our child tested for learning disabilities, even though our child is very bright and was doing well in school. Do as much research as you can, OP, and make up your own mind about your child. You cannot rely on experts solely. They usually diagnose your child with whatever they specialize in, at least that was our experience. Best of luck to you. Keep working at it, and your child will improve. |
Anonymous
Just wondering....when you were doing biomed, did you do an agitated heavy metal test? |
Anonymous
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OP,
See if you can get your ped to run an acetyl carnitine profile. My child has a very mild possible mito condition that showed up as low carnitine. When we treated the low carnitine we saw huge improvements in all of the areas you mentioned. It's a basic blood test that should be covered by insurance. There is some good info here www.alternative-therapies.com/resources/web.../0709_morris.pdfSimilar For us the carnitine seemed to address issues with working memory and language. DD also had some numbness in her mouth area and some OT issues that improved dramatically on Vitamin E complete 8. It really helps to have the bloodwork as a benchmark. HTH in case it might help your DD as well. |
Anonymous
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How do DCUM debates always turn into something OTHER than what the OP asked about? lol
I don't think ASD generally can be cured though a few children don't show the symptoms of ASD anymore after intervention. It's still in their genes. It's still inheritable. It's just not symptomatic because they've gotten it under control. Not every child with OP's child's issues is an ASD situation. Sensory processing disorder is not in the DSM but there are so many children that have these symptoms and yet are being put into the ASD category for lack of a concrete diagnosis. I think ASD is usually easy to diagnose at an early age and the tell tale criteria is lack of social reciprocity. It's not hand flapping, it's not lack of eye contact, it's not social awkwardness. It is the ability or compromised ability to form intimate social relationships with anyone, even one's parents. |
Anonymous
Nope, but if you hear it all the time, I think you're on to something. And why are you taking your kid to doctors who aren't specialists? No one will know your kid like you do but your knowledge is limited to n=1. I'm sure you've done what you think is best for your kid and happy to hear that there's been improvement. OP back to your original question. Maybe there is no definitive diagnosis. You've identified where she needs help and are doing everything you can to make it better. |