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Anyone who's LO had a developmental delay, pls come in (long)

jenn2929jenn2929
in Success after IF

DS is a bit behind in his fine and gross motor skills at this point even for his adjusted age (DD is right on track for adjusted age).  He's at about four mos right now and is actually almost 7 1/2 mos old.  We have the county coming in to work with him.  At first it was just an OT, but she brought in a PT who will start tomorrow. It seems that his brain and his movements just aren't working in tandem they way they should be at this age. 

LO's were 6 weeks premature and DS is starting to get over terrible reflux.  We saw a GI specialist who put him on a special formula (Neocate) and that seemed to help a lot.  But he is super stiff still b/c every time he was in pain from the reflux he would stiffen up to deal with the pain.  Well now he deals with any sort of pain by stiffening up and now he's got muscle memory from that, so he's very often stiff, even when he's not in pain.  But he has his good days and bad days.  

In addition our nephew has CP and when we were w/ IL's over the weekend they said they saw some of the same traits in DS that they had seen in our nephew.  I knew this, but didn't really want to believe it, but when IL's said it, I knew we needed to get it checked out.  So we had a consult with pedi yesterday and she doesn't think he has cp, but did refer us to a pediatric neurologist to see what she says.  I am waiting for a call back about an appt.  Pedi said she wants to see preemies caught up by 2 years.  

That's the background.  I guess what I want to ask is to hear other's stories.  To hear that if your LO's had a developmental delay that they caught up and everything is fine. Im kind of going crazy right now with worry, which I know doesn't do me any good.

 

If you've gotten this far, thank you! 

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Re: Anyone who's LO had a developmental delay, pls come in (long)

  • preheatedovenpreheatedoven member

    Our LOs are 6 months, but about 4 months adjusted. Right now they are on track, but we did have them evaluated with Early Intervention. My DS is also on Neocate (or as we should say, gold dust!), but my DD had major reflux and was a bit behind because of it. For instance b/c of the reflux she was always in pain so she smiled really late. She also was late in things like 'standing' while you hold her b/c of the pain from reflux.

    Is your DS on reflux meds, or did they just change the formula? For DD, the meds for reflux have done wonders, and are A LOT less expensive as Neocate. DS, on the other hand, has a major milk-protein allergy and Neocate is the only thing he can tolerate. 

    Okay, I feel like I haven't answered your questions, but wanted to share our experience, HTH! 

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  • JustaKidAtHeartJustaKidAtHeart
    Ethan had a delay.  We got him caught up with EI (OT and PT).  He also had reflux and was really stiff. We canceled treatment because we were told he wouldnt qualify anymore.  Now we are having him evaluated again with the evaluator looking for CP.  I know it hurts to hear.  HUGS.
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  • weemodinweemodin

    I could have written this word for word when my DS was 7 months old.  He also was a twin, also had severe reflux, and was an extremely stiff kid because of the pain from the reflux.

    He didn't sit unassisted until 8 months, mostly because he hated to bend at the waist because it caused him more pain.  He crawled at 11 months or so, and fianlly pulled up and could get himself into a sitting position from his stomach near one year.  The therapists were always concerned that he never could grab his feet because he was so stiff.  Also, he had severe torticollis because of the reflux and stiffness.

    He was walking at 13 months, much to our surprise and happiness!

    Once we finally really, really, really got his reflux under control, it got better.  We had to up his prevacid dose to 2 pills a day, if I remember. 

    Today, he's still not the world's most flexible guy, but at just over 2, he's pretty coordinated and is fairly advanced as compared to his peers with his gross and fine motor skills.  He does have some minor speech issues, but those are common with male, bilingual twins.

     HTH!

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  • jenn2929jenn2929

    Thank you ladies!  I'm so glad to hear I'm not the only one going through this.  DS is on Prevacid - 30 mg a day (the same as DH!)

    Also let me say that when he's not in pain, he's the happiest, most giggly, smiley kid!  That does put my heart at ease to a small extent.

    It means a lot to me to hear this from you all.  Thank you! 

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  • mhopmhop
    DD#1 was also a preemie with severe reflux.  She has a motor delay and had a language delay that has resolved with therapy (she made 22 months developmental improvement in 12 months of therapy).  Her fine motor skills caught up in less than a year of therapy and she was dismissed from OT.  She was a late walker (18 months) and continues to slowly progress (for example she's 2 and 1/2 and falls frequently, can't jump or walk up stairs without holding on, etc).  Despite the gross motor delay, she is bright, funny, and generally adorable.  I definitely recommend EI and therapy as they have made huge differences for her.
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