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Does anyone else out there give their child real food via G Tube (or wanted to)????(25 Posts)
I have only come across a couple of people in the UK who have done this or tried. I have been doing it now for almost a year and 100% at home not school, but now school on board and my son is doing really well.
My dietician thought I was mad and would not be able to do it. Proved her wrong and resolved a year of gastric problems that neither she, GP, Paed or GI specialist could help with.
I can't be in a minority!!
I am sorry I have no idea about this but someone may come along soon who might. But I can bump this up a bit.
the blenderized diet yahoo group is a good resource
thats amazing I didn't know you could do that!
doesn't Riven do that with her dd's Keto diet
Riven - sorry slightly off topic, but my youngest DS has swallowing issues - was offered a feeding tube but decided to go with puree. His growth has fallen and dietician advised extra fats and proteins - what extras do you put in?
Auntevil - our dd2 was given Calogen (which is just emuslified fat) to add calories. She also has Protifar powder for extra protein.
Before that the dieticians just told us to butter everything twice.
Like Riven, the tube made our dd2's health a lot better - she is stronger and more able to resist illnesses. If your ds has swallowing issues, has it been videoflouroscopied to see if it goes into his lungs?
Melted - had the videofluoroscopy earlier this year. Apart from lactose intolerant, nothing else of interest. DS3 is not my SN son - as far as we know there are no other issues - his health has always been fine. I think it's just after 3 years of puree his body needs more to keep growing.
At least you know its not going into his lungs then!
(sorry for thread hijack OP)
Wow, I just logged on to see that there has been a bit of activity!! Must find out if I can get updated by email when comments are added.
RIVEN- great to find someone else here who does this! I hope you have had a quiter evening and all is well after last nigh?
I am a bit paranoid about the nutrition content of my blends, I had a real battle with dietician as she said I would never be able to give my son a balanced diet this way as it would require too much liquid to make the blend thin enough, and his tube would block etc. - tosh!!! I have devised a spreadsheet database of the foods I use so it calculates the nutrition content of my blends.
My son only needs approx 300 cals per meal,and I use rice & nut milks as the liquid to blend other ingredients or veg juices. His blends are usually between 150ml to 220ml in volume for the full 300 cals!
My parents bought me the Vitamix last xmas, I was trying to get PCT to fund it as they were spending £450 per month on enteral feed plus all the giving sets etc. he was put on a special formula that was £800 per month as they thought he may have had food intolerances! I have saved them thousands and increased my monthly food bill by loads as I try to buy organic and wholefoods for his blends and us too when I can!! Before getting the mega blender, I would poach chicken and fish so it was softer & cut finely, then use fresh juiced veggies so didn't have to add extra liquid and powdered baby rice and blended with a normal stick blender, stage 1 baby foods are good too (Ella's kitchen, especially new breakfast ones as they contain rice so more cals, I keep these for emergencies and days out when I can't keep meals chilled or heat up).
I add calories to the blends by using nut butters, tahini, nuts, seeds and good oils as well as coconut milk. I add green tea sometimes, superfoods - papaya, raspberries watercress etc. for carbs I like to use grains such as amaranth, quinoa, couscous, brown rice, rice pasta - I have learnt so much doing this and discovered tips along the way and foods I had never heard of!
There is noting better than preparing his food again, I feel in control and fulfilling a basic function of a parent and not just breaking the seal on a pack on Tentrini!!. My son was always proud he had a healthy diet before his brain injury so I am glad to be able to do it again and resolve long term gut issues!
The Blenderized Diet group is a great place to start and they are a wonderful and very active and supportive community to learn more, I am also happy to share my experiences with anyone interested.
Just over 3 months ago my son had spinal fusion and rod surgery, he recovered very quickly and after 2.5 weeks his stomach resumed normal function (with the help of some pre & probiotics), which surprised his GI Dr and other parents whose 'complex' children who had the same op!!
Only had one blockage, hemp protein powder settled in syringe and forgot to shake it up, resulting in a tube change late one night and had to wake him up - been a late day and got behind with feeds and was making up!!
It sounds an awful lot of work! Sorry, I'm too lazy/life is too short/have 2 other children/think of another excuse.
I feel like you are trying to make me feel guilty about what I feed my child - I have enough to do already!
dinnae worry melted you are not alone!
ds has Calogen/Procal/Nutrini Energy and the odd KFC/McD's for good measure
Did you have to fight with your dietician and GI folks about doing this.
I would ( when Luuk's a bit more stable)really like to give it a go as I think it could really help his motility issues. However I once gave hi pureed fruit via his tube and the dietician had a fit so think I'll have a fight on my hands.
I am pondering asking ds's ditician tomorrow about blended food. Ds does eat so i know he would.tolerate real food. A good feed to change as a start would be the 200 ml of fortisip he has in the day (maybe see if he will drink some and rest down the tube). Our main stumbling block would be the 1000ml of Peptamen he has overnight as i really don't see how we can go back to multiple feeds.in the day.
I used to give DS2 expressed breast milk in his NG tube. /he was only 5 months then so he wasn't on solids. Not sure if that counts as "real food" though as it didn't need blending.
Starfishmummy, Luuk is fed continuously over 20 hours per day at the moent so goodness know how I would do it. Very gradually and slowly methinks.
From what I can gather, general opinion is that children can usually manage much more volume of real food that formulas so am hoping that will be the case with Luuk.
I wouldn't expect a great response from your dietician but do stick to your guns. I think I'm going to wait until next clinic appointment with Paed and Dietician together to raise the issue.
If Luuk is doing better health-wise I ight just start before then so I can say, here's what I've been doing and it's working!
I read an interesting comment on another site today whic states, 'Except in some sensitive inpatient situations you do not need to ask permission to feed yourself, your child or your loved one as you best see fit.'
I hadn't thought about it like that, so my plan when I speak to Luuk's professionals will be to state what I am/planning to do and ask that they support us in that. Not ask if it's ok to do it!!
Luuk physically is unable to eat so this is the only way he is ever going to have any kind of real food.
Good luck xx
See my 'It's a miracle' post for an update on how we are getting on with real food. xxxx
I agree with that comment about not needing to ask permission.......although as school nurses are involved they would notchange DS's regime without talking to the dietitian.
As I said before its the volume thing with DS as I'm not sure about putting blended food through his pump while he is asleep (as are we) and I am really loath to go back to lots of boluses during the day as it is so much easier without them! The one feed DS does have in the day takes half an hour in the morning (around 10.00am); and then we don't have to worry about tubes until bedtime as DS can/will eat and drink something (just not very much).
I also agree with Meltedmrsbars - it does seem a lot of work!!
Thanks for all of your replies. I think it is a lot of work just now, while I' working out volues/calories /mixtures and because I' using an ordinary blender.
When the Vitamix comes things will be simpler. Once I've worked out recipes etc I can make loads and freeze it and use it as we go.
In fact when I get to that stage life will be easier than now. Luuk has a powdered feed I need to ake every day. Effectively I a still making bottles so if feeds are frozen I just need to remember to take them out the freezer and voila!
A hoping the school will just feed him what I give them. No nurse involved just 1-1, who thinks it's a great idea and TBH I don't think she knows enough to realise the dietician will not be happy!!
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