Does seeing a neurologist help any?

[krittengirl]

Hi, I'm new here. I have 4 children, 3 of whom have some type of issues going on. The one I'm really needing help with is my 7 year old daughter.

She has been diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified, and ADHD. She sees a counselor regularly at The Center for Autism, a local clinic in my area. She has been on a number of medications and is currently on Concerta and Zoloft (past medications including Adderall, and Focalin have made her extremely emotional and have brought out a lot of Obsessive Compulsive Disorder (OCD) tendencies). She has seen an remarkable increase in sensory issues since this past fall as well as with stealing/destroying things. She has very little impulse control and tells us and her counselor that she can't stop herself from doing things.

She is a very sweet girl who everyone likes upon first meeting her. Educationally she is average. She tires very easily, has trouble winding down and going to sleep at night but also has trouble waking up once she is sleeping.

What I am wondering is if it would be beneficial to take her to a neurologist. Could this actually help us in treating her, or would it just be another picture of what we probably already know.

 

[emotionallybankrupt]

Welcome! Several questions come to mind for me. What does the doctor who prescribes the current medications think about a referral (and do you have faith in that doctor's opinion)? Do you suspect a sleep disorder? That question is more because of your comment about trouble waking that trouble winding down--unless you think the trouble waking is just due to not enough sleep. Is there any common ground with the issues going on with the three children? Are all three biological children of yours or biologically related to each other?

 

[Shari]

What does your mommy-gut tell you? Does it say the doctor you have now has nailed it? Or is your gut saying "there's more to this picture?" Don't ignore that gut feeling...its taken me a while to learn that more often than not, its right on.

I have pushed til they gave me answers and explanations that made sense to me - and we'd have missed a ton of really vital info if I'd settled for the first souple of docs' opinions...

 

[DazedandConfused]

My answer would be that if the neurologist finds no brain anomalies, then my experience is that one may not be of much help to you. Son had a C-scan and a MRI and they showed nothing atypical. However, it was good to at least have that ruled OUT.

That being said....the neurologist did give me some recommendations for a few neuropsychologists. He knew the good ones and that was very helpful to me.

 

[Marguerite]

You sound like you're not sure the diagnosis is spot-on. Therefore it is always a good idea to keep an open mind and where you have doubts, to keep gently (or not so gently!) challenging the diagnosis. If the diagnosis survives the challenge, then you understand better and have fewer doubts. If the diagnosis does not survive the challenge, then something with a better fit takes its pace.

a neuropsychologist may be a better person to see for something like this. In my experience, neurologists tend to only value manifestations that they can empirically measure. Reflex responses, nerve conduction rates, X-rays, scans etc. I personally see a neurologist (for neurological problems) and the current bloke is more adventurous than many others I've seen over the years. He also treated easy child for headaches when she was about 13. I wouldn't take difficult child 3 to him for the autism, because I don't relly think he would know what to do, more than the average GP.

But you never know - you could happen on a neurologist who is interested or understands it.

Girls with Pervasive Developmental Disorder (PDD) also tend to present rather differently, which is something still lacking recognition and understanding in some areas. Again, a good neuropsychologist who keeps up with reading should know this and be able to help you.

It's up to you. If a local autism support network have a neurologist they recommend, it might be worth considering It could be cheaper than a neuropsychologist. But I do believe that eventually you'll have her seen by a neuropsychologist anyway, since it's a sort of "all roads lead to Rome" scenario.

Talk to local support networks, try to get your daughter involved in various social groups in your area to see how she gets on. We've got difficult child 3 involved in a local drama group for kids with learning problems - a number of the other kids are Pervasive Developmental Disorder (PDD) in some form, others have Downs Syndrome, some have various forms of otherwise unspecified developmental delay. Some are high IQ, some are low. There would be over 100 IQ points difference between the lowest and highest but they all support one another. The love and friendship between them all is wonderful. Of course it's not always perfect, sometimes there are clashes but they are generally resolved. And while the kids are in drama class, us parents sit in the next room drinking coffee and talking. We also arrange unofficial social outings for us all as families, as well as for parents only as respite.

We've found a few similar groups over the years - a swimming class a few years ago was good for difficult child 3, but we had to leave when they lost a teacher and difficult child 3's class had to shut down. Finding these isn't always easy, but talking to other people, making contact with local disability groups etc can help inform you. Sometimes these work for your child, sometimes they don't. But what is really important here is the networking you can find. Also, your child gets to meet with other kids like him/her, and this can boost their confidence - "hey, it's not just me, there are others like me, so it's not my fault after all".

Keep us posted on how you get on.

Marg

 

[krittengirl]

To give a little more background to clarify:
All my children are full biological siblings

13yr old daughter Aspergers, Adhd, has received PT, Occupational Therapist (OT), speech, Counseling, & medications and seems to be doing better the older she gets

11yr old daughter -mild ADD, bed wetting issues, classic airhead type, fairly typical for age

7yr old daughter -the one i wrote about -I forgot to mention that she does have bed wetting issues and fine motor skills deficiencies (about to begin Occupational Therapy to address the motor skills issues)

6yr old son -very bright, well adjusted, and social - no concerns

We do have sleep apnea that runs in our family, but my daughter has not exhibited any symptoms of this. I don't think that her trouble waking is due to lack of sleep/rest because it does not matter if she sleeps for 8 hours or 12 hours, she still has the same trouble waking & being tired. I have wondered if any of the behaviors are sleep related, but have not had a sleep study done mostly because we would have to travel to go to a pediatric sleep specialist. None of the sleep specialists around here will work on someone younger than 13. If it was worth it I would do it, but no one has really suggested to me before that it could make a difference.

As far as if I think her diagnosis is right, it seems close, but still seems like something is missing. Maybe it's just me wanting a thread to tie it all together -I don't know. With my 12 year old when we got her diagnosis of Aspergers it was like "wow, yeah, this really explains everything", but my 7 year olds diagnosis has not given me that same feeling.

 

[emotionallybankrupt]

I agree with the others who have said that if your gut feeling is that something else needs evaluation, it would probably be a good idea. Sometimes--as in the case of my easy child--you never find a thread to tie it together; in her case the doctors even say there is simply not a diagnosis that is a match for her. We've gone the distance with evaluation, though, and while the "I don't know" is not a comfortable stopping point, I'd rather have that than a false diagnosis. Many doctors tend to hang a diagnosis on the label that is the closest fit rather than to say we have no label. In her case, though, I've made a peace with the mystery and the "I don't know" answer--probably because her improvement has been so amazing. Despite all the evaluation she's had, I'd be likely to keep digging if things weren't going so well.

In your case, I'm particularly curious about the fact that you know what would be involved to have a sleep study for her. That makes me think you have been suspicious enough to gather information. Whether or not anybody else thinks it would have value, if YOU think it is warranted, it would be worth it to check that one off the list if the travel is feasible for you. I think that a sleep study is usually a one-time event (or 2-time if sleep apea--which it sounds like you know all about). I do know that if a sleep disorder is present, and is diagnosed and effectively treated, it can be a wonderful thing.

 

[Marguerite]

We have three Pervasive Developmental Disorder (PDD) kids and each is very different. You could still have a Pervasive Developmental Disorder (PDD) link between your kids, but different forms of it.

In our case, difficult child 1 is Aspie - no history of language delay, but very withdrawn, very needy, very clingy. Can't mentally multi-task.

difficult child 3 - very outgoing, loves people. Significant language delay. Evidence of some subtle stimming. Hyperlexic - reading words, numbers and sheet music as a toddler. Amazing problem-solving skills - we couldn't lock him out of anywhere, he would find the key and get in. Couldn't even password-protect the computer, he found a way to get around that too. Only stopped because we threatened we would have the electricity shut off for a week if he did it again. Diagnosis - autism, high-functioning.

easy child 2/difficult child 2 -obsessive-compulsive. Hyperlexic. Sensory Integration Disorder (SID) issues (as with difficult child 3). Highly intelligent and aggravating with it. Diagnosis - ADD with some Asperger's traits. We don't think the diagnosis is quite right but she's too old now to fully pin down to an Aspie diagnosis and frankly, it no longer really matters.

A note for you - the smarter they are, the more difficult it is to pinpoint a diagnosis, especially as they get older. When very young it's also difficult. There seems to be a window of opportunity for diagnosis which varies from child to child based on the severity of their symptoms vs their intelligence. Too young, and the diagnosis gets missed. Too old, and they have adapted to mask it (but it is still an issue, it's beneath the surface always). Finding that window is tricky.

Good luck!

Marg

 

[GoingNorth]

Marg is right, and I'm speaking as a person on the AS spectrum who was only diagnosed in my early forties, and that with a family history of AS ranging from children who were institutionalized to people who were "odd or eccentric".

As high-functioning AS people mature, many of them learn to "fake it", and the older they get, the better they get at it.

tdocs and some psychiatrists can pick it up with me, but the typical person I meet on the street tends to write my oddities off as my just being a bit of a hyper-intelligent "nerd" with some strange points of view.

I was lucky to get into IT before I was twenty and did well there until the bi-polar kicked in several years back. By the time I got outsourced for the last time, there were simply no jobs for older IT people with twenty years of experience.

husband had a brother on the AS spectrum as well, and in all honesty, he covered my buns for me for most of my working life.

 

[Marguerite]

They're not deliberately faking it, either - it's just that ALL of us, as we grow, learn social skills. People with Pervasive Developmental Disorder (PDD) are really bad at learning social skills and need to find a different way to learn. But EVERYBODY moves towards "fitting in" in whatever way we can. it's instinctive. You're in high school, all the other girls are wearing blue headbands and so you pester your mother to buy you a blue headband too. It's more complex than that, but over time we learn which fork to use, how to use a table napkin, how to ask nicely for something, how to greet people. We watch other people and observe their successful interactions and copy their example. We do this without thinking. The autistic person often has to have their attention drawn to this and shown (or modelled) how to do it, but the motivation is always there at some level.

But to a large extent, they're still faking it, and often feel like frauds because they know they're 'bunging on' a veneer of civilisation, because it is what society expects. But if they had to stop and analyse (as adults) how they manage to blend in, it would be difficult.

Temple Grandin's first book (I think it was her first) was called, "an Anthropologist on Mars" because she feels like an alien observing human behaviour, always the alien but becoming quite an expert in how humans behave.

Interestingly, difficult child 1 is also fascinated with animal behaviour, as is Temple Grandin. difficult child 3 too will often ask about various animals, "Why did it do that?"
He is trying to use animals as a simple model of human behaviour, to understand the link between thought and action. Such knowledge will help his own social skills - I do believe this is why the more high-functioning autistics are often interested in animal behaviour. Bot my boys are remarkable mimics ad they use this to teach themselves to mimic normal human behaviour. It makes people react to them in a more friendly way, and this reinforces such behaviour and they do it all the more.

GoingNorth, have you found yourself over the years taking special interest in animal behaviour?

Marg

 

[GoingNorth]

Marg, absolutely. I have spent hours and hours observing horses in herd environments at places where I kept mine. I have observed and had dogs all my life, and I learned an awful lot about me and others from running a cattery for many years.

I also am fascinated by primates since so much of their behaviors and motivations so closely mimic ours--we're just "nicer" about it, LoL.

I've trained dogs and horses and even some of my cats. I'd love to be able to observe birds and rodents in natural colony environments but my allergies prevent that.

I was also a stallion groom for several years both here and in Germany (where they thought it was highly inappropriate for a female to handle entire male horses) and worked with "my boys" in hand-breeding, herd breeding, and even artifial insemination environments.

I really pity most stallions as the poor things are kept in such an artificial environment, and even "natural cover" doesn't allow for the days long courtship rituals that are natural to the species. The boys beome terribly neurotic and interestingly, many of them develop steriotypical behaviours such as circling or weaving in their stalls, or chewing things, or even mutlilating themselves.

There's an uncanny similarity between these stereotypies and stimming behaviours in humans with ASDs

 

[Hound dog]

My opinion? If difficult child has not previously seen a neurologist to rule out anything specifically neuro going on.....it most likely isn't a bad idea to have that done. Then at least you will have no more worries in that area.

My son Travis with Pervasive Developmental Disorder (PDD) was treated by a neuro for his Pervasive Developmental Disorder (PDD) tourettes and epilepsy. The neuro specialized with the autism spectrum. Since autism spectrum tends to be neurobiological in nature (regardless of cause) in my opinion it's just not a bad idea to have them checked out in that area to be certain nothing is being overlooked. And with difficult child having some issues with fine motor skills....well, if it were my difficult child I'd have to have it checked.

Each kid on the spectrum is unique. Travis did not do well on medications. So we found other ways to deal with his issues. He didn't seem to do worse because we chose not to medicate. We just had to be creative.

Hugs

 

[Marguerite]

That's a point, Daisylover.

In yesterday's paper (Australia) there was an obituary for Kim Peek, who was the inspiration for Dustin Hoffman's character in "Rain Man". They didn't find out until later in life, but he actually had a problem with his corpus callosum not developing properly. He was functionally autistic, but due to a brain defect, a physical problem that could be identified.

A neurologist can ensure such things are identified. But for most kids with Pervasive Developmental Disorder (PDD) in some form (or even suspected), a neurologist is not likely to be much help long-term. Unless he's an exception to the rule.

Marg