Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Hi Just curious. How many people here have kids who were given this diagnosis? My son just turned 3 and has been evaluated by 3 different professionals. One said mild PDD (but don't even get me started on that guy), and the other 2 said that while he has some red flags bc of speech and socialization, they would not, could not diagnose him. We now know that he has apraxia and some medical issues (bacteria overgrowth, heavy metals ) that are affecting him. Anyway, just curious how typical this is of other kids with apraxia. is doing well in ST, going 3 x a week! Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Hi Kate, It happened to us with our son as well. We saw one Ped. Neuro. (whose specialty I later learned was epilepsy) who spent maybe all of 15 minutes with us, talked on his cell phone the entire time, didn't so much as say hello to my son, watched him walk/run up and down a hall and said, " Well, if I had to guess I'd say PDD-NOS. " We saw a second Ped. Neuro. who was a much nicer person, but we had a 2 hour and 15 minute wait b/4 being called back and by that time my son was in no mood to do anything but go home. He didn't want to commit without seeing him further, but said it was a concern/possibility. He sent us for an ABA consultation and the PhD there said our son didn't need ABA Therapy. We just had the most wonderful evaluation at the Communications Disorders Clinic. They (Ped. Psych., SLP and O.T.) spent over two hours with us-REALLY and we had maybe a 15 minute wait!!! Our son walked into the room and said " Hello " to each of them, walked over to a toy telephone and picked it up and made a pretend telephone call to his grandmother, " Maw Maw, Hello. How are you? Come over. Let's go outside and play games. Okay. Thank you. Bye bye. " He then picks up a play house and brings it to me and says, " Come on Mommy. Play house. " The O.T. asked him if he wanted to build something with her using the blocks and he said, " No thanks. " Needless to say, he isn't PDD-NOS and they laughed out loud when we told them we had been told it was a possibility. The went on and one with one example after another of things he was doing and saying that clearly demonstrated to them that he was not PDD-NOS. My son spoke to them using 6-8 word phrases/sentences. His vocabulary today is 1000+ words. His eye contact was phenomenal and they even commented on his personality and sense of humor. They did not agree that he has Apraxia, but they did say he had oral motor weakness. I'm awaiting their written report. I think it is probably a pretty common occurrence (children who actually have Apraxia or ADD or ADHD mistakenly being diagnosed at some point and time with PDD-NOS), but not one that everyone feels very comfortable discussing (just my opinion from reading previous posts when the topic comes up). I wish you and your son the very best. P.S. If you haven't tried Pro-EFA I highly recommend it. I started giving it to my son 4/10/03. At that time he had an 80 word vocabulary and said maybe a handful of two word phrases! I credit S.T., O.T. , preschool (and lots of love) as well. :-) -KIM [ ] Re: PDD NOS > Hi > Just curious. How many people here have kids who were given this > diagnosis? My son just turned 3 and has been evaluated by 3 > different professionals. One said mild PDD (but don't even get me > started on that guy), and the other 2 said that while he has some red > flags bc of speech and socialization, they would not, could not > diagnose him. > > We now know that he has apraxia and some medical issues (bacteria > overgrowth, heavy metals ) that are affecting him. > > Anyway, just curious how typical this is of other kids with apraxia. > is doing well in ST, going 3 x a week! > > Kate > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Hi Kate, We too received the PDD-NOS label for my son Quinn at age 2.6. Was he showing characteristics of autism? yes...but interestingly enough, once his speech started to come in with intensive speech therapy geared towards his oral motor planning problems, the characteristics seemed to drop off one by one. The diagnosis was removed a year and a half later, he is currently 6, in a regular grade one classroom, doing really, really well - all issues are resolved. Do I think he was cured of PDD? Of course not - it was definitely a misdiagnosis. The problem, I think, is that the medical professionals are not spending enough time with these kids to properly dx them - in the limited time they have to spend, they slap on the label that appears to fit and send you on your way. Had an assessment lasted longer than a few hours (a majority of that having them take history from me rather than examining him), perhaps they could have seen that a lot of the problems Quinn had were due to his intense frustration at not being able to communicate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Yea for the archives - you don't have to rewrite everything on this (as you know this came up before) Here is an archive from you in which you go a bit more in depth in your answer -and it's excellent! From: " lbwheaton " <lchase@...> Date: Wed Apr 16, 2003 11:47 am Subject: Re: FW: The best therapy/ " misdiagnosis " Hey all - adding to the small book here, and I could really write one on our experience - like I say - it's been a long road! LOL! Dx on paper that Quinn received officially: PDD-NOS at age 2.6 Other dx considered at the time: -Global Developmental Disability (In Canada, " Developmental " Delay/disorder is considered cognitive, or intellectual i.e. mentally disabled). -anxiety disorder -obsessive compulsive disorder At no time, was a speech disorder considered. I call the PDD-NOS a misdiagnosis because I knew in my gut at the time of dx that there was something not quite right about it. I did all the research on the symptoms, etc. to inform myself, and he was indeed exhibiting characteristics, but it felt wrong. Moms - you know what I mean right? My husband and I accepted the dx at the time, because we thought we may be in denial. We acknowledged that it certainly looked like a form of autism, and the characteristics were there (I look at it now and marvel at what a different kid he was). Remember that strong will I spoke of? Well Quinn was so frustrated that he couldn't talk, and there was so much in his very clever little head that he wanted to say, that he exhibited lots of behaviours. (the fact that his parents were too stupid to understand what he was trying to say with his grunts didn't help with his frustation!!) His SLP commented that he was a very angry little man. Some " classic " characteristics of an autism spectrum disorder that were exhibited: lack of speech. lack of social communication attempts. repetative type play. Consisted of lining things up. His favorite book to read was the phone book (no kidding) - he would sit for extended periods, just flipping the pages, fingers turning black from the newsprint type paper - interrupt him mid task, and look out! Very rigid in things being done the way he wanted them done. He refused to be comforted by us when upset - went stiff and cried harder if we tried to touch him. We would be banished from the room until he calmed down. Again with the " compliance " issues. Had his own agenda - didn't much care if he pleased anyone else. As posted, the first therapy we received was speech therapy. Don't get me wrong, there was nothing " easy " immediately after starting with speech therapy, but once Quinn realized that we were trying to help him, and we gave him some tools to communicate with us, the behaviours mentioned above started to drop off. Once Quinn reached the point of being understood by us approx. 70% of the time, the behaviours completely disappeared. I don't think it was a result of the EFA's because we didn't start supplementing him until March 2001 - behaviours started dropping off well before then. I believe the EFA's certainly contributed to the behaviour improvement and still supplement with results as discussed in previous posts. We believe that all these behaviours were " coping mechanisms " for his frustration. Ways to self calm. also resulting from some of his mild sensory issues and motor delays. All of the social and motor issues, were " tidied up " with the other therapies we talked about, and also helped with the addition of EFA supplementation. We believe he was misdiagnosed. Had we not gone down the intense speech therapy road initially, who knows what may have happened. I would like to say that parents should trust their instincts, since they are more often than not right. We encountered a lot of professionals that didn't listen to us because we were mere parents - I wrote an article about my frustrations that's posted at the speechville express site at the following link in this regard: http://www.speechville.com/diagnosis-destinations/apraxia/dx-article- chase.html Sorry for the long post - > (warning -this is another small book!) > > raises a good point. As Dr. Agin stated on the PBS > interview, do EFAs appear to somehow help the children's > brain " rewire " where children diagnosed with apraxia, PDD, autism, > DSI, and even various syndromes, " drop some of the symptoms of the > diagnosis " and " somehow appear to help the brain to rewire " enough > to the point where at times the origninal diagnosis is assumed to be > incorrect? Or were all the children that were diagnosed PDD, > apraxic, etc. that " just started talking " as reported > here " misdiagnosed " as believes. ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 If the 2 other drs wouldn't diagnosis him -- is the diagnosis then developmental delayed ?? I have a 2.5yr old son that we are going thru the process of evulation. My son exhibits some of the signs of autism & we are getting more testing done A child is like a butterfly in the wind, some fly faster, some fly harder but they all fly the best they can. Each one is different, each one is beautiful and each one is special. [ ] Re: PDD NOS Hi Just curious. How many people here have kids who were given this diagnosis? My son just turned 3 and has been evaluated by 3 different professionals. One said mild PDD (but don't even get me started on that guy), and the other 2 said that while he has some red flags bc of speech and socialization, they would not, could not diagnose him. We now know that he has apraxia and some medical issues (bacteria overgrowth, heavy metals ) that are affecting him. Anyway, just curious how typical this is of other kids with apraxia. is doing well in ST, going 3 x a week! Kate Quote Link to comment Share on other sites More sharing options...
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