ng feeding

[crocker]

Hi everyone hope life is good.Has anyone ever had ng nasal feeding or there children my son who is 13 is about to start it.

[liz2mac]

Hi crocker,
never had one myself. When I was working as a nursery nurse I looked after children who were tube fed in this way. He must be having problems with his nutrition? That's such a worry for you. How are you both coping with the idea of it?
Liz

[crocker]

Lots of problems going on at the minute.suffering with malnutrition as he is not absorbing any nutrients from his food.He is only 4ft 6ins tall and 4st 8 and he is 13.He eats well most of the time but now his blood and vitamins are all wrong as well .We are very worried as everything they have tried just doesn't work.He also has norovirus living in his gut which is causing chronic diahrerra all the time he has had this virus from the age of five.

[liz2mac]

I am so saddened that you are having to deal with this. A very dear friend of mine had difficulties with malabsorption and had to have special drinks with all his nutrients in. Despite this he enjoyed life and was able to lead a full life. Is your son treated by an immunologist and would you be happy to tell me whereabouts you live? I'd love to try to find someone who has trodden this path before you and your son, to maybe to be able to give you both some ideas abpout how to make it as good as it can be.
If you'd like to talk to me on the phone, you can contact me through teh tel number on the website. www.ukpips.org
Liz

[crocker]

It all seems to stem back to the norovirus which was discovered by accident when he turned 7.We had a different immunoligst at the time who did nothing about it .I changed over to a different one two years ago but by then his health was so bad they are still trying to fix him but we are hitting brick walls every time.They just cannot get rid of the norovirus and his villi's are completely flat .Every time he puts on a few ounces the diahrerra gets rid of it .Sorry for ranting on oh by the way we are in Belfast

[liz2mac]

Sorry, I must have missed somthing, where was this rant? All I see is a parent at the end of her tether, trying her very best to support and care for her son. I remember being a Mum to a thirteen year old boy and even without health issues that road is a rocky one.
I will do my very best to support you in any way I can.
If I don't post any discoveries I've made for you for a while, don't think I've forgotten, I'm just doing research for you.
Keep talking to us. We care.

[liziJ]

Hi crocker,

I read your post and can't imagine how hard it must be for you at the moment. It must be heart-breaking to see your son so ill.

I can't understand why your poor son has had to live with norovirus for 8 years? Has he seen any specialists about this? When you say you keep hitting brick walls, what's been happening? Does your son have a Primary Immunodeficiency?

I was wondering how he's coping with the situation. I'm a secondary school teacher and can't imagine many of the 13-year-olds I know dealing very well with such a horrible reality. Does he manage to attend school at all or see friends?

All I can say at this point is KEEP POSTING! In my experience it really helps to get things off your chest ... and never apologise for ranting. Firstly you haven't ranted yet, and secondly ranting is just what these forums are for.

Lizi x

[liziJ]

Hi crocker, just wondered how you and your son are getting on?

Lizi x

[crocker]

Curtis is doing not to bad he is very laid back and takes life as it comes.Curtis has had norovirus for so long because his first immunoligst as we learned very recently did nothing about it no investigations as we thought he was.He also had not got him on the right dose of immunoglobulins.I got very angry got a second opinion and changed consultants two years ago.By that time Curtis health was so low no vitamins ,very very low iron and malnutrition had told hold and they are still trying to fix him if that is the proper way to sat it .I no how it is affecting me (living on my nerves) so I can't imagine how he feels. He is also getting help now as he was saying things like I was the doctors would just give me to much anasethic and then I would have to go through this anymore or just wishing he was dead.The doctor is now suspended and is under investigation by the gmc with the view of being stuck of but unfortunately my son is not the only one but he's been the only child involved.For the norovirus they put him a drug but it caused all sorts of problems with the blood (low platelets low factors for clotting )so the had to quit so now back to square one .Curtis loves school and they are great about everything and great with him.Sorry for going on but I could fill a book about everything that's been going on.HOpefully when the ng feeding starts we will see an improvement

[crocker]

Forgot to say Curtis has agammaglobulinanemia

[john]

hiya,
curtis sounds like an amazing young man, and you are a very supportive and loving mum. these qualities, together with a decent medical regime will hopefully get this very bad situation back on the right tracks!
to live with immunodeficiency and have brilliant medical care is hard enough, but to have to put up with negligent doctors and an untreated virus for YEARS is beyond my own comprehension.
i really hope that a new feeding regime and a new medical team, and the proper management of his pid will give you BOTH a better quality of life.
wish curtis well from all of us here
take care - john

[crocker]

Curtis has still not started his feeding.he was supposed to go in on feb24 then the26 feb and then the 7thof march.I rang immunologist on Friday morning and he was to get back to me Friday afternoon and I am still waiting.Curtis is already worked up about it and all the waiting is making him worse.Just wish doctors would realise the impact it has on him

[liz2mac]

Hi both,
just hugs at the moment, I will get back to you on this,
Liz.

[liziJ]

I can't believe how badly Curtis is being let down. Are they giving you any reason for why they keep putting back the date for him to go in? He (and you) must be feeling so anxious.

Lizi x

[crocker]

Hip hip hurray they have finally got a bed for Curtis so we are going in this afternoon.Just hope it works.

[liz2mac]

Hooray, do let me know how it goes. I've got some information for you which I will post as a new thread in a while.

[liziJ]

I'm so pleased that *at last* a bed has been found. Thinking of you both xx