Would this worry you.. — The Bump
Special Needs

Would this worry you..

Morgan had her EI eval yesterday, her prior outpatient PT was kind of a joke.  No model to it, especially no hospital based approach which is kind of the structure I like.  The PT pushed her so hard that she was puking at the end of almost every appointment, and it just didn't seem like a conductive environment for her to learn in.  So after 3 months I pulled her out and set up an appointment for EI eval.

Her language skills were mostly on par, she has some food aversion, and has actually started to lose weight, so they weren't sure what to put down for sensory just yet, because they wanted to wait until after her endoscopy.  She also has no problem being naked but baths she still screams, the whole time.  

Anyways for the majority of her motor skills she was at a 4 month level.  Even at her adjusted age that's still a 50% delay, or 60% I guess at actual age.  I don't think our neuro understands just how freaked out I am that something COULD be wrong in her little brain.  They keep pushing her MRI back and i'm the verge of wanting a 2nd opinion but at the same time, I know that will take forever so I want to see what pedi says at 9 month check up.  

She won't use her arms for virtually anything, her tone is low & they said it's different in her right vs left.  She won't hold her arms up, hold her bottle, or push up on them, obviously something is wrong there.

So, my question is, if you're older LO had a history of CP/other issues galore, would you just 'relax' and try to go with the every baby develops at a different pace, or would you push the neuro to follow your gut instinct?  

 

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


Re: Would this worry you..

  • Go with your gut.  At 8-9 months old, I would be concerned that she is not using her arms since that is typcially one of the first "tools" they figure out (even if it is to hold toys and play with things suspended above them). I'm sorry you are not finding support.
  • image Justinlove:
    Go with your gut.  At 8-9 months old, I would be concerned that she is not using her arms since that is typcially one of the first "tools" they figure out (even if it is to hold toys and play with things suspended above them). I'm sorry you are not finding support.

    Thanks it's so hard when no one else is seeing what you are seeing.  Her neuro sees her for 5 minutes but the EI team was with her for 2 hours.  I think I will call UVA and see how far out they are scheduling and a solo peds neuro practice in Richmond once they open, just to see when they have openings.  Our neuro works with CNMC in DC and I HATE going there (2.5 hours away) for testing.

    She can't lift her arms up at all, they said anything that requires pushing against gravity she isn't doing.  Thanks so much, again. 

    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


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  • I would 100% go with my gut. You are a smart lady and you already realize something doesn't seem right.
  • i would go with your gut.  have you thought of coming up to go to KKI?  not like they are the be all end all but they can get a lot done in one clinic visit because of how they are structured and the variety of docs & therpapists in one place really helps.  they have a CP clinic that is to specifically address multiple issues.
  • image adge1119:
    i would go with your gut.  have you thought of coming up to go to KKI?  not like they are the be all end all but they can get a lot done in one clinic visit because of how they are structured and the variety of docs & therpapists in one place really helps.  they have a CP clinic that is to specifically address multiple issues.

    Peyton goes to the CP clinic at UVA but it's nothing special.  She starts the Spina Bifida clinic at VCU in January and I'm hoping it's better than the CP clinic.

    I haven't thought of going up there just because it's so far away, and with traffic in Northern Virginia, I could literally be hours late, or early, depending on everything.

    UVA didn't have anything until after her next scheduled appointment in February with current neuro.  The solo practice had an appointment in January so I booked that.  I just emailed our neuro and told her what the eval team said yesterday and that I respected her decision if she still wanted to wait for the MRI but that we've learned the hard way not everything is always cut and dry and I truly feel like something is not right.  I basically begged and pleaded with her to understand where I was coming from and that this is NOT normal for a 9 month old.  

    So..now I wait.  I told her we would seek out a 2nd opinion also so I don't know if that will help or hurt her chances of wanting to help us.

    I don't know if our pediatrician would be comfortable ordering the MRI or not, I would say probably not since he can't read it.  

    This really just all around sucks.  

     

    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


  • I would be very worried. Can you schedule an appointment for a second opinion now, just in case the doctor still ignores your concerns at her nine month appointment?
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  • I emailed the doctor this morning and I just got this back,

    "I agree that the PT report is concerning. I will fill out an MRI requisition. Taja will send one copy for pre-authorization and mail out one to you. At this age I prefer to do the MRI at Children?s in DC. Will that be OK?"

    I feel like a weight has literally been lifted off my shoulders.  I told her I would go to childrens if I had too but its 2 1/2 hours away to the main hospital and we have a hospital in town Peyton had one at and they did fine, they sent her up to the PACU after it and everything.

    I realize Morgan's airway is smaller and that a children's hospital would be better but for sake of it not taking 3 months to do and the weather coming up I would prefer our local hospital.  I told her it was up to her though.

    Not comes the fun part, waiting.   

    Thanks so much for the support ladies! 

    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


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