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  1. #21
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    I wanted to get pediasure but dr and paed said no.

  2. #22
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    Quote Originally Posted by Nafsika View Post
    I wanted to get pediasure but dr and paed said no.
    Maybe your little one didn't need it?

  3. #23
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    Quote Originally Posted by Tamtam View Post
    Oh. No wonder you are worried. Are there any other areas that were cause for concern?
    As you can from my posts my DD does have a genetic condition which causes poor feeding and growth. Pediasure is our life saver.
    Yes I have mixed feelings - I want answers but if there isn't anything to find that's a good thing. We are waiting genetic testing & more blood test results. Developmentally seems ok - was slow when younger but since walking things have 'clicked'.
    It's been a tough road.
    I'm glad pedisure has assisted and been a life saver. Can I ask what condition your daughter has?

  4. #24
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    Of course.
    She has a rare genetic syndrome called Smith-lemli-optiz syndrome. She's considered mild. She also has a severe heart defect.
    Her weight and growth were a constant concern. .for her specialists and dietician and therapists. But I just knew I could get her to eat. It was very full on. Still is. But at around 12 months I requested pediasure. They were reluctant. But I said to Dr's that that they would put that down a feeding tube if she had one (which we were booked in to have - a mic-key button)... but I got her drinking it.

    At the end of the day for me I weigh up the pros and cons. And now at 3 and half she's 50th percentile for weight and 30th for height.
    She's NEVER made the growth charts until about 12 or so months ago. So yeah.

    Waiting for genetic testing is so stressful. I hope it's all clear for you. Here if you need to chat.

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    Littlemisshappy  (17-04-2016)

  6. #25
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    Quote Originally Posted by Tamtam View Post
    Maybe your little one didn't need it?
    She's still struggling to gain weight and is on the low percentile and said she will be short like me.

  7. #26
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    Quote Originally Posted by Nafsika View Post
    She's still struggling to gain weight and is on the low percentile and said she will be short like me.
    My GP recommended it to us -
    You can just buy it at the chemist!
    Maybe speak with a dietician ( get a referral ect) ??

  8. #27
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    Quote Originally Posted by Tamtam View Post
    Of course.
    She has a rare genetic syndrome called Smith-lemli-optiz syndrome. She's considered mild. She also has a severe heart defect.
    Her weight and growth were a constant concern. .for her specialists and dietician and therapists. But I just knew I could get her to eat. It was very full on. Still is. But at around 12 months I requested pediasure. They were reluctant. But I said to Dr's that that they would put that down a feeding tube if she had one (which we were booked in to have - a mic-key button)... but I got her drinking it.

    At the end of the day for me I weigh up the pros and cons. And now at 3 and half she's 50th percentile for weight and 30th for height.
    She's NEVER made the growth charts until about 12 or so months ago. So yeah.

    Waiting for genetic testing is so stressful. I hope it's all clear for you. Here if you need to chat.
    Thank you for sharing!!
    We were advised pedi sure about 12-15 months of age. Why were they reluctant.. So worth the less invasive method first right? That's my GP's opinion.

    You and your daughter have done so well now being on 50th % for weight and 30th% height!!
    I have a daughter 3.5 yrs too ( well nearly turning 4)

    Were there other issues you noticed for your daughter at about 1.5yrs? ( other than growth)
    Hope all ok with her heart too - must be so stressful x

  9. #28
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    Quote Originally Posted by Littlemisshappy View Post
    Thank you for sharing!!
    We were advised pedi sure about 12-15 months of age. Why were they reluctant.. So worth the less invasive method first right? That's my GP's opinion.

    You and your daughter have done so well now being on 50th % for weight and 30th% height!!
    I have a daughter 3.5 yrs too ( well nearly turning 4)

    Were there other issues you noticed for your daughter at about 1.5yrs? ( other than growth)
    Hope all ok with her heart too - must be so stressful x
    She was pretty much diagnosed at birth - as we were prepared for heart issues and surgery. The Smith-lemli-optiz was diagnosed at 4 weeks old. ..and later confirmed through full micro array etc.
    So intervention has been happening since the beginning. She has been delayed in all areas pretty much.
    But she walked at 20 months ... eats orally etc etc. So yeah. This is her.
    Attached Images

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  11. #29
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    Quote Originally Posted by Tamtam View Post
    She was pretty much diagnosed at birth - as we were prepared for heart issues and surgery. The Smith-lemli-optiz was diagnosed at 4 weeks old. ..and later confirmed through full micro array etc.
    So intervention has been happening since the beginning. She has been delayed in all areas pretty much.
    But she walked at 20 months ... eats orally etc etc. So yeah. This is her.
    She is gorgeous xx

    Just had a read about the syndrome!! Thought she would be diagnosed early with heart issues!

  12. #30
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    No. No one had any idea. In fact now they are still shocked about her diagnosis and how well she is doing. She's a bit of an anomaly in the Smith-lemli-optiz world. Which I'm very blessed for.

  13. The Following User Says Thank You to Tamtam For This Useful Post:

    Littlemisshappy  (17-04-2016)


 

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