DD had her appt. with her new therapist today

[Petie1104]

Basically, the therapist is wonderful, but she wants to rethink dd's dx of asperger's.  She says too many of the symptoms don't fit.  She says it may turn out to be PDD-NOS or even something not on the spectrum.  She thinks the previous dr. failed to evaluate all her symptoms relying only on what he saw in the office, not on what we saw at home.  She says that basically, not taking into account her learning difficulties, her language delays, or anything the school sent to him, is probably why he decided Asperger's fit.  But, considering everything that we discussed today and observing her behavior today, she is thinking POSSIBLY PDD-NOS but is more inclined to lean towards bi-polar due to the mood swings.  Though she says, kids on the spectrum can "appear" to have mood swings that are actually over stimulation and holding in their feelings until they feel safe, at which point they meltdown for apparently minor things.  So, basically, she wants dd to go through the evals again.  YUCK!!  Now we are back to the beginning again.  Anyone BTDT. 

This is our history....

ADHD with ODD and expressive and receptive language disorders.

Bipolar

ADHD with ODD possible bipolar

Asperger's

and now we're back to the looking again!!

OK, so let's see, maybe I should write a song called, "The Diagnosis Shuffle" or "Musical Dx"

Anyone know how this feels?  Tell me I'm not the only one with a child that doesn't seem to fit any ONE dx, but obviously NEEDS a dx.  I find it funny, everyone she has seen says, "Yup, definitely SOMETHING wrong, she definitely NEEDS HELP"  But everyone is confused about what exactly IS wrong.  GRRRRRR

[Emmeline II]

Well, a distinguishing feature of Asperger's is the absence of a language delay. If the previous diagnosis was made solely based on what the Dr. saw in the office, I agree that a new evaluation is in order.

Mood swings also happen with ADHD as well and for ds they largely went away when he was medicated for ADHD. I've seen this book recommended online: "The Bipolar Child" by Dimitri Papolos.

Ds' initial diagnosis was ADHD/possible ODD, but the the defiance practically disappeared on his second medication; he has gone more than two weeks without a single incident at school.

It seems that the younger the child the less likely that they will get that definitive diagnosis that remains unchanged through childhood.

[Linda on the move]

oh honey I'm sorry.

We've been through a few eval and dx's, but ours where more because my DDs symptoms seemed to changed as she aged. She's had a dx of PDD-NOS, but her current dx is Asperger's. She had speech and language delays, but she also had chronic fluid in her ears (eventually had tubes) so her last dx was made based on the thinking that the speech delays were separate from the other, bigger stuff going on with her. She also has a pretty good sense of humor, which is really unusual for someone on the spectrum.  My DD can also appear to have mood swings, but they are mostly from neutral to super unhappy, without any swings toward joy, but they are related to sensory stuff.

How old is your DD? What kind of learning problems does she have?

Where they able to do good IQ testing last time? Could they re-use some tests? My DDs dx is partly made based on the fact that her pattern of highs and lows are text book for Asperger's.

[Petie1104]

Originally Posted by Linda on the move 

oh honey I'm sorry.

We've been through a few eval and dx's, but ours where more because my DDs symptoms seemed to changed as she aged. She's had a dx of PDD-NOS, but her current dx is Asperger's. She had speech and language delays, but she also had chronic fluid in her ears (eventually had tubes) so her last dx was made based on the thinking that the speech delays were separate from the other, bigger stuff going on with her. She also has a pretty good sense of humor, which is really unusual for someone on the spectrum.  My DD can also appear to have mood swings, but they are mostly from neutral to super unhappy, without any swings toward joy, but they are related to sensory stuff.

How old is your DD? What kind of learning problems does she have?

Where they able to do good IQ testing last time? Could they re-use some tests? My DDs dx is partly made based on the fact that her pattern of highs and lows are text book for Asperger's.

DD is 7.  They IQ tested at her last eval and she had an IQ (something about a short version so it's not as accurate) of 102.  The psych told me that with the the short version there is a variance of up to 10 points, so she may have an IQ of 97 or of 107.  DD is 7 and is just now able to read a book titled Dan the Ant, it is a level 1 book with only short vowel sounds.  Her teacher is having her tested for specific learning disabilites, but we don't have the results yet.  I'm hoping they will actually redo the IQ test using a more accurate version.
 

[Emmeline II]

Perhaps you can find a place like this in your area http://www.pediatrics.uthscsa.edu/centers/hope/index.asp

Ds is being evaluated by their behavior clinic next month.

[Petie1104]

You know, the school nurse told me about a developmental pediatrician that is here in town for my 4 yr. old, but her waiting list is soooooo long.  Something like 6 months out.  I'm trying to get ds in to see her, I wonder if i can get dd's psych to give her a referral? 

[Linda on the move]

Originally Posted by Petie1104 

DD is 7.  They IQ tested at her last eval and she had an IQ (something about a short version so it's not as accurate) of 102.  The psych told me that with the the short version there is a variance of up to 10 points, so she may have an IQ of 97 or of 107.  DD is 7 and is just now able to read a book titled Dan the Ant, it is a level 1 book with only short vowel sounds.  Her teacher is having her tested for specific learning disabilites, but we don't have the results yet.  I'm hoping they will actually redo the IQ test using a more accurate version.
 

My DD's IQ was tested in 6 areas, and it was the pattern of highs and lows they were interested in, not the average. 

And I don't think that a 6 month waiting list is that bad. Nor do I think her reading sounds that unreasonable. The current push for very young children to read isn't something we need to take too seriously with our quirky kids. It's just a fad.  Reading instruction didn't used to start until kids were 7, and back then far fewer kids had problems with it!  A lot of kids, even neuro-typical kids, really aren't ready to read before then. 

(both my kids are officially gifted, one is twice exceptional and one is *just* gifted. Neither were early readers. Your DD is doing just as well as my 2E dd was doing at that age, and by the time she left elementary school, she was reading at college level)

[Emmeline II]

Originally Posted by Petie1104 

You know, the school nurse told me about a developmental pediatrician that is here in town for my 4 yr. old, but her waiting list is soooooo long.  Something like 6 months out.  I'm trying to get ds in to see her, I wonder if i can get dd's psych to give her a referral? 

We've waited 9 months for ds' appointment at that clinic. In the meantime we took ds to a psychiatrist and a therapist.

[Petie1104]

Originally Posted by Linda on the move 

Originally Posted by Petie1104 

DD is 7.  They IQ tested at her last eval and she had an IQ (something about a short version so it's not as accurate) of 102.  The psych told me that with the the short version there is a variance of up to 10 points, so she may have an IQ of 97 or of 107.  DD is 7 and is just now able to read a book titled Dan the Ant, it is a level 1 book with only short vowel sounds.  Her teacher is having her tested for specific learning disabilites, but we don't have the results yet.  I'm hoping they will actually redo the IQ test using a more accurate version.
 

My DD's IQ was tested in 6 areas, and it was the pattern of highs and lows they were interested in, not the average. 

And I don't think that a 6 month waiting list is that bad. Nor do I think her reading sounds that unreasonable. The current push for very young children to read isn't something we need to take too seriously with our quirky kids. It's just a fad.  Reading instruction didn't used to start until kids were 7, and back then far fewer kids had problems with it!  A lot of kids, even neuro-typical kids, really aren't ready to read before then. 

(both my kids are officially gifted, one is twice exceptional and one is *just* gifted. Neither were early readers. Your DD is doing just as well as my 2E dd was doing at that age, and by the time she left elementary school, she was reading at college level)

I don't know why they only gave me the average, perhaps they looked at the different scores, maybe they didn't.  I really don't know.  I just know what he told me.  DD scored 102 on a short test and there are more flaws in that than in a full test.  A 6 month waiting list might not sound bad, but when you are living day to day never knowing if you are going to face the sweet child or the child that would rather spit on you than speak to you, 6 months is a long time. 

[Petie1104]

Originally Posted by Emmeline II 

Originally Posted by Petie1104 

You know, the school nurse told me about a developmental pediatrician that is here in town for my 4 yr. old, but her waiting list is soooooo long.  Something like 6 months out.  I'm trying to get ds in to see her, I wonder if i can get dd's psych to give her a referral? 

We've waited 9 months for ds' appointment at that clinic.

I know they told me that they HOPE I can ds into there before he starts kindy.  I just don't know how long I should be willing to have dd wait to get help.  I guess as long as we can get some intermediate help along the way it wouldn't be bad.  I just think of it as 6 more months before we get any kind of help. 

[Petie1104]

Originally Posted by Linda on the move 

Originally Posted by Petie1104 

DD is 7.  They IQ tested at her last eval and she had an IQ (something about a short version so it's not as accurate) of 102.  The psych told me that with the the short version there is a variance of up to 10 points, so she may have an IQ of 97 or of 107.  DD is 7 and is just now able to read a book titled Dan the Ant, it is a level 1 book with only short vowel sounds.  Her teacher is having her tested for specific learning disabilites, but we don't have the results yet.  I'm hoping they will actually redo the IQ test using a more accurate version.
 

My DD's IQ was tested in 6 areas, and it was the pattern of highs and lows they were interested in, not the average. 

And I don't think that a 6 month waiting list is that bad. Nor do I think her reading sounds that unreasonable. The current push for very young children to read isn't something we need to take too seriously with our quirky kids. It's just a fad.  Reading instruction didn't used to start until kids were 7, and back then far fewer kids had problems with it!  A lot of kids, even neuro-typical kids, really aren't ready to read before then. 

(both my kids are officially gifted, one is twice exceptional and one is *just* gifted. Neither were early readers. Your DD is doing just as well as my 2E dd was doing at that age, and by the time she left elementary school, she was reading at college level)

I was actually angry when I first read your response.  It just frustrates me sometimes.  See, I would love for them to not push dd to do more than she is ready for.  Unfortunately, she does have to survive in a classroom that expects her to already be reading much better than she is now.  Her teacher is very concerned because the reading is only part of it.  She says the dd doesn't seem to understand instructions given in class.  If she tells the students to color things that are round blue and things that are square orange, dd will have to ask 3 or 4 times during the assignment what exactly it is she is supposed to be doing.  Then she has to have someone stand over her and ask, "is this one square or circle?"  "circle, good, ok, so does that mean we color it blue or orange", and then usually she would have to repeat that circles are colored blue.  This is what I ran into when I homeschooled her as well.  I had to be standing over her repeating everything throughout the assignment.  This means that the teacher can't hand out a worksheet for everyone to do and help anyone that needs it, she has to constantly help dd.  Reading is just where it is most obvious.  We are still having to look at her with almost every word, for instance, "ant"....

DD will look at the picture and try to guess what it says.

We remind her that she needs to read the word.

She says, "o"

we have to say, "hey, what does A say"

She says, "oh ok a"

a-t-n

"no ok remeber that the letters are in order, so say them in order."

a-n-t

"good, ok now say it all together"

tan

OK, no, listen to me say it....a-n-t

etc etc

Now we don't have to do that on every word anymore, but on alot of them we still do.

So the issue then becomes, by the time she finishes the last word she's forgotten what the first word was. 

So, while her being able to read a book seems OK, her teacher is not able to spend every minute helping dd.  Since dd needs constant one on one attention to manage to finish her work, she is constantly behind.  Her teacher thinks there is something up, there is some reason why she is having difficulty to this extent.  If I could still homeschool, that part probably wouldn't worry as much, but she does have to succeed in a school setting.  I can't homeschool her anymore.  Not only am I going to school myself, but honestly, I need that break from her. 

[Linda on the move]

Originally Posted by Petie1104 

I was actually angry when I first read your response. 

I'm sorry my post made you angry.

With your latest post, I understand much better the kind of learning problems she's having. I think it's GREAT that the school is testing for specific learning disabilities. It took a combination of school services and private services to figure out my DD.

I'm sorry both for what you are going through, and that what I posted was annoying (and I understand why it was annoying).
 

[Petie1104]

Originally Posted by Linda on the move 

Originally Posted by Petie1104 

I was actually angry when I first read your response. 

I'm sorry my post made you angry.

With your latest post, I understand much better the kind of learning problems she's having. I think it's GREAT that the school is testing for specific learning disabilities. It took a combination of school services and private services to figure out my DD.

I'm sorry both for what you are going through, and that what I posted was annoying (and I understand why it was annoying).
 

Trust me, it's not just what you wrote.  It's the looks I get on bad days when she is at her worst, mixed with the questions I get from family when they see her twice a year and only see her good side, mixed with the questions I get from parent's on the playground that could be as polite as, "you know, your dd is playing so well with my 4 yr. old, you said she is SEVEN?" to as rude as, "Why don't you just spank her when she does that?"  I'm finding that I'm getting worn and if she even has a slight understanding of what some of these people are saying, then I can imagine it makes her feel horrible.  Then I have the school who looks at me like I'm doing something wrong when I send in homework that she refused to do with a note explaining why she didn't do it (usually once she enters full blown meltdown, well that's enough homework for the night).  And your post hit at the wrong time because dd brought home a list of sight words with a note in red saying, "These are the words NECESSARY for the completion of first grade.  She ONLY knows 8.  PLEASE work with her on these".  GRRRRRRRRR.  So I think I hit frustration overload and your post just hit me at the wrong moment in time.

[Emmeline II]

Originally Posted by Petie1104 

Originally Posted by Emmeline II 

Originally Posted by Petie1104 

You know, the school nurse told me about a developmental pediatrician that is here in town for my 4 yr. old, but her waiting list is soooooo long.  Something like 6 months out.  I'm trying to get ds in to see her, I wonder if i can get dd's psych to give her a referral? 

We've waited 9 months for ds' appointment at that clinic.

I know they told me that they HOPE I can ds into there before he starts kindy.  I just don't know how long I should be willing to have dd wait to get help.  I guess as long as we can get some intermediate help along the way it wouldn't be bad.  I just think of it as 6 more months before we get any kind of help. 

We were in the same position a year ago. I started on the process to get that appointment but we did everything else I could think of in the meantime. I would get the new evals, the LD test results, then request a meeting for a 504 or an IEP meeting -- here is some info on IEP Guidlines.  Does the teacher know about her therapy and the re-eval? I know that it has been helpful for ds' school to know what we are doing privately.

[chiefmir]

I'm sorry for all the diagnosis frustration... it is definately true that the younger a child is, the harder diagnosis is and the more it is likely to shift around.

A few things jumped out at me that I just wanted to mention, in case its helpful.... first, a speech/language disorder is definately a warning sign to keep a close eye out for reading difficulties/disability later on...if your DD has an IEP already for speech, then you can ask for the IEP team to meet and bring up the idea of adding in reading goals.  We (in the school I work in) very, very often have reading goals (or even math goals,like for word problems, etc.) for kids who do not have a diagnosed reading disability but do have reading difficulties likely related to their speech/language issues.

Also, if your DD doesn't have an IEP now, but the process has been started (even, I believe, if she has been brought up at a special ed meeting as a child to keep an eye on) then your daughter can not be left back from being promoted from this grade.  Basically, if there is any concern about a learning disability (or other IEP "worthy" condition) then a child can not be made to reapeat a grade (and should not even be a candidate for discussion of retention) until evaluation results decide if the student qualifies for learing support or not.  IF your DD does have an IEP, she can't have to repeat a grade for failing to be at grade level (though she would be able to be retained for other reasons- such as attendance, etc.)

Good luck- it must be so frustrating.

[let the light in]

I hear your frustration. Yes, certainly, BTDT. I think a lot of children with similar difficulties go through this before finally hitting on a diagnosis that seems to fit best (and none ever seems perfect it seems)

A couple things, first, it may that your DD has elements of several "diagnoses." Most of these things seem to cluster very closely together- for example- autism spectrum is closely associated with mood disorders- they frequently occur together. I like to think of these things as "baskets of disorders" and thats how i describe them to some of my patients- I'm a family nurse practitioner. I remember well that frustration in searching for a diagnosis- my son is now 15 and I knew something was wrong at age two. He has been diagnosed with, in order, Sensory Integration Disorder, Tourettes, AHDH, ODD, Asperger's, PDD-NOS, and Mood disorder, NOS.  What do I really think is going on? He's on the spectrum for sure- and I guess PDD-NOS is what "fits" But of course thats just the diagnosis you get that means, "on spectrum, somewhere..." when nothing else fits the DSM criteria. And certainly he has a mood disorder. Psychiatrists are loath to diagnose Bipolar in kids- there are no well established criteria to go by- but we know that it probably does appear in childhood. That said, I'm with your new therapist- that the meltdowns that happen in a kiddo who holds it together all day and then finds something inconsequential to melt down over- because of a lot of things- trouble expressing self, sensory overload, autism spectrum which just leaves the child confused and scared and defensive all day trying to figure out the world...it can look a lot like bipolar.  Its very hard to figure out. And not easy to be patient. I remember feeling like, if we could just get a diagnosis then we'll know how to approach this. It took me many years to get used to being okay with just treating the symptoms without having a name for it just yet. And I did learn some things: 1) Floor time/Play therapy (Stanley Greenspan) is tried and true and works for so many childhood problems. 2) Its okay to try medication (this is just what I finally came to, you'll decide for yourself- but I resisted for many years and probably should have tried sooner, especially for the mood instability. 3) That said, meds arent a panacea. 4) Therapy works! It takes a long time! It's expensive! 5) I shouldnt have isolated my family when things got tough. People can be harsh when they dont understand kids with special needs- sometimes we tend to just close the door and think "better if I just handle this myself" Better, actually to stay connected, and if the neighbors don't understand the meltdowns in the driveway, its their problem.

To sum up- yeah this is really, really common, this alphabet soup of diagnoses before you figure out whats going on. Its a process and kids are a moving target they change every day. I wish you strength and peace and love. And here's my bit of hope for you: I look back to when my son was your age and think, "that was one rough time." But it got better as he grew and matured.

Best wishes,

Angie