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Feeding issues and constant sickness

st.augbridest.augbride member
in Special Needs

I feel like ds is ALWAYS sick and he keeps gaining and losing the same pound. He has never had a normal appetite due to his IUGR, so feeding has always been a struggle. We've tried feeding therapy with a few different approaches and none of it led to anything good. Despite it all, he managed to gain and grow and climbed well onto the charts between age 1 and 2. However, he is now over 2.5 yrs and has not gained anything since his 2 year appt. He also has had MAYBE 6 weeks during that entire time (the past 7 months) where he hasn't been sick. A month ago we had his adenoids removed and a nasal procedure done. He ended up again with a nasty cold and high fever last week, never got rid of the bad cough (he also had croup last week), and now spiked a fever again yesterday to start it all over again. He is already a terrible eater, but when he's sick like this? Forget it. He won't eat or drink anything without a major battle. But of course then he just keeps dropping and can't fight the infections! His hypotonia and other movement issues (lack of coordination/balance) also become major issues when he is like this. I just feel so bad for him : ( I also get so scared watching the scale number get smaller and smaller. As of today, he is 1/2 lb less than he was 7 months ago. He looks so skinny and frail. Nobody seems to be able to help. We had a workup with yet another GI too while he had his adenoid surgery and she basically found nothing wrong, no allergies, and didn't seem to be able to help either. We also have a feeding eval next month with Kennedy Krieger which I'm not looking forward to at all as I just doubt it will help.

Anyhow, kind of venting and looking for advice too. Ds is in daycare so I know illnesses are going to happen, but they just seem to hit him SO much harder than other kids. I just don't know what to do anymore.

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Re: Feeding issues and constant sickness

  • JustinloveJustinlove member
    Has he had a swallow study done?
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  • JustinloveJustinlove member

    Also, does he see a pulmonologist?  He sounds a LOT like my girl.  She ended up being a silent aspirator and now uses a gtube.  Honestly, best thing ever for her.  The pulmo changed our life.  If you have a kid who is always sick (especially with coughs, etc), then a pulmo is invaluable!!  Seriously.  If he hasn't had a swallow study--demand one.  Aspiration and constantly sick go hand in hand. 

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  • st.augbridest.augbride member
    No, I think pulmonology is the one specialist we've managed to avoid... He has had horrid reflux his whole life, though it's been controlled with prevacid since 4 months old and his upper endoscopy last month revealed no damage, so the GI and ENT feel that the reflux is indeed controlled now. But talk to me about aspiration. What do they do if they detect that? He's never had a swallow study or even had it suggested...
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  • kcisthebombdotcomkcisthebombdotcom member
    Ugh, I wish I had something to help but were in a similar boat. DDs epilepsy meds give her no appetite and she's lost three pounds since may. She is constantly sick. She's not in daycare but goes to the y's childcare while I work out along with bunch of other activities. Sometimes I want to give all our activities up because I'm tired of the constant sickness and every cold turns into a sinus infection. I'm asking for a referral today back to the ent since i bet we have some adnoid problem too.
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  • EmAreEmAre member
    I would also suggest genetics. My daughter mostly had feeding and GI issues her first 2 years with all testing coming back "normal" (minus some inflammation). No feeding therapy ever made a difference. She also is hypotonic and as she got older, her motor and coordination issues became more apparent. We learned last year she has a genetic disorder. (16p11.2 deletion)
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  • st.augbridest.augbride member

    We did extensive genetic testing last year and a microarray too, and nothing was found. His issues really are more from the birth-related injuries of a bad placenta/placental implantation, which was my body's doing, so I wasn't really expecting that to result in anything. But as you know, they make you test for it all.

     

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