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Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

Looking for experienced dieticians who know about tube feeding

(23 Posts)
overthemill Thu 16-Jul-15 09:44:50

My dad has a complex health condition and is currently in a nursing home with me living there to provide her care and support. She has lots of issues but specifically she is hypersensitive to taste and smell so badly that she can no longer manage to eat by mouth anything at all as everything makes her vomit. As a result after 20 months she has started to be NG tube fed during acute admission to hospital.

She tolerated the feed for 8 weeks but over last week has started to vomit up the feed and now is vomiting it back completely. She is on dioralyte only now for last 3 days. GP visited and as she is taking water she isn't dehydrated. Tried Fortisip but she vomits that too either via NG or orally - she has always vomited this product and all the others made by nutricia and other brands ( hard to come by because of NHS a procurement). Tried Fortijuice and that has same result.

Question is: any other types of feed possible? She's been on various Nutrison and current prescription is for 2cal/ ml. Up until last week when vomiting started her weight was going back on and she had reached 18 BMI from 13 which was amazing.

So, dieticians - any ideas? No one we have ever come across at the four hospitals she has been in ( including two major London hospitals have ever come across this type of hypersensitivity

overthemill Thu 16-Jul-15 09:45:17

Obviously it's my DD not my father!

cestlavielife Thu 16-Jul-15 16:35:10

have a look at websites for blended diet. beldning real food which may be better tolerated... www.facebook.com/foodfortubies

overthemill Thu 16-Jul-15 21:29:11

Are you a dietician? Not allowed to put blended food down tube. She will not tolerate any food at all orally. I am desperate now as she will just have to go back in hospital in IV again

Hooleywhipper Thu 16-Jul-15 21:33:54

Could you do a half feed and half water mix for her? Sorry I am not a dietician but do tube feed special needs children as part of my working role. Hope somebody with more knowledge than me comes along soon for you. Good luck

WiIdfire Thu 16-Jul-15 21:35:01

I'm not a dietician, just a doctor.
Have you discussed jejunal feeding? The tube would still be via the nose but would extend beyond the stomach so that feed cannot be vomited back up. Feeds do have to be more continuous than bolus and the type of feed would have to be changed to be suitable, but it would still get calories in.

overthemill Thu 16-Jul-15 21:51:40

Haha! Just a doctor indeed?! Our paed is deferring to the dieticians as he isn't an expert in feeding nor does he know all the types of feed. We have mixed feed with water ( and already it had to be as so viscous it wouldn't go down tube) and have watered it down still further. Dd says insignificant difference in taste and smell though and it this which is making her vomit. We have discussed PEG and PEG-J as well as NJ tube. She is high risk for surgery for anaesthetic and for healing - she has bed sores which have lasted for up to 7 months).

Do you know anything about different fees: elemental? The dietician here says she might be able to get lower calorie feed out to us by Tuesday!!!

Shineyshoes10 Thu 16-Jul-15 21:59:33

Not a dietician so feel free to ignore. There are lots of different types of feeds. Have you tried more specialised formulas? The proteins are already broken down so it makes it easier to digest and they less likely to vomit.

overthemill Thu 16-Jul-15 22:28:40

We want to try other feeds but they aren't available easily here as NHS have contract just with nutricia and we are to,d Nutrison/ Nutrison energy only. They may try to find alternative but that will,be 'early next week at earliest'. Paed called tonight and spoke to NH wouldn't speak to me as in a hurry and instructed them to keep feeding the feed that makes her vomit and I do not know what to do. She vomits all,food . Has done so for 23 months. What are the alternatives?

LostMyBaubles Fri 17-Jul-15 06:45:25

Hi, shiney posted your link in our sn page. Feel free to come over! Will pop a link up for you, its a feeding tube support thread.

Can you slow the feed down? Are you doing a bolus with empty syringe or over a pump? Have you tried a feed thickner? Imo the best feed for kids who vomit a lot is neocate advance as its partially digested and its an amino acid feed. Does she have any allergies? Could be the reason shes still being sick.

Im not a dr, just another mum who has been in your position!
My ds is 5 in September amd has had his gastrostomy feeding tube (through stomach wall) for 3andhalf years if you are offered one jump at the chance for it as they are amazing. We never had rje ng tube.

Ds still refluxs really bad despite being on high doses of meds. I think trying some meds might help her, he was oversensitive to food too got to a point he just straight up stopped feeding.
He survived on 2oz of milk a night for a long time as gp kept fobbing me off.

You are not alone and your welcome to come join us anytime flowers

LostMyBaubles Fri 17-Jul-15 06:47:47

Ps its bollocks that you have to stick with a certain feed due to contract. We are with abbott and they make peadisure but ds is on neocate which is by nutricia. All else fails as gp to print your feed prescription and hand to local pharmacy (if they still say you cant get from delivery company)

LostMyBaubles Fri 17-Jul-15 06:48:51

tube feeding support

Shineyshoes10 Fri 17-Jul-15 09:20:44

Something like neocate advance or nutrison mct (there are more but these are 2 I can remember off the top of my head) are easier to absorb because the proteins are already broken down. You might need to push for more specialist feeds or a different companies feeds but they can prescribe them. I'd ring every day till I had something else to try.

Or a different tact might be to go for a high calorie/low volume feed so there's not as much to vomit back up. I don't think having a lower calorie feed would help because she'll need more volume to ensure she's getting adequate calories wont she? Does your DD take anything for the sickness?

Do you have an email address for the paed? Then you get everything down you want to say and they can answer when they have time.

overthemill Fri 17-Jul-15 10:20:34

Thank you shiney and baubles

My DD is 16 and has a severe form of an physical illness so technically doesn't have SN though of course being bed bound, unable to walk, hypersensitive to noise, light ( has to be in dark room), touch ( no cuddles - sheets give her bed sores), severe cognitive impairment (doesn't know what I am called so just always calls me 'my lady') kind of makes her have SN so we are fighting to get her a EHC. Critically she is hypersensitive to taste and smell she had gone down to BMI of just over 13 after a year and a half of trying to cope with food. All foods make her retch. Almost all foods make her vomit.

After many many months of trying to live on mashed potatoes or porridge made with water ( she can tolerate no dairy or substitute) it was decided she needed NG feeding. This was more than a year ago and she retched for 2 solid weeks for 20 hours a day. Then it was stopped. 6 months and 2 stone later they looked at a peg but she's too high risk. Fast forward to this april and she can no longer keep anything down orally and has to be 999 not hospital and IVd for weeks before finally London neuro gastroenterologist says only option NG. So we do that and she retches for 21 hours a day - literally retches when anything down tube - water, meds, feed. It's the sensation - she is touch sensitive. Finally after 2 weeks of vomiting and retching they agree to try Bolus fees if I will do them as they are so short staffed ( by this time I have lived in hospital for 4 weeks and DLA and carers allowance have stopped). Do it and she only retches and vomits while,Bolus happening. Mainly keeps feed down. I get Bolus down to 2 mins x 6 a day (900 ml). Transfer after 2 more weeks and off IV to nursing home. Fast forward to last week and nurse gives wrong flavour Calpol down tube ( she's allergic to orange food colouring) and she vomits. And then her feed and the her next feed and then her meds etc etc until we stop feeds totally on Sunday replacing all feeds with dioralyte. See specialist he says he will get advice. Dieticians do nit know what to do. See if tummy settles (it's jut her tummy). Next day she has to try FORTIJUICE and she vomits. Lovely projectile vomit! Next day try Fortisip. Ditto. Then dietician asked about alternative feeds and she says she doesn't know, maybe, perhaps, ok next week. Then doctor says last night she HAS to go back in old feed. Today she has refused consent as have I and been formally overridden by doctor who has t even spoken to me! So we tried Fortisip again and it has all come straight back up.

New feeds might come next week but they will be slow because deliveries not due that week so trying to get extra slot. I think she will HAVE to have PEG. Looked on Amazon and can but neocate (?) for £108

Anybody got any ideas about alter feeds. I will have to see solicitor I think but for now ideas about feeds. Please don't identify me if you can guess who I am. It's just all so awful. I actually think she will die if she ends up in adult ward as they will no longer allow me to stay with her now she is 16 and she cannot communicate her needs. I had a night off from NH and she didn't drink for 8 hours because she can't ask for water and they didn't think to ask her. They are really kind but not good on her illness.

A

overthemill Fri 17-Jul-15 10:26:25

She is in very advanced antiemetics: 2 really expensive Cancer meds and GP had to have riot act read to her by specialist as she refused to prescribe as DD doesn't have Cancer (oh how I wish she did because then they would peg her)

She has high cal low volume feed but it all comes back up. They think less rich might work. It's never stayed down before so why now? Different brands are definitely a real issue. Those names of types are helpful - will google

2old2beamum Fri 17-Jul-15 12:38:55

I am so sorry you and your DD are going through this trauma.

I am only an old paediatric nurse but DS4 couldn't tolerate food due to pseudo bowel obstruction and he was on TPN. Couldn't they feed your DD this way to build up so she could cope with surgery. The PEG/PEGJ procedure is not too difficult or lengthy

Good luck.

LostMyBaubles Fri 17-Jul-15 13:02:00

Granny need you on the other thread to identify picd pleas3 grin

Hmmm 900mls over 2mins? Thats a lot of fluid in 2mins. Can you get hold of a pump to pump that in say over 10mins or even better could she have a continuous feed so she needs 5400cals a day and ive just worked it out as 225mls an hour if she has a fees on all day which might help with the wretching a little?

Ds is on 250ml×4 a day amd each feed lasts an hour. You can flush water down the ng tube too to help keep her hydrated?

Neocate is expensive and now theres a shortage too on the 100g sachets
if you can afford to buy a tin to see if it works then thats an option and then if it suits her you can get it on prescription?

Take a min to look after yourself too. All that running around does take it out of you and if your not well you cant look after dd. So look after no.1 to look after everyone else (talking through experience lol)

I was also thinking the feeling of the ng tube down her throat and sitting in her tummy wont help all thr sickness will it?
Have they tried a anti sickness? I think she could do with something to empty stomach quicker so less chance of it coming back out..domperidone is usually used for this.

Shineyshoes10 Fri 17-Jul-15 15:01:31

Lots of feeds have milk in them so if she can't tolerate dairy that might be why she's vomiting. Neocate advance doesn't have dairy or soya in. Fortijuice/ fortisip still has milk protein in even though it's lactose free.

The sensation of the tube down the back of the throat can be uncomfortable.
Along with the anti-emetics is she on dexamethasone? It can work well with the anti-emetics to help nausea.

Does your DD have the capacity to refuse consent? If so they can't override her. Will they not let you stay on the adult ward? I did often with DD1. It would be for their benefit if you stayed because they wouldn't have to provide as high a level of care. If the NH can't cope with looking after your DD is there a different NH which would be better suited? Or care at home if funding was there for nursing care and you could get equipment/adaptations to your home?

lost I think overthemill's DD is having 150ml x6 so 900ml daily total for 1800calories. Is that right over?

2old2beamum Fri 17-Jul-15 15:38:01

Shiney that is how I read the 900mls so not a vast amount.

Our hospital keeps patients with complex health needs on the Paediatric Ward and then there is an adolescent ward where parents can stay in the same room.

Take care

overthemill Fri 17-Jul-15 15:50:48

Baubles -- sorry, ain't clear. It's 900 ml divided into 6 feeds each 2 mins if I'm fast - fast is best as she retches less. Retching so physically painful for her

overthemill Fri 17-Jul-15 16:00:20

Manager of HOme who was on duty overnight wondered about actual dairy intolerance now - since illness she's vomited all dairy but previously wasn't one of her (many) allergies. So how do we test? I did wonder about milk protein? Although money getting to be real issue I'm 'happy' to buy can of feed to test it as dietetics here seem incapable of getting feed out fast - where we actually home for all its faults, a community nurse would bring us stuff out on her way home from work so dressings, feed, prescriptions etc. Very helpful.

Told even complex health cases stay on adult ward and I cannot stay. No leeway.

Gone to ombudsman about lack of funding for suitable care at home- waiting since last October which was last crisis. Waiting for an answer.

NH is the only children's complex care one anywhere in our region. It's still over an hour from home on a good day and I haven't been home at all for 3 months now. I go for a coffee some days. DH comes as often as he can. The Home is lovely I cannot fault them but nobody knows her illness and the unusual hypersensitivities. Lunchtime someone hoovered downstairs and as soon as it was switched on she vomited - triggered by noise.

Anything/everything down tube makes her retch and now for 9 or 10 days most things down tube make her vomit. She has just vomited all her meds up - so 2 antiemetics down the loo ( well, sick bowl).

We want to take her home but specialist fears SSD would object legally.

Consent - big issue for us around whole,treatment and she has been told she will be overridden on feed issues as life threatening. I have too. So we have no choice but go to court.

Shineyshoes10 Fri 17-Jul-15 20:23:26

I think for your DD they would just change the feed so she wasn't having milk and see if the vomiting improves. Could they give meds IV or IM instead?

If your DD has capacity then i don't think it matters whether the decision is life threatening does it? Again if she has the capacity and wants to go home they can't stop her. However you'd need to make sure you were able to care for her at home.

overthemill Sat 18-Jul-15 13:37:56

Tried a different feed today - vomited straight back up. Have to wait to monday now to talk to dietician ( why don't they work 7 day week like radiography service does?!) and see if a differ t one can be ordered. Seems to take about a week to get each kind...
Mainly tolerating dioralyte still but struggling with all other foods as per usual. Very fed up

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