We are finally taking ds to see a child developmental pediatrician about 1 1/2 hours away.
Ds was diagnosed locally with adhd and put on adderall xr. He is doing well but we have some issues when the meds wear off in the evenings. Also, I wanted a thorough exam . After reading this forum and learning what others have done it seemed like a good idea to check ds out thoroughly.
The team of doctors will do a comprehensive medical, developmental, social, educational and behavioral exam. It takes about 3 1/2 hours. I hope this includes an iq test.
We go back a week later to find the results.
Thanks everyone for the info and encouragement.
good luck. This is a smart decision. IMO, you cannot have TOO much information!
Please keep us posted, we all learn from each other.
Thanks Diane.
I found out there is no iq test at this visit. I am wanting a little ammunition to present to the school for the gifted program.
I am a little nervous and I hope I can present all of the info about ds without leaving anything out.
Any suggestions?
Ask for an IQ test - they don't give numbers anyway - they give a range. For example - my son is High average.
I'd request an IQ test too. Schools do use this as for "what the kids" ability is.
The IQ tests we've had done did have numbrs. Broken down and Full IQ
Diane V39569.4380787037Diane,
We are not going to keep this from the school. It is time to bring them on board because ds needs help in school too.
Some things have happened at school recently that have made my husb and I see that ds needs his teachers on board.
I am feeling more able to cope now that I had a nights sleep and some time to find out more about AS.
Since the doc wants him off of meds I wonder how we will cope with his hyperactivity???
Where did you go for this incredible workup? It sounds like a wonderful place, and sounds like you'll get the help you need with this new team of doctors.It is a developmental pediatriatian from ETSU (east tenn. state univ.)
H.Patrick Stern M.D.
Chief,Section of Developmental/Behavioral Pediatrics
Professor of Pediatrics
East Tennessee State University
It was awesome! But I am still in shock w/ the change of dx. Does anyone out there know if aspergers kids are also hyper or if that is a comorbid?
thesamman,
I completely understand your situation. I switched my son's doctors just before he turned 12. He had entered into puberty and things were getting crazy. At our first appointment with the psychiatrist, we talked about my son and his history. None of the other doctors ever asked anything about what he was like as a baby. He brought up AS and referred me to have him tested. I live in Florida and we have a place called CARD (Center for Autism and Related Disorders) that is run by the State of Florida and the University of Florida. There are 9 of the centers around the state and the services are free. We completed our last section of testing 3 weeks ago. We will get the results on Wednesday. If he does have AS, I think it is mild.
The night the doctor brought up AS, I came home and did research on the computer. I started seeing red flags and realized that someone may have failed to connect the dots. I have tremedous guilt about the situation. I felt like I have failed to protect my child, that I may have done everything wrong and I may have done more damage in my efforts to help my child. I had a great deal of anger towards his pediatricians. I have sorted out the anger.
When you heard autism, you get that picture of the child lost in their own world and unable to communicate. What I know now is there is such a broad spectrum and AS is nothing like that child.
As I write this I am still in shock. The doctor and his team gave ds the most thorough exam I have ever seen. They took his history and actually listened and asked alot of questions. They observed ds at play and even how he reacted to the questions being asked. Ds was off meds for the day.
The doctor came in to talk w/me and said he was positive that the dx was not adhd. He felt 100 percent sure that ds has aspergers syndrome. He said it is extremely mild and that he was sure that he and his team could help. He said that ds could overcome it and have a normal life. He feels that ds is gifted as well.
The doctor said that ds should come off of meds because they are "deadly" to an asperger brain. They will do more harm in the LONG run than good. The adderallxr is like a bandaid on a huge wound.
Also, ds is extremely low in iron and needs to start iron supplements. But he cannot start the sups until he is off of adderall.
I asked if it would be better to wean ds off of adderall when school lets out in 4 wks or do it now considering how it has helped his behavior. The doc said it would not hurt to wait 4 more wks.
I felt so sure that it was adhd and the meds were like a miracle.....I am just so confused.
Ds is so hyper w/o meds and the doctor does not want him on anything..... I honestly dont know how ds will be.....
Also, I feel like I am losing my support group. After I found this forum I felt like I was going to make it and things were going to be ok. Now I don't know where to turn.
these are some of the reasons diagnosing young is not GENERALLY done. It's too hard to sort out what things could be.
Believe it or not, you'll get more services and more support with the Aspergers diagnosis. Not sure you can keep it "under the radar" as you've chosen with the ADHD, not to get the proper services through school anyway.
Behavior plans are behavior plans. you're always welcome here. There are wonderful boards for parents with kids on the AS.
Things are still going to be ok!
I am going to look into diets.....I hope I could stick to one. It would be really hard because ds only eats some fruits , no meat and lots of bread & cereal.....thanx reruho,
does your ds have AS with ADHD ? I am just confused about the hyperactivity. My ds is very hyper and I can't find that on the AS symtom list.
Since I have I had time to look at AS I find myself saying "oh yeah, that makes sense....." And ALOT of things he did as a baby and toddler stand out.
Even after ds diagosis w ADHD I kept thinking he might have a comorbid....but I was thinking OCD. It's a good thing I quit guessing around and took him to such a good doctor.
The doctor said that the adderallxr (amphetamines in general) was deadly to an AS brain. He repeated that we need to get ds off of adderall because it will do more harm than good IN THE LONG RUN.
Also, ds is extremely low in iron. The Doc said iron is very important for brain function and we had to get ds on iron supplements asap. But we could not give iron w/ adderall????
Sorry to ramble but it is confusing and I am still sorting it all out.
Hi my son is 8 and has the dx, bipolar, adhd, odd, and aspergers. We put him on a GFCF diet almost 2 months ago. A few weeks ago the drs dx jd with a heart condition that would not allow him to take his meds. in the first week jd was extremely hyper. I was worrried that the diet was not working and was going to take him off( it takes some work and alot of planning, so worth it if it works). Then some one mentioned to me that he was just coming off the meds. This is so true because a week later he was so much more calmer and as close to be medicated than i could have hoped. I know this is the diet because we gave him some pizza one night and he was off the walls again it took almost a week to get him back on track. I hope this helps, because not all is lost with Aspergers. I would rather manage my son with diet than meds any day if it helps. I know that meds are great when u need them though.My son was diagnosed as ADHD-combined, in a nutshell he won the jackpot.
The intake package I had to do for his evaluation was 27 pages long and asked me all kinds of question about him and his development, what he is like and what my major concerns were. I didn't remember most of the information but could gotten it of his medical records. It took me about 2 weeks to work through the all the questions. I also had about 4-5 rating scales each for him, his teacher and myself to fill out. the package was about an half inch thick when get got done. I read his rating scales and learned all kinds of things about my son, like he is mildly depressed. And, I just thought those bad moods were puberty.
My son almost stopped talking when he was 18 months old, he went down to 3 words. He could say more but would only use three words. Then he stopped verbalizing completely after we taught him two signs as instruccted by the speech therapist. He developed 10-12 signs to communicate with. I refused to let anyone use sign language with him after that. The speech therapist hade never heard of that happening and continued to use sign language with him. then at 30 months he started talking again and has not stopped since.
reruho39573.2656481481lethy proud mom
What is the GFCF diet?
We tried the Feingold diet about 8 years ago and my son just about starved. He is a very picky eater. He eats plain meat, Rice-a-roni rice pilaf, raw carrots and celery and some fruits. He eats very little dairy. He recently told us that he does not eat yellow food. He does like junk food but he is even picky with that too. He does not eat potatoes unless they are french fries and no pasta. He just started eating cereal again. I am waiting for that to stop again.
The funniest thing about my son is that he like good desserts like New York cheesecake and Tiramisu.
You can find lots of gfcf foods in stores. And dairy products as well. The even make pastas, cookies and lunch meat. U can eat all the veggies and fruits that u want.