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  1. #41
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    huge hugs xxxx

  2. #42
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    BH-KatiesMum is offline Community Manager
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    just want to give all of you ladies a

    I can only imagine how difficult it is for you sometimes.

    best wishes for your gorgeous little ones

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  4. #43
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    We are making a little bit of progress.
    Started seeing the speech therapist this week.
    She is leaning towards sensory autism.
    Which makes sense but still doesn't explain why he doesn't absorb anything from food when he does eat.

    Ds2 is continuing to gain so I'm not pushing the food.
    He is happy to have just fortini.


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  5. #44
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    Quote Originally Posted by DueInAugust View Post
    We are making a little bit of progress.
    Started seeing the speech therapist this week.
    She is leaning towards sensory autism.
    Which makes sense but still doesn't explain why he doesn't absorb anything from food when he does eat.

    Ds2 is continuing to gain so I'm not pushing the food.
    He is happy to have just fortini.


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    @DueInAugust sounds like a little progress. Just wondering if you've had referral to a pediatric gastroenterologist? Because they might be able to further investigate the food stuff.
    How was the speechie visit?

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  7. #45
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    The speech therapist is the same one I had for Ds1 5 years ago.
    She is lovely.
    It's great to have a plan. We see her again on Friday.

    There has not been a referral to a gastrointestinal pead. I'm going to ask though. I'm getting sick of not knowing what is going on.

    How is your little one doing?

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    have you ever tested him for celiac? it could be something seperate to ASD x

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  10. #47
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    I'm not sure what they have tested for but I'm going to find out this week.
    He was up screaming most of the night again.
    I hate that he won't let me comfort him.
    He had a stuffy nose so even the boob didn't work.

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  11. #48
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    That's good you know the speechie.
    Yeah definitely make a list of questions to ask I think about what they tested for and what the results were.
    You want to know they are thorough.

    Sounds like a long night for you. I know that only too well. My daughter will be 2 I a few weeks. She's doing really well. She's getting new AFOS (leg braces) and we're starting a method of speech therapy called PROMPT. We've also taken the big step of using a sleep medication.

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  13. #49
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    They are saying that Coeliac affects 1 in 40-60 people - when I was diagnosed it was 1 in 120. I think they will find it is even more common than they think it is now, definitely worth a referral to a GI. My DS1 started malabsorbing quite badly when he was 3, his Iron became very low and as a result it couldn't walk, started having trouble breathing and developed a heart murmur, he would just lie on the couch all day long breathing heavily - it was really scary, he would also fall over from dizziness and ended up needing stickiest twice within a few weeks of each other.

    Good luck - I really hope you find answers - we never did find out why DS1 wasn't absorbing nutrients for around 6 months - even with GIs and endos and biopsies etc. I am always scared they missed something - not have a diag suxs!!

    Quote Originally Posted by DueInAugust View Post
    No he isn't mentioning anything but autism.
    It's the dietitian that suggested cystic fibrosis. But she isn't anymore. None of the tests came back with anything other than the cal.
    Pead thinks it's sensory autism problems with food. So the dietitian changed the diet a few times and stuffed it up more.
    I can barely get him to eat. I'm just able to get him to drink his 2 bottles. He would just have boob if I let him.
    I'm having no luck weaning gently. The more I cut back the more he wants it.
    But we got a good weight this week.
    Up to 11kg!

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  14. #50
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    How scary for you, I hope you guys get a transplant asap!

    Quote Originally Posted by TheMadHatter View Post
    Hi ladies I'm not sure if I have a diagnosis or not- but this seems to be the only thread going so hope you don't mind that I join. I have a five week old who has a congenital kidney condition, neither of her kidneys are formed properly- they're basically just cysts. her doctors aren't sure how she managed to survive, I was told before she was born by everyone I saw that she wasn't going to live. She's on dialysis waiting for a kidney transplant in a few years. At the beginning of what looks like a long road of hospital stays, appointments etc. Absolutely worth it for her though- I'm sure you all know that feeling.

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