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Anyone's LO diagnosed with cerebral palsy?

iowagirl73iowagirl73 member
in Special Needs
If so, how old was your LO when diagnosed? What kind were they diagnosed with? What symptoms did you see (prior to diagnosis and hindsight being 20/20)?  You can PM me if you'd like.  DS2 was just diagnosed yesterday.
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Re: Anyone's LO diagnosed with cerebral palsy?

  • realisticdreamsrealisticdreams member

    It wa brought up when she was about 4 months old by the orthopedist.  She had been in PT since 2 months for severe torticollis.  She had right ankle inversion, increased tone, trouble tracking to the right, right sided weakness from head to toe.  The ortho said he didn't want to cast her ankle but why hadn't she been checked for CP.  I kind of blew it off, it had been in the back of my mind but I did not know all of the types of CP or that kids with CP could get 'better.'  By better, I don't know exactly what I mean, I just pictured a child who couldn't do anything.  She was about 4 months behind on milestones when her cysts started to heal and now she is a few months advanced (on some things, still behind on others).  I told her PT what the ortho had said and she said, it wasn't her place to tell me, bc she isn't a dr but she suspected that she had CP the whole time.  She said she was fairly concerned when we started coming with all of her issuse that she might of had to be in a chair.  I flipped.  I went right to the pedi for a neuro referall and we went to children's in pittsburgh.  I loved the dr.  We have had an MRI and a clinical diagnosis.  She has had one severe seizure and sometimes she just stares off. 

    Right now her main issues are her increased muscle tone, her right ankle still, the tippy toes ALL THE TIME, trouble eating somethings bc of her tone and the clumsiness.  She falls all the time, if shes tired she can't even be on the floor because she falls before she can get up.

    If you have any questions let me know you can email me at realisticdreams424 at hotmail dot com. 

    She had a prenatal stroke, probably due to my MTHFR & placental abruption so that is why she has CP, it is mild.  Does your LO share similar symptoms?

    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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  • iowagirl73iowagirl73 member
    I sent you an email.  I don't think DS2's is severe.  At least I'm hoping it is not.  The pediatric neurologist wants to do a MRI, lumbar puncture, and blood test and then says DS2 needs a bunch of different therapies.  I'm not too worried about the therapies since he is already in EI.  The lumbar puncture is what is freaking me out the most.  I'm not sure when it will be since I have to get it scheduled tomorrow.  They aren't sure what caused it but I'm assuming it is a lack of oxygen shortly before birth.  There was a clot where the umbilical cord and placenta met and I scored myself an emergency c/s at 35wk, 5d when I went in for monitoring for lack of fetal movement for the 3rd time and LO failed the NST, the acoustical stimulation, and the BPP.
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  • SaucySarieSaucySarie member
    Both of my girls have CP.  They weren't formally diagnosed until 2, but we could see signs of high tone in their legs at about 12 months or maybe a little earlier.
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  • jessicapzaragozajessicapzaragoza
    My son does not have CP, he is undiagnosed but had similar symptoms. We have pursued different alternative therapy for him. A really good program is called Conductive education. This originated in Hungry but there are locations in the United States. It does wonders with the kids. I wold highly encourage you to see if there is a location in your area. Fyi, it is costly but I heard some parents have been able to get their school district to pay for it or have had it subsidized by scholarships. 
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  • realisticdreamsrealisticdreams member

    imageSaucySarie:
    Both of my girls have CP.  They weren't formally diagnosed until 2, but we could see signs of high tone in their legs at about 12 months or maybe a little earlier.

    Peyton's major issue right now is the high tone in her legs.  Do your girls tippy toe?  I'm not trying to intrude but are they walking?  We are fairly certain peyton will be able to walk but will probably need the help of an orthotic device. 

    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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