new dx-pdd

Karen d, I’m feeling for you and your boyo and so this post is abit emotional — sorry! But take heart — things WILL get better than they have been, you will get a handle on what helps him and ‘this, too shall pass!’

I have many times debated the ‘label’ question on this forum, other forums, and in ‘real’ life. My personal philosophies are far from the school model of ‘normal’ vs ‘exceptional’ in that I believe ALL children are exceptional, and also that we as a society often do a pretty CRAPPY job of giving our children ‘what they need’. While I realize we MUST have labels to identify coping/remediation strategies, to obtain services, to short-cut explanations of why kids are ‘different’, these labels do NOT define our children.

As humans, we have learned alot since we crawled out of the primordial ooze, but we DON’T have it all down yet — just look at how the labels themselves have changed over the last few years!!! (SILLY human race!)

Any learning/behaviour/cognitive disorder is NOT like DIABETES…not a clear-cut disorder with a clear cut solution. Whatever is ‘different’ about your kid or mine, it is not an easy-to-dx ‘one cause fits all symptoms’ disorder like a defective pancreas! (as the granddaughter of a woman who happened to live through the ‘whiskey cure’, which was one of the quackeries given to juvenile diabetics in -pre-insulin days, I like to remember that many people thought insulin was a load of garbage at first also — I’m glad great-grandma bought Dr. Banting’s snake oil, though!)

What came first — the power (I call that spirit the “Creator’) of the universe that created the miracle of your darling boy, or a psych who thinks he knows more than that great Creator (whatever you may conceive him/her/it/them to be)? The Creator gave you your kiddo — the label was made up by fallible human beings! The Labelmaker, and the Label, are NOT infallible — and could change as often as you change psychs! THIS to me says that, while the investigation and label-for-services was essential, it is NOT necessarily the ‘end all, be all’ and therefore must be limited in it’s use…(Sorry, rant will stop now! But remember that many respected authorities agree with me…!)

My point is: I DON’T think you need to ‘share’ this label with anyone, especially the family and especially the previous generation! I have recently been reading that the PDD label is very subjective, as is Aspergers, and unless it HELPS your kiddo get understanding, I would just keep the new stuff to yourself. ADHD and LD will do fine for one little boy, I think!

Now, if you need to explain some ‘new’ behaviour — maybe you could say, ‘yes, DS’s anxiety has been a problem lately, and we’re working on it with his psych.’ If they need more and you wish to share it, you could say, ‘yes the anxiety is part of the ADHD and LD’. Cuz for lots of kids, IT IS!!! These labels should contain all the necessary power to get him what he needs, especially at school and in social situations. The other labels may inform you and your psych(s) and doctors — that is the ONLY reason they have any value. Use them carefully…

Hopefully others more knowledgable and less radical will jump in with their opinions…but please don’t worry, just keep on working on his troubles one by one. I’m wishing you could jump forward to his bright future — it would help you now, I know. His future WILL be bright — cuz you’ll help him build it — just remember that! ‘You’ll See It When You Believe It’ (Wayne Dyer) — it’s more complicated than that, but it IS essentially true!
love,
lizzybee

I find late diagnosis of PDD very questionable. This is a diagnosis that should be made at a much, much earlier age and it should evidence itself in such a way that even the most love-blinded parent could recognize that something is wrong with the child. I have heard psychs refer to PDD as a “garbage diagnosis,” while others say it is a label attached to any child with two of something. For others, PDD is another way of saying not severe autism. This is a diagnosis that totally disorients parents of older children in whom they have never seen evidence of anything as serious as autism. And well it should, because it never, never should happen that the PDD label should be attached to a child over 6 or so that is not somewhat obviously totally out of sync with his peers. Making it even worse, PDD is not even a helpful label for addressing remediation or getting other assistance.

In your position, I would totally grill whoever made this diagnosis on why it was made. It seems totally, totally off-base for a child who has many friends and behaves well at school as you say. Perhaps he or she can convince you that you have been totally blind to obvious problems. But barring that, I would reject this diagnosis or at least get a second opinion, this time from a neurologist. It appears that the OCD pushed the psychiatrist into make this dx. Personal view—that’s ridiculous—children suddenly come down with OCD all the time. It has nothing to do with PDD (even though kids with autistic like tendencies do engage in certain repetitive behaviors that can be similar to some OCD children exhibit). Google to see the work of Dr. Susan Swedo of the NIH in this regard.

Also you have to consider the possibility that the OCD was actually brought on by the Concerta as that and tics are possible side effects. I am not sure whether these side effects usually subside after stopping the medication—you may want to research this. But if so, think about this: you have a child with ADHD and language issues. You put him on Concerta, he comes down with OCD and now the doctor decides all of a sudden at 9 years old he must have PDD due to the OCD. Pretty ridiculous conclusion if, as could be the case, the OCD is a side effect of the drug. Many doctors are reluctant to attribute new symptoms to drugs and so they end up giving ever spiralling dxes as new drugs are added to take of the new problems, which are often just a result of the previous drugs. I am perhaps overly cynical in my views, but remember you (not any doctor) are the only one for whom the best interests of your child are the highest priority.

My further advice—do not broadcast this diagnosis to anyone, especially the school. Many schools getting a PDD diagnosis totally write off the child and do not work diligently to remediate because to them a PDD diagnosis is more than ample reason for the child to not progress at all. Plus, of course and this is my bet, he probably does not have it at all.

I’ve never heard that OCD can be precipitated by stimulants. Could you give a link to some information on that point?

Doreen

Aargh—I knew I had read a number of times that tics and OCD can result from stimulants. Tics are well known and so the OCD seemed logical because it often involves the same part of the brain. I’ve done a search for references I remembered, and all I can find come from a site called ritalindeath.com. Not exactly an unbiased source. Now I’m wondering if this was ultimately the source of the information.

Still, you should know that adhd and ocd are often co-morbid—BUT this does not point to PDD. While my ds has taken drugs for OCD, this would not have been my preferred route in retrospect. Prozac can have a lot of undesirable side effects (it did for my ds) and, had I known about it at that time, I would have gone the route of cognitive behavior therapy first, which is a standard of care for OCD and need not involve drugs. I’d also research the possibility of OCD as an autoimmune reaction—typically arising from a strep infection. This was the case of my ds. This is where Susan Swedo’s work is very helpful.

>anxious, becoming upset about things ending (ex mothers day won’t come for another year, oh no!!- crying, obsessing about things such as not wanting his bandaid to ever come off). This obsessing is new to him, although he has always been somewhat irritable/ high strung over certain things.

Well for what I know about PDD (and I should being one), that it does not come on suddenly. Kids and adults with PDD/AS have obsessions or perhaps self stimulation or interests that are like passions, and they may change— but they don’t suddenly show up.

>Started him on prozac 10mg and discontinued the concerta. He has many friends, behaves well in school- the anxiety is just shown at home.

That would NOT be at all typical of a PDD kid. In fact, PDD kids do NOT make friends easily, do not usually have friends unless they are really lucky. Behavior in school may be horrendous or outstanding, but friends I think that’s a key.

OTOH, anxiety, while common is not a requirement. The anxiety may be just that he feels safe enough at home to let it out, as you say.
I am not one to feel everything is the evil medications, but yet I wonder in this case if the meds are partially to blame. Or perhaps he reacted poorly to concerta. The PDR (physicians desk reference) is full of possible side effects. You should perhaps talk to a pharmicist and the doctor if you trust him on this.

>My questions what is difference between pdd and aspergers? How could this have just been dx now? I worry for his future, what it will hold.. Can he have a happy life? Who do I tell and how? Even my parents (elderly) would freak out, they know of the ADD and LD just leave at that?

Well the difference is that AS is always PDD but PDD is not always AS. PDd is sort of an umbrella term for a spectrum of disorders including classical autism. But it involves things like poor eye contact, not understanding gestures/body language; poor relations with others; lack of typical empathy (I’d say it is present but not typical); sensitivity to light/touch/sound/smell; obsessions that would be persistant, self stim, and/or overriding interest in one topic; difficulty using language or unusual prosody, voice tone, etc, etc.

AS people tend to be thought of as a bit more of the “little professor” type, talk about a single topic, kids with AS begin with normal language
at least unless apparently. Perhaps the good doc means PDD-NOS (not otherwise specified) which can mean mild signs of PDD or not all PDD symptoms. And while what you describe could be PDD symptoms, it would seem he would need some of the social characteristics.

While it doesn’t exactly sound like your kid really has PDD, yes people with PDD can have a good life, independence, etc. I drive a car, own my house, have two cats and a dog and am working on my tutoring business.
I know of married couples with two AS members and many men with AS do marry. Most people would think I am odd or eccentric but not really abnormal. Most people with PDD eventually develop empathy, etc.

Others don’t fare as well, I would guess not as good supports, lower intelligence, lack of stimulation, etc.

Still since I don’t see what the dx is based on— I wouldn’t think about it too much. If you have doubts go to this page:
 
http://www.udel.edu/bkirby/asperger/

She has PDD links etc…

>Thanks, Karen

I don’t agree with someone who said that PDD is a catch dx of a waste basket dx., and believe it could even be underdxed. but it would make sense that some doctors do not understand and do overdx it.

The other thing to remember is that any of these dxes are not exactly like diabetes, etc where you really have to have something that shows up in the blood. But they are a group of characteristics that some people share to a greater or lesser extent. Does he really have enough of these? If he did, you might right now be upset and angry, but eventually it would make sense and it would make sense to the child as well.
In that way it would be freeing.

—des

Des,
I guess I differ with you—in the recent past there seems to have been a trend toward over dxing PDD usually with NOS affixed [italics here] in older children. If a child has autism, call it that—then the parents will have some clue as to what to do. If the child has aspergers—ditto. I just don’t think PDD gives any useful information when dx’ed in the older child, particularly someone as old as nine. And it almost always is interpreted to mean autism anyway. PDD is perhaps appropriate as an interim dx in younger children (under five) that have some delays but where is not clear whether they will resolve themselves relatively quickly or lead to something else that can be named more specifically.

Also in reviewing your list of PDD symptoms, this child has two of them—pre-existing language problems and persistent (although newly evidenced) obsessions. I really think Doreen should be looking into whether the psych she saw was one of those who ascribe to the two of anything=PDD school of diagnosis.

I am not an expert in this area, just a mother who went through a similar journey of vexing doubts as Doreen as a result of a careless psych. Which also led to delays in getting the real help my ds needed. So I am a little passionate about this misdx thing. Something similar happened to someone who used to post here, Lulu. But unlike me she made the ftal error of telling the school the dx and was faced with immediate writeoff of her child. You may be perfectly comfortable at the stage you are in at this point of your life to say all AS is PDD, and more power to you. But, while I would never tell a school that my child had PDD, I would tell them about an AS dx if I felt it was an appropriate one because schools are far less likely to interpret an AS dx as meaning the child has no prospects so why bother with any interventions.

Actually my child was on Concerta and began having SEVERE OCD symptoms! He was taken off stimulants for 2 yrs. and started on imipramine and Strattera. We are now back on stimulants. Don’t know if he will be able to take it or not since this is just the 3rd day. Still on the other meds too. Though the drug co. won’t necessarily list OCD as a side effect, they do list anxiety and from what the psychiatrist told us that is where OCD comes from. The person being anxious. Jan

For an “outside the box” way of looking at your son’s behaviors, check out the web site of the Handle Institute, www.handle.org.

Psychiatrists, psychologists, etc are very good at labeling and prescribing medications, but they don’t always get it right. There are other ways to evaluate and treat anxiety and learning issues.

ADHD medications can cause tics and obsessive behaviors in some people.

Linda W.

>Des,
I guess I differ with you—in the recent past there seems to have been a trend toward over dxing PDD usually with NOS affixed [italics here] in

Perhaps you have seen more of this trend then I have??

>older children. If a child has autism, call it that—then the parents will have some clue as to what to do. If the child has aspergers—ditto. I just don’t think PDD gives any useful information when dx’ed in the older

Well there are kids for whom autism isn’t exactly appropriate and neither is AS, yet they do have some characteristics. What do you say about them? Maybe you would say that just give them the AS dx. I don’t know— the whole spectrum thing caught the world by surprise and they have no idea what to do! Maybe just use the terms high, med and low functioning and put it at that.

> And it almost always is interpreted to mean autism anyway. PDD is perhaps appropriate as an interim dx in younger children (under five) that have some delays but where is not clear whether they will resolve themselves relatively quickly or lead to something else that can be named more specifically.

What about someone who is older who does have these characteristics.

>Also in reviewing your list of PDD symptoms, this child has two of them—pre-existing language problems and persistent (although newly evidenced) obsessions.

Yes but they are the wrong two, imo. Anyway I don’t find two of them very convincing. The social characteristics are the key here. IMO, the list only works if you also do the part of the dx that says “rule out”, rule out
anxiety disorder, ocd, ADHD/ADD. Then there is the medication response. I wished he had dealt with that a bit more directly.
Anyway it was 2 out of 6-8 I think. And the obsessions were persistant alright but not exactly long term in terms of the kid’s entire life.

>I am not an expert in this area, just a mother who went through a similar journey of vexing doubts as Doreen as a result of a careless psych. Which also led to delays in getting the real help my ds needed. So I am a little passionate about this misdx thing.

>Well I had a real bad misdx thign going in my own life.
comfortable at the stage you are in at this point of your life to say all AS is PDD, and more power to you. But, while I would never tell a school that my child had PDD, I would tell them about an AS dx if I felt it was an appropriate one because schools are far less likely to interpret an AS dx as meaning the child has no prospects so why bother with any interventions.

This part of the problem I didn’t address. I have seen schools not able to handle the AS part either, so I think the real problem here is the inability of the schools to understand the whole spectrum of autism.

As for her particular case, I would NOT tell the school as I don’t think that it sounds like if fits the particular kid. That’s why I gave the link. So she could make that determination on her own. IMO, it doesn’t sound like it.
If there isn’t anything to gain, like how to explain some particuarly puzzling kid, and only has some negatives then I don’t see any point in bringing it up. It still doesn’t sound to me like a real PDD kid. So maybe you are correct in your claim that it is overdxed. At least I think it safe to say that I’ll bet *this* doctor overdxes it!!

—des

Linda and Jan,
Good to know my memory on the OCD side-effect hadn’t failed me. I was sure I’d read it somewhere from a reliable source. But I must say giving anxiety as a side-effect without specifying OCD seems pretty misleading. It’s pretty easy for a parent to think a little anxiety is not a big deal and manageable if it helps with the ADHD, but they would be less likely to think that about OCD. Also confirms my hard-earned experience—when something new and disturbing comes up, suspect the medication first. And I am not anti-med, just very wary after having been through so many bad side-effects with my ds.

Des, I fear I came on a bit strong. My ds got a misdx of PDD based on the same two symptoms as Doreen’s child. Lulu’s had language and one other symptom. And I recall Anitya or someone similar on these boards saying she had noticed an increase of kids coming through the schools with this dx when they didn’t seem too different from kids she sees without this dx. Plus I had a psychologist friend at the time who told me PDD was becoming a sort of fashionable dx assinged to a child that had two of something. (This was six years ago or so.)

My son’s dx came in early June and I remember that summer well. I looked all over the internet (which I had never used before) looking for PDD info and it all came up with autism. I looked on their forums and came to the conclusion they were not talking about the type of child mine was. But I had nothing else to go on and had to wait several months before we could get an opening at another doctor to get a second opinion. So I went out and bought a book about autism and woke up every night for nearly three months at 2:00 in the morning. Unable to sleep, I would go out on my porch and read this book, thinking how on earth could I have missed this in my child in the six years before he had his eighth birthday (because the book said this showed up age 2, or 3 at the latest). At this point ds was in full-blown tics and OCD (brought on we were to find later by an autoimmune reaction to a strep infection). He couldn’t go more than 20 seconds without a tic (stereotypic gestures according to the psych, reprimanding me for using the word tic). He even tic while he slept.

In these early morning hours questions kept going through my mind that I had no answers to. How could this totally beseiged child have been lurking beneath my sweet ds all these years and I didn’t know? Did the doctor really know something I was too self-deluded and love blind to see? What would be his future? How could my I and my husband, who is older, ensure someone could always take of him. Could he stay in his school? Would he have to go away? Would he get even worse? But just six months ago he was fine—how could this so stealthily creep up on us and take over our lives? And on and on until 6 or so when perhaps I could catch a half hour or so of fitful sleep. Every night was like this all summer long.

The distress and anxiety in addition to the day to day coping with my ds’s illness was near unbearable. The psychs who so casually toss out dxes like this and then blithely check out to leave the parent to pick up the pieces are in my book seriously negligent. A PDD NOS misdx is a form of parental cruelty and torture. When we finally, after a long, long time, got a decent daignosis, we could begin the long path to doing things that would help him. Today he is nearly 14 and about 99.9% recovered from his illness. But I really, really wish we hadn’t been made to take that detour down that PDD misdx. That is why when a post like Doreen’s come along I tend to get a little passionate—I don’t want anyone to have to go through what I did so needlessly.

>Des, I fear I came on a bit strong. My ds got a misdx of PDD based on the same two symptoms as Doreen’s child. Lulu’s had language and one other symptom. And I recall Anitya or someone similar on these boards

Well understandable. I think of misdx is a pretty evil thing. It has happened to me and I believe it did me damage that lasted years and years. Also prevented the real problem from being treated.

I very much feel that that Doreen’s child is misdxed. I have the instinct about that, I could be wrong.

>without this dx. Plus I had a psychologist friend at the time who told me PDD was becoming a sort of fashionable dx assinged to a child that had two of something. (This was six years ago or so.)

I am willing to admit this could be the case. I honestly have seen the reverse of when the dx could not be made.
But whatever, I don’t think 2 of these traits would be enough, unless they were some of the social characteristics (for example, difficulty with relationships and understanding body language say). The whole PDD/ autism thing, well that’s what it is all about. If it starts being about anxiety, OCD, ADHD well then we start not even talkign the same language. Who would these kids be anyway? What would we do for them, etc.?

>My son’s dx came in early June and I remember that summer well. I looked all over the internet (which I had never used before) looking for PDD info and it all came up with autism. I looked on their forums and

Well that much has changed anyway. Look it up now. That’s why I gave the link to basically say, do you see your child in this? If you don’t then that’s not what it is.

>pieces are in my book seriously negligent. A PDD NOS misdx is a form of parental cruelty and torture. When we finally, after a long, long time, got a decent daignosis, we could begin the long path to doing things that would help him. Today he is nearly 14 and about 99.9% recovered from his illness. But I really, really wish we hadn’t been made to take that detour down that PDD misdx. That is why when a post like Doreen’s come along I tend to get a little passionate—I don’t want anyone to have to go through what I did so needlessly.

I’m of the opinion that many such misdxes would be torture and equally cruel. I don’t know if we can really compare suffering. I guess I reacted more to saying that the dx should not be used. I know children and young adults who very well fit this dx. that it was in the end a source of some comfort to know that they and their kids were not going insane. That there was an explanation, etc. These kids do NOT fit the AS dx— they have early language delay, some have delays in early self care. However they would not be classically autistic. To misdx these kids calling them MR, spoiled, or whatever they get called is equally cruel.

I have to say I have not the greatest faith in the medical profession to understand what they are really saying to parents (or others), and how what they say can change people in a negative way.

So I think actually we agree more than we disagree in reality. I think the parent here should really look into the medication question (perhaps her kid will get better thru a change in medication alone). I would be doctor shopping if I were in her shoes. (Maybe ask here for recommendations??) I think a bad dx can lead to a lot of other problems and I don’t know that I would personally stay with him. Unless she looks on the excellent site that I recommended and sees that he fits this in other ways, which I doubt.

—des

[quote=”Anonymous”]I’ve never heard that OCD can be precipitated by stimulants. Could you give a link to some information on that point?

Doreen[/quote]

Oh, there are many, many people, professionals, MDs, and even psychologists who believe stimulants can and do cause a whole bunch of side effects (that result in kids taking several different meds at the same time to control the symptoms - pretty scary).

I’ve read a number of books and papers on this, but the two I can remember of the top of my head are:

1) The Ritalin Fact Book - by Peter R. Breggin, MD - this book is pretty out there and is extremely against the use of stimulants (some of the stuff in the book you have to a take with a grain of salt)

2) Is your Child’s Brain Starving?: Food not drugs for life and learning - by Michael R. Lyon, MD - this book is all about the use of food and supplements in managing AD/HD

I am sure there are other sources that could help with this.

Just one other thing – have you ever looked into the Feingold diet? For some people (my family included) it works great in managing AD/HD (especially the hyperactivity, moodiness, defiance).

Good luck,

Rubby

Sorry, Rubby, but I don’t consider Peter Breggin a reliable source of information. I’d rather hear from a less biased source on the subject. I don’t doubt the experience of the person who posted that her child developed ADHD symptoms on stimulants, but I was interested in hearing about any studies showing the OCD effect over a large population of children with ADHD. In other words, I’m looking for information that the side effect is common enough for most people to worry about. There are all kinds of reactions that all kinds of people might have to particular medications, but it is helpful to know whether the risk of a particular effect is great or infinitesimally small and what are the factors that influence when it is likely to occur. I do think that anxiety might be an important link, like one person suggested, but I was hoping to see a link to some kind of article or study that showed how they are linked.

Doreen

Doreen,
I didn’t exactly find a study on stimulants and OCD, but I did find some interesting observations on brainplace.com, which is run by a Dr. Amen, who has spent a lot of time studying and treating ADD, tics and OCD.

There used to be several posters on this board who quoted from Dr. Amen’s work extensively. In any case, he is a practicing doctor who has worked extensively with these disorders, so I think his observations are worth something. The cite below also gives an explanation as to why stimulatants can result in OCD symptoms.

I found this cite by plugging in “basal ganglia” +tics +ocd in Google, because the basal ganglia is implicated in all three disorders. You may be able to find more; this was the first in the the Google list.

The cite:

Gilles de la Tourette’s Syndrome (TS)

TS is a very interesting disorder that provides the bridge between the basal ganglia and two seemingly opposite disorders, attention deficit disorder (ADD) and obsessive-compulsive disorder (OCD). TS is characterized by both motor and vocal tics lasting more than a year. Motor tics are involuntary physical movements such as eye blinking, head jerking, shoulder shrugging and arm or leg jerking. Vocal tics typically involve making involuntary noises such as coughing, puffing, blowing, barking and sometimes swearing (corprolalia). TS runs in families and there have been several genetic abnormalities found in the dopamine family of genes. SPECT studies, by my clinic and others, have found abnormalities in the basal ganglia of the brain. One of the most fascinating parts of TS is that there is a high association between TS and both ADD and OCD. It is estimated that 60% of people with TS have ADD and 50% of people with TS have OCD. On the surface it would appear that these are opposite disorders. People with ADD have trouble paying attention, while people with OCD pay too much attention to their negative thoughts (obsessions) or behaviors (compulsions). In looking further at both ADD and OCD patients clinically, I have found a high association of each disease in each other’s family histories. So, for example, people with ADD often have relatives with OCD-like features and people with OCD have people in their families with ADD. There is even a subtype of ADD that has been termed overfocused ADD of people who have both symptoms of inattention and overfocus.

A crash course in the neurotransmitters (chemical messengers which help the brain to function) dopamine and serotonin is necessary here. In the brain there tends to be a balancing mechanism between dopamine and serotonin. This balance tends to be tipped in the basal ganglia. Dopamine is involved with motor movements, motivation, attention span and setting the body’s idle. Serotonin is more involved with mood control, shifting attention and cognitive flexibility. When something is done to the brain to raise dopamine levels serotonin becomes less effective; and when serotonin levels are raised, dopamine becomes less effective. For example, when I give someone a psychostimulant to treat ADD, it works by effectively raising the availability of dopamine in the basal ganglia. This helps with focus, follow through and motivation. If I give them too much they may become obsessive, moody and inflexible (symptoms of too little serotonin). Likewise, if I give someone who has ADD a medication that enhances serotonin availability in the brain, such as Prozac (a selective serotonin reuptake inhibitor) their ADD symptoms are likely to become worse, and they won’t care they are worse (lowered motivation).

Since the basal ganglia is involved with dopamine production (low in ADD); shifting and suppressing motor movements (lack of smoothness or cogwheeling may result in tics); and has been found to be overactive in OCD (in conjunction with the cingulate gyrus) the basal ganglia are likely significantly involved in all three of these disorders. Blocking dopamine, with certain antipsychotic medications, such as Haldol and Orap, helps to suppress tics but make ADD symptoms worse. Psychostimulants, such as Ritalin, Dexedrine or Adderall, help ADD symptoms, but have a variable effect on tics (they may make them better or worse). In addition, as mentioned, psychostimulants tend to exacerbate OCD symptoms and cause people to focus more on the thoughts or behaviors that bother them. An interference mechanism in the basal ganglia is likely to be part of the picture, upsetting the dopamine-serotonin balance in the brain.

Hope this helps,
mariedc

Hi Karen,

Considering the various diagnoses I’d be really skeptical. That is, I’d want to get the detailed test results and follow up on the net to try and get a better handle on what the underlying LDs are. PDD is a vague term used for stuff the clinician just doesn’t understand. Best book is probably Melvin D. Levine “Developmental Variation and Learning Disorders”.

If the doctor won’t share the data with you, just have him send it to the school, and then get it from there - the school is obligated to share EVERYTHING in your child’s file with you!!!!

I find it impossible to believe your child has Aspergers Syndrome - I think you’re searching - get some solid data (just trying to help).

If your son is particularly anxious, I’d look for a behavioral cause - have you asked him about things that might be upsetting to him? You might be amazed at what you learn!!!! Pick a time when he’s really relaexed and feeling ok, then ask him to think about what might be bothering him.

I would not tell gramma/grampa, or anyone else for that matter. Its pointless - It can’t help your child, it can only color his/her relationship with the adults. Also, the labels are destructive to a child.

I hope this helps. I too feel for your agony….