I need advice, seeing the doctor on Wed

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Registered: 03-22-2006
I need advice, seeing the doctor on Wed
27
Sun, 07-02-2006 - 3:33pm

I’m incredibly unsure about going to the doctor (again) and trying to get some sort of idea why my son does the odd things he does.

In so many ways, ds is ‘normal’ but spirited no doubt. He turned 5 in March.

The main behaviour that worries me to no end is he jumps, hops and skips, back in forth, totally within his own head, like he’s concentrating on something. He sometimes flicks his arms around, jerks them really. He does this in the living room mostly, at home and in the same general way every time. He will sometimes reach down and rub the carpet like he’s feeling the texture and get up and jump some more. He does this over and over. I’ve never seen anything like it before and have a hard time explaining what he’s doing exactly. He doesn’t watch tv all day, he does watch a little before breakfast but we limit it to an hour a day maximum.

This last fall we went to a paediatrician who said ds (4.5 yrs old at the time) was obsessive compulsive. This after talking with us for 10 minutes as well as watching a short video clip. He said he would refer us to a psychiatrist but didn’t think it was necessary.

The ped said we need to distract him when he does it. Which we do and have tried to do since he started this behaviour at 3. The ped also asked if he went to preschool and I said no, right then and there after I said that the ped had his mind made up. He told me to get him in preschool or kindergarten would be an awful shock. I didn’t even have a chance to mention all the socializing he does do, gym class, swimming lessons, friends etc. This year dh and I coached his soccer team and he’s in swimming lessons and we go to the park, library, you name it. I mentioned that I was thinking of hsing he said it wasn’t a good idea. The ped retired two days later.

Both doctors basically ruled autism/aspergers out although I don’t know how they could have ruled anything out with the few minutes they spent with ds.

I’ve been depressed and worried since the jumping started, two years ago. I’m so worried about my little guy. He’s always been a little different, when he was a baby he didn’t chew on anything or put anything in his mouth and didn’t eat solid food until he was 18 months old. He’s had no emotional trauma in his life. He did fall down four carpeted steps onto and carpet and his wrist fractured. I felt just awful about it, did he hit his head as well? I just don’t know and I’m sick with guilt and worry. I’m actually having anxiety attacks (after many years of being free of them) over my worry. Please don’t flame me, I need support.

He loves hanging out with other children usually but is has been rejected and teased because he can be quite intense and loud. He worries a lot and hates surprises and can get worked up easily. Social situations are generally hard because they tend to end in crying and sadness. We’ve had periods of time where this wasn’t the case but we seem to be going through another phase right now, especially in situations where there are a large number of children, the park on the weekend, parties (we avoid parties in general but last Friday we took a chance, it was horrid). High pitched noises send him into instant meltdown. He speaks really well, I’ve had people come up to me in stores and tell me how well he speaks.

I would love to have a diagnosis, something we can work with but I also don’t want to put him through the whole doctor experience again. But, I do think if we had a diagnosis dh could no longer deny that our child is different and that teasing and cruelty at school may be a real problem. He and I don’t see eye to eye about school and in other areas as to what ds might need. Like I want to protect him from the teasing, dh thinks we should try school and if it doesn’t work out we can pull him out. My thinking is why put him through that?

I also don’t want to put him through the whole doctor experience. I don’t have the energy to fight with them over this but deep down I know I have to, for my son’s sake, my own and my marriage. What do I ask for at the doctor? Which specialist? Does my ds sound like other children with Aspergers? I’ve done some reading but am so confused. Thanks for listening, it’s a long rambling post.

edited some typos :)




Edited 7/3/2006 2:58 am ET by ocarina101
iVillage Member
Registered: 03-22-2006
Sun, 07-02-2006 - 10:12pm

Thank you, Jane. I appreciate your advice and taking time to post. :) I feel lucky to be here. Your experience is incredibly helpful! I'm so much more convinced now that I need to see an autism/aspergers expert.

I am not so much against seeing the doctor now, thanks to the replies. It's gone on long enough without knowing how to explain it to others and ourselves and we have had a real spate of bad social interactions and I would like to get a definitive answer so we can start some sort of treatment, help him in the social situations, etc.

I like my gp, I think he will listen to me. When I went in last time, the jumping was the only thing that I was really concerned about. He's always been sensitive to clothes and loud noises, I just thought it was part of his personality. And there aren't many 4 year olds I know that are really well at social situations so I didn't push it. But now, it's not gotten any better only worse. He is not connecting with his peers at all, we need to know how to help. And to search out local support, even if it's only to hook up with others dealing with similar situations.

I coached soccer and after the first day, I had to have dh take all the soccer days off work so he could help, ds was distraught and screamed the whole time. He did extremely well (for ds) after that first night, or else I would have quit coaching. But he never did really interact with the other kids or was in their faces, etc. It was painfully obvious he was suffering. So, it's time.

Dh is coming around, I need his support to get through the doctor process and he is seeing the teasing now and how hard it's been for ds the last little while.

iVillage Member
Registered: 03-26-2003
Sun, 07-02-2006 - 10:14pm

I just wanted to say "Hi and Welcome"! You've gotten some great advice so far.....I wish I had more to offer you. I'm pretty new to this as well - my oldest son, Vaughn age 8, was just diagnosed 6 months ago. I had never even heard the word aspergers until October 2005 and he was diagnosed with it in December 2005. Up until that time, I (along with everyone else) blamed myself for his behaviors......I was a bad parent, I was over-permissive, I was to soft on him, I didn't push him enough, etc......I'm sure you have heard it all as well.

I would definitely keep looking for answers.......Renee gave you some awesome suggestions of where to start if you do want to go for an evaluation.

Good luck.....keep us posted.....we look forward to learning more about you and your family.

((HUGS))
Christie

iVillage Member
Registered: 06-25-2003
Sun, 07-02-2006 - 11:07pm

Hello and welcome.


If we were all sitting around a table while you were telling your story, you would have seen many nodding heads.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-22-2006
Mon, 07-03-2006 - 3:04am
Thank you, Christie. :) You ladies are all so welcoming, I appreciate your kindness and advice, I'm feeling 1000x better than I did this morning. :)
iVillage Member
Registered: 03-22-2006
Mon, 07-03-2006 - 3:14am

Thank you, Paula. I'm so grateful for the advice!

The complete profile, do you mean when he crawled, walked, potty trained type stuff? Dh and I were chatting this evening, and I mentioned how it really isn't one thing, it's the whole package, the eating, the sensitivities and the jumping.

I'm plowing ahead with the doctor. Now that I know who to ask for and that I'm not completely nuts thinking there is actually something not right. I'm not going any where either. I don't have much to contribute but I feel at home here, like I'm finally understood. I will post about my doc appointment Wednesday.

iVillage Member
Registered: 06-25-2003
Mon, 07-03-2006 - 10:29am

By the profile, I mean everything you can possibly think of. As complete a picture of him as you can paint. Here are some examples (excerpts) from an

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-01-2003
Mon, 07-03-2006 - 11:46am

Hi,

My first thought after reading your post was to suggest taking your son to a DAN Dr - (Defeat Autsim Now Dr.) who usually know more about autistic spectrum disorders that most other Dr.s. They will test him for biochemical markers of metal toxicity that most autism spectrum disorder chidlren are showing signs of in their urine and blood. It is becoming more and more accepted that children were and continue to be mercury poisoned from the preservative called Thimerosal contained in most childhood vaccines (most have removed this compound but many still have significant amounts such as the flu shot, and others still have trace amounts, but still considered dangerous by many scientists and Drs).

We had our twins evaluated for ASD when they were 4 - they ended up w/ the diagnosis of PDD-NOS (pervasive developmental disorder, not otherwise specified). This is a dx given to chidren who don't exactly fit the perameters of other dx's, the "catch-all" dx if you will. Another evualation with a child psycologist was about a yr later, and she called them "weird", and a mix of asperger's and adhd. So not all children on, or near the spectrum are the same, or exhibit all of the same syptoms - no 2 are the same. Even our identical twins - one scored on the spectrum at 31, and the other scored a 29. So technically one twin is not "technically" PDD-NOS since he did not score the needed 30 points to be classified w/ the dx. But when we had them tested by a DAN Dr. their test results all showed classic markers of metal poisoning, it was amazing to see this. It confirmed all of their odd behaviors, delays, social issues, sensitivity to loud noises, anxiety, everything. We are now treating them w/ the vitamins and supplements shown to be severely lacking according to their test results, and we began chelation as well - a process that pulls the metal out of their soft tissues (brain and organs) where the continue to reak havock on their entire systems. If you need more info on this, here are some good places to start if you suspect metal to be behind your child's behaviors:

http://www.generationrescue.org/mercury_symptoms.html

http://www.safeminds.org/

http://www.bioprobe.com/ReadNews.asp?article=27

DAN Drs:http://www.autismwebsite.com/ari-lists/danus.html

I hope this helps... hang in there, and keep us posted as to your son's appmnt.

Meg

iVillage Member
Registered: 03-22-2006
Mon, 07-03-2006 - 12:35pm
Paula, this is tremendous, thank you so much. Seeing the part where you describe your son chasing the kids around the playground...I'm crying here. My son does this, he doesn't understand that it's not a game or that they tease him. It's so sad, it breaks my heart.
iVillage Member
Registered: 03-22-2006
Mon, 07-03-2006 - 12:41pm
Thank you, Meg. I thought we didn't have mercury in our vaccines any longer? Are you in Canada, I didn't see any Canadian doctors on the list. I suppose he could pick up mercury from 1000 different things, my breastmilk for one. He only ate breastmilk for over a year, wouldn't eat a single thing but. He's a great eater now but fairly picky and still gags easily if a texture isn't right. Anyway, where did you go specifically get tested? Which province are you in? Sorry for all the questions. :)
iVillage Member
Registered: 06-25-2003
Mon, 07-03-2006 - 12:53pm

I took a report from a few years ago, when Peter

-Paula

visit my blog at www.onesickmother.com