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Thread: Edwards syndrome; sucking reflex loss

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    Default Edwards syndrome; sucking reflex loss

    Hello, our 7 month old son being diagnosed with edwards syndrome have lost his sucking reflex though on his 4th month it slightly started to develop, but in a month after that had dissapeared again. May someone give an answer or advise: is it possible to get it back somehow? Maybe there are some methods to develop an ability to suck again?

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    Hello, and welcome to the group. I'm not familiar with Edwards syndrome. My daughter has down syndrome and moyamoya (caused strokes). But i have a lot of experience with different therapies. Does your son get physical therapy, speech therapy and/or occupational therapy. All of these could help with feeding issues. Especially speech and occupational. There are so many ways to strengthen the muscles needed for sucking and for speech. This is a great group full of experience and great support.
    Mary Grace

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    I replied to your other thread with this

    I'm not sure what the fressreflex is but I had PT via early intervention for my reflex issues. A therapy called CME is supposed to be good for reflexes. I'm not sure how early in age a baby can start CME. Edwards Syndrome is Trisomy 18 yes? I follow this blog about Trisomy 18 here http://noraroseyusko.com Look at the older posts where they mention Nora's development etc. It might provide some answers.
    Mary Grace is right. OT can help with sensation issues and PT and speech help with movement and reflexes. My PT told me I gained control of my reflexes via the sessions…at least to some degree. btw here's another blog that could help http://www.trisomy18.blogspot.com
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Default Welcome Firefall81

    ((((((firefall81))))))~



    I'm so glad that you joined our group. You are among friends here, who understand well what you're experiencing, all of your worries, fears, questions ~ everything. So, please feel free, and do not hesitate to ask any and all questions or share with us, as that's why we're here ~ to support each other.

    I think most, if not all, of us will suggest therapy for your son. And, as it has been for most, if not all, of us, that means life-long therapy of some kind. The earlier you begin therapy, the sooner your son will receive its benefits.

    My son, Jon, who is now 46, was 9 months old, when his pediatrician noted significant developmental delays. Jon was tested, and then he entered an Early Childhood Intervention Program. That program worked with him 4 hours/day, and then I was taught how to work with Jon at home. Michael was 6 months old, when his delays were noted, and he entered the ECI program shortly thereafter with Jon. And then, I became their therapist at home.

    I remember wondering how my infants could benefit from therapy. They were only babies. But they began to thrive and make progress, and I realized how important therapy was for them and for me. Every moment became a teaching moment, which I'm sure contributed to their development through the years.

    You are on the threshold of an incredible journey with your precious son. He will teach you as much, if not more, than you teach him. You will learn complicated medical jargon, and understand it. You will meet many doctors, specialists, therapists, nurses, and other medical personnel, and you'll learn how to tell your son's entire history in less than 5 minutes to all of them. You will know your son better than anyone else, and you will be his Team Leader. You will advocate for him. You will love him with all of your being.

    And you won't be doing all of this alone. You'll need a good support system. You have one right here with us. Cultivate a good support system in your circle of family and friends too.

    Please keep us updated on you and your son.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thany you for such a warm invitation, Rose
    We were wondering if you maybe know a specialist (neurologist) that could give a counsel according some details connected to our issue? Also we are intereted in Early Childhood Intervention Program and how we can be involved in it living in Russia?

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    Lightbulb

    ((((((firefall81)))))) ~

    Since I live in the U.S., I have no idea what is available in Russia. But I did some Google searching and found the following:

    Early Intervention Institute ~ St. Petersburg:

    http://www.eii.ru/en/

    Early Intervention Aid in Europe:

    http://www.eurlyaid.eu/projects/docs...tervention.pdf

    Google Search results:

    https://www.google.com/search?q=Russ...utf-8&oe=utf-8

    I also cannot advise you on neurologists in Russia, but I would guess that a Pediatric Neurologist would be the preferred specialty. Does your son have a Pediatrician? If so, that doctor would be your first resource for referrals to specialists. However, a neurologist isn't likely to be the person to provide you with hands-on guidance in caring for your son. This is the role of therapists.

    In your shoes, I would begin by contacting the St. Petersburg Institute and ask them for guidance/assistance in locating a program or therapists in your area.

    I hope that this is helpful information for you. Please keep us updated on what you find out.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    You say you are in Russia so I thought this might help you. http://www.overcoming-cerebral-palsy.com The woman who runs it is in America but was born and raised in Russia with Cerebral Palsy and received various neurologic and therapy treatments in Russia. Perhaps you can contact her. She helps people with all physical disabilities.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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