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  1. #91
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    We have spent every weekend at the hospital for 4 weeks, this is the first weekend we haven't had to go up to ER.

    DS2 had a severe asthma attack -he is almost 6 and never had one before, DS1 has severe asthma that flared so we were up there ever second day for almost 2 weeks until they finally admitted him to get it under control.

    And DS2 had bloody and mucousy bowel movements a couple of weeks ago, they have no idea what is going on with him or why he has chronic belly pains and bad poos. So still no answers with him.

    And to top it off I am pretty sure DS4 is coeliac or at least gluten intolerant, we took him off gluten for a month to see if it would help with his belly pain and it did. So now he is doing a gluten challenge, and is back to having bad poos, belly pains that make him cry and his behaviour has become really bad really suddenly. Daycare teachers were stunned, they've never seen such a behaviour change in a child from one day to the next. So now it's a 10 month wait to get into a paed GI. Argh!

  2. #92
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    Did you get into the Paed GI yet Sookie? How is your DS doing now?

    Quote Originally Posted by Sookie Stackedhouse View Post
    Still no more news. We are back to the beginning of the whole mess again. He is constipated at the moment. On day 6 so far. I'm getting very annoyed with the peadeatric nurse. She didn't show up for any of our appointments last week or the week before. I just want the test results! He has put on .02 of a kg since leaving hospital. It's not good. He is easily tired and grumpy/clingy. Sleep is hit and miss. Dh and I are not even seeing each other for more than an hour a day. He is not helping at all just hiding in the garage or sleeping all day. I'm over it all. I just want to sleep in my own bed with my boys hugging me. Ds1 misses me terribly. His behaviour has gone right down hill in the last 2 months. I can't keep in his routine and he hates it. I'm lucky to get dinner by 8pm most nights.
    Grr vent over.

  3. #93
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    No Hun we have not even gotten a referral. The new pead thinks it's just toddler diahoria and there is no reason or fix. Grr. But she has referred him to be screened for autism and to see an ot. She wanted to send him to a fussy eatter clinic but it's over 4 hours away and we can't get funding for the transport and the clinic. So he is seeing a speech therapist, dietitian occupational therapist and pead. Yet still no answers. Just more questions.

  4. #94
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    Oh wow, I am really surprised that they haven't referred him on to a GI, he really needs a scope with biopsies. They have to rule everything out, which they don't seem to be doing. Have you applied for carers allowance for him? Reason I ask is that once you get carers allowance, then he will get a health care card, and once you have a health care card the bulk of petrol is paid for if it is over 200km to get to a doctors/medical appointment etc.

    Quote Originally Posted by Sookie Stackedhouse View Post
    No Hun we have not even gotten a referral. The new pead thinks it's just toddler diahoria and there is no reason or fix. Grr. But she has referred him to be screened for autism and to see an ot. She wanted to send him to a fussy eatter clinic but it's over 4 hours away and we can't get funding for the transport and the clinic. So he is seeing a speech therapist, dietitian occupational therapist and pead. Yet still no answers. Just more questions.

  5. #95
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    We are in NZ. He is on the child disability and disability allowance but they only cover travel to appointments. This is for a clinic run by a uni. It's not officially a treatment.

  6. #96
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    Oh right, ok. You are in a similar situation to us, we live regional and the hospital that we are referred to is 3.5 hours away. Sometimes we have to go in for a procedure or something and then drive straight home, 7 hours without traffic or road works. It also means getting answers is tough, because they can't do any paed stuff here.

    Quote Originally Posted by Sookie Stackedhouse View Post
    We are in NZ. He is on the child disability and disability allowance but they only cover travel to appointments. This is for a clinic run by a uni. It's not officially a treatment.

  7. #97
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    Yes that's right. It is 2 hours to the closest hospital that has a pead ward.

  8. #98
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    Another update.
    Ds2 is sick again. I am so over this. We finally get him back in normal food, starting to eat a bit more then bang back to the start. Change his diet again get better then bang. Each time he puts on half a kilo to a kilo and losses most of not more than that. I can't take much more.
    I am going to have to put my foot down. Someone has to help my baby!

  9. #99
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    We are trying another diet change. Gluten and dairy free this time. So he is off the medical formula for a week. In 2 days his bum rash has cleared up. He is sleeping almost through the night. I think, based on 2 days, we might be on to something. Fingers crossed.

  10. #100
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    5 days later and my baby is a different little guy. We Have an answer!
    He is cow's milk protein intolerant and has a chewing delay. With his speech delay and possibly asd to boot.
    We Have feeding therapy every week. Ot , dietitian and St every other week.

  11. The Following 2 Users Say Thank You to Sookie Stackedhouse For This Useful Post:

    beebs  (15-06-2015),zooey  (15-06-2015)


 

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