Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Gastrostomy/ tube feeding support group...

999 replies

Isitme1 · 03/06/2012 12:01

Hi.
I was looking for a support group for tube fed babies/ children but couldn't find anything.
Come and share you experiences and tell us how you are coping and how you felt when you first started with tube feeds.
I will introduce myself:
I have 1 ds- 21 months old.
Poor eater due to severe reflux and severe food aversion.
At his worst he was fed Baby food via syringe into his mouth like meds. He would take 60 mls a day in high calorie milk and a sip of water or juice in the day with no food in between.
He would scream at the sight of his high chair.

Fast forward a few months and he has a peg feeding tube. Hes on neocate advance ( suspected milk allergy) but have kept him on normal food to encourage oral intake. He still has very little by mouth but thankfully he's getting all his nutrients.
The gp put me down as a neurotic mother.
Ds is being seen by top gastric paediatrician.
He's having gut motility checked as his food is still
In his tummy 10-12 hours later and comes our undigested.

Hes had meningitis and septecmia at a young age too.

Come and introduce yourself!
X

OP posts:
Isitme1 · 14/08/2012 22:31

Aww. Bless him. He made it through the day though!
The CN came and werent much use.
I've never done it or seen it happen so I'm scared to touch the button to check water.
I've read that the recommended amount of water is actually on the button top and that says 2.5mls and I know that last week they put 4.5mls in and it's still loose. He has probably lost weight, he got weighed on the 2nd was doing great on 25th centile Grin
The most annoying thing ive had said to me is oh he doesn't need that in him he's not small. Well hello he's not bloody small because of it! He looks so much healthier now!
Thank God

I do hope we all have a nice peaceful night.
Even though I highly doubt it.

Actually before i go sleep I've got another 2 questions for you all

1 ds has had stomach irritation so obv there's been a bleed there and now this blood at site. If needs be would it be ok to give nurofen? He can normally tolerate it but with bleeds and that I'm not too sure...

2 constipation
He's always had it. Dietician keeps saying as he's on a predigested milk there won't be a lot of waste but that shouldn't mean he gets bunged up every few days. The other CN who came last week said he could try other meds to help with it and I asked gp on the phone he said I don't know what else we can give a 1year old. I said he's 2 next month Hmm ds has had movicol in the past maybe that is needed?

I will now say good night Grin
x

OP posts:
Isitme1 · 14/08/2012 22:34

X posted again
Hii 2 old
When ds had peg he had a lot of discharge. Not as much now and so far no infections but yes pegs stay put however it was the the disc holding it inside that could of caused the irritation.

Phew.

Hands are hurting now.
Stupid iPad.

OP posts:
sneezecakesmum · 15/08/2012 21:26

Isitme Grin he looks too healthy to have the button!!! Grin what are they like! You've moved up the league table now with the button. Not a clue what theyre about, but they sound easier to manage than the dangly tube. I guess he will end up with the button though. I would give calpol rather than ibuprofen because of the gastric irritant effect. Its usually OK in the odd dose expecially for children, but I would err on the side of caution.

Well done all the kids who are back at school. Really suprised as DGS goes back to nursery on the 4 sept. We've got his statement amended re his so called learning difficulty. Yes he does have a learning difficulty - its called cerebral palsy and it stops him speaking, moving and handling toys but not his brain from being active! 2old and galli, hope your LOs are over the school/disease phase, DGS gets the lot still so the summer hol has been a glorious respite from illness (not had a single one! fx) Smile

DD is sick and tired (literally) with early pregnancy and I am trying desperately to get DGS to crawl so she doesnt have to carry him so much. His lack of co ordination is mind bogglingly difficult but funny (he thinks he can levitate like the cartoons) Grin Keep on trucking everyone. xx

2old2beamum · 15/08/2012 22:41

Totally agree with sneezecake re Ibuprofen DS's paed advised us against it. It can cause gastric bleeding. I can't take it, gives me indigestion.
We always use Movicol for him too and he is on a predigested, but my thinking is it lacks fibre--but what do I know?
DD had a strange "episode" went puce thrashed around BP and gave him
Diazepam . So guess who will not sleep tonight sad
Sorry about your DD's sickness Sneeze that is one thing I remember about
pregnancy Oh dear
Sleep well all you little Scallywags and give your Mums a break Grin

Isitme1 · 16/08/2012 16:54

Aww glad he's had a break from being ill
I will only give it him when needed

Proper update later
X

OP posts:
2old2beamum · 16/08/2012 19:17

what haveI done DD had UTI last week, needed to be catheterised due to
funny fanny strange anatomy, given AB's slowly improving.'Phone call from hospital the AB's not the right ones. Plan to recatheterse and start different AB's. Round trip of 60+ milesto Hosp oh says I' I'll do, it that's a good idea they say. Have not done it for over 30 years lady's bottoms haven't changed have they??? Grin
Apart from this all well Thursdays always hard as Old Fart teaches SN adults so I am stuck indoors (even I cannot push 2 wheelchairs at once)
Hope you are all well and enjoying the sun
XX

2old2beamum · 16/08/2012 19:20

Dreadful punctuation blame computer

Isitme1 · 16/08/2012 22:52

Lol nope they haven't I checked Grin

Was there sun today?? Shock didnt see too much round here.

Next few days are quite busy but will pop on here and there to see how everyone is doing, it's eid in the next 2-3 days.
I rememeber telling my friends at schools not that long ago it's our Christmas (for those who don't have a clue what I'm talking about)
The main things are:
Lo outfit- new shoes and clothes and hair dine (cut)
Outfit. Complete outfit: shoes, makeup, hair extensions etc
Then the food
Then the menu
The. Giving kids money
On eid we go to relatives houses dressed-like-Christmastrees
Very ott
We eat have a natter kiss everyone on the cheek
Give kids money
Come home and wait for angry mob to arrive to do exactly the same at your house lol. Sometimes even outfit change

Anyway
Ds has water changed tomorrow. They will show me how it's done. I will mention how loose it is. It seems to 'come outish and bendish'

He's cutting teeth still. I was told that as he cut his first tooth so late and still doesn't have a lot he will have gaps when he gets adult teeth as they won't grow Sad

How is everyone?
Beemom how is dd?
Tooloud how is ds?
Starfish how is ds?
2old how are Los
Gali how is ds
Sneezesmum how is dd and dgc

Think think think have I left anyone out?
Im very sorry if I have
X

OP posts:
gallivantsaregood · 17/08/2012 10:15

Hi Everyone,

What a dreich ( good old scottish word) day it is here. It is pouring :(.

Enjoy all your preps for Eid and then the day when it comes. Can we swap the present giving tradition for money giving?? DS has way way too many toys and if he wasd given money at Christmas we could put it in his bank for him ( great for space saving too :) )

Hope everyone else is well and has some sunshine.

starfishmummy · 17/08/2012 10:45

ISITME

I know there are different makes of button, but I have just looked at ds's and the numbers printed on his button are the size of the button, so are they sure about the amount of water? DS has had a few different button sizes but the balloon has always held the same amount, which is 5ml.

Ds's current button is quite loose, I got the nurse to come and do a change and re-measure him but she said it was fine - it doesn't seem to bother him and we are just used to it now.

gallivantsaregood · 17/08/2012 12:09

I agree with Star. The numbers on Ds's button are the size. 14fr ( diameter) and 2.0 cm ( length). His button should have 5 mls in but according to the paperwork it can have 10ml. It is a Mic-key button.

xxx

Isitme1 · 17/08/2012 12:23

Lol and we do Christmas too so yup ds doesn't have a lot of toys but niece and nephew (who live close by) have theirs here too. So the 3 of their collections together could fill a room lol.

It's his birthday next month but I don't want to get him toys, is that normal lol. Any ideas on what to get him?
X

OP posts:
starfishmummy · 17/08/2012 13:31

I have a bit of peace as ds is at a dj workshop courtesy of short breaks. We are off on our holidays tomorrow, so really didn't need the door catch on his feeding pump to break today.......tried gaffer tape to no avail. We do have two pumps so not entirely a disaster, but don't really want to have no back up on holiday.

So next monday we have to wait in the holiday cottage for them to deliver a spare. But I am looking on the bright side - if the weather is bad, we wont mind staying in and if it's nice I'll pack dh and ds off to the beach while I sit in the garden and knit in peace!!

Isitme1 · 17/08/2012 14:14

Bless I bet it's nice to have a bit of a break!
It's a good thing you have 2pumps.

And a day in the garden all alone sounds lovely Envy

How does everyone do flights?
I'm thinking about going to see dh next month so want to be prepared with feeds and pump and what not.
X

OP posts:
starfishmummy · 17/08/2012 14:35

I have never been abroad with ds so can't speak from experience but you may find that the company who are contracted to provide all your tube stuff/feeds will be able to organise it for you.

DS and I are members of PINNT which is a tube feeding support charity and I know they have good booklet about holidays abroad, but you may need to be a member to get it. If you google PINNT you should be able to find their website. I think the subscription is free for this year as it's their 25th birthday!

2old2beamum · 17/08/2012 15:50

Our Beautiful Boy was on TPN and NJ feeds. We found airlines very good but we did inform several weeks before. Were also very aware that pumps must not be scanned, we took him abroad many times to make his short life as full as it could be. Our feed company will deliver in this country and to the nearest airport to your destination
Isitme just go for it and enjoy we were treated like Royalty by KLM Airlines.
starfish we belong to PINNT, they were so helpful when our son was on TPN.

2old2beamum · 17/08/2012 15:58

Isitme have a good "post Ramadam" hope I have it right [confused}

Isitme1 · 17/08/2012 16:18

Thank you very much2old :)
I will slowly start to contact the relevant organisations to help us have a smooth trip.
Hmm the nearest airport to where we will be going is about a 3/4 hour drive lol

I'm on the way to google pinnt
:)
Chat soon
X

OP posts:
Isitme1 · 17/08/2012 16:45

Done
Signed up
Yep it was free lol
I think it takes 48hours
Can't wait to check their holiday guidelines
Where I'm going is a very dusty place. Think India Pakistan lol
So I'm a little worried about infection and that.
Will see what happens

X

OP posts:
2old2beamum · 17/08/2012 17:04

Also forgot to say excess baggage was always waived.
go for it life is for living

gallivantsaregood · 17/08/2012 18:14

Isitme what about memebership to a zoo or something if you have one nearby? Remember to ask for a disabled pass and you should get in for free with that too :) I had it for Edinburgh zoo for Luuk since he was 2. It was fantastic. Don't do it now he's at school.

FLIGHT ADVICE: Whether it is time for a feed or not, attach pump and switch it on when going through security, mean's there will be no need to taste the feed which is in the pump bag. Take a few new little syringes and if asked to taste any other feed/water you are taking through tell them that you can't but are happy to put a syringefull into his tube ......smile niceley whilst telling them this. You are being super helpful. If you are going on a long flight and ask you to open sealed bottles/cartons/bags of feed which are not going to be used for several hours. Refuse due to the risk of bacterial growth and it potentially illness in your child. Have a letter from G.P./Consultant or such like stating that you need to take pump/feed/meds into the cabin of the plane.

TAKING SUPPLIES ON HOLIDAY: Contact the folk who supply your pump supplies ( they may also suply your feed). They should be able to have your supplies delivered to your destination if you notifiy them 6 weeks before you will need them. If they also deliver your feed that too should be able to be delivered to destination.

If not remember that most airlines will give you extra baggage allowance for medical needs ( again the letter from G.P./Conultant) will help with any dispute. put al the medical stuff together into one bag and clearly mark it medical. In addition make sure you have a few day's worth supply of everything ( feed/tubes etc) dispersed throughout the bags of everyone in your party. One bag may go missing, chances of them all going astray is not big.

Check with your pump supplier that the pump will work effectively on the voltage of the country you are travelling to. Ask them for a spare if you don't already have one so you have an extra one if it breaks. Remember to take a SPARE BUTTON and extra extention sets meds, in case you lose one etc.

I usually make sure I have at least 3 days extra feed/meds in case of delays etc too ( although I ran out of one med whilst in Holland - bad mummy!)

Take a copy of any repeat prescription you have. If in the EU make sure you have European Health Card. This is free but needs to be ordered online and is free. If you havew one already, check it is valid as they expire after 3 years.

Finally, if you think you may need to access medical care where you are going, research best/nearest medical facilities before you go.

BEFORE YOU GO: If you are travelling alone with DS, ring the airline and ask for special assistance. They will then help you get from check-in to the gate, early boarding and help getting off the plane and through baggage collection/customs etc. Have always had fantastic help.

Last but not least make sure your travel insurance is adequate and that EVERY single pre-existing problem is disclosed and that you ar ecovered if something happens and DS becomes ill ( this should be automatic if you are both on same policy)

Bit of an epic and I'm sure most of it you will have thought about, but hope it helps

Starfish: Have a great holiday. Don't you just hate the timing of stuff. Ds's pump went completely wonky when we were in Holland. It still ran but the display was showing all sorts of weird shapes/letters.....everything except numbers!!

Happy weekend to everyone xxxx

I forgot to renew my PINNT membership, must go check it out. x

Isitme1 · 17/08/2012 18:37

Thanks for that. I just checked ticket prices and it's 1000+!
Ds is no longer am infant now he is a child unless we go before his birthday which is a big no no as he has appointments and there is no way 10days is enough for me to enjoy my hubby Wink

If worse comes to worse I could do bolus but verrryyyy slowly as it makes him sick.
That's a lot to consider and I think the whole medical baggage allowance is brilliant as most of it would be ds feed and supplies.

Off to email the airline as the person who I speak to wont understand me and this way they can forward my message to someone who understands

X

OP posts:
sneezecakesmum · 17/08/2012 18:48

Hello. Brilliant isitme re going on holiday (and brave) ! I do hope it goes alright, and you enjoy the ead festival (think it comes after the fasting for ramadan when you can all pig out +++ and enjoy a whopping great party!). A colleague brought in ead sweets for us once and they were yummy and very fattening.

DD is well but tired, bit nauseaus and feeling cold Confused even though it feels warm to me. DGS is fine, enjoying an illness free period away from nursery Grin Just wish all your children would STAY WELL for a few weeks so you can catch up on sleep. DD dreamed I won the lottery...I did....£2.50! Will reinvest it in another lottery ticket! Am just about to blow my computer up as DS has downloaded windows 7 from torrent...so probably illegal! Shock

DD needs to work on DGSs sleep (?cut out afternoon nap) to get him going through the night, and also to be out of nappies before he is 5 and starts full time school. All of which looks a pretty forlorn hope at the moment.

starfishmummy · 17/08/2012 19:47

Thanks gallivant!

We just have to get it all packed and in the car.....
Oh for the days when I just flung a few clothes in a bag and went.

Isitme1 · 17/08/2012 20:38

Lol. I used to take at least half of my makeup (which is a lot)
Loads of undies, clothes and at least 5 pairs of shoes.
The last time I went I took 2 pairs of clothes plus the one pair I was wearing and makeup in my handbag and 1 pair of flip flops and the heeled boots I went in lol.

How are the Los?
X

OP posts: