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Well we will be joining the SN board

rslhmgrslhmg member
in Preemies
First, thank you ladies so much for your positive thoughts and supports on my thread asking about autism. We had DD's developmental appointment today and got good news and bad. Developmentally she's a superstar, and he doesn't think she has autism because she makes exceptional eye contact. That's the good news. Bad news, DD had a mild meltdown at the appointment, not quite what we deal with multiple times on a daily basis, but still bad enough to prompt more in depth questioning about stuff I brought up. (I had a list of concerns ready to go). He suspects either a mood or sensory disorder, but most likely a combination of the two and referred us to see a pediatric behavioral specialist for an in depth evaluation. He told me to make sure to keep as detailed notes as possible about the concerns I brought up and any others that may arise, and to be prepared to no walk away with a diagnosis due to her age. He said at her age they don't like to diagnose mood disorders since there is still alot of development happening, but at the very least they will give us things to work on and keep her monitored until she gets to be around 3 and then they will give us an actual diagnosis if they haven't already. So my mommy instincts were correct that something is wrong, and I'm honestly kind of relieved. Even if we don't have a cut and dry answer, its nice to know we are working in that direction. At some point this week or next I'll go ahead and intro on the SN board, I'm just still wrapping my mind around what we were told atm, just wanted to update you ladies since this is where I posted my concerns for DD initially.
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Re: Well we will be joining the SN board

  • Kelly_12Kelly_12 member
    This is good and bad you're right. It's nice to feel validated and know you're gut was right, but unfortunately not something you wanted to be right about :(
    Sounds like you may have a bit of an uphill battle for a little while, until you can really know what you're dealing with. I'm sorry for this, not what you wanted to hear I'm sure. Remember to rely on your support network and get on that SN board as I'm sure those ladies are as lovely and supportive as all the gals on this board. We know we need each other.
    Goodluck and chin up!
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  • punky917punky917 member
    It is good that you got some answers that you needed and that the doc is pointing you in the right direction to get more answers. Good for you for listening to your mommy instincts! That is great that she is developmentally doing well. There is so much more development that will happen since she is so young, so the early interventions will definitely help. How is baby #2 doing?
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  • Pips09Pips09 member
    It's good that they are listening to you and helping you get some direction and help. Hoping that the specialists can give you more info and help you out. 
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  • LaciJaxxLaciJaxx member
    Awwww ... Hugs!!! I'm sure this is rough but it sounds like you're on the right track. It's times like this that we have to focus on the positives enough to overshadow the negatives. Keep your chin up!! And keep us posted.
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  • brachysirabrachysira member
    I'm sure SN will be helpful, but you don't have to leave here!  Uncertain diagnoses and behavior issues are totally preemie things too.  I'm glad you're getting lots of evaluation and making progress.  
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  • rslhmgrslhmg member
    @punky, I have my ob appointment this afternoon so I'll have updates on baby #2 later today, I've been feeling really well aside from worrying about DD so I expect it will be all good news. And thank you ladies, I plan to stick around here too, since this is our "home" board, but I did go ahead and intro on the SN last night. I ended up not being able to sleep well, the initial relief of knowing I wasn't imagining this stuff and getting on track for hopefully making things manageable wore off and I started over thinking and worrying. I'm not sure how well I'm going to handle waiting for her eval, I know we won't have a real answer from that either, but we will have an idea and some direction of how to manage this stuff which feels a lot more productive than nothing at all. Aside from her meltdown in the office yesterday, we have had a couple of exceptionally good days, I'm trying to relax and enjoy having my baby back for as long as the good days last. She's not typically very affectionate, affection seems to be the only obvious trigger for her meltdowns, but she has been very cuddly and loving since we got to the dr's office yesterday. She even played with her cousins yesterday, which was a HUGE shock. We went to my sisters after to eat since we got out of the dr right around time to eat, I expected it to a be an eat and run visit because of how DD normally reacts, but she was running and playing and loving on everyone. She even tried to steal her 4 month old cousin from my sisters arms lol. I am really hoping now that we are working towards something answer wise that we can start having more days like this.
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  • rslhmgrslhmg member
    Well, we called yesterday to try and make the appointment for dds eval, they recieved the referral, but told us she's been wait listed, they wont have appointments opening for almost a year. They said we could see if her developmental dr wants to refer us elsewhere, and they will keep us on the list, so now we're waiting to hear back from the developmental dr. I'm a little frustrated, we could really use some guidance now, but at the same time the closer she is to 3 the better our chances of a clear diagnosis. I did contact our ei program, the offered to come evaluate her, but said they only offer services if there is a developmental delay, which we dont have. I have no idea what to do now.
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  • LucyRicardo3LucyRicardo3 member
    edited December 2013
    EAMartin1004 said:
    while every diagnosis comes with its own stresses, IMO there is nothing worse than the unknown. I am glad you are starting to get answers. {hugs}
    i totally agree. (hugs)

    reading your reply.. i'm so sorry how frustrating that could be.. hope that someone, somewhere realizes what your LO truly needs and you're not stuck in this limbo another year :(

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