I need advice, seeing the doctor on Wed

iVillage Member
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

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iVillage Member
Registered: 03-22-2006
Mon, 07-03-2006 - 2:29pm
Thankfully there is hope that this situation will improve. I am relieved to finally know what to ask for when I see the general practioner but also sad. I can no longer just hope his struggles will resolve with age, time, etc. It's just not going to happen. I am also sad it's gone on so long without a diagnosis. Dh always says, he would do better with kids his own age when the older kids tease, mimic him, hide his shoes just to see him cry. But, even though the kids his age don't do these things, they are not drawn to him, there is rejection. He speaks monotone and abrupt, he gets anxious, the kids catch on, pull a face and turn away from him. Ds follows, they run...
iVillage Member
Registered: 04-01-2003
Mon, 07-03-2006 - 7:37pm

It *is* so emotionally draining continuing to watch your child(ren) innocently do what comes naturally to them in certain social scenerios, only to be not doing it "right" or "normally." The other kids can be so cruel, but there are so many others who are kind and coddling too.

We have begun to look at our boys' social "differences" as strenghts - they are very easy-going and very imaginative. By the end of a play date they will have all of the other kids running around on their feet and hands being "Bew-bew animals" or "Piggy ardvarks" ... :)

They are in their own word and thankfully don't notice the bazillion moments of rejection from other kids. They are beginning to more and more as they mature/get better from treatments, but in general they don't see what we see happening to them.

Courage to us all...

Meg

iVillage Member
Registered: 03-22-2006
Thu, 07-06-2006 - 12:48am

We saw the doctor today, well I did, the gp didn't need to see ds, He *has* seen him before, a year ago, but a kid can change in a year. Regardless, I doubt it would have mattered. He wants us to see a psychiatrist and didn't want to send us to an Apserger's specialist because skipping the pshych we may miss something. His words, not mine, not quite sure what it means. What could we miss by not seeing a psych? By then I was a mess, didn't know whether I was going to have a panic attack, vomit or cry. I did end up crying because I was feeling so...stressed is best I can put it.

I've heard about the psych we were referred to from numerous others, he's quick to diagnose adhd and really push medication. I told my gp that and he said ds' behaviour didn't sound like adhd, that the psych doesn't just diagnose adhd wholesale (which I wasn't suggesting, just that he's really quick to do so) and that if I wasn't happy we would go onto to someone else. Which gives me hope. Who knows how long this appointment will take, the ped referral took 4 months.

iVillage Member
Registered: 03-22-2006
Thu, 07-06-2006 - 1:13am

I totally forgot to add, I asked my gp about Aspergers, he said it was possible but rare, I said that ds' behaviour is rare, why is it such a huge leap? He just pushed the phsych again.

The gp agreed to have his stool tested for parasites. My hair dresser (one of the only people I talk to about ds, she has a daughter with ocd) mentioned her nephew having sudden panic attacks and anxiety when he was 7 and she really had to push for parasite testing and the child had parasites and his issues have since resolved. Sounded a wee far fetched to me but I mentioned it anyway and ot my surprise, the doc was in agreement that it wouldn't hurt to check. I will update on any new info. Thank you for being here. :)

iVillage Member
Registered: 03-26-2003
Thu, 07-06-2006 - 1:32am

Then you may want to look into PANDAS too. It is basically OCD and similar symptoms that is caused by some sort of strep infection. The infection may have resolved or may have been hidden and you never saw it. It is worth the test if you are doing a poop one anyway. I didn't even think of it until now.

Would add more but I am pooped and heading to bed. I will say I am not particularly impressed with your GP but at least this time you have a referral. I think it is a waste of time referral if the psych is ADHD happy but you can always get another after like the gp said.

Renee

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iVillage Member
Registered: 03-22-2006
Thu, 07-06-2006 - 2:09am
Thank you, Renee, I will look into PANDAS. My little guy had never had a strep infection that I know of. Not one ear infection or bad sore throat, he's never had antibiotics, but I guess anything is possible and a test wouldn't hurt. I'm not too impressed with my gp either but he's all I have right now and I do find him fairly easy to talk with, usually. Good night, thanks for taking the time to post before bed. :)
iVillage Member
Registered: 04-07-2003
Thu, 07-06-2006 - 12:45pm

It sounds like you've already done this to a degree, so discount my comments if you've already BTDT. My pediatrician also dismissed a lot of my concerns about my kids' behaviors. What finally got her sort of on board with me was when I sat down and wrote out a list of behaviors that were concerning me. I described each behavior and gave examples. I had a fairly long list. When she finally saw the info all together, it was easier for her to see the big picture. My kids' behaviors aren't very pronounced unless you spend time with them, so if you were to meet them, you'd think they were "normal." When you read through the list of their behaviors, though, it's quite apparent that they have some developmental delays. I think another advantage to the list/letter is that the doctor reads it without interruption. I think when we've had verbal conversations, the dialogue doesn't work out the way we planned, we get sidetracked and many important details don't get addressed.

Of course what's been an even bigger aid to me is getting our insurance switched to a PPO rather than an HMO. I no longer have to get the pediatrician's consent for the appointments I know my kids need. The specialists have been sending the pediatrician reports of our visits, so the pediatrician while only semi-on-board previously, is more squarely in my corner in getting help for the kids. Of course it also helps that I kiss up to her and play the "oooh-you're-so-smart" game which keeps her happy with me while I run around making appointments she didn't originally agree with!

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