Finally going to the doc about DS

iVillage Member
Registered: 03-30-2005
Finally going to the doc about DS
9
Wed, 01-19-2011 - 7:27am

My son will be 4 in April and we have been dealing with some issues since he was about 2. I mentioned them to the ped last year at his 3 yr check-up and she didn't think we had anything to worry about. But things have just become more & more defined for dh & I and we know something is up. I actually posted on this board last year and we were going to get him seen, but then held off. I guess we just kept hoping the issues would go away as he matured, but they haven't.

So we see the doctor on friday & she is going to refer him to someone to be seen & evaluated. Here's my thing. I really think that he has SID. I just don't know if they doctor knows much about it & will know who to refer him to. I know he needs to see an OT from what I've read. So how do I tell her that (if she doesn't know it) without stepping on her toes. I haven read so much trying to figure out what is going on with him and I really think this is it. DH & I went over the check-list last night & he also agrees that it fits him to a tee.

Here are the things he does: hand-flapping, opening mouth & shaking head while holding arms out funny, walking on tip toes, bouncing up & down excessively, hard time going to sleep & wakes up often & early in the morning, hard time settling down, very bad tantrums & a hard time being told "no", scared of lots of things, stumbling over words like he just can't get it out. There are some other things, but right now that is what I can think of. Socially he is fine. He interacts fine with his peers & engages in imaginative play. He is affectionate & cuddly. I have a half brother who is autistic and so I am pretty positive that this is not autism.

Anyway, I know that I came here before & was given advice, but now I am back & we are finally going to pursue this. We need to know for sure what is going on so we can seek the proper treatment & learn how to deal with these things. We love him so much & it is hard to think that something could be wrong with him.

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iVillage Member
Registered: 09-27-2007
Fri, 01-21-2011 - 8:22am

It's your son....who cares if you offend your dr! :)

Jessie Mommy to Gabe (5.8 yrs old ASD, CAS, SPD) and Zane (1.10 yrs old ESD)

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iVillage Member
Registered: 03-30-2005
Fri, 01-21-2011 - 2:15pm

Thanks everyone for your thoughts!! So we had our appointment today. Our pediatrician documented all of his symptoms & our concerns. She asked about family history & such. I told her about my half brother who is autistic and how ds has a lot of his mannerisms. So anyway, she is making us an appointment with a pediatric neurologist & go from there. She said that who she is referring us to is a really great doctor, so I feel good about that... as I know nothing about any of the docs around here. They are supposed to be calling me with the info on when his appointment is. I hope it is soon b/c the suspense of not knowing if this is a real problem or not is just really hard to deal with. I'd rather know & deal with it one way or another than to be in limbo. Thanks again though & I will be sure to update when I know more!!

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iVillage Member
Registered: 03-30-2005
Fri, 01-21-2011 - 2:57pm

Another quick update! Doc just called & has set us up with not just a Ped Neurologist, but with a center that has a team of people who will examine him in order to find the correct diagnosis. I am really happy that this is the path she decided on! I was a little bit worried about him just going to one doctor who might not know everything, but now I feel confident that we can figure this out with a whole team of people looking at him! So, first we are supposed to get a packet in the mail to fill out including questions for us & his teacher to answer. And once the doctors go over that paperwork we will be scheduled to bring him in for the evaluation. I was told it takes a while to get him in initially, but once he is in it isn't a big deal. So I will update you all more once we get the ball rolling!!

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iVillage Member
Registered: 12-12-2004
Tue, 01-25-2011 - 8:50pm

Take those check lists you have been looking at with you, the Dr's will appreciate them. I remember being overwhelmed by the questions I was being asked, and not knowing how to answer them. My version of what was/is normal is distorted by what is normal in my house, which I have learned isn't normal for other kids.

iVillage Member
Registered: 09-27-2007
Wed, 01-26-2011 - 8:02am

Multidisciplinary evaluations are worth their weight in gold.

Jessie Mommy to Gabe (5.8 yrs old ASD, CAS, SPD) and Zane (1.10 yrs old ESD)

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iVillage Member
Registered: 03-30-2005
Wed, 02-02-2011 - 10:25pm

So we got the forms last week... filled them out & they will go back tomorrow. Apparently it could take another 4 weeks to hear from the center & get an appointment scheduled. I was really expecting some type of large questionaire, but there were only a few forms for now. And apparently the first visit will not be for the evaluation, but I guess just to gather more info before the evaluation. Anyway, I'll update when I hear more! I'm just ready to get the ball rolling & it's hard to sit back & wait!!

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