Toddler ex prem and feeding problems

User - posted on 04/04/2012 ( 5 moms have responded )

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Hi my little boy is now 21 months old.He was born 10 weeks prem and had a gradeIV bleed at birth.This has left him with Cerebal palsy,PVL.He was vented on and off and has had sleep aponea since birth.He has never fed well, was put on domperidone and ranutudine for reflux on NICU.He has been on various milk including prescription formula(nutramigen).Last year he spent 13 weeks in hospital needing NG tubes as his feeding was awful.He had 3 videofluoscopys and was diagnosed with bulbar palsy with identifiable laryngeal aspiration. We were put on thick and easy and were on 3 scoops per 100mls. He was listed 3 times to have PEG fitted but his consultant at our local hospital(doesn't do PEG) cancelled every time saying we were managing.Since then they have tried decreasing thick and easy which is remotely unsuccessful.I had an arguement with my dietician and refused to work with her as she was patronising as were 2 consultants we saw(I am a single mum with 3 children and said it was my stress that was problem) and we have had social services now heavily involved. Daniel is not really putting on weight, approx 2-3oz every 4-6weeks.His speech is becoming more and more delayed and feeding is becoming more and more of a battle again.He has NO dairy in his diet at all,he either totally refuses any kind of milk or diary or will have a taste and then wretch and vomit. He has also started regurgatating and choking in his sleep. Has anybody else had any similar issues either with health of child or with consultants?

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Michelle - posted on 05/22/2012

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My son has sleep apnea and it all most killed him. Turned out it was due to refluxing. He went into surgery for a fundoplication. It saved his life.

Does your son have hypotonia? Hypotonia will also cause feeding issues. Also, like previous poster suggested, check with a gastroenterologist about a fundoplication.

User - posted on 05/21/2012

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Just an update Daniel is now back on thickened fluids 2 scoops thick and easy in 100mls and is barely eating anything.He asks for food but just holds it and throws it.He is now losing weight at a rate of 7oz per fortnight and is also being investigated for urine infection as he is not well at all.And all I keep hearing from medics is lets not get stressed,wait and see.

User - posted on 04/05/2012

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Iridescent we have had a second opinion the 2nd time the PEG was scheduled and they agreed it was the way forward.That was then cancelled.Then we had an emergency admission to another hospital following a seizure whilest shopping and they again planned a PEG and within 24 hrs of speaking to our regular consultant it was again cancelled.Then out of the blue social services came in and the accusation on the table was I have munchausens by proxy and am getting 2nd opinions to secure the PEG.In meantime my son still struggles

Iridescent - posted on 04/04/2012

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I'd consider seeing another doctor and reassess getting the PEG done, and a Nissen Fundoplication evaluation.

User - posted on 04/04/2012

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Forgot to add Daniel has continual diarohhea which I have been told alsorts from dietician and consultant from it being the domperidone,which they reduced and did nothing to we need to stop giving juice just water which made no difference to last week being told it is just Daniel's bowels and how they work?????

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