Special Needs

Not sure if I belong here?

I have no idea if I belong here, but I wanted to see if any of this sounds familiar to anyone. I'm at a loss, and trying to figure out what is going on with my son.

He's 12 months old, will be 13 months in a few days. He cannot crawl, sit unassisted, pull to stand, stand unassisted, cruise, he doesn't say anything other than "mama", he doesn't feed himself, he just started picking up toys, he doesn't wave, or point to things. We started physical therapy last month, and he is making progress slowly. My pedi just seems to think he is a laid back baby, and doing things on his own time.  

He was a repeat C-section at 39 weeks, and had great apgars. I just can't figure out why he is having delays. I apologize if I shouldn't be posting here.  

Re: Not sure if I belong here?

  • Welcome.
    I'm sorry you are dealing with this but please join in.
    It sounds like you are on the right path with him getting PT.
    Random but have you had his eyes checked? Someone I know son was similar and it turned out his depth perception was screwed up and because of that he was afraid to move since he couldn't judge where things were. He got glasses and very quickly caught up once he was able to see.
    May not be your issue but it's something to consider as you move forward.
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  • Welcome to the board! Post away! The things you describe would concern me, too. Is the PT through EI?
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  • Welcome to the board! Post away! The things you describe would concern me, too. Is the PT through EI?

    Thank you!

    The PT is through EI. I asked to start him in it, after my pedi was not concerned.

  • Welcome. I'm sorry you are dealing with this but please join in. It sounds like you are on the right path with him getting PT. Random but have you had his eyes checked? Someone I know son was similar and it turned out his depth perception was screwed up and because of that he was afraid to move since he couldn't judge where things were. He got glasses and very quickly caught up once he was able to see. May not be your issue but it's something to consider as you move forward.

    Thanks!

    His eyes have not been checked. I will mention it to the pedi when we go back.

  • I am surprised the Pedi was not concerned at his 9 month visit. Good that you reached to EI. Did they do an e-val?
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  • newbee36 said:
    I am surprised the Pedi was not concerned at his 9 month visit. Good that you reached to EI. Did they do an e-val?
    I know. At 9 months, he was not able to sit unassisted. I asked for the referral to EI, and they did an evaluation. He is behind in pretty much everything, with gross motor being the worst area.
  • You should think about going to a pediatric neurologist.
  • I will second the eyes being checked.  While my son son did not have those delays, the delays he has/had are impacted by the fact his vision is really bad and it was not noticable to the untrained eye.  He could read letter before age 2 near and far and subsequently began reading words by 3 when the OT realized that his eyes were turning in a bit during fine motor activities. 

    Not that it might be that, but my advice is to rule things out.  We thought DS had possible hearing loss at age two but turned out to be a receptive language delay.  We thought his vision was fine, but it is far from fine.  Kids have a way of adapting and adjusting to things they have never known any other way.  From someone that has BTDT on many things, its better to know than wonder.

     
  • Hi, Welcome. I agree with pp about getting a referral to a developmental pediatrician or neurologist. At 6 months my DS wouldn't reach. We had a 5 month wait for a neurologist but our appt is next week. He has been receiving EI services and it has really helped him.
  • Welcome to our board!
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  • Hi! Welcome, I did not read all of the replys but we personally have had multiple mis-diagnosis (huge things that led to major surgeries) by multiple doctors.  I have learned to ALWAYS follow my instinct, and if one doctor isn't taking me seriously, find another.  At the end of the day we are the only voice for our children and the only ones we have to answer too.

    Our first pediatrician kept telling me, "look at her, she's so beautiful, and normal" 25 procedures & 3 major surgeries later with multiple lifelong diagnosis later..my "beautiful normal looking baby" isn't really a very healthy 4.5 year old, although she is still gorgeous. 

    Neuro is who you should start with.

    Good luck.

    ETA my #2 was born 6 week
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • Sounds a lot like my son. He was delayed and I thought he would catch up. He got older and his progress was so slow... his delays worsened. He is now 2.5 years and he can sit if placed, but cannot get into sitting. He can't crawl, walk, pull to stand or talk. He can stand if placed and balanced and takes steps if I shift his weight and balance him.

    We started with a developmental pediatrician around 10months. He gave us referrals to a neurologist and geneticist. We still have no diagnosis.

    Welcome!


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  • Hi. Welcome. I agree with the others, I'm glad you took the steps to start getting him some help.
  • Welcome!

    I agree with the advice of the neurologist or pediatric ophthalmologist (not optometrist!)
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  • My daughter has motor and speech delays. At 13 months she had just learned to crawl, could wave, pull to stand, but couldn't stand alone to safe her life. As a baby she never babbled and now only says "mama"...she's 2.5. She does know a handful of signs now though. She's very smart though and has great receptive language. She is currently in speech, ot, and PT. She doesn't have a diagnosis although she's been seen by a geneticist and neurologist. I would stay on top of your pediatrician. Mine was very relaxed about my DD as well and I just kept hounding him bc in my gut I knew something was off. Has an MRI ever been brought up? Or an EEG? I'd ask about these things as well as seeing a neurologist. You're your child's only advocate. Just remember that :-)
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  • Sounds a lot like my son. He was delayed and I thought he would catch up. He got older and his progress was so slow... his delays worsened. He is now 2.5 years and he can sit if placed, but cannot get into sitting. He can't crawl, walk, pull to stand or talk. He can stand if placed and balanced and takes steps if I shift his weight and balance him. We started with a developmental pediatrician around 10months. He gave us referrals to a neurologist and geneticist. We still have no diagnosis. Welcome!
    Did the neurologist and geneticist do any testing to rule things out? How is his muscle tone?

  • Update: He can now sit unassisted at 13 months, and waves. We are going to see neurology on Monday 8/18.
  • Welcome to the board! I had missed your OP. I am sorry you're dealing with this stuff, but it sounds like you're on top of things and taking the right steps. Let us know what the neuro says!
    fraternal twin boys born january 2009
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