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Permalink Reply by Keira Rawden on January 19, 2012 at 19:52

hi there

 

my little boy is under mike thomson and he had an NG tube fitted when he was 5.5 months. It worked in that we managed to get food into him as he was not eating before and he put weight on but very slowly.

 

He had the tube in for 3 months and was booked for a gastric tube operation on 15 december,  the week before the operation he pulled his NG tube out and he managed to eat more orally than we expected.  this was great and so they posptoned the operation.

 

since then he has been eating ok and weaning food too, his weight gain is very very slow but at his review on 12 jan they postpioned again and we are back on 9 feb to see how he is doing then,  i think he is growing out of the reflux so if you can avoid the op then that would be good.  the NG though is not pleasant for you or baby I am afraid but i do think it saved my son's life.

 

just before any operation trial with the NG and see how he does as we avoided the operation by accident!!

 

if you want to chat or meet up, I am in and out of sheffield so could do coffee at starbucks nect door or PM me x

Permalink Reply by tracey Brock on January 19, 2012 at 21:00

Thanks for getting back to me!

Im actually from Stoke not sheffield but I was looking for a UK support group!

My son isn't actually losing weight or even underweight but he is in so much pain and isn't even responding to adult doses of medication that the consultant has said that all that is left is to put him on a constant tube feed so that he doesn't reflux! She also told me earlier that they would change it to a feed through the tummy so he doesn't pull it out.

See this is where I struggle cos he isn't losing weight and is actually gaining weight well but he is in so much pain and isn't sleeping due to the acid, his voice is even becoming horse as the acid is burning his throat!

I am at the end of my tether! I have another boy who is two next month, he is being affected cos I am so tired from being awake all night and so I can't spend the time with him either! So I really do want to get something done!

I know I have gone on and on, I am sorry, I hope you can make sense of it x

Permalink Reply by Keira Rawden on January 20, 2012 at 13:48

hi there

 

what medications is he on?  I dont think that a constant tube feed will prevent reflux.  when oscar was on NG he vomitted more than when he was not on the tube but he had to be on it to feed him.

 

He can still reflux so long as he has something in his tummy as its the stomach acid and contents coming out and tube feeding wont prevent that.

Has he had a PH probe done?  is he on special milk like neocate or neutramagin in case the reflux is being caused by a cows milk protein allergy. That was part of oscar;s issue and he refluxed a lot less on neocate.

 

Hes on ranitidine, domperidone and omeprazole medications and neocate milk. it sounds to me that the medications are maybe not right if he is still getting such bad acid burning,

 

 

Permalink Reply by tracey Brock on January 20, 2012 at 15:30

Hiya,

yes seb in on neocate too and is better on it! The doc said the idea of tube feed is that it will be over 24hrs so that its dripped in so that he doesn't reflux! Tbh im not convinced myself which is why im searching! He hasn't had boy tests done

lastnite I spoke to the consultant who wanted me to take him up lastnite but I wanted to swap bk onto the 20mg of omoperazole and try it in one dose with ranitadine too....it seemed to work, it was the best nite he's had inches! He is just starting now but he's due in another hour or so!

I am going to ask for an appointment to go through things again I think Tbh if he carries on like this then im happy!

He's on 20mg omoperazole, 2ml ranitadine, 3.5ml domperidone and gaviscon. We had changed onto lansoperazole which isn't actually for kids but she wanted to try everything!