The aim of this blog is to provide a meeting place for parents who have children with feeding problems. We also hope to provide support and offer our own personal experiences. Please join our facebook group, follow the blog, comment, use the questions/answer section at the bottom of the blog, or if you prefer, send us an email and share your stories with us.

Tuesday, 13 November 2012

Tube wean summary.

I had huge hopes of posting daily blog updates during the whole of Sophie's inpatient tube wean, however lack of internet and signal put a stop to it.


Frustrated doesn't even come close to describing my feelings about that.


The reason I wanted to document the whole journey was to help others above all else.


We started this journey 5 years ago and it has been a very long and rocky road in which we have travelled. Many tears have fallen, lots of anxiety, arguments with health professionals and no one who we could conclusively say would definitely be able to help Sophie become an eater.


This is the main problem in the UK.


Where do you go and who do you turn to when you have a tube dependent child?

You can search the internet until your fingers go numb but nothing in the UK stands out. All you find are the many feeding centres abroad which cost a lot of money to attend and leave you with very little follow up once you return home.


Doctors are very good at formulating a plan to ensure a child doesn't completely starve to death ie insert a gastrostomy or NG tube, and very detailed guidance on how to care for the tube, however you will never receive a detailed plan on how to succeed in weaning your child off of a tube and re establish oral eating when the tube is no longer needed.


Here lies a huge problem which actually affects more families than you think.

Sophie wasn't a fussy eater, she was tube dependent and missed all of her developmental stages regarding eating due to oral aversion (oral phobic). This was the main problem, she had absolutely no concept of what eating was and what she had to do. These milestones are learnt during the first year of life, but due to Sophie's severe reflux she stopped having anything in her mouth and missed every experience needed to form the basic groundwork every human being needs, to know how to eat.


Where on earth do you start in teaching another person to eat when the only experiences they have had have been negative and painful?

This was where we were stuck and almost helpless. That was until we met Clarissa Martin.


Clarissa has been the feeding psychologist I have referred to for quite some time now. She has helped guide us to prepare Sophie for a time when we collectively thought she was ready to be tube weaned. Run too quickly and the process would fail, leave it too long and the process would be too late.

What a quandary eh?


Clarissa didn't work alone in the lead up to the in patient tube wean. She had drafted in the help of Dr Terry Dovey who is also a psychologist and was actually the missing link we needed to give Sophie that extra push needed.

Together they formulated a plan and both were present for the tube wean.


The end result being...


Sophie has now been tube feed free for over two weeks and is EATING.

I don't just mean drinking supplements, eating liquid foods or licking solid foods either, I mean actually eating!


She eats toast, biscuits, crisps, fish fingers, fruit and you want to see her get down a sausage roll. Currently she is exploring everything and trying whatever she fancies and I have to say it is an absolute joy to see.


Soph still has a very long way to go, she's moving through the stages of eating in a matter of weeks where all other children have months and years of practice and preparation. We probably wont relax for a good year.


Her gastrostomy will stay in for a while just in case things change dramatically or she becomes very poorly CF wise. We need to see that she can cope when poorly and manage to maintain eating even if just in small amounts.


Although this journey hasn't fully concluded we are very much on the homeward step and we cannot thank Terry and Clarissa enough. Sophie will still have many ups and downs as she works through the stages of eating.
Psychologists have terrible reputations when it comes to feeding disorders but I just want to tell everyone I can that this isn't the case with these two.
Sophie was calm and happy for nearly the whole process, a process in which her whole world was turned on its head. For her to be able to come through this happier than ever is down to the way she was looked after by Terry and Clarissa.

I really just want to conclude by saying if you are a family in the UK in a position where your child is tube dependent you are not alone. There is help available and Terry and Clarissa can both be contacted for possible consult :-

Terry Dovey via LUCRED: t.m.dovey@lboro.ac.uk
Clarissa Martin at midland psychology: clarissa.martin@midlandpsychology.co.uk

Thank you Clarissa and Terry and thank you to Sophie's amazing CF team who also provided constant support throughout the whole process.

I haven't documented exact details of the process and protocol Terry and Clarissa devised as it was tailored to suit Sophie and every child is very different, but if you have any questions about the process then please ask :)


Taken from my personal blog Lungs Behaving Badly.

Friday, 18 March 2011

Update On Group

First group of children have now finished the first picnic group in Stafford and we all feel it has been a big success.We have had loads of fun and lots of play,stories and getting very messy.It was so much fun and they did really well with the foods that they were playing with each week.Obviously messy play isn't for every child with feeding problems but as these children are referred to us then we know it is ok for them.We are doing our next group in May and i'm looking forward to helping some more children on their journey to eating.
Once we have results from the first group i will be going back to the PCT and giving them feedback and hopefully they will start listening to us and start helping the children.As alot of you are aware there is a big lack of services to do with feeding problems and it needs to change.
The picnic group is one of only two groups in the country so we are really lucky to be running them .But we have alot of support from feeding specialists so with their help have got them up and running.
I will keep you updated on how we progress from here with the PCT and how our groups are going.

Tuesday, 1 February 2011

First Day Picnic Play

Well it was the first day of the picnic play group yesterday at last!
We were feeling really excited that at last there is something out there for some of the children with problems with food and i was so glad that i could be a part of that.I hope that in time we will prove that these kind of groups are needed and we can do the groups on a permanent basis.As a parent who has been through the experience and come out the other end with all ok i know what a difference in my daughters case that messy play made.Even just meeting other parents and talking helped me alot as i felt so alone and the only one with a child with feeding problems(which obviously i'm not but thats how i felt)
The groups are going to be great fun for all involved( including parents) with alot of getting messy and making food fun to be around.I will keep you posted on how we are getting on and lets hope these groups are around for a long time and help our children on their journey of eating.

Tuesday, 25 January 2011

At Last Picnic Play Group

Sorry it has been so long since last post but we have been very busy trying to set up messy play groups in Stafford and at last we are just about to start them after alot of hard work.First Gemma and i managed to get some funding which we applied for which was brilliant.Then it took me ages trying to find a room which eventually were given free of charge.Then it was getting all the equipment that we will need each week which soon ate away at the budget.I think i have about £1.50 from the funding left which might be able to buy us a couple of apples!
The groups are going to be very structured with getting messy alot and making food fun.I'm really looking forward to actually being able to try to help some children who have feeding problems and there is a great team of professionals(yes there are actually some but not many professionals who do understand our concerns on feeding problems) who are really helping us to make these groups a reality.Once we get going with the groups and see how well they work then we will be going back to the commissioners and proving to them that messy play or play picnics as we are calling them do work.It is about time the services were provided for our children with feeding problems and if i have evidence they work the commissioners will have to listen.I will keep you posted on how we are doing and i just wish that there were more of these groups as in many cases messy play does help.

Tuesday, 16 November 2010

Nice to see you all.

Just a quick thank you to everyone who came last night to the Wacky Warehouse where the kids enjoyed themselves and the moms and nans could have a good chat.It was a great night and hopefully we can have more get togethers soon. If anyone has any ideas of places to meet up please let us know.It gives parents a chance to talk to other parents who have children with feeding problems and to share our experiences and general chit chat.Thanks again.

Thursday, 21 October 2010

Get Together

Hi
Just to let you all know our next get together will be Monday 15th November at Catch Corner pub which is a Wacky Warehouse ,Junction 13, Stafford, 6pmish.
Hope to see you all there.

Friday, 15 October 2010

Recognition.

Hi all

Ann and I were nominated for an award and we attended the ceremony yesterday. It was a complete shock and we had absolutely no idea.

We were nominated for the 'significant contribution to improving services for patients and carers' award.

Well we only went and won it!

Here are a few photos of the trophy and our certificates.













It was a very interesting day lets say and Ann and I had lots of fun. We aren't really interested in winning trophies etc but to be recognised for all of our hard work is nice. Just to know that someone out there acknowledges what we are actually trying to achieve is great.

We will continue to try and get the services improved for all of our children with feeding problems and neither of us vow to stop until we do.

We are currently in the middle of a battle with the PCT but as soon as we get somewhere we will blog about it.

Take care x

Tuesday, 28 September 2010

Tube wean begins.

Big news (I will duplicate any tube weaning updates via this blog and our personal blog).

Had the appointment today with Sophie's feeding psychologist and dietician.

Well...

Today we have started to tube wean Sophie.

OH. MY. GOODNESS.

Before you freak out, we wont be going guns blazing and just cut off her tube milk completely though, it will be a gradual process. Sophie has 5 bolus milk feeds throughout the day via her tube.

The first that we have culled is her teatime feed.

We will try this for one whole month to see if it will trigger Sophie to associate that eating food will cure the hunger sensation. If this is successful then the next to be culled will be her breakfast feed and so on until no tube feeds left.

This is not going to be an easy ride, currently Sophie gets very cranky when she is hungry and wont normally settle until she has whichever tube feed she is due.

ALL of her nutrition has been via her tube for nearly three years!

Monitoring her weight is going to be important and I will do that each week and then speak with her feeding team for a progress report. I am so glad we have them on board, I trust them immensely and I know they have Sophie's best interest at heart.

There is no concern with potentially losing some weight as she currently has a fat supply that would put a hibernating animal to shame :)
Obviously bowels are another area that will need to be monitored closely too. They will also liaise closely with Sophie's CF team and bloods will be monitored if deemed necessary.

I cannot emphasise how hard this whole process has been.

There have been lots of tears and heartache.

Until you have a child that would rather go to sleep and become unconscious than try a tiny morsel of food, I guess you will never fully see how difficult this has been for us.

I know it is going to take time, there will be huge set backs, there are going to be days where it will seem easier to just give in and tube feed, there are going to be days when we have to go back and tube feed, but I am excited.

I am nervous.

I am apprehensive.

This has to be tried though, for Sophie's sake.

So this is it, the beginning of the end hopefully. The end of one of the hardest battles I have had to endure with my daughter so far.

I hope you stick with us, I know we are going to need lots of positive energy and would love you to join us on this huge journey of attempting to convince my three year old daughter that eating is enjoyable!

Day 1 pictures.














Take care all

xxx

Friday, 24 September 2010

Sickness Bug

Why is it that if your child has had a feeding problem it is always there in the back of your mind that the problem will happen again.Amelia has been sick the last couple of days and it still goes through my head What about if she doesn't want to eat after the sickness has gone? I know nobody wants to eat when they feel sick but i just can't help myself thinking these things.MAD.Of course she did ask for food today which was a relief. All this got me thinking of the daily stress of trying in the early days to get Amelia to eat. Of having to let her eat at her own pace when really i was panicking in my head that she hadn't ate enough that day. It is so tempting to keep asking her if she'd like this or that to eat but know you shouldn't. It is so frustrating and i honestly don't think that the professional people realize how much of a strain it is on the parents and families of the child.I know even now i will tell my partner off for pushing Amelia to try to eat something when she doesn't want to it is just in our nature to try to feed our child.
What is also frustrating is having meetings with the PCT and then not hearing from them again.We have requested another meeting with them to meet up and get feed back from our last meeting but have heard nothing.Gemma and i are trying very hard to get better services in our area for children with feeding problems and still two years down the line we are still trying.But we will keep going and keep trying because it is about time people had the support and services they deserve.
Does anyone in the UK get good services where feeding problems are concerned? i would be interested to know as i haven't heard anyone say they have.Let me know.What about other countries how do you get on?

Monday, 20 September 2010

Party time

Amelia had her birthday at the zoo yesterday and had a brill time.We went up to the castle in the zoo grounds on a train and then into a room to see some little animals.This year it was a lizard, rat and chinchilla which they could stroke.Then they made a sand thing to take home where they pour different coloured sand into a container.Then it was into another room for some food and i was lucky enough to have Sophie (who is Gemma's daughter )on my lap.You can read on their blog how she got on at the zoo . Then it was face painting and then we could go round the zoo and on the fair.It was a very tiring day but we had loads of fun.Can i just say that it was lovely to meet Sophie at last and she is a lovely little girl.
By the way at the dentist that i was dreading Amelia did well and let him look in her mouth and he said that it is fine to leave it so that was a relief but trying to tell Amelia in future do not bite on plastic its not a good move!
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