(posted in another forum too) Has your ds or dd ever been misdiagnosed??

712 Views 13 Replies 8 Participants Last post by pilesoflaundry, Jun 18, 2004

bumpersmom

Discussion Starter · Jun 15, 2004

I joined this forum so that I could ask this question:

My ds was two this year. I KNOW there is something wrong with him. I think it's autism, because I used to work with a woman who had an autistic son and mine acts the same way he did. I'd call her but she moved away. I took my boy to the pediatrician who said he was just fine. My boy's behavior got worst, so I took him to a neurologist. She said he was just fine too. I want to believe them but.......he's not. I come from a big family. I'm the oldest of seven. I know what a regular kid looks like, and he's not like that. Have any of you been misdiagnosed (your kids ) ? What did you do? My husband says, they must be right--two doctors can't be wrong. I think he's wrong.

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melaniewb

· #2 · Jun 16, 2004

Hi, and welcome to MDC!

My DS hasn't had an inaccurate diagnosis that I am aware of, but I know it can happen often, unfortunately. If you truly believe there is something wrong with your son, especially if you are suspecting Autism Spectrum Disorder, then you should be persistent in getting help.

May I ask what signs of autism that your son is exhibiting?

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MamaMonica

· #3 · Jun 16, 2004

My sister had doctors tell her my nephew was just fine but she knew something was wrong and had a long road of taking charge to get a diagnosis of Asperger's syndrome- on the autism spectrum.

Be persistent and good luck.

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bumpersmom

Discussion Starter · #4 · Jun 16, 2004

My son picks up pieces of paper and plays with the corners (flipping), spins the wheels of toy cars, and lets sand run through his fingers. He hardly eats anymore, he almost lives on juice and crackers. He's skinny. He is a joy but he is hyper.
My friend's son used to do the same thing with magazine pages that my son does with pieces of paper. He was skinny too. He was hyper, and very much a joy to be around.

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applejuice

· #5 · Jun 16, 2004

When my youngest DS was seven months old, he had a rash and a fever. He was completely breastfed, and I suspected measles/roseola.

I took him to the doctor, and I saw the rotating intern, not the regular doctor.

The rotating intern diagnosed it as a "skin rash caused by a fever"; duh! did you went to medical school to diagnose things that way?

DS was too young for the MMR. When I saw the regular doctor, I was happy to get my suspected diagnosis - mild roseola.

The same thing happened to my niece. She was eleven months old and she had roseola, again too young for the MMR, and she was misdiagnosed at first. When my sister took her DD to a more experience doctor, she got her diagnosis.

I hope your little boy is fine. You may have to go out of town or out of the state to get the diagnosis you want. Doctors tend to work in groups and think the same way in the same area. Good luck. Sounds like you are going to have to advocate hard for your little guy for a while.

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melaniewb

· #6 · Jun 17, 2004

Quote:

Originally Posted by bumpersmom
My son picks up pieces of paper and plays with the corners (flipping), spins the wheels of toy cars, and lets sand run through his fingers. He hardly eats anymore, he almost lives on juice and crackers. He's skinny. He is a joy but he is hyper.
My friend's son used to do the same thing with magazine pages that my son does with pieces of paper. He was skinny too. He was hyper, and very much a joy to be around.

Well, some of these things are "normal" for his age. Does he always just spin the car wheels or does he play with cars the "normal" way, too? I had concerns about me son as well when he started spinning car wheels and had a fascination with light switches. He seems to be over the light switch thing, but still spins wheels. But, he also plays with cars by driving them around too. My Ped told me not to be concerned unless DS ONLY wants to spin wheels.

Also, how is he socially? Does he respond well to you? Does he interact with you and want you to see things he is interested in? Will he let you read to him or bring you books to read to him?

Certainly, you know your child and his behavior better than anyone else. And, if you think he has a form of autism, then do keep pressing the issue with the Dr. Be very persistent!!!

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bumpersmom

Discussion Starter · #7 · Jun 17, 2004

You'd have to see him to know why I think he has autism. I taught preschool for five years and never saw one child act like my son. It's not normal behavior. It's like he is, it's so hard to put into words. He's seperated by something in his mind. His presence is markedly different from the other children I have known, all except my friend's son. This is so painful. It is like a part of him is lost in his own world, even though he gives me kisses and loves his poppy. Even then something is missing.

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melaniewb

· #8 · Jun 17, 2004

Quote:

Originally Posted by bumpersmom
You'd have to see him to know why I think he has autism. I taught preschool for five years and never saw one child act like my son. It's not normal behavior. It's like he is, it's so hard to put into words. He's seperated by something in his mind. His presence is markedly different from the other children I have known, all except my friend's son. This is so painful. It is like a part of him is lost in his own world, even though he gives me kisses and loves his poppy. Even then something is missing.

Well, like I said, you know him better than anyone. If he does truly exhibit odd behaviors and doesn't act normal, I would certainly continue to push the issue with the Dr. If your Dr won't listen, find a new one. Do you have any children's services in your area? Try them, if you do. Also, check your to see if your state offers any screenings or services. Definitely be persistent.

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MamaMonica

· #9 · Jun 17, 2004

Check out some of the Asperger's and autism spectrum discussion boards. They can hopefully point you to a good place in your area to get a diagnosis. It's often a long road to get a diagnosis- since it is something often very subtle. You need to get to the correct professionals so you can trust the diagnosis.

Many doctors and other professionals just don't get it (but many do as well- it's finding them that takes persistence).

Good luck.

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octobersweethearts

· #10 · Jun 17, 2004

Hi, I'm sorry you are having difficulty with the doctors...when you are concerned about your son, I'm sure this is extremely frustrating.

Have you considered calling your local Early Intervention Program? It might be called something else where you live, but there should be one in your area....it is a law as a part of the IDEA Act. They provide free evaluation for children ages 0-3. This might be a good place to start.

Good luck to you and your son.

Dana

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khrisday

· #11 · Jun 17, 2004

I agree that you may have to just go around the doc and have him evaluated by a good specialist.
I know many parents who were told their kids were fine when in fact they had serious problems and would have benefitted from early intervention (and were later diagnosed), but very few whose children were diagnosed with disorders the parents felt they did not actually have.

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Casual Storm

· #12 · Jun 17, 2004

I'd ask for a referral to a developmental pediatrician. Also, like the previous poster suggested, contact your county's Early Intervention Program. At least in NYS the parents can contact the agency directly and request an evaluation, without a doctor's referral. Also try finding out if there are autism support groups in your area you can contact for help and advice.

Pediatricians are notorious for the "wait and see" approach - a bad idea especially since early intervention can make such a huge difference. If you
are worried about your ds, then by all means be his best advocate.

Good Luck!

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bumpersmom

Discussion Starter · #13 · Jun 18, 2004

You've given me a lot of food for thought.

How often do children get misdiagnosed? How often are parents told their children are fine or in a phase, when their children have autism? Do pediatricians know what autism is? Why didn't the @!*#! neurologist know?
I am

and very

. How can they call themselves doctors if they don't know what they are doing?

My child is at stake. I'll look and keep looking until I find someone who can help him! No matter what my dh says!

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pilesoflaundry

· #14 · Jun 18, 2004

s I hope you figure everything out soon.

My 2nd child's eczema was misdiagnosed, I knew she had it from about 1 month old on but at first I didn't figure out what was causing it. I just knew it was eczema. I had a nurse practicioner tell me "you put that baby in the tub too much, and you need to use lotion"

: The

: didn't even ask me how often I bathed her! I was putting her in the tub only 3 x a week and putting lotion on daily.

Then she was also having chronic constipation, I had a feeling it was her forumla. Again NP kept telling me, that it's normal for babies not to poop daily. Yes I know this but she wasn't just not pooping she was screaming for her life when she did go, it was infrequent, blood in her stools and it was obviously not just a baby pooping 1x aweek. Finally switched to a ped, she did diagnose the eczema but refused to think my child had milk issues, said she's not lactose intolerant. Well I know that! I thought she had milk protein intolerance but since doc wouldn't write a note for wic I couldn't change her formula

. Also when she had vaccine reactions they tried to tell me it was something else, but after putting her through all the tests in the book they told me they couldn't find anything and then they still refused to admit it was a vax reaction. So needless to say yes my poor child has been misdiagnosed and treated like crap by docs. I tend to hate them now

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