So is it more "normal" to have a child with a tube, which is only used for constipation medication and who otherwise eats well, and goes to the toilet relatively well....
or
A child WITHOUT said tube, but who hardly eats because to get the above medication down him orally it has to be offered in his Neocate, and given the opportunity he will ALWAYS choose Neocate over food and the huge quantity of milk required means he eats only one, sometimes two meals.
Now.... call me strange but I genuinely would pick the first option, since he HAS the tube already, because he is a strong willed toddler who cannot be reasoned with and surely having him eat is better then worrying how his constipation meds go in? Is not more neocate a backwards step?
Apparently not. We are referred to the local specialist hospital for the tube to come out. I am strangely reticent about it... thrilled on one hand (Dh is over the moon) but a little scare on the other. If it ain't broke, don't fix it. KWIM?
Hmmmm...I don't really know how I feel about that. LOL, so let me throw out some questions!
Will the calorie concentration of the Neocate rival the foods he's eating?
How much Neocate does he have to have the Miralax in? Can he take that in a smaller volume so he doesn't have the "option" to choose to drink his meals?
Is he getting enough fluids? That's such a huge, huge part of constipation that I wonder if he needs water tubed in overnight??? How much is he drinking orally?
I'm really excited that he's eating well enough to have it removed...that essentially IS the whole battle right there! But, if he's not able to poop, they're going to need to find a better solution for him than drinking that much Miralax in Neocate, kwim?
What about adding Benefiber and extra water in his diet??? Any chance of that happening?
Severe GERD from birth, former FTT, major feeding difficulties, dysphagia, episodic pseudo-obstruction, SID, developmental delays, sensory ataxia, areflexia, muscle weakness and fatigue, hypotonia, arrhythmia and bradycardia (pacemaker 10/6/09), autonomic issues...
That is exactly how I feel Lindsay - and tbh no he doesn't drink enough. He needs 300mls Neocate (300 Kcal) to get 4 sachets of movicol into him. That's the minimum he needs to "go" most days. About every 12 weeks he needs EIGHT sachets for 2 days for a clear out as things gradually get worse.... and there is no way on EARTH of getting that in orally. I pointed this out today but apparently that isn't a reason for keeping the tube in??!
I might try and get more fluid into him via the tube whilst we still have it, to see if it makes a difference actually. He drinks half what K does but noone has really mentioned it?!
Severe GERD from birth, former FTT, major feeding difficulties, dysphagia, episodic pseudo-obstruction, SID, developmental delays, sensory ataxia, areflexia, muscle weakness and fatigue, hypotonia, arrhythmia and bradycardia (pacemaker 10/6/09), autonomic issues...
Yeah
what's the rush
I'm a little worried about this
__________________
Minnie
Proud Mother of Emilia age 13
and Eric My 5 year old GERDling
GERD, Constipation, DGE, nodular Duodenitis, Esophagitis, and inflammation throughout the digestive tract
Current meds: Prilosec, Pepcid, Pentasa, Miralax, and Probiotics
Not sure what the rush is - except like I've said before the effects of last years stuff will reverberate for years..... one of the points raised in the last meeting (in March this year) was that he "shouldn't have a tube because he was no longer FTT".....Eh? I thought tubes were (partly) to *prevent* FTT? I mean, Dom is no longer FTT but needs his forever etc.
I can't think of any other reason. The dietician said she wanted to see it redundant for a year before it came out - we've had months without using it for feeds but STILL use it for meds sometimes? We see her again in 10 days - it's been a year since the last appt with her.
Will update in full on updates about our appt yesterday. Not totally happy really, don't know who to trust anymore!! If we go back privately to the man who put his button in, HE said he wanted to redo the fundo if he still needed meds this summer. Well he's just had them increased. (summer) Not sure I would want a fundo redo though?!!!! However we are being sent NHS so will only see one of his Registrars (junior or middle rank docs, not consultant) which is good because it takes longer but bad because it's someone totally new to us who will prob just follow the paed's letter and whip it out.
You know what DOES make me laugh though...... the paed knows so little about buttons/tubes and when I asked if we couldn't just take it out locally she said it needed anaesthetic and stitching closed. ??? I could just take it out, slap a gauze on and leave it a few hours and these people are making big decisions about my kids!
and these people are making big decisions about my kids!
Kate xx
Exactly!
Kate all you can do is take it all in, the opinions and what not, and make your decisions by taking a little from here a little from there. Don't doubt yourself or your knowledge. You're a smart cookie. You're in charge! (whether you want the job or not LOL)
You really do know what's best. Talk to these guys let them know how you feel about everything, and remember they work for you, not the other way around.
__________________
Minnie
Proud Mother of Emilia age 13
and Eric My 5 year old GERDling
GERD, Constipation, DGE, nodular Duodenitis, Esophagitis, and inflammation throughout the digestive tract
Current meds: Prilosec, Pepcid, Pentasa, Miralax, and Probiotics
kate in the past when our ped has referred back to surgeons for removing the tube, when we get to the appointment we have explained that we still use it and the surgeon has said fine.
i would definatly want to get through a winter first to see if he can carry himself through without needing it.
Thanks Feeling a little calmer tonight! I am doing what Lindsay suggested too and tubing fluids to see if it helps whilst we still have the tube. The daft thing is how subjective it all is - like I said, if we went private again and saw the surgeon, he would be in for a redo and almost certainly be tube dependent for a while. Might be a useful thing to say though, that that was the consultant's view before, and whilst we are in absolutely no rush for a redo, whilst there is ANY chance we don't want to lose the tube? The constipation/encoparesis is a worry too.
But, if he's not able to poop, they're going to need to find a better solution for him than drinking that much Miralax in Neocate, kwim? 
Lindsay 
http://www.caringbridge.org/visit/avaknops 
and these people are making big decisions about my kids! 
Feeling a little calmer tonight! I am doing what Lindsay suggested too and tubing fluids to see if it helps whilst we still have the tube. The daft thing is how subjective it all is - like I said, if we went private again and saw the surgeon, he would be in for a redo and almost certainly be tube dependent for a while. Might be a useful thing to say though, that that was the consultant's view before, and whilst we are in absolutely no rush for a redo, whilst there is ANY chance we don't want to lose the tube? The constipation/encoparesis is a worry too.
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