Friday, May 26, 2006

Life with Alp

(I have decided to make a separate blog to discuss Life with Alp. This post will be my first entry there. )

It is hard to get a picture of Alp smiling, because he insists on saying "cheeeeeeese", so this is what you usually get. He's adorable anyway.

Since Alp is in a new school and is finally having some success, the ESE director recently recommended he stay there for next year, even though normally he would be going on to middle school. I think this is a great idea because I was worried about what a new location and new teacher might bring. Having him in a good place is such piece of mind.

For those of you that haven't already met or at least read about my stepson, Alp,...he is one month shy of twelve years old and has Autism and Tourette's Syndrome*. He lives with me, my husband, Erhan, and my eleven year old twin girls, Erin and Rachel.

By far, the most disturbing of Alp's maladies are the self-injurious tics associated with Tourette's Syndrome.

The latest tics are of concern because they are painful. He taps. Hard. Perhaps tap is too gentle of a term to describe what he does. He hits. He doesn't mean to hurt. The problem is, the hand flicks violently and lets the fingers ram into one's arm.

Worse than this is what he does to himself. For months he has been whacking the sides of his head, directly on the ears. This is also a very hard "pop". He has gotten sores on his ears and I worry about the internal stress he's put on them.

He has another tic that is difficult on his teeth and jaws. He lets his head hang back a bit, then leans forward quickly to let his head fall foward so he can hear his top teeth click onto the bottom ones. This one has been around for quite some time.

Another bad one is the right arm slam. He lifts the arm in "wing" position and smacks it into his side. He has long, thick calluses on his inner arm from it rubbing against his shirts.

How I wish we could find something to help him with tics. He is on so many meds, vitamins and supplements**, etc. He has had behavior therapy, which doesn't help because tics are not voluntary. We have also had him on a Gluten-free/Cassein-free diet (the jury is still out on this one) for the past three months. I can't help but feel there must be some relief out there, somewhere.

Two nights ago, I discovered a new tic and its repercussions. Hopefully it won't turn into a full-fledged behavior that lasts months. I noticed that instead of hitting his ears, (possibly because of the sores on them) he began hitting his chest in a Tarzan-type motion, but with open hands. Later that evening, I took him to the pool and noticed he was not only badly bruised there, but also had a huge swollen lump. It was obvious the lump was an allergic reaction. It not only had a rash, but was puffy and warm. The only justification I can give for the allergy in that area is perhaps the material from his shirt being pushed against his skin irritated him. He is very sensitive to different detergents, and he had just returned from a couple days at his mother's house. Maybe she used some different soaps. Anyway, I gave him Benedryl when we got home and the swelling was down by the morning. I later found out that while he was at his mother's, she doubled the MethylAid supplement dosage, even though the doctor told us to decrease it a week prior when his arms broke out in allergic rashes. This could have caused part of the problem. (Unfortunately, she refuses to believe these are related, despite the fact that the doctor said there could be. Relations with her are presently very strained.)

We have kept Alp on the lower dose and he seems to be better. I don't notice him pounding his chest very often, and the head slapping seems to be on its way out. (Thank God) The side slap is in full force, however, and he seems to be avoiding the usual area and hitting himself further back. To do this, he lifts his leg on that side and twists as if trying to hit his butt. He looks like a crazy cheerleader. I wonder if he's doing this because the side is sore. How I wish we could help him.

Besides all these tics, Alp has been very good lately and quite calm. He did have an outburst in the car yesterday when I couldn't find the right song on the CD, but those moments are fewer these days. He doesn't complain at all about school and he gets up and gets ready for school nicely.

Oh, there is one new area of concern. In the evening, he retreats to the restroom and will stay there until I insist he comes out. We think he is in a phase of "self discovery", which would be appropriate at this age. We are thankful he understands he needs to be in the restroom (actually this was a part of behavior therapy that worked), but it is getting a bit obsessive. Once he does come out, in a few minutes he disappears again. When it is time to go to sleep, the same thing happens.

Since I'm devoting this entire post to Alp and his current tics and behaviors, the only other one he is really displaying right now is his usual vocal stuff. He needs to be speaking at all times, and right now, if he isn't reciting or singing something ("Celebrate good times...woo-hoo"), he loudly is doing his "AAAAh,-Ahhhh-Ah" sound. For us, this is barely noticeable. When we are out in public, however, it usually brings some quizzical stares, until they see him do some hand flapping or one of his self-slapping tics. Adults usually understand, but children tend to stare in awe. And the funny part is when babies or toddlers see him. I have seen them laugh as if he is performing a show just for their entertainment, or cuter yet, they mimic him!

Life with Alp could probably be a blog all on its own, but that would require too much extra organization. I'll just periodically give updates about him here. Sometimes just writing about it helps me cope. *Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year. Many people have only motor tics or only vocal tics. The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk. These tics are frequent, repetitive and rapid. The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs.
These involuntary (outside the patient's control) tics may also be complicated, involving the entire body, such as kicking and stamping. Many persons report what are described as premonitory urges -- the urge to perform a motor activity. Other symptoms such as touching, repetitive thoughts and movements and compulsions can occur. -Tourette's Syndrome Association, Inc.

**Alp's current medications and supplements:4mg Risperdal, 600 mg Trileptal, .5mg Clonidine EnZym-Complete/DPP-IV II, MethylAid, Taurine (1000mg), 5-HTP 100mg, Multi vitamin, Zinc Picolinate


At 12:31 PM, Blogger lorguru said...

I put a call in to Alp's pdoc, talked to the nurse, and am waiting for him to call back.

At 2:03 PM, Blogger Lisa Jean Collins said...

Hi and thanks for visiting Autiemom Speaks Out. I have not posted there in a long time because I'm still recovering from having finished Sara The Famous, my Christian children's book about Sara, an autistic girl I know. Every time I finish a big project I get burned out and can't create anything for a while, including any essays. But I hope to return to writing sometime soon.

I'll share your blog with my group. I run the Yahoo group called Autieparents, which is an offshoot of AutAdvo, a pretty activist autie group. The Autieparents are mostly spectrum parents raising spectrum kids.

Let me know if you would like to join:

At 3:42 PM, Blogger tshsmom said...

What a beautiful child Alp is!
Alp has some pretty distressing tics there. I understand your concern.
Z's tics are a lot milder and he has never had a self-injurious tic. Right now he's got a pretty constant huffing tic, and a new upper arm muscle tic that contorts his arm and splays his fingers. This one makes it difficult for him to hold a fork or pencil.
Why is it that the bad tics last longer than the hard to notice tics?
Z inhibits his tics in public, which we all know is NOT a good thing. Being a teenager, he's very self-conscious about ticcing. We always say that you know Z trusts you if he tics in front of you. ;)

At 9:37 PM, Blogger lorguru said...

Thanks lisa, I've signed up for the group.

At 9:40 PM, Blogger lorguru said...

tshsmom, thanks for coming back. Yes, his tics are really bad. The pdoc nurse finally did call back and told us to increase Risperdal and Trileptal. His dad is concerned about this, so we probably won't be trying it. He is always apprehensive about medications. It is a miracle he is giving him as much as he gets now.
I'm glad your son's tics are not so profound.

At 8:45 AM, Blogger tshsmom said...

Yeah, it's sad. So little is known about the brain. Meds are always an experiment with each person...try increase this dose...let's add this med to counteract the side affects of the other med. :(
I'm hoping they'll come up with the right mix for Alp!
Hang in there; it's a rough road!

At 10:55 AM, Blogger pebbles said...

Hello, I understand what you are going through, my daughter doesn't harm herself, but she does have motor tics! Hello, I have a 10 year old daughter who was diagnosed with adhd when she was 6, and then when she was 8 she was diagnosed with type one diabetes!!, then when she turned 9, she was diagnosed with thyroid disease, then this year she was diagnosed with motor tics which they tell us, adhd plus motor tics is classed as tourettes, and now last but not least, she was just diagnosed a month ago with celiac disease, plus since she was a baby she has had asthma and is lactose intolerant! She too was on adhd meds, and now only takes aggression meds, they can't give her any meds they say for the tics, which is fine by me, she has to many other things going on with her body to worry about meds! She takes 5 needles a day for her diabetes, and has to constantly monitor blood sugar levels, takes thyroid meds, and her aggression meds. and has to be on a gluten free diet and takes dairy pills when she eats dairy. She is a very active you girl, but doesn't let this bother her, she still acts and does all the same things any other child does. She is a real sweety some days! Oh, My daughter started to get the motor tics while on concerta, just a little, so they put her on strattera, and strattera was worse! So it's better for no meds they said too us!! Which is good! I really don't want to see her on any meds other than what she has to take of course! If you have any questions feel free to reply!

At 10:50 AM, Blogger gryffinator said...

Alp sounds just like my son.

Sean is 10 Aspergers and sensory integration disorder. He was on Abilify for almost a year. We took him off after he developed involuntary muscle twitches.

The tics followed. He squeaks, shrieks and chomps his teeth, exactly like what you discribed in Alp.

His neurologist ran him through a battery of tests; 24 hr EEG, MRI, both came back negative.

We're waiting on blood work for lead/mercury levels and casein/gluten sensitivity.

He was just put on Inversine and I'm not seeing much lessening of the tics.

I'm at a loss, but I cast a suspicious eye on the psych meds. All of them. That's another story.

Have you tried ABA or habit reversal therapy?

Lord, it sucks to see these wonderful kids go through this.


At 8:10 PM, Blogger Leesa said...

Iam not sure how recent this blog is or if it is still updated often. I read this and felt so much pain. Iam 31 yrs old and living with TS. I also had very violent tics and live with many of my self inflicted injuries. Its a very tough road! I have been tic free for the last year for the first time in my life! I was on multiple meds...atleast 6 or 7 that seemed to make things worse no matter what I did. Last year I went in to the hospital and got off every one of my meds. It was an absolute miracle that 7 days later and I had not one tic!! Im not sure if this is the answer for everyone but I struggled with meds for 20yrs along with vitamins and diets...etc! I want to help anyone that I can..I know how awful it is to live with and how awful it is for parents! God Bless my family for helping me every second of every day! If I can help at all or offer anything...I would love too!


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