Need help getting a diagnosis - 4 1/2 year old boy

Shallcoco - posted on 09/16/2011 ( 5 moms have responded )

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My best friend's son is 4 1/2. He is a really sweet and intelligent boy. He knows his days of the week, months, colors and seasons. He can count to 100 with few mistakes, and he is starting to be able to read three letter words and sometimes four letter words. He is also starting to be interested in adding and subtracting by using his fingers. However, he has some quirks that seem to point to a potential problem or issue, but she has not been able to get a solid diagnosis for him. He didn't have any speech by the age of 2, and he started with a speech therapist at 2 1/2. His speech improved, and he was referred to a preschool at age 3 for slight developmental delays. Once he got into the preschool, he was diagnosed with Auditory Receptive Disorder. Currently, he is in his second year at the preschool and is doing well. His parents have been unable to get him potty trained so far - he does use the toilet to pee, but only has bowel movements in a pull-up. He knows when he has to go, and will ask for a pull-up. He did poop on the toilet twice at age 2, but he has never been willing to do it again. They have tried everything; the sticker method, rewarding with toys or treats - they tried every possible suggestion out of three different books over the last 2 1/2 years, but nothing has worked. At one point, they tried saying that there were no more pull-ups, and he held his bowels for days at a time, even with fiber drinks, etc. At the doctor's suggestion, they have not been too pushy with him about it for fear that it will make the situation worse. It seems as though he finds some sort of comfort with the pull-up. He also has a hard time explaining things. If he is holding is stomach like it hurts and you ask him what's wrong, he will say "There's something in my belly. A hundred things." He seems to place a lot of emphasis on numbers. He will say, "what number is your muscles?," or "what number is your toy?" The bigger numbers are better, and he is very competitive about it. He wants to be bigger, stronger, taller, faster, etc., and he describes it with bigger numbers. He also asks questions that he already knows the answers to - "What means like?" or "What means I don't care?" He seems to get obsessed with things and will talk about the same subject or repeat the same phrases over and over for an entire day. Recently on a long car trip, he sang the same two lines from a song for one hour without stopping or taking a break. He also mocks or imitates characters that likes; it's almost as though he becomes that character, and he will say that he is them. He is also very focused on girly things. He likes pink, glitter, dolls, butterflies, etc., to the point that it seems like an obsession. He says he wants to be a girl, and he will put things on his head (towel, etc.) to imitate long hair. He used to sing in a really odd way; not using words, just different sounds, but he has stopped doing this. He still sings out loud (but using real songs/words) all the time. At home, in the car, at the store. He has been hushed on the school bus by the other kids for singing. Usually, he seems to get stuck on one song, and he will sing it for a long time. He also repeats things to himself under his breath. Sometimes it's something that you just said to him that day, and sometimes it's something he heard weeks or months ago. He also doesn't seem focused at times, and he never stops moving. He has difficulty following two step directions, and the pediatrician said it seems like he has an "internal distraction." He had an evaluation today, and it seemed very thorough. However, the doctor said that it looks like OCD. My friend is not happy with this diagnosis, and I agree with her. It seems like there are a lot of little quirks that all stem from one issue, but they are not getting diagnosed together - speech delay at 2, auditory receptive disorder at 3 and now OCD at 4. Does this sound familiar to anyone? She has gone through the school, the pediatrician, and now the children's hospital for a diagnosis, but it doesn't seem like anyone can put their finger on it. The doctor today said she initially thought PDD after reading the questionairres completed by my friend and her husband, but changed her mind after talking to their son. I feel like he is getting symptoms diagnosed instead of the underlying issue! Does this sound like it could be something on the Autism spectrum?

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Katherine - posted on 09/20/2011

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Mine is Autistic and OCD and ADHD... He sounds VERY similar!! Pull-ups. songs and all!! The "bowel hoarding" (holding your poop) is still a minor issue... and they are good in not making a big deal about it. let him have the pull up (we did till 5) we DID however made him learn to clean himself up properly after - or ask for help. sound to me lik he needs a full diagnosis by a child psycologist - Public schools can do this as well. and in a few years.... it will be really just a little thing... it just feels really HUGE now cause we all want a "normal, healthy" kid... 2 books Raising your spirited child - by Mary Kurcinca. and Look at me in the eye by John Elder Robinson.

Diane - posted on 09/20/2011

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BTW, Our son didn't potty train until we got his yeast under control. His DAN Doctor did a full panel of testing (bloodwork, urine and stool analysis), which showed he had heavy yeast and bacterial infestation. He could not potty train because he could not feel the urge to act before it was too late. He also had chronic diarrhea for TWO years. The pediatrician said that was normal for autism. All I can say is that if I had chronic diarrhea for two years, I'd be pretty darn cranky too. We treated the symptoms (antifungals plus probiotics to treat yeast), and within five months, his yeast was completely gone, and he was potty trained within a week.

Potty Training: http://www.tacanow.org/family-resources/...

Poop Page: http://www.tacanow.org/family-resources/...

Diane - posted on 09/20/2011

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I have spoken at TACA's Autism Journey Seminars on "What's in a Diagnosis?" and implementing a Gluten-Free, Casien-Free (Dairy-free) Diet. I jokingly define PDD as Pediatrician Did Not Decide, as the term qualifies the child for very little way of services, and helps no one but the funding source. The TACA website has much info that may help:

Suspect Autism: http://www.tacanow.org/family-resources/...

My son was diagnosed with mild-to-moderate autism back in 2001, just before his third birthday. At that time he was nonverbal, significantly delayed in all areas of development, and tantrummed on average of 4-6 hours in combined episodes. He has had much intervention over the past ten years including diet, biomedical support under the care of his DAN Doctor (Defeat Autism Now), and several years of ABA therapy early on, until he was able to mainstream into a typical classroom placement. He is now in 7th grade, just brought home his first report card - All A's, and can't wait to try out for the school's Basketball Team. He is living proof that Autism is Treatable, and Recovery is possible for many kids. He is not yet recovered, but he is doing amazing well, and I have no doubt he will be a tax payer and raise a family of his own.

Tania - posted on 09/16/2011

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hi there , i know this is very frustrating ...i went through the same thing . i have a son with aspergers and also a son with tourettes .
i suggest you goto a psyciatrist and he will send him off for some cognitive assesments and rate him on a autism scale . aspergers usually have results that are both high and low ...by this i mean maybe low in commom sense and reading for example and high in coding or maths they are very up and down . so asperers is high funtioning . his symptoms to sound like my youngest as he repeats things over and over but he has tourettes but he also ticks and twiches all day both body and vocally , but with tourettes ocd can come with it ...he also has sensory issue as well so tags on clothes putting on his socks etc , whereas my son with aspergers well he does not and he also toilet trained himself so did my yougest . but all children with aspergers , autism or even tourettes are never the same . well i hope this may help a little , just maybe try psyciatrist and get some cognitive testing done . best of luck

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