Very confused!!! Please HELP!

Tonya - posted on 06/12/2011 ( 25 moms have responded )

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I have a 4 year old (5 in 2 months) son and i've always felt something could be wrong. I have started having him tested and this is what they came up with...sensory intergration disorder, ADHD, insomnia. He was tested for speech and this is what they said.. speech defect distrbance, speech delay and expressive-receptive language disorder.He is about 2 years behind in all test. I just got results from IQ testing and he said the test was invalied because he could not understand my son enough and my son didnt understand what was being asked of him. He also said it sounded like it could be PDD? What does all this mean??? Thank you for any help or ideas on what my next move shoud be.

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SomeRandomMother - posted on 06/13/2011

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Some of the testing isn't very accurate until kids are older and professionals can get a better read on their strengths and challenges. Be patient, work with what you know and educate yourself on the different approaches, treatments and programs that have been successful with other children. Visit your local library, read up on PDD and start working within that diagnosis to help your son understand his world.

You have to become the expert on your own child ... it sounds like a big job but you CAN do it!

Lois - posted on 06/22/2011

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Yes do use the school districts and what they offer and check into what is available through your state.

Lois - posted on 06/22/2011

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I love the comment that Barbara Saker said "Remember to take Good care of yourself" VERY good advice!! Do not forget that! If you are not well then your family is not well. Thank you Barbara! Good advice for everyone with Children of all ages!

Rachael - posted on 06/16/2011

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I think all of us can relate to that moment when you are given an "idea" of what you are in for and hit google searching for answers and in many ways I think that most of our answers came from groups like this and people we met and have hung onto along the way that made sence and helped us in those "low" moments and days. I had a son who at 10 months I knew something was wrong... I started speech sessions, early learning programs, mothers group who were a wonderful accepting bunch or women and you definately will become the most knowledgable on your own child through this journey. Remember this is a journey... Each day at a time... Good days and bad.... There are highs and lows and those first 6 years were my hardest but as you get your own head around it and the confidence to ask the right questions at the right time and with the right professionals it will all come together. Right now you need to surround yourself with positive and "supportive" people who will ride out this period with you and not criticize you for the decisions you make and respect you on the ones you do meke. You wont make any of them lightly. In those early days I went and saw a Naturopath who got me started on a regime that "some" of it continues today and included vitamin e for the darkness under his eyes, potassium and magnesium. The best thing I got onto was Melatonin that we still use today to help him sleep. I had allergy testing done and rulled out all those things that would make him ill in this regard and as far as drugs are concerned.... Lots of people have opinions on this and to be honest this has nothing to do with anyone but you and your family. You do what is right for you and your child. It may not be life long, it may be. Either way when you make a decision to either use drugs or not to this is completely up to you. I started my son on risperidal when he was 4 and we have not looked back although at the time I was beside myself with worry and concern about all the things you can read on this and any drug you may or may not put your child on. For us it worked and it does for many others. Don't think you are on your own you will find strengh when you need it, sometimes from complete strangers!! Thinking of you.

Barbara - posted on 06/14/2011

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Hello Tonya; Our youngest son has had all of these symptoms and diagnosis over the years. He is now 34 years old. I know that you are overwhelmed with all of this. You may even feel a bit frightened and wonder if you will be able to deal with all of this correctly. You are not alone for most of us have had those same feelings. Remember to take good care of yourself too.

There is one other thing that I would like to share with you to hopefully avoid what I consider the biggest mistake I have ever made concerning our son. Don't give your child drugs! There are a lot of other options available! As young as your child is, there is still a small chance of reversing the disorders.
Also, some research that I was reading the other night concerned thyroid. Check to see if your child has circles under the eyes, a puffy face, and a swollen tongue. Does your childs hair look limp and lifeless? All of these can be symptoms of an inactive thyroid. Many children who were diagnosed with ADHD or PDD had an inactive thyroid. And the tests that most all doctors run do not pick this up. Email me at barb.john@att.net if you want more information of how we got rid of all of the drugs, kept our son off of all drugs, and saw marked improvements.
Our prayers go with you.

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Lana - posted on 07/14/2011

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Your son sounds quite bit like my 4yo daughter also 5 in 3 months. She has unclear speech has some sensory problems overly friendly and some very wild mood swings. Our Pead. has said that she is showing signs of Aspergers Syndrome but until she starts school a formal diagnosis cant be made until she starts school at the start of next year. Aspergers is an ASD Autism Spectrum Disorder and is set about as a high functioning ASD. I dont know if this will help you any but i thought it worth putting it to you

Devin - posted on 07/13/2011

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I have no idea what any of that means but it sounds like a second opinion wouldn't be a bad idea. If you're having him tested the people doing the testing should make sure you fully understand what's going on. If they're not going to explain it on a level that you understand, find another professional who will. Good luck, I hope you find the answers you're looking for!

[deleted account]

Tonya, I haven't read every post. I have a son who is 8, and was diagnosed with PDD-Autism that's worse than PDD. He's doing great. It's important that you get "intensive early intervention." Since you are under age 5, you're doing well by anyone's standard. You need to start therapy now though.

You don't need a diagnosis to get therapy, but it can help. In addition to Autism Speaks, I would recomend you attend a TACA (Talk About Curing Autism) meeting in your area. See the TACA website: http://www.tacanow.org/

The daughter of the founders of Autism Speaks eventually switched to the biomedical therapies which TACA advocates. TACA also can give you a support group and assign a mentor to help you evaluate who the best doctors and other therapists are in your area. Most chapters are in CA, but there are new ones popping up all over.

The diagnosis must come from either a developmental pediatrician, a neurologist, or a clinical psychologist specializing in developmentatl disorders. Nobody else is qualified to give the DX.

"Intensive" means at least 15 hours a week. 20 to 25 is preferred. Much of this can be done by you - once you learn how to do it.

Thomasine - posted on 06/22/2011

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You are welcome , as you can imagine We are very proud of him , evauation to see if he can learn to drive is comming up soon , Please if you will say a prayer for him and me too as he crosses this bridge....Glad you son is doing well, :)

Lois - posted on 06/22/2011

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Thank you Tomasine! Your post made me smile!! It has been hard to slowly let go of my son as he is in high school, I still feel/want to smother him and not let anything bad happen to him. SO to hear that your son is in college and wants to work with special ed is wonderful! Thank you!

Lois - posted on 06/22/2011

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Racheal Shotter Awesome! Melatonin is a great suggestion! I have a friend who son has Aspergers and has trouble sleeping and he is a sophmore and he has been using it since he was little.

Lois - posted on 06/22/2011

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Hang in there!!!! It sounds like you are doing better then you feel or think! My son Jeremy is now 15yrs old and he was diagnosis ed when he was in 6th grade with Aspergers . His Freshman yr of high school he had all A's and was involved in cross country,swimming and track and he is driving!! He has been a blessing and he has taught me to set goals and to see not just black and white, but also the gray/ in between areas. He has been on an Individual Education Plan since he was three and I cannot thank the school system here in Kansas enough. Has your son been put on and IEP with the school that he is going to start in? Please check into what is available in the school and talk and help teach them about your child. I would not worry about the IQ test, your son probably knows more, just cannot explain, or make the doctor understand what he know do to the speech. That will come with speech therapy. I would also check your son's eyes and make sure he is seeing properly and that he is healthy. My son was 1st diagnosis with ADHD and then we found out he was seeing double,this was causing the ADHD symptoms and had to have eye therapy to help teach his muscles. This made him 1 1/2 yrs behind in his reading which caused him to behind in most things. But he will be in 10th grade and doing 10th grade work. After having my son and dealing with all that comes with having a child with many needs I'm a FIRM Believer in being your childs advocate! Even if your child does not have so many extra needs. Your are the 1st teacher to your child and you know your child best,teach others about him and enjoy him! Everyday even when you are ready to pull your hair out, look,search for those small achievements and show others those things! You are both learning how to help your child understand and work with his needs. Keep learning and enjoying him! Have you in my thoughts and prayers!

Tonya - posted on 06/17/2011

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My son has seen several different doctors so far and each gave me their list of disorders that he has and he was referred us to have a IQ test done and I got a copy of the results mailed to me and in that report was the mention of PDD. I had never heard of it and waiting on our appointment day to talk it over with his doctor. I have talked to all the doctors and asked every question I could think of and I understand (for the most part) what the disorders mean. I just thought until I could talk to his doctor that I would research it myself and ask advise from people who knew first hand what was happening and unfolding in our life. Just from what everyone has told me I've made a list of questions to ask when we go to the appointment. Thanks everyone for all your help and kind words.

Flavia - posted on 06/17/2011

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this sounds like you need to ask your Dr. to help you understand what it all means.

Thomasine - posted on 06/16/2011

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Tonya
My son was dignosed with Aspbgers syndrome at age 16 , he had speech theropy from the time he was 3 until he started High School , I spent so much time worrying ....about how he would do , after he grew up , ...he now is starting his 3rd year of college....you son will need a lot of TLC.....some pepole will not undrerstand what you are going threw.... once you did out for sure what the problem is at least you will know what you are dealing with , one thing that I learned from my son is to never give up ...he is very perstant...I just waned you to know that some times thing can turn out better than you ever thought possible.....I am so PROUD of my so for all the things that he has done...he wants to help kids in specail education in some way when he completes college ... Just wanted you to know that the future , thing can turn out for the best , there is a reson for eveything.... wishing you all the best !

Tonya - posted on 06/16/2011

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Oh my goodness thank you all so very much!! I would love any info I could get. I am going to email both of you today.You really dont know what your kind words and help mean to me. Thank you so much!!!

Tonya - posted on 06/16/2011

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Oh my goodness thank you all so very much!! I would love any info I could get. I am going to email both of you today.You really dont know what your kind words and help mean to me. Thank you so much!!!

Lorraine - posted on 06/15/2011

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just to let you know. my son didn't start talking in sentences until he was 5. he didn't understand what people were asking him and was generally an odd child. at the age of 7 he was diagnosed as having asperger syndrome. but since the age of 11 he has progressed so much he now has no special help at school and you would hardly know there was anything different with him. don't give up hope. i was distraught for years about him. now i'm just so proud of him.

Pamela - posted on 06/15/2011

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Stay calm, as I read this I can feel your scared. Just like I was 8 years ago. My son has a very strong speech delay which in result cause he delays in school. please send me your personal email here is mine magaleata@gmail.com and I will send you my phone number and help you. It is ok everything will be Ok.

[deleted account]

my son has the same condition and is still undergoing significant tests which they said could take some more time, but hopefully he will be finalised with them by the end of the year.
the tests they conduct is to see just where on the Autism Spectrum line he is. PDD-nos is on the spectrum and PDD is just a lable and nothing to fear too much. It tells you that he is able to function in life, and is not too far on the spectrum. He is in between autism and ashburgers and this is a good thing. My son has the same medical condition with sensory, speech, repetition etc. these things are all issues which can drive a person into confusion etc, but there is also help out there that can help with both you to cope and your son. My son attends Norparrin run through early intervention and I would like to suggest that you look into early intervention as they can guide you through to the right places for your son and help you and you hubby to cope better. since my son has attended Norparrin, he has improved, there are still loads of concerns for us, but we are getting the help required and they have been helpful.
your paediatrition will also discuss your options and what is in store for you and your family. the best thing you can do is learn as much about your sons conditios from experts and get into an early intervention course. the maternal nurse/health sister or your doctor can help to refer you to these places to help you save money. it is expensive doing it through other places where in early intervention they get all the help for like $85-$100 a school term, plus they have all the recommended people there to help you eg. a teacher, occupational therapist, speech therapist, allied health worker and a aid/assistant that helps in all areas. they enourage the kids to do ranges of activities and prepare the child for school etc which benefits you and the child. they also have parent to workers chats while the others analysis the child and their capabilities inside, just so they know what to work on etc. Before you know it, your little on will come round and you will notice a really big change in him. the best thing for you to do right now is to get into early intervention in your area and discuss your concerns etc, they will direct you to the perfect place for you to attend. some attend twice a week and others like my son in Norparrin is once a week during the school term. You will benefit best with this option then waiting and doing nothing... worth a look into believe me.

DeDe - posted on 06/14/2011

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You may want to check out the following website: http://www.ninds.nih.gov/disorders/pdd/p... What it means basically is that you may want to check with your state to see if they offer any assistance with therapies, respite and habilitation services. For now...not to worry. If you are really confused, after reading the information on the website, sit down and chat with your primary care physican.

My son was born with a degenerative disorder. I found that the more I understood and researched on his disorder the better I was at getting the resources and assistance he needed to have a good quality of life. My son was not supposed to live past the age of 5...he is now 19.

The best advice I can truly give you...take one step at a time and do not stress unless you have to stress. Things work out and you are not alone.

Wishing you and your family luck.

Brenda - posted on 06/13/2011

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PDD is a group of diagnoses, so you have to have a diagnosis of Autism, Asperger's or PDD-NOS.

This is the diagnostic criteria: http://www.cdc.gov/ncbddd/autism/hcp-dsm... You need to see a developmental pediatrician or a psychologist/liscenced counselor who specializes in PDDs. Go to autismspeaks.org and there is a place to put in your area and you can find someone they recommend for diagnosis. Good luck, we just got our asperger's diagnosis two weeks ago, so I know it is very difficult.

I have no idea what your income is, but one place to go to is the knights of columbus in your area, and your regional center. Just look up your state and regional center. it should be under mental health. I wish I could help more but I only know about MO.

Tonya - posted on 06/13/2011

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Thank you and I am trying to do all of that. Ive been googling everything but some of it is very confusing to understand. He will be strating school this year so I am going to look into what programs they have that might help him. Ive read that PDD is NOT a diagnosis so what type of doctor would I take him to so that he could have different testing done with hopefully a diagnosis so that we can work off of that? He is very hyper (even on his meds), has problem sleeping, terrified of strangers, severe speech delays, covers his ears with loud or unexpected noises, scared of haircuts, doesnt play with toys at all and no pretending, he loves to be around other kids but wont play with them, hates when we do something out of the norm, but on the other hand he is so very smart with stuff like computers and video games and always has been. Thank you all for all your help. I dont have anyone to talk to about my concerns because family says it is something he will grow out of but this is my child and I trust in what the doctors and my heart tells me and just want to get the best help I can get for him!

Tonya - posted on 06/12/2011

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Thank you for your help. He is in speech therapy already but only for a few weeks now. He also see a physciatrist for the ADHD and then the intelligence testing was done. I will be sure to look in the the early intervention prevention for him and try to get more answers for us also. Thanks again

Katherine - posted on 06/12/2011

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The diagnostic category pervasive developmental disorders (PDD) refers to delays in the development of multiple basic functions including socialization and communication. Parents may note symptoms of PDD in children as early as infancy, and typically onset is prior to three years of age. PDD itself does not affect life expectancy.
He probably couldn't understand him because he needs speech therapy. I would also look into Early Intervention Prevention programs, talk with the doctor and have him explain all of this to you.
Sensory Integration Disorder is Sensory Integration Dysfunction (SID) is a neurological disorder pioneered 40 years ago by A. Jean Ayres, Ph.D., OTR. Dr. Ayres developed the sensory integration theory to explain the relationship between behavior and brain functioning. As described in Williams & Shellenberger's work entitled, How Does Your Engine Run? A Leader's Guide to The Alert Program for Self-Regulation, "Countless bits of sensory information enter our brain at every moment, not only from our eyes and ears, but also from every place in our bodies”. The brain must organize and integrate all of these sensations if a person is to move and learn normally.

http://www.incrediblehorizons.com/sensor...

http://www.nlm.nih.gov/medlineplus/ency/...


Those are links to help you. I would still ask the doctor to explain everything, get books, google and find resources.

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