My 22 month old son just diagnosed with Type 1 Sticklers. He has heart problems
that required open heart surgery. Mild to Moderate Hearing Loss and Severe
Myopia with a enlarged optical nerve. We are on high alert for retinal
detachment. We are also watching his feet as they are turning in a little bit
but they think he might grow out of it. We just got word that neither his
father or I have sticklers so it was spontaneous which still makes me uneasy. I
have a embryo that I was awarded in the divorce and I am concerned about the
embryo having sticklers. I still have lots of questions and still have a hard
time since this is a new diagnosis.
April
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April
waiting for spring
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\/\/\/\/\/Ethan\/\/\/\/\/
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My 22 month old son just diagnosed with Type 1 Sticklers. He has heart problems that required open heart surgery. Mild to Moderate Hearing Loss and Severe...
April, Sorry to hear that your son was diagnosed with Stickler's syndrome. My son has the condition. At birth, it was found that he had a hole in his septum...
April, My 4 month old son just got diagnosed with sticklers. He has severe myopia and the flattened face. The Dr. said his X-rays are typical of Sticklers...
It's interesting that you say there is shortening of the long bones. Our daughter (16) has what would fit that description along with a non-fluid gait. Our...
Lori My 2 year old has always had the similar problem. Ever since he was born, I have had to buy tops that were larger and he still has a tiny bottom. Hes 2...
It is something people always mention when they see our son- especially dr.'s and nurses- that Ben has a long torso and shorter legs- our geneticist told us...
My daughter is more like an upside down lightbulb! (I'd never let her hear me say that) She has a tiny chest and shoulders and unusually large hips. She...
Hi folks, I have short arms and legs, in fact I am only 4 foot 8", my body is the correct size for an adult.  I have to have at least a foot taken of...
You're right! Capri's look like regular pants. We adopted our daughter so we really don't know how tall she could get. Yet she's 16 and already 5'4". She's...
wow -- that is early to get a diagnosis isn't it? Glad it was diagnosed early though! Ethan's skeletal study was normal and he is really tall for his age -...
i guess it is early when we don't have any family history of sticklers that we know of. the day after Ben was born our Dr. told us that he didn't look right....
I am glad to hear that your son was spared open heart surgery.. It was the toughest most hardest I had went through and since my husband and I were separated...
April, Though my son's hole in the heart improved entirely on its own as did his hearing, we still had to endure countless procedures for him. Those involved...
hi! i have 4 kids,a son 25, daughter 23, another daughter 21 and a son 22... 3 of them have sticklers syndrome, which they inherited from their father, who was...
Debbie, You certainly have experienced much hardship due to Stickler's. I'm overwhelmed by what you've gone through. My son is in the same age range as your...
hi, i'm definitly going to get your book... my oldest daughter, laura, still has some issues, fortunatly she'seither "grown out of" or finally learned to...
Debbie, I'm glad that my memoir has caught your interest. I'd love to hear what you think of it. My son, Shaun, was born with a cleft palate of the soft...
mario, katie had hard and soft palate cleft, her father had no palate at all and had many many surgeries ( he was born in '58) his parents fed him with an eye...
Debbie, Katie and her dad really had a serious case of cleft palate it seems. I'm glad that speech therapy helped Katie. My son received therapy as well, but...
good morning, katie's scoliosis is mild, my spine looks like a question mark in x-rays, they found it when i was 18 and it was too late to do anything about it...
Debbie, Well, I'm glad that I won't be ruining the story for you with all the disclosures I'm making. In our case, we had never heard of Stickler's syndrome...
hi, katie had the tongue adhesion because of the pierre robin, her llower jaw was just too small for her tongue to lay comfortably in... her father had had the...
Debbie, Thank you for explaining that. I'm always keen on learning new things. Shaun was still young when surgery to extend the flap was suggested. But, seeing...
Hi, My son had a trach tube put in when he was 3 days old because of his tongue. He kept swallowing it and it would affect his breathing and at the same time...
Don't all of you find it odd that we're told this is a 'common' syndrome yet doctors know nothing about it? I'm always having to educate our doctors and nurses...
hi lori, i know what u mean, i used to get so frustrated when katie was little, we'd go to the cleft palate evaluation every year in casper wyo. and there was...
It's crazy! My family goes to the University Hospital where Dr Stickler discovered Stickler Syndrome and yet most of our doctors have not heard of it either. ...
hi janine, that is crazy! i think i've only had one dr, the opthamologist that i have now, who knew exactly what it was when i mentioned it to him, i was...
Lori, Yes, it is strange how most doctors are not aware of Stickler's syndrome, given that it seems so prevalent. I can understand how that might have been the...
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