Sounds like you have a plan Cindy. I'm with you....ask questions and don't let anyone discourage you.

I find it hard sometimes to ask the questions. My PCP is a jerk about this.

I one time told him I'd looked a medication up on line and he said "Don't do that; stay away from those sites!".

Huh? I'd looked it up on a reputable site like the Mayo Clinic or one of the big medical sites.

My PCP also likes to say 'don't ask about so many things' when I go for my yearly physical.

Well...when else do you ask the questions. He stimies me...makes a big deal of sick patient visits...like you are supposed to get sick on cue?

Anyway, I'll shop around soon for another doctor. There are plenty of them around :winky:

Hang in there and do ask the questions. Check out the side effects of the meds. Sometimes there is not any choice but often there are better substitutes.

Tootsie

Cindy:

Okay, here's one tip for you. Go to this link and poke around. I'm not saying your daughter has AS. I'm just saying you should read up on it and this site will give you information on OTHER disorders and you just might hit on something. You can compare behavior patterns, ask questions, and just get some general information. Kids can have more than one disorder. Kids can also just be a pain in the neck and have no disorders. They can just be KIDS!!!

This is a good site which explains all about aspergers and various options.

It's chock full of good information. It can be your starting point. And if you see that you really don't see any similarities, well, hopefully it can point you in some directions that can help you.

Not telling you to do this today or tomorrow. Whenever you feel comfortable, not rushed and have some moments to spare, well, it's a good starting point.

http://www.aspergers.com/

Thanks Melody,

The link you gave was great.

I had thought it was aspergers before, some of her symptoms would make sense to me.

The regression part of it is what throws me.
Like her ped had said she is a complicated case where she may overlap disorders.

Thanks for the info it was very informative and eye-opening.

Hi. I have something of interest to share with you.

Don't know if you have heard of youtube. People post videos (lots and lots of videos) on any subject.

Well, the other day, I just typed in Aspergers, and you have no idea what came up.

It seems that many many MANY youngsters, and young adults who have Aspergers (and other Autism disorders), have made videos and posted their experiences on youtube.

I think it's vitally important for parents who have never seen any other child except their own, and if their child has been diagnosed with aspergers, well, it's important to view some of these videos.

Many of these people happen to be ex-marines, students, computer geniuses, just plain folks and some are not plain anything.

But all have their stories, and who knew, that they have been up on youtube all this while.

So here's a link to MANY videos up on youtube on peopel with Aspergers Disorder.

I do hope this can help you and other parents.

http://www.youtube.com/results?search_query=ASPERGERS

Misshayleesmom,
For years I worked with Emotionally Disturbed children, some with Autism but not Asberger's in that setting, but now my 16 year old son has befriended another boy his age who has Asperger's. In turn his friends include Mike in some things also, recognizing he is a little different. My son went out to a ball-game with Mike (boy's parents took them), has seen Mike melt-down at school, Mike has eaten here, DS has slept at his house. But DS is a very kind and understanding boy who sort of understands (he IS sixteen!!) having had a Spec. Ed. Mom who had him hanging out with a variety of Autistic kids since he was 2. Your daughter does have a harder life to lead, but some will see her for who she is really.

DS also has a MS Mom, so he knows things can be different. You've got a tough job, my thoughts are with you. You have MS too, I know I get tired, I bet you do too. Know, although it's from far away, a lot of people want to give you support.

Wish I had some answers and helpful suggestions for you. But you're right when you say that others can't understand if they haven't walked in your shoes. I can only imagine how hard it must be for you, esp. when you're seeking answers to such a befuddling situation.

I'm very happy you have a doc who will work with you.

Hugs and best wishes to you and your family. :grouphug:

Your daughter is very fortunate to have you for a Mom. :) Never never give up!

Thanks for all your kind thoughts and words.

She just started taking Concerta so we'll see how it goes with that.

We are making arrangements tomorrow to find out how we can get her tested.

Her psychologist thinks it may be add/adhd with anxiety.
What i can't figure out is the regression part.

I'm anxious to get her tested, we have found a place about 45 minutes from me and its a group of therapists etc who will perform her psychoeducastional test and there is no waiting list.

I called another place and there is a waiting list and there is 30 people ahead of me.
I think that it's crazy that these poor kids fall through the cracks and don't get the help they need.
Without this evaluation we won't know which learning disability she has.

What has me soo confused is one week the specialist says her behaviour is not normal for a 7 yr old and she is regressing, to 2 weeks later and she says he thinks that she has add/adhd with anxiety.

He hasn't even spoken to her yet, he just had me fill out a questionaire.
So is he getting this info from this?

We'll see, what the testing brings.. at least i'll get some answers.

Again thanks for the kind words it means alot.:grouphug:

Hi, regarding Ritalin, the other day, on my MSN home page, there was an article that said: Doctors are advising parents to have their children get an EKG before they are given Ritalin.

It continued that, while Ritalin is safe in most cases, it's the odd case that shows up years later, as some kind of heart problem, so it's advised that before ANY child is given Ritalin, that they should have the heart tested.

Not an easy thing to hear, I know this. But better to be armed ahead of time, then to find out later.

I know she is not on Ritalin now. But just in case someone decides to prescribe it for her at a later date, well at least you have some facts.

Here's one of the links that expains the whole Ritalin thing.

http://www.msnbc.msn.com/id/24244468/

Not trying to scare, only trying to help.

Oh how I would like to be there and just give you a great big hug and Haylee too. I know much about what is happening to you both.

My son (now 14) was a difficult child, to say the least. He was bright, walked at 7 months, read at 2 1/2, but we could not keep him from anything. Meltdowns up until the age of 12, now he only occasionally has them. He is very kind and considerate, but with boundaries.

He was thrown out of 3 daycares, 1 preschool and 1 regular school. I didn't know what to do. So I got in touch the Children's Learning and Development Center at UNC school of Medicine. There is a doctor there that had been on Oprah talking about subjects of what people call "out of control children". He was disgusted at that term. He has written many books, but I can't remember his name (I will look it up though).

However I got my son an appointment there to see a collegue of this dr.s His name is Dr. William Colelman and he has a life saver.

He spent three hours observing and talking with my son. He let him interact his way for the first hour (spencer ran around the inside of the building, someone gave him a set of keys and he tried to open every door with them) they didn't stop him. I was kind of confused. Then the next 2 hours they had him seated with blocks and other toys in front of him and questioned him about questions I didn't think a 5 yr old would know (that is how old he was when this first appt happened).

The doctor called my and his father in and told us that we have a wonderful child. (Inside we were rolling our eyes) He said I can give you several dx's but that would not solve anything. I would like to test spencer. So we allowed him . He watched Spencer's brain activity from everything to sleeping, eating, getting mad, being happy, what it looks like when someone he loves walks through the door or he hears their voice and if he hears something that scares him. Very thorough testing.

Conclusion - Spencer was dx with a slight Aspergers with Incognitive Behavior Recognition. (I think that is what it was).

He tried all types of different meds, but alas a medicine used for bi-polar medicine was found to be the most effective. I promise you I loved my child then, but when he was put on a very low dose of Abilify, we found our child we had before 2 1/2.

He has stayed on this dose for over 9 years, we had to educate the school systems, and this Doctor did not give up. He threatened to sue the School Board if they didn't get a cross-catagorical class set up and he came to the school periodically to check in on Spencer and still calls twice a year now that Spencer is in high school. The only problem we have with him now is that he is a TEENAGE BOY!

I guess what I am saying is this: there is a doctor out there that can help Haylee, It is very hard on parents as well as children, just don't give up. People labled us as bad parents, but no one knows what goes on in your home except those who live there.

Best wishes coming your and Haylees way. Also I posted the link to the center we went, there are some amazing studies and articles found on that site.
I know many have given you information to look over and it is probably right now overwhelming, but one thing Dr. Coleman told us to do is let Spencer in on this. Don't keep it from him. If they are aware of what you are concerned about, they will try to help more i.e. Haylee we need to try and keep the house clean. I will clean my bedroom and you can get started on yours and then I will come in and help. She will probably beat you, because she realizes that this is something important that needs to be done.

One more thing we learned - CONSISTENCY CONSISTENCY CONSISTENCY. Our lives practically revolved around those three words. Children with these conditions hate for their schedule to change. Sometimes it needs changed. Make Haylee aware of that the day or two before, so she can have time to adjust to knowing it will be different.

I am sorry I am ranting. I feel like I could right a book. I would love to tell you everything from beginning to end, but you would have much more to read.
So for now I will leave with sincere wishes and hugs for both Haylee and you :grouphug:

Hope this helped somewhat.

http://www.cdl.unc.edu/professionalsExpertise.aspx

Dr. Mel Levine is the specialist name and here is a link to what he does with his patients.

http://www.npr.org/templates/story/s...toryId=4460341

Missy