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Aspergers and tourettes


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Okay what about the PDD otherwise not specified? My son is social but fixates and wants to do his likes. Yes he is emotional and does want to buy things and get things constantly. Can be defiant and does not accept "no" well. However these all are TS symptoms too. We are in OT for the sensory issues, handwriting dysgraphia, and visual motor delays. These are all TS symptoms too. Can't PANDAS bring out TS and and these can be PANDAS symptoms too? Can PANDAS and tourettes bring out AS qualities or PDDNOS? I am confused at where these disorders overlap. He is on low dose of abilify for the ocd, tics and add and emotional issues . Not yet on antidepressants. Could be coming with zoloft. My boy has tics too such as stomping, squealing, screaming. I am scared about getting the right treatment. As a six year old he uses words like hate, poop, wiener, kill, stupid. I think they are a six year olds version of swearing. I wish I had people I knew who went through this in the school district we are in. I don't think they understand PANDAS or tourettes. All they get is ADD. I really need an advocate. Thanks for the tips.

 

Michele

SOUNDS LIKE YOU JUST DESCRIBED MY SON TO A "T"! I HAVE BEEN GOING THRU A MILLION AND ONE DIAGNOSIS' AND FINALLY FOUND IT--HE HAS BIPOLAR, AND ODD OPPOSITIONAL DEFIANT DISORDER--HE IS ON RISPERADAL FOR THE BIPOLAR AND PROZAC FOR THE ODD, HE HAS ALSO BEEN DIAGNOSED WITH NVLD, OCD, AND HE HAS SENSORY INTEGRATION DYSFUCTION. LOOK UP THE BIPOLAR CHILD ONLINE--MY SON HAD EVERY SYMPTOM--THEY HATE THE WORD NO VERY DEFINANT, AND THE SWINGING IS DEFINATELY SENSORY--YOU WILL NEED TO GET HIM TO AN OT-OCCUPATIONAL THERAPSIT FOR SENSORY ASAP! ODD IS DEFINANCE WITH EITHER EMPATHY OR NO EMPATHY AND CAN LEAD TO CONDUCT DISORDER(SWEARING)....HOPE THIS HELPS--GETTING THE RIGHT DIAGNOSIS HELPS CAUSE MY SONS DOING GREAT ON HIS MEDS BUT HE HAS DEVELOPED A SMALL TIC IN HIS HEAD NOW--THAT'S WHY I'M ON HERE--LOOKING UP THAT!! I KNOW BIPOLAR KIDS GET THE TIC EVENTUALLY HE IS 7 YEARS OLD NOW WAS DIGNOSED AT 5 YEARS ! :)
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Michele,

 

My dd became very defiant during her PANDAS episode. The lexapro rx'd for the OCD at the time (seratonin syndrome) at higher doses may have worsened the defiance. (So sometimes SSRI's can help, other times they can make things worse or their side effects can add to the confusion!) During her PANDAS episode she shared many characteristics of oppositional defiant disorder and had many "bipolar" symptoms (psychosis, depressed, mood swings). Our psychiatrist also said the defiance can be part of the OCD.

 

PANDAS and tourettes make sorting out other problems very difficult!

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Michelle, It sounds like you are going through a difficult time, and I am so sorry. From some earlier posts, it had sounded as though your son was doing quite well for a time. You had said that he often misunderstood things. I am definitely not trying to diagnose anything, but I had a child like that. He had a receptive language delay and auditory processing issue. Sometimes an auditory processing issue won't really show up for a while. As language gets more complex, it becomes more difficult for them to keep up. And, definitely, these kids take things very literally. They also have trouble following directions. There can be behavior problems because they can't understand what they are supposed to be doing, and so give up. It can look like they are ignoring you or defying you, when really they are just misunderstanding you.

 

I also believe that the outbursts could be part of the PANDAS. Especially if he is experiencing ocd and adhd, I think that the outbursts could be the result of the stress of trying to deal with the other issues.

 

I am pretty sure I've said this before, but I am very careful with what I tell the school now about any of my children. Some teachers are absolutely wonderful. You tell them information, and they work to find a solution. But others seem to use the information to show why the child can't succeed.

 

I am praying for you!

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Chemar what you are saying is close to what his neurologist said at our Aug. appointment. He said many of the syndromes overlap and you may have some symptoms but not all to make a diagnosis of AS. Possibly this is just what tourettes can look like in some kids. I read info from TSA on TS is more then tics and it really described him to a tee. Also he is young so he is immature which can lead to problems with self control to apply mental breaks. Is it common that tourettes kids can have marked likes and talk and think about them excessively? Andrew has always had that from age 3 when he became obsessed with Harry Potter. For the time being his interests are not getting in the way of his friendships. As long as he holds it together at school I should be happy. They would be calling if he was having any issues there. He may lose it at home from the stress of the day but at least he is listening to adults at school and getting along with the kids. I do appreciate peoples suggestions. I have been reading every book I can find on TS and aspergers.

 

Michele

 

 

Hi Michele

 

do try to also balance all you are reading and hearing with the fact that often our kids can have a lot of symptoms in common with some disorders BUT that does not necessarily mean they have those disorders.

Many of these neuro issues are spectrum disorders and syndromes, which means a number of things can overlap and sometimes make clear dx very difficult.

 

and to all our members...... just a gentle reminder to be real careful when suggesting treatments or diagnoses......

forums like ours are so very valuable for sharing info and experiences, but we really do need to be very careful about crossing the line on diagnosing, as well as prescribing treatments

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Hi Michele

yes there seem to be some kids with TS (and even some with PANDAS and other issues that manifest tics) who exhibit certain Aspergers sx (my son being one) ....

 

have you ever taken a look at Leslie Packer's excellent website called Tourette Syndrome PLUS http://www.tourettesyndrome.net

 

she covers a wide range of topics that were a real blessing to me when we were going thru the initial phases of my son's dx

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Michele,

 

My neighbor's kid has a quasi-Asperger's diagnosis. By "quasi" I mean, of the four specialists he has seen, they are evenly divided as to whether he qualifies for the diagnosis or not. It's really subjective. If this helps, the criterion used by the two who ruled it out was "shared attention." It is a theory of mind concept that they don't feel is present in kids with autistic spectrum disorders.

 

An example would be if he saw something really cool, would he look at you to see if you saw it/enjoyed it too? It's not something people do all day long, so you would have to really watch for it. I saw it once yesterday. My kids were watching Spongebob, and Spongebob and Patrick engaged in some "bathroom humor." My kids roared with laughter, and then, smiling, looked at each other -- sort of a sharing the moment thing. They knew better than to look at me, 'cause I would have shaken my head and begged them not to tell the other Mommies that I let them watch it!

 

Your son is very young, and although it sounds like he is difficult, you also paint the picture of a sweet, caring boy. You may want to look into a fun social skills class for him. They are not just for kids with spectrum disorders. My neighbor's kid is in one with several hyperactive boys and a painfully shy kid.

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Michele,

 

I just wanted to add that had I have known back when my oldest son was 3 or 4 (thru about the age of 9 to 11?) about all of these spectrum disorders, I would have had a nervous break down. I could tell you some stories! He is soon to turn 16 and I have to tell you that this is one of the most polite, outgoing, sensitive, wonderful young men. I'm not saying that he isn't short tempered with his brother at times, doesn't use some language or phrases that drive me crazy etc. (he's a normal teenager, believe me) but in hind site, I really feel that a lot of the "behaviors" were because he just didn't feel well a lot of the time.

 

I hope that you take away just a bit of peace from this. I know you will continue to fight for any and all accomodations that you think may be helpful to him, but I wanted you to know that some of these issues may well take care of themselves.

 

You take care of yourself too. You are a wonderful Mom!

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Michele,

 

I was quick last night and tired, I wasn't sure if I was not clear about what I meant about my neighbor's boys. I meant their aspergers are different socially from each other. Her concern for one child differs from her concern for the other. We walk every Sun. and chat a lot, and she has helped me understand so much about how different people can be even in the same family with the same DX.

 

CP

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Thanks for the clarification. My son is so emotional over things. He gets frustrated easily and angers fast. Like Chemar mentioned that could just be TS with comorbid spectrum symptoms. I am hoping the psychologist will help me to better deal with his behavior issues. The school is another story. I would love to talk to a parent who had been through our schools IAT process for an IEP who had a child this young with TS or AS. They seem to minimize my concerns and want to wait and see on accommodations. Time will tell but I am discouraged seeing him struggle with the handwriting and numbers and Math daily. He is seeming to not get the concept of counting up numbers in a group and must lose his place and writes the wrong numbers then they are backwards and not formed correctly along with the wrong numbers altogether. He might need more individual instruction time. That is hard for a teacher with twenty two first graders. I noticed she enlarged his paper but it still didn't seem to help him count how many all together. He says he hates Math and that is all they do three times a day. Our IAT is next week. I have emailed three people so far and had no response to any of them. I wanted to see his test scores ahead of the meeting and no response. I emailed his teacher to say we are working at home and send home unfinished work and we would complete and return it and no response. Then I emailed my concern about a parent subbing in his class and got no response. I am wondering if they didn't get the emails.

Chemar,

I did read Tourettes syndrome plus by Leslie Packer and it is a great resource. All I know is I have a long road ahead of us with this school district so I want to make it a good relationship. I contacted TSA and they gave me suggestions but I wish I had an advocate for the meeting to come along.

 

Michele

Michele,

 

I was quick last night and tired, I wasn't sure if I was not clear about what I meant about my neighbor's boys. I meant their aspergers are different socially from each other. Her concern for one child differs from her concern for the other. We walk every Sun. and chat a lot, and she has helped me understand so much about how different people can be even in the same family with the same DX.

 

CP

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Michele,

 

The only thing I can add is my friend said she used to help her sons too much with the education. When she found out that the less she got involved (and what I mean is homework, or reteaching what they had learned in school that day.) and the more she let the kids learn on their own the more the school was willing and/or saw the kids in fact needed IEPs.

 

She said it was the hardest thing she had to do, as she is a math teacher, but felt the school would never really see how much the work was the kids and how much it was she having to go over and over the daily lessons.

 

My own son's dean said not to worry about grades this quarter, that only helps with the IEP/504.

 

CP

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Michele,

 

I feel your frustration in dealing with the school and teachers, but (in my opinion) you have been too patient and too fair, and they are taking advantage of you. They aren't even returning your calls. I absolutely understand your desire to be civil and accomodating. I don't know what your resources are, but my neigbor went through this with her son and she was ignored until she used a special education attorney.

 

You may want to consider paying one to write a request letter for a full-scale evaluation and IEP and sending it directly to the school, or even the district. My neighbor was not even able to get an IEP before she used the attorney. Now her son's annual IEP goes something like this: "What do you want?" "Okay."

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I just got off the phone with the school psych who suggested it would be best to wait until after the meeting to get the scores sent to his Dr. I could sign a release. I called her today and left a message to fax them to his neurologist. They are stonewalling me. They want me to come to the meeting unprepared and caught off guard so I don't have my questions ready. This goes against Leslie Packer's website on preparing for the IEP meeting. She says to review the tests ahead of time. I did call my psychologist to get his opinion if he could get the records by callinh her and talking to her. Also I put in a call to the state of Ohio IDEA office. I had to laugh about your friend. It sounds like mine who somehow fought so well she ended up with his private tag along tutor in the class she wanted her autistic son in. They try to wear us parents down by intimidation.

 

Michele

Michele,

 

I feel your frustration in dealing with the school and teachers, but (in my opinion) you have been too patient and too fair, and they are taking advantage of you. They aren't even returning your calls. I absolutely understand your desire to be civil and accomodating. I don't know what your resources are, but my neigbor went through this with her son and she was ignored until she used a special education attorney.

 

You may want to consider paying one to write a request letter for a full-scale evaluation and IEP and sending it directly to the school, or even the district. My neighbor was not even able to get an IEP before she used the attorney. Now her son's annual IEP goes something like this: "What do you want?" "Okay."

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Wow Michele! I can't believe these guys! Good for you for not going into that meeting unprepared! Make sure they give you a copy the the scores in addition to your doctor. (You could streamline things and just have them give you a copy which you can forward to the doc yourself.) Could you just call (and send an e-mail so you have additional documentaion) that you will be coming in (even give them the day and time) to pick up a copy of the test results from the school office?

 

One other thing I would rec. re the IEP meeting...don't let them schedule it in the morning before school starts. They did this to us last year. The principal was 1/2 hour late (for the 45 min meeting) and the speech therapist forgot to show entirely. So, the meeting got started very late and ended up being very rushed since they had to finish before school started at 8am.

 

An advocate would be a great idea...there will be a bunch of people at the IEP who work for the school..you need someone on your side. The whole process can be intimidating!

 

Does your teacher/school use parent volunteers in class?...that's one thing one of the dyslexia books recommended...take the time to volunteer in class (even an hour a week) so you can 1) build a better rapport with the teacher/school 2) it's a good opportunity to "spy" and see how things are going with your child. Our school uses a lot of parent volunteers (esp. in kindergarten/1st grade but also in older grades), I don't know what they do in your school?

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