Asd, Tourette's And Ocd

Lounge By jonahsmom Updated 3 Jun 2009 , 1:26am by jonahsmom

jonahsmom Posted 19 May 2009 , 8:11pm
post #1 of 13

Any of you caking mommies have a child with this diagnosis? We are really struggling with our five year (he's at the end of his kindergarten year). He has been evaluated by a couple different people to be on the autism spectrum (asperger's) and yesterday after a LENGTHY evaluation the autism specialist thinks that he also has OCD and tourette's. Autism and OCD we knew...have known since he was three...but tourette's was a huge shock. He has simple and complex motor and vocal tics. So much so that they seem like natural behavior and that they are just a part of his personality. They feel he is socially functioning at the level of a three year old!!!!

His biggest problem that we've had severe issues with at school is his aggression. They say he becomes someone completely different. Everyone loves our Jonah, but we are all completely at a loss as to what to do with him when he is tossing desks, biting, kicking, screaming, to running (bolting actually) and laughing hysterically for no reason whatsoever.

We've changed his diet, got him in OT, work on everything possible at home, have him on nutritional supplements, etc. He is normally extremely loving (to the point that the docs yesterday said that they don't believe he really understands what it means when he hugs and says I love you - talk about breaking mom and dad's heart! I think they called it "disassociation, but I don't remember for sure). Now we don't even know if he understands how much we love him! It's like a switch goes off and he changes - and when he's done "raging" he turns right back into that loving child. We've done an EEG (rule out seizures) and bloodwork (rule out hormonal problems). Both turned out fine.

Doc thinks he has a very high IQ - based on the "obsessions" that he has (he can name all planets in order starting with the sun, etc). At five I think that's amazing. And he's interested in sciency things and technical things. They think his aggression stems from his OCD and NEEDING to carry out a task that we're stopping him from doing and so we're starting him on a low dose of prozac. BUT that will take 8-12 weeks to really start working well.

Any ideas for what to do with him regarding school in the meantime? He needs the socialization because he is just starting to come out of his shell and starting to actually play with other kids, but we're afraid to have him around other kids because we don't know when or what will make him go off the deep end. The autism team doesn't know what to do with him and the school has no more ideas. His teacher and everyone around him has been absolutely wonderful, but we can only ask them for so many ideas. She said in her 19 years of teaching she has never had a child like him. Also, the autism team calls him "the chameleon" if that gives you an inkling of what he is like!

That was long, sorry. We both love that little guy sooooo much. It is just breaking our hearts to go through this.

All of this is after my having fought breast cancer in 2006 and Jonah being born (2003) with many congenital pigmented nevi that we now have to watch closely for changes. AND the child psychiatrist is concerned about some skin issues Jonah has on his face...wants to have it biopsied. So we have another appointment in Iowa City for that.

Seriously, we've about had it with the rough stuff. We would like something happy please!!!!

12 replies
Rylan Posted 19 May 2009 , 11:41pm
post #2 of 13

I have a 3 autistic cousins, a cousin with tourrettes and a bestfriend who has OCD.

Back in highschool, I met one of my bestfriends. I used to be one of the loners and all I did was hang out in the library. Thats where I saw him, I came up to him and became friends with him. I did recognize something different with him. One time I dropped him off to his class and found out that he is in a Special Ed class. I never really had a friend who is special but let me tell you, he is such a nice person. Then I later found out that he has OCD and comprehension issues. Years has passed and we became bestfriends, I took him places and we hung out a lot.

One day his mom called me and thanked me so much. John (my bestfriend) has been telling his mom about me and that he is glad to have me as a friend. His mom told me that he is not outgoing and never had a real friend before and that since he met me, he changed a lot. His disorder is not as severe as before. His mom thought I helped him get things out of the way. He used to check the oven hundreds of times a day to see if it was off or not. He worried too much, but now he barely worry about things.

I honestly did see a difference. He acts like everyone else.

I just want to let you know that never lose hope. "Where hope grows, miracle blossoms".

funcakes Posted 20 May 2009 , 1:21am
post #3 of 13

This is not my area of knowledge, but I have friends that specialize in autism. They have studied at Johns Hopkins. There seems to be some really good research going on there. Their information is cutting edge. Johns Hopkins runs many programs for children with all different types of problems and entire schools for those with all different types and degrees of autism. Their schools are under the name of Kennedy-Kreiger. Maybe you could google them, and find out information or people to contact who could guide you they seem to have some of the best info.

jonahsmom Posted 20 May 2009 , 1:40am
post #4 of 13

RylanTy...it's great of you to be such a good friend to someone who is "different." Luckily, the kids in Jonah's class really like him and help him whenever possible. I know it scares them, though, when he turns on them - even if he isn't really "there" when he does it.

And, funcakes, thanks for the tip about Johns Hopkins. That's where I'm going right now...

chanielisalevy Posted 20 May 2009 , 3:36am
post #5 of 13

I beg you to ask your doctor to get your son a blood test and check his antidnase-b and ASO (these are strep titers) So much of what you said about your son points DIRECTLY at PANDAS which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep...meaning that a nerurologist who is familiar with the diagnosis will prescribe zithromax for 5 days or more and the strep titers will begin to go down until the tics, emotional lability, OCD like symptoms will disappear if that is in fact what he has. I have a set of twins, both of whom have PANDAS (which is shocking as it is not contagious) their strep titers were OFF THE CHARTS . One had tourette's like facial and vocal tics (came on suddenly) and the other had OCD like symptoms. It took us a while to get the proper diagnosis but the remedy was simple. With one twin we removed the adenoids and tonsills (the other had them out already) and put both on zithromax. I got my children back! Research the disorder with the NIMH on the web and you can read all about it. It is a controversial diagnosis and not all doctor's "believe" in it but after seeing internists, 3 neurologist, cardiologist, and psychiatrist, we found a neruologist who gave us the right diganosis. 5 days of zithro and POOF! Look into it and feel free to PM me with more questions, Best of luck to you.

ihavasweet2th Posted 21 May 2009 , 4:20am
post #6 of 13

Wow!!!! I read your post and you were describing my son, however he is almost 26 and was the first person diagnosed with Asperger's at the U of Iowa Hospitals and Clinics. We also had a doctor in Ames tell us he had Tourettes however, I said no and left his office and never went back. This was after seeing him for 6 years! We took him to Chicago and tried mega vitamin therapy that we had seen on the Phil Donahue Show. Our Pediatrician finally gave us a referral to U of Iowa and we have been going there ever since. He still goes every 3 months. He is diagnosed with Aspergers, OCD, and Bi-Polar disorder. The Bi-Polar was diagnosed at 16 and the other 2 diagnosis came when he was 10. We struggled with him from about 3 years on. 10 -12 years being very rough. He is doing well now. Lives on his own however, doesn't deal well with people and has trouble keeping a job. He was tested and has a genius IQ. It was very difficult but he is doing well now, and I take it as it comes. He is a very intriqueing young man. I would love to talk to you and help you in any way I can. you can PM me and maybe we can correspond by email or on the phone.

HTH
~ihavasweet2th~

redpanda Posted 21 May 2009 , 5:13am
post #7 of 13

My son, who is now 16 (and very even-tempered, especially for a teenager) had a lot of rage-type reactions when he was in preschool and up through second grade. (He was diagnosed with Asperger's and mild cerebral palsy in first grade.) Luckily, he didn't tend to hurt anyone or break anything, but he would yell and just be irrationally defiant. A couple of times, he did throw himself at me, which was a problem because I have arthritis.

What we tried to do was reduce stimulation when he would have one of these melt-downs. This meant not trying to reason with him, not trying to restrain him unless safety was an issue, in which case it was only long enough to get him to a safe place. When he was in melt-down mode, he was unable to control himself or calm himself down, and anything we did to try to help would just make it worse.

When he was in 2nd grade, he had an assessment with a sensory integration specialist, who determined that he had severe sensory processing and integration issues. She worked with him for over a year. She stopped after about 6 months, originally, when he seemed to have lost all of his sensory issues, but within days he rebounded and was out of control.

Another issue that both my son and I have is that we don't recognize hunger or thirst and therefore get into situations in which we are seriously low blood sugar and/or dehydrated. This seems to add to the likelihood of a meltdown. In recent years, when my son gets particularly out of control, dh and I tend to start by throwing a protein bar or protein shake his way, along with a bottle of water. 9 times out of 10, that seems to do the trick and get him to a place where he can talk to us.

Out of curiosity, is your son taking any kind of medications, such as ADHD meds (stimulants)? They can bring out/increase tic behaviors. My nephew had multiple tics all through his childhood and teen years, but was never tested for Tourette's or even tried on a different set of medications.

My son is a delightful young man, also highly gifted in multiple areas. I think his quirkyness is one of the things that makes him so interesting to be around.

jonahsmom Posted 22 May 2009 , 1:19am
post #8 of 13

Thank you for your stories!!!

I know it is common for children to misdiagnosed as ADHD when it is actually autism, but Jonah was never misdiagnosed. They have never even mentioned ADHD to us and that was one of my fears because I KNEW that was not his problem. And we tried really, really hard to go "no meds." It is scary to me that you don't really know what the long-term effects of being on meds for years and years really is. He has been on gluten-casein free diet since August '08 and we've been giving him nutritional supplements and has generally done okay. He's always had a quick temper and wanted what he wanted ten minutes ago! The serious rage thing has been really happening the last couple of months, but REALLY bad the last few weeks. So, he just started a LOW dose of Prozac today. He is also one of those kids that once he gets to "raging" you can't turn it around. You just have to find a place where it can run its course. The other day at school, the day that I wrote the original post, was especially bad, but the lead of the autism team was FINALLY there to see it. I don't think he believed any of us that it was as bad as it was because Jonah is such a sweet and smart boy!!!! Nathan has seen it happen at school, but I haven't. Both Nathan and his teacher said it looks like he is having an out of body experience. Completely absent look on his face. Unfortunately, he's kind of a guinea pig at his small school. They've had children similar to Jonah, but they say none on quite such a severe level. They say he is the MOST rigid thinking child they've dealt with. They're having to find new ways to deal with behavior issues, but they all say they absolutely LOVE Jonah and are glad to be working with him. I'd probably run the other way if it was me (and he wasn't my kid anyway!)!

Anyway, that same day I had an oncology follow-up and found out that there is a very important reason I got breast cancer almost three years ago!!! My oncologist has a son who is autistic! When we started comparing notes, he told me that his son was EXACTLY like my Jonah. He said police had actually been at his house because of his son's aggression issues. And while I was totally sobbing over the events of the last few years and how it completely sucks, he gave me hope. His son is in college now and on no meds....doing great! He says they don't grow out of it, but they SEEM to because they learn how to cope and they LEARN some of the social skills they need. It really depends on us and how we deal with it. That's what will make the biggest difference.

I'm really hoping we see some changes with the Prozac. I know it's not immediate, but a gradual upward swing is all I'm looking for! I know that it is doing something because generally Jonah just says he's hungry CONSTANTLY no matter how much we feed him and today he only said he was hungry once. I know that loss of appetite is a side effect, but I figure that if he's experiencing side effects he's got to be experiencing a small benefit even now. I really think he was hungry only because he wanted to eat at the food court again. We bought some digestive enzymes today, they help his body digest the gluten and casein properly, and so he got to have arby's popcorn chicken, curly fries, and REAL chocolate milk for the first time since August. I think he was kind of excited! He has never complained about his diet, but it's going to be nice if we don't see any adverse effects from the regular food we fed him. It'll be nice not to have to pack so much food for him and snacks when we have to go out of town!

Anyway....I know I've blathered on long enough!!!! Thanks again for the support!

Justbeck101 Posted 1 Jun 2009 , 8:03pm
post #9 of 13

My son was diagnosed with Tourette Syndrome and OCD. It gets better, easier for the most part. Maybe it is just that you learn how to deal with it better. I am on my way out the door, but I will be back later with more info that I have learned.

cakesbycathy Posted 1 Jun 2009 , 8:57pm
post #10 of 13

I'm wondering if the worsening in behavior has to do with the fact that school is ending for the summer and he is having trouble with the transition and knowing there is going to be a change in his schedule?

jonahsmom Posted 1 Jun 2009 , 11:47pm
post #11 of 13

The fact that school is ending would be a good scapegoat, except for the fact that it has been a real struggle all year. Not so much with the raging every day, all day, but definitely he has been struggling to just get through the day.

Actually, he has had three REALLY great days in a row at school!!! (Not including the weekend of course!) We were so worried about him taking medication and what the side effects could be, etc., that we didn't even want to consider it at first. I gotta say that I wish we would've done it sooner. In just this short time we have noticed a HUGE change.

And I was worried about him making friends, but he definitely has. One little boy's mom said that her son talks about Jonah all the time and absolutely adores him so we're going to have lots of playdates over the summer and another kid asked me if Jonah and him could play over the summer.

I knew he was a charismatic little guy....I don't know what I was so worried about!!!!!

Thank you guys for all your support.

BakingGirl Posted 3 Jun 2009 , 12:30am
post #12 of 13

Another poster mentioned sensory integration issues (also called sensory processing). It is very common in kids with autism to also have sensory processing disorder. My son suffers from it. He is not autistic but he has a lot of problems stemming from the SPD. He has problems with attention and concentration, he is very emotional - ranging from high to low in the matter of seconds, he is oversensitive to certain tactile stimuli, plus he also has dyspraxia - a motor coordination problem. He has been receiving OT training to try and overcome some of these issues, and it has really helped. When the child's brain is not reading the input from the senses properly the child can quickly be overwhelmed and react with aggression and frustration. It is definitively something to look into. You mentioned an OT in your post, it is definitively worth talking to her about SPD causing some of your son's issues. Hope you get some help!

jonahsmom Posted 3 Jun 2009 , 1:26am
post #13 of 13

Yep, he has also been diagnosed with sensory dysfunction. He's been walloped by crummy stuff. So the formal list is Tourettes, Sensory Dysfunction, OCD, ASD (Asperger's most likely).

He had another great day at school. Started off rough because he was giggling and they couldn't get him cool it and we were all kind of upset because the last few days have been soooo good. BUT, Tourettes is a new diagnosis for him and we have to remember that some of those things that drive us nuts are actually tics that he can't help. So, I asked Jonah if he chooses to giggle and roll around on the floor or is it something that he feels like he HAS to do. He says he HAS to do it. Keep in mind this is a child that CANNOT TELL A LIE. He tattles on himself all the time. If he was only choosing to do that, he would've said so.

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