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  1. #21
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    Hello Ladies.
    I have just found this thread.
    I am also in this position. DS2 18months Is FTT and they are looking into autism and possible Cystic Fibrosis or Cows protein and grass allergies.
    We have been referred to a ST and Dietitian.

    Waiting on test results for a few things but in the meantime they have us on a dairy free diet and have put his on neocate (sp?)
    He was on Pediasure and Fortini which I thought were working fine but the dietitian wasn't happy.

    Sorry for the rant I'm at my wits end with this latest change.
    I'm still breastfeeding so I have had to cut everything out of my diet also.
    Now he wont eat anything.

    I hope you are all closer to your diagnosis. The wait is killing me.

  2. #22
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    It doesn't look like people post in here much these days. But it's good to get it off my chest so to speak as I don't really ever talk about it with anyone apart from doctors and my DH, even though he doesn't like talking about it really. And nobody else in my family or friends really knows what is happening with my 20 month old DS.

    We are currently waiting on diagnosis looking into autism, speech delays, walking and standing delays, breathing and sleeping issues, different kinds of allergies, eating and swallowing problems, maybe tongue tie or cleft pallet, hearing issues... The list is clearly endless at the moment and so very overwhelming especially as no one in our real life really knows the extent of problems our DS is faced with at this point. Feels good to write all that down and out at last even if no one is reading.

    We are currently waiting on an appointment for the hearing clinic so he can hopefully get grommets.

    Then a hospital appointment at Royal Children's hospital in Melbourne.

    Speech therapy and Hydrotherapy.

    Hopefully all those things make life easier for my little guy and us...

    I agree with above poster, hope everyone is closer to getting diagnosis. It it an anxious wait...

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    Sookie Stackedhouse  (04-10-2014)

  4. #23
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    Hi zoz.
    I'm still here and all also waiting it out.
    It sounds like you are going through an awful lot. We are still no closer but are making little bits of progress.
    If you want to chat feel free. It's good to vent.

    Sent from my GT-I9300 using The Bub Hub mobile app

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  6. #24
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    Thanks DueInAugust. I think I remember you from Due in Jan 2013 posts? So your DS was born January 2013 right? Although by your post he is 18 months, so that can't be right?

    Anyway yep it is a bit of a painful waiting game to see what happens, and watching everyday that he's still so behind is a big old worry. Although usually try and focus on his good days and the nice things he does really helps.

    I've particularly found it hard to see others with same age babies meeting all their milestones and doing things my DS should really be doing too at that age. I know we should really not focus on others though and know that children take their own time accomplishing things and milestones. Although I know he does have problems.

    Thanks for replying though DueInAugust good to chat...

  7. #25
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    Lol yes your right Ds2 is 21 months now.
    I get so caught up in it all I forget the months go by.
    I had to stop going to mothers groups to stop comparing him to the others. They were all so much younger and doing things I had not seen my boy even try.
    It's hard not to but I found myself getting angry at them for talking away like nothing was going on. When I just wanted to yell at them to give me a break. To stop talking about the first times.
    So now I have a few close friends that I will go see one a month or so. Both have small boys under 1. But they understand and don't have to treat us different.


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  9. #26
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    It's so hard not to compare. I do it with my dd a lot. But a wise friend once told me. ... Concentrate on what she can do not what she can't do.
    It's easier said than done though!
    Hugs to you.... waiting on diagnosis. .. Then coming to live with it is so hard.
    My daughter will be 2 soon. .. And is really been 2 years of living in a fog about it all. I don't know what is like for others but it's really taken me 2 years to let the fog lift. .so to speak... And find my routine or groove.
    I'm always here if you need to chat. xo

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    Sookie Stackedhouse  (06-10-2014),zoz  (07-10-2014)

  11. #27
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    Yes tamtam it is a fog. Isn't it.
    I had a visit from my born to learn worker today and checking on his milestones.
    I hate her! Why can she bit steep back and see I can't make him do the things that are expected at this age.
    She is giving me handouts for his age and I keep asking for his level. I can't help him with it if they keep pushing him.
    I'm about to tell her to stick it.
    Still waiting on the ST to get in touch.
    I hate that I have to wait so long.
    He wants to learn. I want to teach him but I don't know what or how. Where do I start.

    Sorry bad day. Rant over.

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  12. #28
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    Can I join? I have two kids who are having health issues that have been long term and not diagnosed and now my DS4 has begun having chronic belly pains - he also has a speech delay but we are hoping because of glue ear because we can hopefully fix it then.

    DS2 who is on the spectrum, has severe sensory processing disorders and severe speech dealy is now 5 and has being seeing a Paed GI since he was a baby, he has chronic severe belly pains, bad stools. history of severe reflux, ulcers in his esophagus from his years of severe vomiting, was tested for CF because of pancreatic deficiency but came back negative, and chronic gastritis (which is very unusual in non alcohlic babies-he was 18 months when they found that on his biopsies) and still no answers we are going to Westmead on Monday for the first time - hoping a fresh eyes may help.

    The other DS3 has had severe and chronic joint pain that comes and goes since he was 2, he is now five as well. He has seen heart and eye specialists OTs and physios and still nothing has been found, he has a positive ana blood test...but still no answers. I have autoimmune diseases so I wouldn't be surprised if it was something autoimmune.

    Not knowing is a horrible feeling - how can you help or fix it or treat it - when no one knows what is going on?

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    Sookie Stackedhouse  (17-10-2014)

  14. #29
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    Are they going to do a endo and some biopsies, there are a fair few diseases that can cause food aversions, but usually they have to get in there and have a look. DS2 had an endo at 18 months.

    Quote Originally Posted by DueInAugust View Post
    Hello Ladies.
    I have just found this thread.
    I am also in this position. DS2 18months Is FTT and they are looking into autism and possible Cystic Fibrosis or Cows protein and grass allergies.
    We have been referred to a ST and Dietitian.

    Waiting on test results for a few things but in the meantime they have us on a dairy free diet and have put his on neocate (sp?)
    He was on Pediasure and Fortini which I thought were working fine but the dietitian wasn't happy.

    Sorry for the rant I'm at my wits end with this latest change.
    I'm still breastfeeding so I have had to cut everything out of my diet also.
    Now he wont eat anything.

    I hope you are all closer to your diagnosis. The wait is killing me.

  15. #30
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    Not good to see others going through similar worries but good to see others posting so we can get it off our chests.

    Also sad to see some of you guys have more than one child going through hard times.

    My ds had his first toddler group for children with special needs the otherday. Was good to hang out with other parents going through similar issues. Sad to see other children suffering though.

    We have a big week next week with 2 big appointments for my ds. He has an appointment with ear specialist to hopefully get ball rolling for grommets. Then a trip to Royal Childrens in Melbourne to see the ear nose and throat surgeons, get ball rolling for his breathing and tonsil issues. Then the week after an appointment with some speech therapist's and autism doctors. Hopefully get more answers and new information and knowledge of how to treat some of his problems.

    Sent from my GT-I9305T using The Bub Hub mobile app

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