Son to be tested for PDD/ASD but I am a little confused....

Mary - posted on 02/02/2011 ( 16 moms have responded )

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I am a little confused still at this point. My son is 5 y/o, and shows many signs/symptoms of PDD/ASD. I actually have a few questions that I am wondering about. First of all, my son has had 2 EEG's done, the first one they said there was some movement on the EEG (guessing it wasn't normal movement), and on the second EEG they stated nothing showed abnormally, but the problem with the 2nd EEG was that a nurse had given him someone elses medication and he became instantly lethargic, and seemed as if he was totally out of it. How can they call that test accurate and rule out any problems? He was just recently on the MHU (mental health unit) for his ADHD from Jan 9, 2011-Jan 19, 2011, and the staff stated they didn't see any signs of PDD/ASD. I think it's because they were not watching him 24/7. I do have an upcoming meeting with a psychologist to discuss my sons problem areas from birth to now, and then a testing date will be scheduled for him to be tested for PDD/ASD. My question is what type of testing do they normally do for a 5 y/o in this area? Also, my son did not start exhibiting any of the signs till he was close to 2 1/2 years old. I am so confused & worried about him. Any advice or help with my questions would be greatly appreciated!

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Theresa - posted on 02/08/2011

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Hi Mary! I was studying genetic variations in brain development that cause Autism in Oxford several years back. Please see this article: http://www.bbc.co.uk/health/physical_hea... . It in lay terms accurately describes the septrum (variation in symptoms and degree of symptoms) of Autism, which is why it more recently is referred to as ASD (Autism Spectrum Disorder), as well as Aspergers. It also addresses your concern of the EEG and why your son received one, as many children who do have autism are susceptible to seizures which would be detected during an EEG function test. I hope you find it useful and perhaps get some answers to your questions.

All the best x

Chasity - posted on 02/08/2011

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I was told that there are signs the doctors will check for that are going to be there for sure with children with autism , some signs of autism believe it or not are normal for some kids even when they are not autistic. My daughter was diagnosed after being watched for 3 days in 2 hr intervals..given MRI and urine and blood test to eliminate anything else.

Danielle - posted on 02/08/2011

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We went to a pediatric developmental clinic. Our son was evaluated by the doctor a psychiatrist several counselors and. Other type therapists.in my experience an EEG would not be helpful to either diagnose or rule out anything in the asd spectrum. It has never even been suggested for our son.there is no TRUE medical test to diagnose these conditions, only to rule out other conditions. Diagnosis of asd is made based on observation and other psychological methods. Hang in there. We were so distraught when our son was diagnosed but support groups and talking to others really helps.

Vicki - posted on 02/06/2011

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hi we had our middle son tested for autism at a autism disorder center down here in southern IL. The testing is free and they have thearpys there for treatment. There should be some in your area that you can try. As for the hospital giving him someone elses medication try to find another lawyer. That was a clear case of malpractice.

Jennifer - posted on 02/03/2011

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hello Mary my daughter is 2 years old i took her to a development specialty pediatric he did a MRI on her brain blood work to check her chrome-zones and a hearing check to check her waves, everything came back normal on all her results as know i am getting a second opinion on her diagnose because i don't think has all the signs of the autism, i think she is more ADAH she is extremely active and busy she does have signs of sensory integration and she is very sensitive, she does have speech delay too, she is getting ready to start her occupational therapy as well as speech therapy, i hope this helps you sincerely Jennifer!

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Alisha - posted on 02/09/2011

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I live around the same area you do and my son has been diagnosed with ASD...I went to illinois masonic in chicago..I too have a state medical card. I loved the people there they were very understanding and I met with a phycologist and she makes a decison to have your child tested for ASD or you take a different route and have testing done for other things..the testing was 2 visits and 2 hrs each visit..they looked at everything I said and looked at my son in every direction and I know you said you don't have a licence..the train takes you to the subway and the subway is right next to the building..very little walking distance..it is loud so my son wore his ear phones to block out the noise so we didn't have that issue..I hope this helps and I wish you the best of luck

Mary - posted on 02/08/2011

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Hi Danielle~
We don't even have a pediatric developmental clinic around here. Well there is sorta one, but they charge an arm & a leg to just do like OT & stuff. They don't do any testing at all. I am hoping that when the 2 psychologists that observe him & whatever psychological testing they are going to do on him in March will @ least give me some answers. It's hard for me to even try to find any type of support groups other than online because as of right now I have to get my license back...thx 2 my ex husband not having insurance...but it makes it hard to get around to support groups with me having a ruptured disc because of the pain & my leg. So that's why I pretty much try to get all the support I can from talking to others in a group type like this, and some friends online that have children with PDD/ASD.
As far as the EEG the only thing that I am aware of that it does show is abnormal or normal brain waves. Those can be caused by many things, so in my eyes they are pretty inconclusive to any disorder (psychological). Thanks Danielle for replying and for giving me that bit of hope knowing I am not alone with this!

Mary - posted on 02/07/2011

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Faith~

Thank you so much for your reply. I had my son up at childrens memorial last year, and they were the ones (in the ER) that suspected PDD. Although they didn't do anything they did give me some info on what they felt he was dealing with. My son did have some psychological testing done @ school, and in the testing it stated he was severely developmentally delayed. He was a little over 4 at the time, and his results turned out that of a 1 1/2 - 3 y/o in all areas. I think that the psychologist that I am going to talk to tomorrow about him is going to do the full psychological testing on him with the sensory integration testing. When he was hospitalized at a hospital up north ( a well known one) the OT specialist gave me a form to fill out regarding his sensory areas, and it came back that he does have sensory problems very bad. She suggested that he receive OT at least 2x per week once he was released from their MHU, but unfortunately like I stated; there isn't much here that will take his state medical card.
As far as the school, oh my gracious..they denied to pay for the testing & will not accomodate to get him back to school as of yet. I have a meeting there on Wed. the 9th to discuss the transportation issue with the Superintendent, Principal, OT, Social Worker, Special Ed Coordinator, and his teacher. He has an IEP in place, so my advocate stated that he should be accomodated in any way possible. But the school & bus company think differently because we live so close to the school, and because it is just pre-k. Well I believe different, so I talked to the Superintendent & told him I would like a meeting. He was glad that I contacted him again & agreed about the meeting. So we will see how that goes on Wed. I will know more about the full psych testing tomorrow afternoon.
Thank you again for your help & sharing your information!

Mary

Faith - posted on 02/06/2011

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Like you, I live in an area that does not have many options as far as pediatric doctors. I found the childrens hospital to be the most helpful. I have to travel two hours each way but the quality of care can not be matched elsewhere. I would recomend that you find a childrens hospital and have your child scheduled for a FULL psychological evaluation. A good psychologist will be able to give you a good diagnosis and not just rule in or out one disorder. Our psychologist did extensive testing and observations to give the final diagnosis. Many children with ASD have comorbid conditions so knowing that our children would be tested for ANY disorders rather than one gave us peace of mind. Our kids did not have blood test or MRI's just the psychological tesing. Have you asked your sons school to do psychological testing? The school may be a good resource as well since they will pay for the testing and make accomodations for your child if they do meet the criteria for a disability. Good Luck

Mary - posted on 02/06/2011

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Hi Vicki~

thank you so much for replying to my post. I am gonna try to locate a place somewhere here. I know someone told me to try Champaign/Urbana area, but that's a ways south of me. I am near Kankakee & for being a big town (kankakee that is) there truly isn't much help here for children. I know that the psychologist that I am to take him to hopefully 2 weeks after I go for the initial meeting on Tuesday (the 8th) that the psychologist will do the proper testing. Although, the advocate that I work with told me he will for sure test for sensory integration, but what about the ASD itself is what I want to know about. I get so frustrated because I have been dealing with trying my hardest to help him for the past few years, and there is no help around here. I had him in Rush up in Chicago & that's the hospital that did the med mix-up. They were supposed to have done the testing there, but their excuse was that the psychologist that does the testing was too busy! Ughh nothing but frustration when you are trying to get your child help! Thank you again for your reply. !!!

Mary - posted on 02/04/2011

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Hi Jennifer~

I am so worried about him because most of the time he bounces from being in a fog so to speak & then bouncing back to other areas of ASD/PDD. I know that in school he was receiving OT & Speech because he is severely developmentally delayed. In most areas he is like a 2-3 yr old. That was as of the testing last March. They have not even suggest an MRI or anything else (His psychiatrist or MD). I know that he had blood work done, but it was just the routine blood work that everyone has. I do not understand why they are not listening to me & getting these tests ordered. I know his Psychiatrist believes he has PDD, but trying to get the answers is a joke in this state.
As far as the malpractice ..I contacted an attorney that handled my case when I lost 4 of my children to the state (no i didn't get them back..long story...but should have gotten them back according to her). So I am truly to the point of not knowing where to turn. I don't know if another attorney here would take the case or not. Especially with me having a limited income of just Social Security. I just worry that the medication did something & I can't pinpoint it nor do I have proof. The hospital said it was Ritalin, which he is on now, but how high of a dose i have no clue! I truly do not like Ritalin because of the effects it can have on a childs body. I feel like I am running in circles most of the time with his behaviors & the way he reacts to things.
Thanks so much for your encouraging words!

Jennifer - posted on 02/03/2011

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As for the attorney not taking your case call a different attorney out side of your area or even in another state cause that is considered malpractice.

Mary - posted on 02/03/2011

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Katherine~

That's what they kinda told me about the EEG is that it shows certain brain activity. On the area of him getting another kids meds. I was beyond ticked. I called an attorney & they said i couldn't do anything because it didn't do any long lasting damage to him. Yeah well I would say different because he has not acted the same since then, and further more that could have been a malpractice suit against the nurse & hospital. It's a well known hospital in Chicago, IL, so I guess that's why they get away w/everything.
I am gonna take him to the psychologist & have that area of testing done for the sensory integration. After that I am hoping to find a neurologist that will take him. Thanks for your reply & and 4 agreeing that the EEG shouldn't have been used as an accurate result.

Katherine - posted on 02/02/2011

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They can now tell, from what I have read, certain brain activity with an EEG. The thing that needs to be addressed immediately is that he was given someone else's meds!

You are right, that would NOT be an accurate representation based on that. I would be furious. I agree with Jen, take him somewhere else.

Mary - posted on 02/02/2011

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Jen~ I am still not sure as to why they were using an EEG to test for PDD/ASD. That is why I got even more confused. I know that one of the hospitals he was in last year had stated that he needed to see a neurologist to make sure there were no problems, but with his state medical card it is hard to find one that will take a child his age for this type of problem. As far as the EEG they had stated to me that it would show if there was any seizures as well while he was sleeping. I know that he has had blood work done, but I can almost guarantee those 2 tests were not involved. He has yet to have a Urine test; except for when he was dehydrated. I will check into this, and see if I can find someone in that area that can talk to me or see him. Thank you so much for your reply. I am truly worried about him because he exhibits a lot of the PDD/ASD signs!

Jen - posted on 02/02/2011

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You should probably go see a pediatric developmentalist or pediatric neurologist. There's a lot of different kinds of testing that they can do, but the EEG would not test for PDD/ASD. Also, when our daughter was diagnosed, we had an MRI done to be sure there wasn't structural brain damage. The EEG was to determine if she was having petit mal seizures. She wasn't, and her MRI was normal. But she did have/does have autism. The pediatric neurologist made the call after checking for mitochondrial disease (blood and urine tests) and watching our daughter interact with us and with him for two hours.

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