No Diagnosis

Ashley - posted on 08/05/2011

I know how you feel 100%! I have two children, 3 year old and 15 month old. When my oldest son was 14 months old he started showing signs of agression. He had always been behind on his markers but no one started to pay attention until he was about 18 months old. He has been diagnosed with Sensory processing disorder, and severe speech delay. He is turning three the end of this month and he has the speech of my 15 month old son. He has therapies. But he is also violent, impulsive, anxious, doesn't sleep well also has OCD tendacies. Since my husband is in the military, he is gone alot and currently is deployed for a year. Since my oldest is very tall it is hard to control him when he starts harming himself. I get overwhelmed alot also. I have taken him to countless drs and have been turned away because of my age. They keep telling me he just needs to be socialized. He is terrified of other children and I am sick of people telling me to try harder. It took me to video tape my sons tantrums and such for anyone to even believe me. Its a constant battle, but recently I have a few people on my side so we are now starting to get him the tests he needs. It is very overwhelming to do on my own but when my son progresses it makes me so happy because I know I do what is best for my children. It always seems like a dr is quick to diagnose or doesn't want to diagnose. I just want my son to get the help he deserves and needs to make him a functioning happy child. I don't care about diagnosis but I need to know what is wrong so I can help my child the best way possible. All I can say is what I learned, be your childs advocate, you are all they have and despite what people say you fight for what they need. It does get better :)

Andrea - posted on 08/01/2011

I want to help you, will try to keep it as brief as I can. Our children have mercury and lead poisoning. Please look at the symptoms of chronic lead poisoning and chronic mercury poisoning. The dyes in our food are petroleum based. Petroleum contains lead. High fructose corn syrup contains mercury. These ingredients are in nearly everything at the grocery store. If you had your child tested for lead, he would be in the "normal" range of about 10 mcg/dl. The truth is that the only safe BLL is 0. Mercury poisoning can cause excessive emotional reactions and frequent mood changes after prolonged exposure. If you want your son to get better, feed him real food.

Dawn - posted on 07/14/2011

Ask for a referral to a pedeatric neurologist and then ask for the ADOS test to be done. That should get you an answer about if your child is on the spectrum. *hugs* good luck!

Chasity - posted on 07/08/2011

Maybe its just ADHD like the doctors say. Kids will be kids and lots of parents are always trying to find excuses for what may be normal for a kid but weird for a parent.

Elizabeth - posted on 05/14/2011

i know what you mean im just glad i have help but the part i get frustrating my son punches himself and i worry he is gonna hurt himself bad one day

√v^√v^√♥ - posted on 05/14/2011

A diagnosis helps a lot. It gives you something to call it, something to research it by. Something to look up and definitive to understand. Once you get a diagnosis, it is easier to take the next needed steps in dealing with whatever is going on. So you really are stressed for a good reason. It's a necessary step in dealing with things. However, once I got my diagnosis (for a learning disability) it was like 'Well ok, finally. But what now?' and then begins the next phase in being able to deal with it better. But before that, you get stuck in wondering what is going on :(

Why do you feel like something is missing? I'm glad you are trusting your instincts as doctors do miss things! Good for you :)

Have you looked into local disability agencies, state, and other programs to seek help? It can take some digging and a lot of wrong phone calls but we finally managed to find a few more people willing to talk, help and give advice. Not sure what age your kid is but it will help to have the diagnosis for schools too, and to have state disability behind you.

However, I moved and got the worst counselor ever and a school full of people who do not care. So it is always a constant constant battle that you have to be strong for your kid for, as they will need more help from you. Good luck

Holly - posted on 05/14/2011

Kathryn, You are very welcome and you are absolutely right! You are the only one who will advocate for your child! Its unfortunate how alone we really are in our struggles! That is why we need to stick together as parents and help each other. To know that I am not alone and there are other moms fighting the same battle as me has been such a huge help. If you need anything, advice, support, to vent, anything then please feel free to get ahold of me!! :)

Amy - posted on 05/13/2011

I am also struggling with getting a diagnosis for my little girl. She has also been labeled ADHD with something the doctor called Selective Mutation. She has speech problems but talks much more at home than she does at school. She is very impulsive and we struggle with hitting and pushing others at school. She is not necessarily trying to be mean when she does these things, she just wants the other kids' attention. It is very frustrating and most of the other parents do not understand when their child comes home telling them "Bailey hit me" EVERY day. I don't know if it is asbergers or autism, but just know you are not alone. I hope that you can get a diagnosis soon.

Kate - posted on 05/13/2011

Holly, Thank you so much! I feel alone at times, but it gives me such relief to know that I am not the only person who is dealing with these same issues.I have come to realize that I am the only person that is going to advocate for him. I will never give up, and appreciate the encouraging words! It also sounds like you have had quite a road, and will continue to. Good luck to you as well.

Holly - posted on 05/13/2011

Hi I have a 6yr old who has been diagnosed with ADHD, Anxiety, sensory disturbance, OCD, Aspergers, Intermittent Explosive Disorder, Oppositional Defiant Disorder, Pragmatic Language Impairment and Sleep Disorder. I too had alot of trouble with diagnosis. He was first labeled as ADHD with Anxiety only and I have had to fight for the last 4 years for every ounce of care, recognition and diagnosis he has gotten. Do not give up. You have a long hard battle ahead of you. My battle is far from over. He has had four hospitalizations this year for rages alone, got kicked out of mainstream school and they are wanting to place him in residential treatment facility. Hang in there, be strong. Fight for your child because you are the only one who will!!! Read and do research because no matter who you take him to and what degree they have YOU know your child better than ANYONE! And to the lady who posted to have his IQ tested. If he is in fact aspergers, they do not have low IQs. They are actually very intelligent. My son is really smart. He just has a different thought process which makes it hard to learn! Good Luck!

Melissa - posted on 05/12/2011

If you can and there is a local office, have him tested at an autism sprectrum center. I did with my son in San Jose, was the best because those doctors know what to look for and can steer you in the right direction.

Jenniffer - posted on 05/12/2011

I have an 8 year old son and no reall diagnoses ither. He has sezuires so he is on meds for that and he has sensory issues. Yet I dont feel like that nails it. He has mood swings so bad and it turns in to rages? then he feels bad. HE is so impolsive. I have also read so many books but right this moment I am frustrated. The school says he is fine just impolsive but can be redirected. I dont think its ok for him to acked out 10 times a day at school or think that is normal. I am looking into new docs? Does your son see an OT? I just turned in all the paper work to get my son in to an OT I have read and heard good things?

Carol - posted on 05/11/2011

Hi, Thank you so much for your reply. Yes, I have had all this testing done on her and I will see the results next week. I wish I could have stepped in long ago for her but we lived so far away. I will keep you updated. Again, thank you so much!

Lori - posted on 05/10/2011

What kind of specialists have you taken him to? If you suspect Asperger's or another ASD, try a pediatric neurologist, a child psychiatrist or a developmental pediatrician. A pediatric neuro originally diagnosed my two sons, one with moderate autism and one with PDD-NOS, which was later changed to Asperger;s syndrome. There is a list of criteria that needs to be met for each diagnosis on the autism spectrum. Good luck, I know how it feels to not have a dx!

Lori

Carol - posted on 05/10/2011

Have you tried getting his IQ score?, my family member was told she had adhd and anxiety. But, she had a neuropsych exam and it showed her IQ was very low and she fit into the mental health' reasoning'' (so they say). I told them this is not about a check it is about me helping her. Good luck, keep us posted.

Susan - posted on 05/10/2011

hi, Kathryn - please know you are not alone, and probably not alone in your home community either. I'm the mom of a 16 year girl with Asperger's Syndrome, as well as other things, and the most important thing for her is to know she can get the support she needs to be successful - and the same is true for us moms. To find the local parent support network in your area, go to www.nichcy.org , go to State Organizations, click on your state and then click on Parent Organizations. You should find a couple of agencies that can help you find the right help for you and your family. Good luck!