Diagnosis not yet known...Need Advice from CP families

Hi!  I am new to the board!  I am a nurse and mother to 6 children, one of which passed away due to a diaphragmatic hernia.  My youngest, she was 9 months old last Monday, is having some difficulty.  The pediatrician says she believes this is neurological and she sees a neurologist this Wednesday.  I am on pins and needles as CP keeps coming up in discussions about my daughter's health.  I was wondering if you'd take a look at these symptoms and let me know your thoughts.  Thanks for all of your time as being an RN myself, I just have to research.

1.  When she was born, I had gestational diabetes treated with diet.  She was a c-section baby, born at 37 weeks because she was big.  Her weight at birth was 10 pounds.  She was in the NICU for a week due to breathing difficulties.  Her stomach was distended and she had a hard time passing her meconium...it took 2 days.  They had an OG tube down her to decompress her stomach.  Ever since, Caydee has not been able to poop on her own.  She MUST have a daily laxative (Miralax) in order to poop or she gets completely stopped up...even if we miss one day or do not give her a full teaspoon.  The pediatrician said she's outgrow this, but she still has not.  She is 9 months and 1 week old.  She currently weighs 19 pounds, 8 oz and is 30 inches long.

2.  She is not meeting her milestones.  She has excellent upper body strength, very alert, interacts with people, smiles, and coos, but she does not use her lower body.  She can not sit up.  She can not stand up even with me holding her arms...she keeps her legs drawn up...they are like spaghetti.  She will jump in her jumperoo, but she mainly bounces her bottom up and down with her upper strength and uses her left foot more than her right.  She will kick and she puts her legs up in the air and pulls her feet into her mouth all the time.  She can roll but can not scoot...she drags herself by grabbing onto to things and pulling herself across the floor.

3.  She eats very well and eats finger foods with no difficulty.  She sleeps pretty good but gets into these fits where she continuously wakes 1-5 times a night either for a bottle or just to cry.  She has a hernia in her tummy that the pediatrician believes will correct itself with time.  When she has these no sleep fits, they last about a few days to a week then she is back on a all night schedule.

Sorry for being so long and drawn out...I just wanted to cover everything.  I know this is not professional medical diagnosis, I just need any advice.  She also has inverted nipples if that has any significance.  Thanks so much again for your time!!!

[Linnyoki]

RN,
  I just signed onto this forum tonight.  I was surprised to see that in many ways, you've detailed my daughter of almost 14months!  :)
  My daughter is adopted....but I know some of her background and delivery.  She was C-sectioned too...and possibly (though not known) some of her issues may be due to her delivery.  I suspect we'll never know.  She was tested chromosonally and everything was normal.  We have yet to do genetic testing, though currently, no one seems to see 'anything really different', other than her 'hypotonia'.
  Just like your DD(daughter), her legs are like 'spaghetti'.  But, I can tell you at 14months, she is 'combat crawling'.....she still pulls herself up (even to standing at times)...just as you've described about your daughter!  At nine months, her 'night issues' don't seem that unusual.  Really, I'm a momma to six as well...and I saw this with more than one of my children in infancy.  :)

  Have you had your DD in any early intervention program?  We put our daughter in such program as soon as we brought her home.  If you've not, I'd strongly suggest that you call them in your area and ask them to evaluate her.  This is no cost---or very little cost to you.
  Just like your DD, mine did the same in her Jumperoo too.  Now, she pulls so hard on the side rungs, she can pull herself sideways.  (The jumperoo was put away, just today because of this!)
  She isn't walking; and I know the walking will be delayed.  But, all fee that she WILL walk.  We recently measured for her leg splints...simply because her legs are weak and she hyperextends her knees.  We've already received a dx of CP from our regular pediatrician.  A specialist has asked for the genetic testing; though everyone agrees there's an excellent chance nothing will be 'found'.  

  My DD has not had such easy eating issues.  Her suck reflex has always been excellent....but co-ordinating her mouth to chew was harder.  She's just now been able to do well with eating 'food' at all.  Don't get discouraged....Certainly she's delayed, but it doesn't sound like it's very serious.
  I hope this helps in some way.  We're still in the 'wait and see' phase too....but we're not discouraged.  :)

Sincerely,

Linnyoki

[kara1000]

it might be Cerebral palsy but it could also be spina bifida this means that when she was born her neural tubes in the lower part of her soine didn't fuse and close off properly this means they are exposed and the exposed nerves cause the lower limbs to become paralysed and the bladder and bowel to be very dysfunctional x

[msmurda]

Have you inquired with your doctor about silent reflux? The crying at night makes me think of it. Sorry I can't be more help. My son's issues deal with weakness in the left arm and not so much his legs. A brain MRI revealed he had a stroke in utero.