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Orphaned 2 year old tube fed in Vietnam, questions from guardian

(12 Posts)
Hillaryb1 Mon 15-Aug-16 02:04:34

Hello smile my name is Hillary, I am caring for one of the children from the orphanage our charity supports. I have taken Tam home (in Vietnam) to live with me as he was not getting the attention he needed. Tam was born with no eyes, bilateral cleft palate and is unable to swallow.He received his tube 9 months ago as he could not swallow and needed to weigh 10 kilo (22 lb) before hie could receive surgery. He has had his first surgery on his palate by some wonderful doctors from England who flew to HCMC Vietnam to help. I had a tube put in Tam as he was being force fed at the orphanage which is quite normal here but still not ok. I had some wonderful ExPat nurses help me to put in an N tube first now he has a Mic-Kee buton and back up Minnee button. I brought over a Vitamix from the USA and he has a great blended diet. He will have his palate closed in October with the help of another great charity Operation Smile. He drools so he wears a patch which helps with this but I am unable to get a swallow test here. He doesn't speak but understand Vietnamese and English (which is the language I speak to him in). My question is this, his blend is great thanks to a dear friend of mine who also has a tube fed toddler. Tam has been on this blend for almost 2 months and doing great. I think he is just not feeling the best yesterday and today. I have some packets of "Earth's Best" Organic baby food that is pureed so it can go through the extension . I am wondering if I can change his regular, very nutrient full blend to this food and should I continue with 60 mls water before and after the 3 tubes of food as I do with his regular blend? We have no Pedialyte in this country. I am hoping Tam will get adopted soon but until then I will be caring for him and could use some advise. Thank you so much!!

Vipermisnomer Mon 15-Aug-16 13:16:04

Sounds like you are doing your best in difficult conditions.

You really need a qualified dietician to consult on this, preferably in tandem with the Gastrointestinal team.

Using food not designed for button feeding could cause problems with the equipment as well as the child's health.

A big indicator will be frequency toileting. You need to take him to a Dr if at all possible, please get medical attention.

Javabeansaintgeorge Mon 15-Aug-16 16:49:12

I'm sorry but you really need professional advice on this not forum advice.

youarenotkiddingme Mon 15-Aug-16 17:01:33

Yes you need professional advice re the food and suitability for Tam and his tube.

However you should always follow through with a flush after a feed. Do you also prime the tube with water before you feed too?

Olympiathequeen Mon 15-Aug-16 19:11:47

If you are on Facebook there is a great page called blended diet uk with some really helpful people there who can answer any questions you have.

If not I would not suggest baby food in pouches as they are usually pretty low in calories. If you are using the vitamix you can do the BRAT diet. Which is just banana, rice applesauce and toast. Basically very bland and easily digested. If the child is a normal weight and can afford a few days on baby purée and it's easiest for you that's ok.

I take it you are saying the child has a temporary childhood illness and you just want to give him a break from his normal healthy diet?

Vipermisnomer Mon 15-Aug-16 23:14:26

Olympia read the OP!!!!

Melawati Mon 15-Aug-16 23:37:52

I lived in SE Asia for years, including Vietnam. Pedialyte (or local equivalent rehydration solution) is very easily available there and the standard of medical care is generally high. Please take this child to a medical professional who can give you proper advice.

Olympiathequeen Tue 16-Aug-16 09:35:53

Viper...I can read and I read the op!

Unfortunately the op was not very specific other than 'not feeling the best' for 2 days. Does that mean feverish, d&v, crying?

With such unspecified information it's difficult to answer with specificity.

Therefore my advice is as specific as it can be with advice on a bland diet, BRAT diet and so on.

And my last sentence was a question asking for clarification. I didn't suggest visiting a doctor as that's the obvious thing any carer would do if they felt it necessary. Presumably she doesn't feel it necessary and is asking for some simple feeding advice. Which I gave!

So what is your issue???

Javabeansaintgeorge Sat 20-Aug-16 14:06:23

if he is tube fed he is fed by a tube directly into the stomach, you can't feed him the brat diet, food has to be nutrient enriched mush.

Olympiathequeen Sat 20-Aug-16 21:54:58

Java. I don't think you quite understand or have read the post. The post is not totally clear, but what is clear is that the child is fed a blended diet. Which is a specific way of feeding via a feeding tube normal food, puréed. This is why the op has a vitamix. That's the best way to make food smooth enough to go through the tube.

The op only mentions the child being a bit unwell for a couple of days and suggest giving him baby food instead of his normal healthy diet. I think the brat diet is the general advice for a light diet. Again I stress the op was not specific, but the brat diet is cheaper and as good as giving baby food.

blended/blenderized diet is just an alternative way of feeding to formula feeding via a gastrostomy. I know, I feed my child this way.

Vipermisnomer Sun 21-Aug-16 22:33:39

Olympia non of the questions asked by the OP can or should be answered without knowing more about the child's current condition, seeing the child and being a fully qualified medical professional which is why others have held back from attempting to get into this further and have asked that he be taken to see a doctor.

This is one of those very tricky situations where well meaning advice could have serious unintended consequences.

The OP hasn't returned to the thread so let's hope she took the child to get medical help and is being given the support they both need.

Olympiathequeen Mon 22-Aug-16 09:23:49

Viper. With all due respect you are doing the usual 'he has a feeding tube. Go into panic mode'. When someone says "he's not feeling the best" and asks a simple question about reducing the richness of his food it is reasonable to answer that question as it is asked.

I didn't suggest seeing a dr as I assume Hilary is competent enough to know when this is necessary. I didn't suggest she see a dietician because dietitians don't generally support blended diet and if they did and it was a minor condition she would say the same thing I did

I did (if you actually read what I wrote) ask for clarification because advice could only be very general

Unless you are saying that someone coming onto an advice forum asking for advice should only be told to visit a dr or a hcp? I reiterate. I asked for clarification.

Fwiw I am a nurse and a blended diet mum so I do know what I'm talking about and don't panic at the sight of a feeding tube or a cleft palate

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