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Stickler Syndrome

PainterladyPainterlady member
in Special Needs
Hello ladies! I into'd a couple mos ago and usually just lurk but I had a question regarding my newborn and was wondering if anyone could give me some insight. My LO (18 weeks) has a complete cleft palate and has been diagnosed with Pierre Robin Sequence. I feel he might also have Stickler Syndrome as well. I'm going to bring it up at his next appt with his cleft palate team in March, but I was just wondering if any of you had any experience with this? I've done tons of research, but it's nice to connect with parents who've actually been through it. Thanks in advance!
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Re: Stickler Syndrome

  • realisticdreamsrealisticdreams member
    I don't personally but when my 4yo was very young and I used to spend massive amounts of time on google searching for a genetic disorder that could link everything, I came up with EDS, but I never said anything.  3 years later, I brought it up and a neuro agreed and sent us back to genetics specifically for that, and she has it.  So trust your gut instinct, sometimes we have to walk out on the crazy limb!
    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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  • PainterladyPainterlady member
    Thanks for the reassurance! I actually "diagnosed" my LO with Pierre Robin before the specialist did lol. I just have a gut feeling something else is going on with him. Call it motherly instinct or whatever you want, but I'm gonna keep at it until they do testing to prove me wrong. Better safe than sorry!
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  • rsd12rsd12 member
    Sorry I do not either, while I am very familiar with clefts! My oldest son was born with a unilateral complete cleft lip and palate. There is a Facebook forum for families with clefts and I know I have seen this syndrome discussed there. I would be happy to add you if you send me a private message with your Facebook name!
    Boy 1 2/06 - Boy 2 12/07 - Boy 3 9/09
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