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  1. #31
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    I'm so glad I posted in here.
    It's not a nice thing to feel alone when all of this is going on and ranting to you lovely ladies is a life saver.

    At this point no tests are being done apart from stool and bloods.
    They are doing the cal producton every 2 weeks.
    This shows the level of bowel irritation.
    We had to stop the dairy free diet after 4 days. Ds2 wasn't eating or drinking the neocate. He was off everything but boob.
    It was so hard as we had started to wean.
    But now he is on 2x 200ml bottles of fortini a day and eating lunch on a regular basis. All other meals are hit and miss though.
    I wish I knew what was the cause so I could fix it.
    He is still not talking. Not even babble. Still no word from the ST either. They said 2 weeks. I'm going to have to start chasing that up now.

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    zoz  (17-10-2014)

  3. #32
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    Hey DueInAugust.

    Good to know people are still posting here.

    I hope you get some news from speech therapist soon. It's frustrating when they don't follow up on stuff. Hope you get answers soon.

    I can't wean my DS off his bottle yet either. It's his main way of getting anything down. He is just on a follow on formula. He nibbles on food during the day but spits most food back up because of his tonsils I guess. He won't eat any form of meat what so ever, just gets spat out. He usually has 6 to 11 on a bad day bottles of 150ml formula. With a few snacks if it doesn't get spat out or spewed up.

    We went to the Royal Childrens in Melb the otherday. He is on the waiting list for surgery for grommets and then they'll re-asses him next time for his tonsils.

    They aren't sure about autism as he seems quite aware and interactive and cooperative with what is going on around him but also in saying that he still shows other signs, so who knows it's just a waiting game.

    Still no talking here just babble and a few words which could just be random stuff. Still no walking or standing unassisted. Just got to watch and wait with what happens. It is so hard. We have an appointment with speech therapist next week.

  4. #33
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    Hi girls.
    You're kiddies are a bit younger than mine aren't they. DD will be 2 at end of November. She still has bottles with pediasure in them. ..High calorie formula. We saw a pediatric gastrointerologist today. Funnily enough discussed the return of cmpi for DD and he mentioned the calprotectin thing was a waste of time in diagnosing it! ! Wish doctors could agree Hey. We are likely getting a g-tube placed for her as she doesn't eat much.
    We see speech for feeding and now fighting to get Better Start funding so we can see speechie privately.
    It gets exhausting all the therapies doesn't it.
    Thought I would mention some of the things my daughter has which brought is to her diagnosis of Smith-Lemli-Optiz syndrome. Though in terms of physical signs she's very mild and no one would really know she has it. I know kids who were diagnosed with FTT for ages before doctors discovered it.
    She has
    Heart defect
    Syndactyly of 2-3 toes (webbing)
    FTT
    Microcephaly (small head)
    Feeding difficulties
    Speech delay
    Sleep disorder
    Constipation
    Low muscle tone.
    Here's a picture.

    Did you know that kiddies who struggle with solids/feeding often have speech delay that does resolve? Because the muscles used to chew etc are the same that we use to speak. Just thought I'd share that as I noticed you said feeding and speech was challenging. They are linked.

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    zoz  (18-10-2014)

  6. #34
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    huge hugs to everyone xxx

    I'm sorta out the other end - my dd who is now 5.5 was diagnosed with Rett Syndrome 3 years ago now. our funding has run out for OT etc and she's just been offered a place for the local SSP which is fantastic.

    her last ecg has picked up some heart issues so we're going in for the 24 hour study next Wednesday- a bit scared because this is what some of the kids pass away from unexpectedly. glad they've caught it early though!

    just some passing comments on what I've read here so far
    - my ds is 5 and still bottle fed, it's the only way she can drink. don't feel like you HAVE to move on from bottle, dehydration would be worse

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    Tamtam  (17-10-2014),zoz  (18-10-2014)

  8. #35
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    She is gorgeous by the way Tamtam. Wouldn't even know there was anything wrong with her by her lovely pics.

    Interesting to know that about speech and feeding issues. I didn't know that, I guess it makes sense but good to know it's all affected.

    Also sorry if I sound stupid lol but some of the abbreviations I don't know what they mean. I've noticed alot of you ladies putting abbreviations for what must be the illness or what kind of doctor you are seeing. I don't know most of them, excuse my ignorance.
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    Last edited by zoz; 18-10-2014 at 11:59.

  9. #36
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    Sorry zoz. I'll stop using the abriviations.
    It's hard to know if you don't ask so don't feel bad.
    ST is speech therapist.
    OT is occupational therapist.
    Apart from that is usually diagnosis stuff. FTT failure to thrive and so on.

    I also wish doctors would agree.
    The cal production was supposed to be the only test they could do but no it doesn't say it is cmpi (cows milk protein intolerance).
    It just tells them something is irritating the bowel not what.
    I'm not worried about the bottles. If he keeps going till he is 5 at least I know he is getting what he needs.
    But I am sad that I have to give up breast feeding. My milk isn't what he needs and is interfering with him taking the whole bottle when he should.

    I had thought the food issue and speech issue was connected but no one would listen to me.
    I hope the spitting or food is a short term problem. We have the same problem.



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  11. #37
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    Hi lady's
    I am glad we are not the only ones waiting for answers it's easy to feel like the onlys ones left in the dark
    our dd is 9 mths born full term but only weighing 2.3kgs with no answers to what happened
    she was diagnosed with cmpi at 4 mth and is on Alfare
    she has high muscle tone that comes and goes but the confusing part is she can move her limbs herself
    we seen a neo and he has put her in for a mri next Feb but he feels she is just behind on her milestones because she started small and is slowly catching up basically acting like a premature bub
    her head circumference is in the 3rd percentile which is were she started but the concern is her head isn't growing quick enough but to us she is in perfect proportion
    she has also been diagnosed with fft and possible early onset of dystonia in her left arm we see a dietitian next week
    for us the hard part is having OT and SP come and tell us what to do with her now a dietian it's all very overwhelming
    we are also seeking a OP cause our OT has told us she only deals with low tone bubs not stiff bubs gggrrrr bloody irritating .
    this is a rollercoaster I never thought I had to ride but knowing I am not alone doesn't seem as scary

  12. #38
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    Really could be anything, coeliac, eosinophilic esophagitis, Crohn's, IBD etc - has your doc mentioned any of those as possibilites?

    Quote Originally Posted by DueInAugust View Post
    Sorry zoz. I'll stop using the abriviations.
    It's hard to know if you don't ask so don't feel bad.
    ST is speech therapist.
    OT is occupational therapist.
    Apart from that is usually diagnosis stuff. FTT failure to thrive and so on.

    I also wish doctors would agree.
    The cal production was supposed to be the only test they could do but no it doesn't say it is cmpi (cows milk protein intolerance).
    It just tells them something is irritating the bowel not what.
    I'm not worried about the bottles. If he keeps going till he is 5 at least I know he is getting what he needs.
    But I am sad that I have to give up breast feeding. My milk isn't what he needs and is interfering with him taking the whole bottle when he should.

    I had thought the food issue and speech issue was connected but no one would listen to me.
    I hope the spitting or food is a short term problem. We have the same problem.



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  13. #39
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    Quote Originally Posted by beebs View Post
    Really could be anything, coeliac, eosinophilic esophagitis, Crohn's, IBD etc - has your doc mentioned any of those as possibilites?
    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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    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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