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dwar.fism

Bat_Ish_CrazyBat_Ish_Crazy member
in Special Needs

I posted here a while back about my daughter ... I DD'd when I realized the my daughters picture from my siggy was showing up in google image searches for hyp.ochondrop.lasia, which is the disorder I had questions about.

Back then, I was just concerned about her growth and doing (admittedly) too much reading online.  

We now have confirmation that our daughter has a skeletal dysplasia - after a ton of drama with doctor's completely disregarding my concerns, we did a skeletal survey that shows differences in her arms, legs, and spine.

Now we are moving onto the genetics testing ... and my money is still on h.ypo.  I don't think there are many dwar.fism momma's on here, but I thought I'd stop in and say hello again.  I felt very supported in my prior post. 

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Me: 28, DH: 33
Conceived DD in <1yr w/o assistance
TTC#2 since 11/2013
DX: PCOS
Benched pending conf of Rubella immunity
Next Cycle: CLOMID round 1

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Re: dwar.fism

  • KYmama9286KYmama9286 member
    Welcome! My son has genetic growth disorder that is technically a form of primordial dwarfism (Russell Silver Syndrome- it is one of the few proportionate types of dwarfism though he does have limb length discrepancy). 
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  • Bat_Ish_CrazyBat_Ish_Crazy member
    Hello!  I've seen you around here before.  Your kids are absolutely adorable.  I have read a bit about Russell Silver Syndrome ... and far too many other syndromes, disorders, and dysplasias.  I'll be glad to *hopefully* get a diagnosis soon and get this drama and stress behind us.

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    Image and video hosting by TinyPic

    Me: 28, DH: 33
    Conceived DD in <1yr w/o assistance
    TTC#2 since 11/2013
    DX: PCOS
    Benched pending conf of Rubella immunity
    Next Cycle: CLOMID round 1

    Report Reply
  • realisticdreamsrealisticdreams member
    I wondered what happened to your post, and sometimes google is really bad about plastering stuff all over the internet that you wouldn't think it would.  

    I remember replying to your post, i'm glad you pursued it and got your answer.  

    Welcome back!
    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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  • Bat_Ish_CrazyBat_Ish_Crazy member

    I'm glad I pursued it as well ... For every second I spent knowing something wasn't right, I spent another second telling myself that I was crazy.

    Thanks for the warm welcome!  :) 

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    Image and video hosting by TinyPic

    Me: 28, DH: 33
    Conceived DD in <1yr w/o assistance
    TTC#2 since 11/2013
    DX: PCOS
    Benched pending conf of Rubella immunity
    Next Cycle: CLOMID round 1

    Report Reply
  • JaysonandKristinJaysonandKristin member

    My cousin's daughter is 8 months old and has cartilage hair hypoplasia.  She also has an autoimmune deficiency for which she is currently undergoing treatment.  

    She is just the cutest baby!!  I have yet to meet her because she lives far away and has visitor limitations, but I hope to meet her soon!! :)

    Being an advocate for kids can be super difficult sometimes.  I am so happy that you have some validation to your suspicions.  Sometimes that haunting feeling can eat you alive and cause anxieties.  I worry about things with my son as well, but have never had anyone question me -- I like to think I'd pursue it until I got definitive answers.  :)

    Welcome back to the board.  I look forward to seeing more of your posts!!  

    Prudence
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  • chelsealushchelsealush member
    Hi there! My daughter has osteogenesis imperfecta type 3 which is also a sort of dwarfism. A 2 years old shes 25" and 17lbs and hasn't grown since last year. She's suspected to be around or less then 3' 6" tall as an adult 
    mom to baby Zoe, DX Osteogenesis Imperfecta type 3, over 50 fractures since birth, 4 surgeries, uses a wheelchair, severe sleep apnea, mild hydrocephalus, beautiful blue eyes.
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