Hi! New here.

iVillage Member
Registered: 07-10-2007
Hi! New here.
12
Tue, 07-10-2007 - 6:35pm

I used to be active on a few boards here years back, but life has just been too crazy to find the time. I have a DH, Paul & 2 DC, DS, Jeremiah (6, almost 7) and DD, Joenna (3).

DS was dx w/Asperger's spectrum W/ADHD & OCD/Anxiety disorders. I cried when I first got the dx, but also felt a bit relieved that we weren't crazy, we weren't bad parents, that what we saw & experienced w/DS was real and we can now deal with it. I first read an article on i village a few years ago on raising spirited children & felt that was DS to a T. (http://parenting.ivillage.com/gs/gsbehavior/0,,45pv,00.html) I brought it up to his ped. at the time & he said he was just a normal boy. I am a middle school teacher & have taught many students w/various disorders, but never taught anyone dx w/AS until a couple of years ago. That's when I started looking into it & really thought to myself that's sounds like DS. I also realized that he seemed to have OCD tendencies. DH & I do too, but are not clinically OCD.

We had a high speed head on collision 1 1/2 years ago that our whole family was involved in. Thank God the kids were physically alright since they were properly restrained. I was bruised & sore for a couple months, but DS had his foot shattered & went to emergency surgery & was out of work for 7 months. This was a very traumatic experience for all of us, but especially DS. We began taking him to a therapist then & fears came out. She also thought he might have ADHD & suggested going to a child psychiatrist. We were not happy with him, but through the nurse at my school we found an awesome ped. that specializes in ADHD & other disorders. We now see him and are starting to see a child psychologist in comjunction w/him. We had him evaluated through the school psychologist as well and we now have a 504 plan in place for him.

His symptoms are difficulty reading others in social situations,will often stand too close to others, will talk about things even though the person shows no interest in the subject, doesn't have many friends, intense focus on things of interest, lack of empathy, lack of coordination, uncomfortable w/change, sensitivity to loud noises, focus on math/fixation w/numbers, fixation on rules & enforcing rules, lack of attention, forgetfulness, loses things, easily distracted, can't sit still long, constantly out of his seat at school, loud, hyper, talks excessively, blurts things out, difficulty waiting, interupts, impulsive, angry outbursts, aggressiveness, sensitive to criticism, he has to do things in certain orders & in certain ways, he lines things up and gets upset if anyone messes them up, he is a perfectionist, he gets angry when people don't do things the "right" way, must finish things, has fears of germs and must wash hands & shower thoroughly, can't touch his shoes, & worries excessively.

I am mainly concerned with not knowing what he is thinking (he doesn't share his fears or many of his other thoughts with me - he says because he forgets) and dealing with his aggression. He was on Zoloft which worked great for his OCD/anxiety (he didn't worry about a thing!), but triggered his ADHD symptoms & made him much more uncontrollably aggressive. He is now taking Metadate CD which helps him pay attention a lot better & control his hyperness & impulsivity. He also started taking Straterra.

I guess I came here for support and advice about how to deal with DS. I used to think he could control things (years ago) & felt he was just "pushing my buttons" and would get very angry & yell, which made things worse. Now that I understand him a little better, I don't get as angry or yell as much, but it is still very difficult to deal with. I know we are headed in the right direction, but I could use all the help I can get.

TIA

Janet

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iVillage Member
Registered: 07-10-2007
In reply to: janet07
Thu, 07-19-2007 - 2:53pm

Debbie,

Yes, I remember my seizures as a child. I would be doing something (higher risk if I was active or overheated) & suddenly would experience tremendous, unbearable pain in my head. I would run home if I was out. Because the pain was so unbearable I would lay/roll on the floor kicking & screaming because I didn't know how to deal with such intense pain. I also had a fever. Then I would curl up in a fetal position. After 5-10 minutes of this I would pass out & lose control of all bodily functions. I would always throw up after passing out & would be out for 2-3 hours. No one could ever wake me during this time. When I did come to I would feel fine, have a normal temp, & would be hungry. This also began at the age of 4, 1 month after I was in a minor car accident where I bumped my head. At first I had these every month or few weeks & then it became more regular. There were times where I would experience these seizures every day or even multiple times a day. I was put on anticovulsants (Phenobarbitol & later Tegretol) & they would adjust the dosage as I grew. I was finally put on Inderal which is a heart medication that I believe was used to regulate the flow of blood to the brain. After Inderal I was alright. I also went through all the tests: EEGs, cat scans, blood tests, etc. typically on a yearly basis. I am glad to hear that your daughter seems to be outgrowing it as well. It was not pleasant & limited me quite a bit in my childhood.

My DS also has motor issues. We have him in swimming, soccer, & he just started martial arts. He seems to enjoy learning these things, but does stand out quite a bit. He just isn't as coordinated & doesn't get it as quickly as the other kids. We try to focus on his effort, improvements, & successes. He doesn't seem to notice the differences between him & the other kids. DH is also helping him daily practice martial arts since he studied it when he was younger & the one on one instruction seems to make the world of difference. It's interesting how much our kids have in common, even the same meds not working. We are finding some progress since we found the right docs for DS. When you have the right professionals to help you, it is so much easier. I pray that when your DH switches jobs the new insurance will be better & the new psychologist you plan to see will be more helpful to your DD. And yes, prayer does help a lot! BTW, could you pray for my dad. He is fighting colon cancer. He just had surgery on Monday to remove a section of his colon & the tumor was very large. He will see the oncologist in another week & a half & will most likely be starting chemo then. Thanks!

Take care,
Janet

Avatar for stephsmom98
iVillage Member
Registered: 03-28-2003
In reply to: janet07
Wed, 07-18-2007 - 10:56am

Hi Janet, thanks for the response back.

When she was five, she started having seizures. Her ped couldn't figure out what was going on so she sent her to the ped. neurologist who dx with epilepsy. She was in the hospital for a week for monitoring and getting meds. She would keep having breakthrough seizures and her med increased. She is seen every 6 months where they do EEG tests. Her test last year showed no seizure activity and she was taken off one of the meds and has had no breakthroughs. Her seizures were limited to the frontal left lobe of the brain. Doc thinks she is outgrowing them and that is what we are hoping. I am so glad to hear you outgrew yours. Do you remember your seizures? Stephanie would shake and curl up her hands and feet and cry, but she was fully awake during seizures. When she had one, she would hullicinate kind of and said she saw a bad lady and fire. Thank God that was over with. I wonder to if they are related, but neurologist said not.

As whether or not to go to one, you could try or ask your son's doctor. A friend of mine who has an Asperger's son has seen a developmental pediciatrician. We already see the neurologist for epilepsy so that is why she is helping us.

We saw a psychologist for a time, but he wasn't much help. We are going to try to see another one soon, but DH is in the middle of switching jobs.

Strattera didn't help us much and the risperdal seemed to make her more fearful. Thanks, we hope the new insurance will be just as good as we have now.

I pray you can work this all out and going through this, we could all the prayers we could get huh? Try the lotion thing, it seems to work pretty good. It is interesting to see how many AS kids have motor problems. My DD doesn't trust herself or others when it comes to physical things.

Take care.

Debbie

Debbie, Mom to my "only" Stephanie
iVillage Member
Registered: 07-10-2007
In reply to: janet07
Wed, 07-18-2007 - 1:28am

Thanks for the welcome! It is nice to meet you Debbie T. I noticed your cross & thought you might be a Christian too. I also read from another post about your DD & she did remind me a lot of my DS. What you said about her in your post to me sounds almost exactly like my DS! Did you say your daughter had epilepsy? I was diagnosed with a form of epilepsy when I was younger by a ped neurologist & grow out of it as I hit my preteens/teens. Now I wonder if that could be related. Do you think I should take my DS to a ped neurologist? Is it necessary or recommended to do any neurological tests for diagnostic purposes?

DS's meds were working great when he was just on Metadate CD, but once Straterra kicked in the ADHD symptoms got a bit worse. We are waiting a bit longer to see what we will do. He just started seeing the psychologist, this Friday will be his 2nd time, so I guess we will begin getting some recommendations for behavioral therapies shortly. The lotion/massage thing is interesting. I might try that.

I wish you all the best with your insurance/coverage issues.

Janet

Avatar for stephsmom98
iVillage Member
Registered: 03-28-2003
In reply to: janet07
Wed, 07-18-2007 - 12:36am

Hi Janet:

Sorry it took so long to say hi and welcome. You are definitely not alone.

I am another Debbie and also a Christian. My daughter has the same dx as your son plus she also had seizures which her neurologist thinks is about gone.

I'm sorry about the car accident, but glad to hear no one was seriously hurt.

That's great that his Ped is a specialist in that area; that really helps. Our DD's neurologist is a big help for us. She wants her to see a psychiatrist again though, but I hate to have her on more medicines. We are thinking a psychologist might help for now for her anxiety issues.

We homeschool and are getting secondary insurance to supplement ie. speech therapy, testing for auditory processing problems and occupational therapy (which we had before until insurance refused to pay for any of it - insurance will not pay for anything related to autism, but thank God the hospital rode off the cost).

My DD sounds a lot like your DS. She talks almost all the time with endless questions and won't think for herself. She is a sweetie, but very tiring and it can be frustrating. She can repeat herself over and over again and it is usual by saying something negative. She also has lack of coordination and won't trust herself or others. She always thinks she is going to fall and right now has an anxiety about going up steps of any kind.

DD was on Zoloft, but it didn't help much as well as the Strattera so she is off all those right now. They also gave her Risperdal, but that didn't help either. I'm glad the medicine is helping your son concentrate better. We were told by the occupational therapist to not have her sit too long for studies and to get up every half hour or so and to brush her arms and legs and then massage them with lotion and use her muscles every hour. This, they say, helps her to concentrate. I am not sure how well it is working. I mean, it helps sometimes, but some days she doesn't concentrate no matter what. But for the most part, she is getting better in that area. It works well to teach her at home, but at times she just doesn't get it.

You have come to the right place for support.

Take care.

Debbie T (to distinquish myself from the other Debbie :)

Debbie, Mom to my "only" Stephanie
iVillage Member
Registered: 04-04-2003
In reply to: janet07
Tue, 07-17-2007 - 9:13pm

Hi Janet. I'm new too. New to the board and new to the diagnoses of PDD-NOS for my DD, Abby (4). I have cried many tears since then, mostly related to the guilt I feel for getting so angry with her for being so oppositional about everything. As a first time mother of this only child I didn't trust my insticts (or chose to ignore them). I take my job as her mom seriously and will do everything I can to help her learn to understand herself, appreciate herself, and cherish herself--as much as I do.

Patty from Boston

Patty and Abby 1/28/03

iVillage Member
Registered: 03-20-2003
In reply to: janet07
Fri, 07-13-2007 - 5:19pm

wow - that is amazing, they sound VERY similar!

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iVillage Member
Registered: 04-09-2003
In reply to: janet07
Thu, 07-12-2007 - 11:50pm

Thanks for the welcome Debbie!

It's nice to know that I'm not the only one who has/does struggle with getting upset & yelling. Thanks for the recommendation on that book. Hey, OT, but I discovered we have something else in common. I checked out the Refuge Radio link you had & it's a lot like the station I listen to. I guess that means you are a Christian? Me too. Here's a link to the station I listen to. http://www.air1.com/ You can listen online too.

Janet

iVillage Member
Registered: 03-20-2003
In reply to: janet07
Thu, 07-12-2007 - 10:18pm

welcome to the board, Janet!


I can relate to your comment about not yelling as much once the dx was in place.

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iVillage Member
Registered: 07-10-2007
In reply to: janet07
Wed, 07-11-2007 - 12:44am
Thanks for the welcome Amy! It's good to find a group of others who understand what I go through.
iVillage Member
Registered: 06-02-2004
In reply to: janet07
Wed, 07-11-2007 - 12:13am

Hi Janet! Welcome to the group! It's a great group of very supportive parents who will understand what you're going through. I hope you find it as helpful as I do.

Amy~mom to Natalie (10 yrs.) and Lily (4.5 yrs., pdd-nos, sensenbrenner syndrome)

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