Liquid diet, help needed.

Hiya

I'm sorry I don't know much about Elemental 028. My youngest son has Neocate. I'm really sorry to hear your son is just on a liquid diet. That must be awful for you. We have been very fortunate that our 2 sons have both responded well to their medication and diet restrictions.

Your aren't alone though - there are a few other mums on this site whose kids are on total liquid diet and who found the medications didn't work well either.

Are you seen by Great Ormond Street? We see Dr Shah. Does your son suffer a lot of pain? Are you in the process of getting a diagnosis for Autism?

I understand your concerns about being pregnant again. I'm sorry to say that both of my children have EGID and reflux. There are other families on this site who also have more than 1 child with it.

However, now you have a diagnosis for your eldest son, you will know what to look out for with your new baby and you will be able to get help very quickly and that might really help.  I didn't get a diagnosis for my eldest son till after I'd had my second son so I didn't know they could both have the same disorder. However, I wouldn't change a thing as I adore them both and I'm very lucky to have them. 

Also, I do know some mum's who have had more than 1 child but only 1 child has EGID so it isn't guaranteed and your baby might well be fine. 

How many months are you? 

I hope you aren't too worried and that everything goes well for you.  

Kitty

We have been with GOSH for a number of years now, about 3. He is under Dr Hill, somehow got put with the Ceoliac clinic but she is very good. He does suffer with pain almost every day, mainly in the arms and legs. He also gets chronic stomach pain as of the reflux and the medication not working for either reflux or EGID. He has had many upper and lower endoscopy's done to show that the medications are not working, even whilst on Azathioprine he still has intollerant cells all inside him hense why we are now on this liquid diet. Day 3 of no food at all and he will still only drink one meal drink at night when I guess he is absolutly starving. I have tried making them into ice lollies and adding nesquick and crusha but nothing is working. Really dont want him to have a tube fitted but feel we are heading that way. Do you know how I can search for other mothers on liquid diets on here? I am v new and and doing desperate searches....

Thank you for your reply thouh. Oh and yes I have been told that there is a link between EGID and Autism hense me trying for an assessment. My son self harms when he does not understand or is angry at a situation, he starts to literally beat himself up in the head so need it diagnosed if it is that so that I can get help before the next one comes in 3 and a half months. 

Hiya

It's good you are at great ormond street. they seem to be the only place you can get proper help and advice for EGID.  Sorry to hear he isn't drinking much.  Is he loosing weight now?

There are 2 mums on here whose children have had liquid diets and maybe if you go to their blogs and leave a comment asking for advice then they may reply? I think you have to log in to do this.

the links to their blogs are:

http://www.parentsown.co.uk/blogs/helenb8man

http://www.parentsown.co.uk/blogs/shell74

Thanks and I really hope things improve for you soon,

Kitty

Thank you very much for that. Will check them out.

He did lose weight and ended up in hospital so having to be put on the tube feeding method. Will see how that one goes.

Thank you so much again.

Lisa

hi there, i just googled for the exact same problem as you!

was put on the elemental diet this pm for my 3 year old and am feeling overwhelmed.

we are at GOS with Dr Hill too

tell me hpow you're getting on now  and give me a little hope...

Overwhelmed is the norm I feel for having to put your child through the feeding tube especially after they have been allowed food for the past few years. I must say, the first few weeks are tough. I had my son literally sniffing the kitchen for all smells of food, watching his sister eat by almost sitting on top of her - not literally. It was very hard. I am into the end of two months and despite some extra anger issues he had over the sheer frustration of the whole experience Rhys has done really well now. He has gained about 5kilos in the last two months which is a miracle in itself. He couldn't even manage a kilo in a year. I have been allowed to introduce food which is very difficult as he is intolerant to so much. The basics such as rice, chicken, tea, corn etc he just can't cope with but there are some basic ice pops from supermarkets that he can tolerate so he has something to eat at least. I am not sure what the next steps will be. I speak to the dietition every week and a half to discuss new food to try. We are on beans, peas and square crisps over the next week and a bit. One food every three days he is allowed to try. I am at Gosh again at the end of september so will find out what they want to do and let you know of the next progression. Any other questions please don't hesitate to ask. I hope you are managing okay. You are not alone anyhow.

Take care

Lisa

Hi Lisa

It's great to hear that Rhys is putting on weight now but it must have been a really tough 2 months for you. I hope your appointment goes well in September. We are up there seeing Dr Shah in September too.

What happens if Rhys eats the foods he can't tolerate? Is it mainly bowel symptoms he gets? I'm continually baffled by my son - one minute he'll eat and the next he won't, sometimes his bowels seem normal and the next he has strange bowel movements.. He's improved so much and is in a lot less pain so I don't really know whether he's fine to carry on as he is or not. He's not losing any weight as he drinks lots of Neocate and tolerates it well but I guess it's not an ideal diet for his age.

Has your new baby arrived? Just wondering if you had a girl or a boy?

Take care,

Kitty

Just thought i'd jion in!!!!!

My daughter (8) is on liquid  feeds through a gastro nasal ( gn) tube, she cant eat or drink anything for the nest 2 months. then introduce one food at a time. We see DR Lindley at g.o.s , he's really good. My little one has severe celiacs plus reflux and arthritis. Tube feeding can be a nightmare for all the family. It just takes a bit of getting used to. She's fed for 16 continuous hour from 4 in the afternoon till eight in the morning. ( I need some sleep and there's still 7 weeks left).

Anyway just thought i'd let you guys no there are more of us!!!!!

Happy days!!!!

Hi

I'm sorry to hear what a  hard time your little one is having. I was just wondering how they found out she had arthritis? My sons have hypermobility but one son complains a lot about his knees and I had  wondered about arthritis?

Have you had help and support with her ng feeds? It must have been hard for all the family.

Kitty