1 yr old gord And DGE am i missing something

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Knezee is 14 mohts old she has servere GORD and Delayed gastic emptying she had pyloric stensis repaird at 4 weeks old and had a fundoplication 4 weeks ago she is on continuos tube feeds becasuse she can not tolerate bolus feeds as her tummy symply doesnt empty properly she is on domperadone for theDGE and losec for the GORD she is still only able to tolerate 45 mls and hour on a continuos feed which is better then she was doing but she is stil gaging and bloating and screaming in pain even on that rate but we cant slow it down any faster as she istn even gaining weight on that rate, she is also still having some silent reflux it think it is sneaking out around her NG tube, we are looking into maybe trying her on a NJ tube to see if that helps any, as she realy needs to put on weight she is hovering around 7 kilos at 14 months old and with her continuos feed running 24 hours a day she still isnt growing i think as she is using a lot of energy to try and get comfortable

Do you think we are missing something here what do you think do you thin the J tube may help i realy am at my wits end with it all my poor darling is alsways in so much pain the only time she is truesly happy is when she is fasting for an operation
we see the surgen tomorow are there any questions you sugest i ask

also do you know of any tube feeder play groups in perth or gord baby play groups

thanks for your time

[RISA]

Hi Mikenzees mum,

Thanks for contacting our organisation. It sounds like things have been really tough for you, though you do sound like you are doing a really fantastic job of it. I know that it isn't easy, and I'm wondering if it would be helpful if you considered joining our organisation, just to get a bit more support?

We have online support groups with reflux parents, and one especially for parents whose children have had a fundo or are tube fed. I don't know if you are getting a lot of support yet, but just wondered if it would be helpful to you. If you want to know more, just let me know.

I'm sorry that she is still having problems, even though she had the fundo. I can try to offer some suggestions, which will hopefully help, and I hope you find some answers that will make her feel more comfortable.

I don't know how much you know about a fundo either, but the recovery is often quite long. I wonder if that is contributing to her pain still? It isn't unusual for children to still need reflux medications after a fundo, in case that is bothering you.


You said that you suspect she is having silent reflux still- can I ask what makes you think she is silently refluxing? I only ask because when there are motility problems, sometimes it can be that, that is the issue, rather than reflux itself. My son appeared to be refluxing after his fundo, and while he does still reflux some and still takes Losec too, we eventually discovered another issue, which was oesophageal motility problems. It made it look like he was refluxing still, but the problem wasn't that. We had to treat it differently, so I guess my thought along those lines is, with the DGE, do they know if she has oesophageal motility problems, and if they don't, would it be worth doing oesophageal manometry to find out?

I don't think it's unusual to be only able to tolerate such small amounts via the tube- that seems to be quite common, especially in fundo kids. Have you spoken with a dietitian about that, as sometimes they can organise a more concentrated formula to make sure they get added calories that way. It may also be worth asking the surgeon about, to see if he can organise something.

Is the tube intended to be used longer term, as I am a little surprised they haven't talked about placing a permanent tube, rather than using the ng or nj tube. (or is that one other reason for a surgeons appt tomorrow?)

The nj may work, and it sounds like it may definitely be worth trying. Did you realise she had DGE before her fundo, or has this issue just been discovered? I'm sure it makes it really hard for you to deal with this as well. It makes it much more complicated, doesn't it.

okay- am trying to think of other things. When she is fasting, so she doesn't have food going into her stomach, that makes me wonder about a couple of things. Firstly, does she have food sensitivities? Have you tried using elemental formulas (Neocate and Elecare)? Sometimes one works better than the other, but often a child can have a lot of pain if being fed a formula they are allergic or intolerant to.

Secondly, the other possibility that I thought of, is could she have visceral hyperalgaesia? It's a heightened awareness of her gut, so the sensation that others would feel as normal, she interprets as pain. I must admit I know nothing about this, and don't know about the treatment, or even if there is any, but thought it might be helpful to mention. I'm sure you have tried racking your brains to find out what might help, so you could perhaps talk to the surgeon about it.

Have you tried giving her Mylanta when she has a lot of pain? Perhaps that will determine if her pain is from acid reflux?

That is all I can think of at the moment, but if anything else comes to mind, I'll let you know. I hope you can find something that helps her feel more comfortable, and I hope my suggestions have helped a little,

Glenda

[Nowhere]

thanks for you reply i will talkt to them about the osophagil motilitiy im really not sure as she is only tube fed no food in her osophagis so would that still be posible

We are looking into a permanent feeding tube at the moment we was hopeing we wouldnt need to as far as i know we will see which one is better for her either G or a j or maybe a GJ before she has it done

AS for the food sensativety she is only on Neocate she can tolerate neocate and elecare but other than that she cant tolerate anything

We use Gastrogel its simaler to mylanta only a gel form it is liquid gold for us she loves it it really helps that what makes think she is still slightly refluxing but no where near as bad

I didint realis the you guys had an online suport group as well i am a mamber of Infant reflux disease . Com which is great but most of them are from the USA so an ausie one would be great

thnaks so much for you reply

[RISA]

Hi Mikenzees mum,

Sounds like you have covered a lot of bases already, but with everything you have been through, that is to be expected. It sounds like you have been doing this for a while too.

The oesophageal motility may not be an issue, but it just may be something to consider. Although she isn't having feeds go down her oesophagus, she would still be swallowing saliva etc, so it may have an impact- just not sure how much it might be.

Our group is probably nowhere near as big as the US site, but we would love to support you as well- there is so little support for reflux families, and it's heartbreaking. We do require membership though, that's the only thing, but yeah, we think the benefit of having an Aussie group is great. If you go to our site at www.reflux.org.au there is a membership page that gives more details.

I forgot to ask too- I gather you would already be receiving Carer's Allowance (and maybe Payment), but just in case you havent applied, I am sure you would qualify. Just thought it was worth mentioning.

Glenda

[Nowhere]

thanks so much for you help i will join your wed site group this evening when i get a chance

we see the surgean today and i will ask her about the osophagis motitlity see what she says

I have actulay just aplid for the careeers alowance i hope we get aproved

[RISA]

I hope the surgeon's appt goes well and also the application for carer's allowance. If you have problems getting it, it might help to talk to one of the people in that department, as they can help explain what they want from you and how best to answer the questions (seem to be designed to be confusing!)

Glenda

[Nowhere]

hi thanks again i just payed my membership for RISA now just waiting on a email back to join i cant wait to meet more ausei kids like mikenzee