Feed still not going well!

Submitted by helenb8man on Wed, 09/23/2009 - 15:55.

We are waiting to speak to the dietician as the noecate active is not going well. No diarrhoea on 2g but he looks awful, is complaining of tummy pain and not sleeping as well. I hope she has some ideas of where we can go from here but still avoid modular feeding.

We had one of our lovely community nurses come to the pre-school yesterday to give the staff some training on Ben's condition, tube, feed etc. It went very well. I was suprised to hear that there are only 2 children in the whole area she covers that have jejunal tubes. Almost unique! I used to do a community occupational therapy job for the same hospital trust so I know what a wide area she covers.

I really hope we get the one to one carer we've applied for as seeing Ben on the climbing frame really reminded me how much more supervision he needs.

Wr have to contact the Dr who is the local immunisation coordinator as Ben is due his pre-school vaccines. He can't have the MMR as he is on an immunosupressant but our practice want guidance on the other boosters he is due. Our local consultant wanted this drs opinion as Ben has had so many steroids this year the vaccines may not take well.

It feels like a full time job sorting all these appointments, drugs, pre-school etc.

Best go. Ben screaming his head off!!!!!!!!!!!!

Bookmark/Search this post with:
ShareThis
0
No votes yet
Your rating: None
Submitted by shell74 on Wed, 09/23/2009 - 17:40.

Oh Helen You sound like you have so much on your plate again. The gp we saw yesterday said that us mums who are dealing with this condition should get paid the same as a DR as we have to become health care proffesionals.
Alexandras vaccines were all done seperatly to make sure that she had no problems. Callum had his mmr seperate aswell and he was on steriods.
I hope you get sorted soon.
all the best,
michelle.x

»
Kitty's picture
Submitted by Kitty on Wed, 09/23/2009 - 20:55.

hi helen
I'm really sorry to hear ben's not doing well. how awful that his tummy is bad again. i meant to ask you - do they know why the active causes him so much trouble?

i didn't realise he wouldn't be able to have the MMR - Michelle's advice sounds good to try to get them individually. i hadn't even thought about jabs being due but i think i'd better find out when we are due the MMR too. what other jabs are they due? i've never ever had a single jab reminder from my GP's / health visitors - i've had to find out myself what's due and when.

looking after a child with EGID is definitely a full time job! Rob and i came across some video footage i took of our youngest screaming in pain last year (i videod him to show to great omrond street) and i just couldnt' watch it - it broke my heart to remember him screaming all the time in terrible pain and i couldnt' help him. I am so sorry that your Ben still suffers like that. Lifes not fair.

I hope Ben is in less pain tomorrow.

Kx

»
Submitted by helenb8man on Wed, 09/23/2009 - 22:03.

Hi Kitty

They are due the MMR which is a live vaccine and then boosters of tetanus, polio, whooping cough and diptheria. If you look in his red book it will tell what is due when.

The issue with Ben is his immune state rather than the EGID itself. He had the first MMR without any problems but because he is on methotrexate he can't have the 2nd one. We will see what this immunologist says about the others.

Ben's problem with the active is it's osmolality. A higher osmolality can cause diarrhoea (which it did) and it worse because he has delayed emptying. I don't really understand it all but it is about the number of particles and drawing water into the bowel.

Michelle suggested what her children are on and I mentioned that to the dietician when I spoke to her earlier. She is going to speak to Dr Shah as to what to do next but we are stopping the active.

All good fun eh!

Love Helen

»