Will my child ever eat?

Update On Group

2011-03-18T14:13:00.002Z

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.

First Day Picnic Play

2011-02-01T10:49:00.002Z

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.

At Last Picnic Play Group

2011-01-25T20:46:00.002Z

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.

Nice to see you all.

2010-11-16T13:49:00.002Z

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.

Get Together

2010-10-21T11:08:00.002+01:00

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.

Recognition.

2010-10-15T15:58:00.003+01:00

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

Tube wean begins.

2010-09-28T18:28:00.001+01:00

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

Sickness Bug

2010-09-24T16:11:00.008+01:00

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?

Party time

2010-09-20T11:10:00.002+01:00

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!

Dreaded Dentist

2010-09-15T15:05:00.002+01:00

We know because of Amelias feeding problems in the past that she has some cavities and we were hoping that we could just try and keep them at bay for the time being.But Amelia decided the other day to try and bite a plastic top off a bottle which in turn got stuck inbetween her two front teeth.When we got it out part of her tooth had gone too.So tomorrow she has got a brill day, in the morning the dentist and then in the afternoon a trip to hospital for a heart murmur check up.she used to be ok with the dentist and would quite happily open her mouthand let him look but last time it was shut and she refused point blank to open it.I blame a previous appointment to see her doctor who when he asked her to open her mouth she did and then he shoved that stick thing on her tongue to look at her throat when she started to gag.So now it is always no way is anyone looking in my mouth.I don't blame her really but i can see us having tears tomorrow.I will let you know how we get on.

Experiences Shared

2010-09-03T10:23:00.002+01:00

We would love to hear your stories and experiences of going through the process of getting your child to eat.Have you found the doctors helpful or as in my case not? Have you tried messy play and how did it go?Have you got a child who is ng tube fed like mine was and your experiences with dealing with it?Or is your child a fussy eater?We would love to hear from more parents andhear how it is going.
At the minute we are trying to set up a messy play group in our area and are on the look out for a venue and can't wait to get it started.
Can i also say thank you to those who met up with us at the last get together and Amelia really enjoyed herself at the Wacky Warehouse.Hope to meet up again soon.

Still making progress!!

2010-08-21T17:25:00.003+01:00

Anyone sense a theme here?

Sophie does love her ice cream! She doesn't tend to pose with any other foods she's been trying, we are working on this though.
All progress and working towards her tube wean, which hopefully may start in the next few months. Scary!

Take care.

Meeting With Primary Care Trust

2010-08-17T18:50:00.002+01:00

Just to let everyone know that today Gemma and I had a meeting with people from the pct to try and find a way of getting better services for children with feeding problems. It all went well and obviously they can't promise to straight away give us funding to improve services but it was a very positive meeting and as soon as we have any feed back from it we will let you know.

Next social meet up.

2010-08-12T22:06:00.000+01:00

Hi all just a quick post to say that the next meet up will be on the 23rd of August 2010, meeting between 18:00 - 19:00 at the Catch Corner pub, junction 13, Stafford.

It's a Wacky Warehouse pub so children (and all the family of course) are welcome.

For a detailed map of the pub's location please contact us via the comments section or email.

Look forward to seeing as many of you there as possible. Any questions or suggestions then please get in touch.

It's poll time!

2010-08-03T13:27:00.002+01:00

Just a quick mini blog to let you know we have activated a quick poll to see how you all found us. We are aware we have a large volume of traffic passing through, which we are very grateful of so thank you for coming to visit! We are just curious as to how you got here :)

We have also added a guestbook so please please stop by and say hello.

Many thanks and keep your stories, questions and experiences coming in.

xx

Sophie's psychologist appointment.

2010-07-30T19:29:00.003+01:00

Hello all

Well today Sophie and I went to see her feeding psychologist. Sophie seems to love her now and is not content unless she has covered her in kisses and cuddles.

We had a good chat about how Sophie's eating is progressing. Currently she is still only having small amounts of tastes but is drinking more and more. We discussed that Sophie still has no real idea what hunger is so she cant associate food with being the cure to hunger.
The plan of action is to start possibly tube weaning Sophie. I will meet with the psychologist and Sophie's feeding dietician in September to discuss the full plan. I have to bring a list of all of the foods Sophie is willing to taste/try even if it is just a lick etc We will then formulate a full battle plan.

The hope is to get some improvement with Sophie's eating by the time she goes to school. This will give us a year and we are all ready and willing to try!

I know this isn't going to be easy and Sophie is going to very miserable for possibly days and days to start with, but it will all depend on how quickly we can get Sophie to associate eating with stopping the hunger sensation.

Wish us luck and please pass on any tips or experiences of tube weaning!

Sophie has also being having problems with her bowels, more can be read about this on her CF blog http://lungsbehavingbadly.blogspot.com/.

Take care and please continue to email us your stories.

x

Diary of Graz

2010-07-24T14:25:00.002+01:00

Today i found the diary that we wrote while at Graz and thought i'd share it with you . Obviously i will try to keep it as short as possible and just put the important bits in.
Day1
Arrived at the hotel and settled in.Right outside our room we had peacocks, ducks and goats and llamas so they were enjoyed by Amelia.
Day2
Hospital today and Amelia was weighed.She is 9.35kg.Amelia went to see an occupational therapist who was pleased with her development side of things.The doctor took her off her daily feeds through ng tube and then we went on to play picnic where Amelia enjoyed playing with food and getting messy.On the night she had been on the pump feed for 1 hour when she asked for a drink and had a good amount.
Day3
Today saw the physiotherapist and Occupational therapist and then on to play picnic.Amelia was given a crisp which she put in her mouth and sucked it.We were called to see the doctor and he told us to reduce the pump feed at night by half and possibly next day take her ng tube out.Amelia weighed 9.2kg.At night she asked again for a drink.
Day4
Amelia was on 250ml on pump feed last night and today seems restless.We saw the physio this morning and she said if the tube comes out leave it out.At play picnic she was putting different foods in her mouth.Doctor told us to give her 100ml feed tonight.
Today Amelia has had 2 cups of drink.Weight 9.05kg
Day5
Amelia drinking juice and nibbling at food today.Today she didn't seem happy.The lady was trying to get her to play with plastercine and she wouldn't touch it and trying to get her to sit in a kind of swing but she wasn't interested.She was also sitting Amelia in a plastic bath and putting dried lentils over her hands and feet.Another lady had a puppet and asking Amelia to feed the puppet.The tube has come out so leaving it out.She has had juice and some breadstick today.Weight 8.9kg.
Day6
Amelia grumpy today .She had blood test and is dehydrated so had to repass tube and give her sort of salt water.Went back to hospital on night to check blood all ok.Weight 8.7kg
Day8
Asked by the one doctors why Amelia had the tube back in so explained shehad been dehydrated.She asked me when i wanted it out and i said now so she told Amelia to pull the tube out and say good bye to it.I cried.I explained Amelia had a liking for coke drink and she said that was fine its all calories.At play picnic she was constantly nibbling and she has been drinking too.
Weight 8.6kg
Day9
The lentils were used again over Amelias feet and at play picnic she was nibbling alot.She has also drank half bottle of coke and cup of tea.
Weight 8.5kg
Amelia had nibble of toast this morning and some tea. After the play picnic went to the pub where Amelia enjoyed licking mayonnaise off lettuce .
Day10
She tried some milk this morning.Today at occupational therapy Amelia went in the swing and enjoyed herself and was touching the plastercine.She has ate nearly half a bar of white chocolate today.
Weight 8.5kg
Therapists said that Amelia could go home if we wanted to as they are happy with her progress.At play picnic she was trying soup and crisps.
Weight 8.5kg
Day12
Amelia has gained weight today BRILL.
Weight 8.64kg
Day 13
Unfortunately Amelia caught a virus and is in hospital but still the nurses are told not to put ng tube back in.
Amelia was in hospital for 3 days and then i caught it so thank goodness my brilliant mom was with me and looked after us both.
The doctors were all pleased with Amelias progress and were happy for her to come home where she carried on trying different foods and drink.Even though Amelia lost weight at first and it wasn't easy going to Graz it was the best thing we could of done and so pleased we were able to go there.

Update After Open Day

2010-07-21T15:31:00.002+01:00

Just to let you know whats been happening since the open day as i don't want you to think we've forgotten about you all.Gemma and I have met up and we are now looking at getting funding so that we can set up a messy play group which everyone seemed interested in.I'm not going to pretend and say it is going to be easy to get but it is worth a try and as soon as we hear anything we will let you know as we are really eager to get them started.
Also we are in the process of getting our own web site with forum so that is exciting too.
We are also looking at our next meet up which will be in August at a pub in Stafford which is child friendly as soon as we have details i will let you all know.
Can I thank people who came along and also those who since have given us ideas of how to get funding etc .
Looking forward to seeing you all again

Nicky and Becky.

2010-07-19T17:06:00.003+01:00

Hello all, i'd like to add a great story from a parent who came to our last meeting. I'm just going to post the email (with permission) that she sent me. I know this parent has had a long battle with her daughters eating problems which weren't medically related.

Hi

I came to your meeting last night, I was the one wearing the red cardigan, who had a 12 year old daughter who had a fruit and veg phobia.

At the age of six months I tried to introduce lumpy food, I remember chopping up a necterine finely and putting it in a yoghurt, she gagged and spat out all the bits (did try other things to) . Up until the age of 12 1/2 months I was mashing up vegetables with her potatoes, I tried to get away from doing this but could not get her to voluntary try any fruit or veg. I went back to mashing up veg in potatoes but once she had learnt to talk she protested about what she was eating. From the age of 3 I have tried to get some advice/help, trying all sorts of ways, being firm, being nice, bribary, giving praise, doing charts, sticker rewards, helping me to prepare meals, growing own veg, brought a childs book on the human body explained why important to eat healthy, warned her of health risks i.e cancer, heart attacks. At age of ten she was able to touch them without freaking out, At age eleven got to a stage where she will lick, taste and swallow a very small piece of fruit or veg. But we have not been able to progress any further.

This has been a very long and tireing battle, listening to family and friends they all think I am making a big deal out of nothing and that I should just ignore it. At the end of the day I want the best for my daughter and I cannot give up. But saying that coming away from your meeting made me feel like got to make a decision been going on too long and it has been getting me down. When I went home I wrote out a questionnaire for Becky to answer, asked questions like Do you understand why it is important to eat F & V? Do you want to eat F & V for you or for mom and dad? Asked why is eating F & V so different from eating any other foods as she eats lots of different textures? The outcome was that she really wants to do it but can't. I told her that I feel like giving up now, and if she wants me to leave her alone I will (I must point out I am not constantly on to her, every now and again I try to encourage eating F & V). We both shed a little tear and she hugged me and said I really want to overcome this, she then asked if she could have some grapefruit, I thought here we go again I will cut a tiny piece off she will turn her nose up at it, gag then throw up on my kitchen floor, but how shocked was I when she ate the piece said it was nice and ended up eating half the grapefruit. I then opened a tin of mandarin oranges and she ate 4 segments. She was so pleased with herself and I was over the moon too. She said that she is really going to try hard and does not want me to give up on her. After seeing the specialist at the hospital Clarissa or Rowna she always comes back with a positive attitude but it never lasts very long, I hope that this is the start of something new, and her enthusiasm will last she has drunk her orange juice this morning which is classed as one portion of fruit and veg and hopefully she will eat the other half of grapefruit after school.

I think your group is such a good idea because parents do need support, as I have felt not had support from family and friends. I do understand how hard it is to try to overcome a phobia as I have a phobia of snakes, but fortunately snakes are not a part of my everyday life. I have also put myself in Becky's shoes and tried to eat a prawn (which is a food I think is the most disgustingest thing I could put in my mouth) I went through all the anxieties that Becky goes through, smelling it, lifting my noes up, squirming when its in my mouth, gagging, quickly swallowing it washing it down with a drink as if its a tablet. So I do have some symphathy for her and have tried putting myself in her shoes.

I will keep you posted on our progress, I look forward to the day when she eats what is on her plate without creating a fuss.

Kind Regards

Nicky Moore

Update from the previous email.

Still making great progress.
Friday she had a whole portion of carrots and peas
Saturday we went to a party and she tried cheese and pineapple on a stick + had some strawberrys from top of a gateaux.
Sunday Had a portion of runner beans from my dads garden, enjoyed them and had some more!, also had rhubarb crumble and a piece of strawberry flan.

Beckys whole attitude towards trying fruit and veg has changed totally. In my last email I said that I look forward to the day when Becky eats a meal with vegetables without making a fuss, well today (sunday) that has happened!

Kind Regards

Nicky Moore.

Please continue to send us your own stories and experiences. They really do help other people.

Take care

Gemma x

Thanks

2010-07-15T11:43:00.002+01:00

Gemma and myself would like to thank everyone who came along to the open day .It was great to meet you all and hope you found it helpful.( It was nice that a group of parents could get together who all had a child with feeding problems and know they weren't the only one out there).
Next week I will be meeting with Gemma and we will be looking at what we will be doing next with the group.Im hoping that we can set up a messy play group as that was one of the things that parents said would help their child more than anything so we will be trying to get a room etc asap.
If anybody has any ideas at all then let us know as they would be much appreciated.Also if there is any suggestion for a name for the group that would be good.If you aren't in our area and need our support let us know how we could help you.We know there are alot of parents out there that are having to deal with feeding problems and feel very isolated with this but please if you need support we can give that.
Also feel free to put your story on the blog and ask any questions, there might be someone out there going through a similar situation and give you their advice.

Last Day At Jo Jingles

2010-07-12T21:54:00.002+01:00

Amelia had her last day at Jo Jingles this morning as they broke up for summer hols and she can't go back as she starts school nursery in September.Jo Jingles is a dancing and singing for children up to the age of 5 and they use musical instruments too . Amelia loved going and I will miss it just as much as Amelia.
When we were in Graz we took our Jo Jingles music with us and it bought a bit of entertainment to our hard 4 weeks. We even lent it to another girl who was there who really enjoyed it too.
I will miss putting bean bags on our heads and trying to turn round or the walking in the circle doing 'the wheels on the bus'.Thank you Jo Jingles

Open day.

2010-07-05T13:18:00.002+01:00

Hi all.

Our open day is drawing near and Ann and myself are finishing off all the final details this week. We have a number of confirmed people coming along so really really pleased. If you are able to get to the Staffordshire area, please get in touch with us. If you aren't able due to location but still would like to talk to other people in a similar situation, please email us. No feeding problem is too small and it doesn't have to be due to medical problems either, we are here to help.

Please continue to email us your experiences and please please email or comment on any advice you may have!

Some of us are still having problems and would appreciate any pearls of wisdom.

Thanks for reading

Gemma x

Going To The Doctors

2010-07-01T15:54:00.002+01:00

Today I had to take Amelia to the doctors as she had a rash which turned out to be shingles.She is ok and is still running around like a mad woman but what is it about doctors.She had to be seen by 2 doctors before they could tell me it was shingles. The same last week when I took her because we thought she had hay fever she was seen by 2 doctors who between themselves couldn't decide what it was and to 'see how it goes'.
We also have an appointment with a doctor at the hospital in a couple of weeks time who in 2 years we have seen once.We have seen his understudy each time we have been who has no idea about feeding problems.It is so annoying when you wait 6 months to see this doctor to get there to find you aren't seeing him at all.( we only want to see him to get Amelia discharged).
I wondered what experiences you have had with doctors?
Don't get me wrong there are great doctors out there its just you wait ages to see them with your hopes of getting answers to your problems this time and then when you get there it is a total waste of time. I remember the time I was told that Amelia wasn't putting weight on because she wanted to be a model in later life . Iwas also told that she would need operations when she was older which was a load of rubbish too.You walk into the doctors room hoping today is the day you get an answer to your problem and come out so upset that you have got no further forward and to top it all you aren't seeing them again for another 6 months.I really feel that in this country there needs to be more awareness made about feeding problems so that doctors can then straight away send those children to the correct person to help them . there is a lack of understanding of feeding problems with doctors. When Amelia first showed signs of feeding problems and not gaining weight my doctor wasn't interested at all and just said she'd be fine. It took a good month before he'd actually listen to me and realize there was something not right.( I actually had to change doctors to get help in the end).
More awareness in doctors is what we need how we do that i don't know.

Amelia At Last In Her Bedroom Not Mine

2010-06-21T19:16:00.003+01:00

Well it has taken nearly 4 years but we have Amelia in her own bed and her own bedroom.
Because when Amelia was little she was tube fed so she had to be with me in the night and then the doctors decided she should be fed by pump at night so we had to watch that the tubes from the pump didn't go round her aswell she was always in my bedroom with me.
Then when she was tube free it had got into a routine that she was in my room that it just carried on.But it was decided that we would do her bedroom.So now she has a lovely pink bedroom with a bed with hearts on and she loves it. The first couple of nights she called out for me so we decided to do a reward chart if she stopped in her bed and she gets an extra sticker on her chart if she doesn't keep calling me.It has worked up to yet and she loves putting the stickers on her chart in the mornings.Then at the end of the week if she has done well she gets a comic.
The only problem is I am so used to her being in my room that I find it really strange without her.

Ideas and help please!

2010-06-21T11:46:00.004+01:00

Hi all

I'm stuck in a strange place with Sophie's eating right now. She will happily take sips of drink and put spoonfuls of yoghurty consistency foods in her mouth but I was wondering how to progress to solid food with her?

Any types of foods that would be best to start with? I have to take into consideration her TOF scarring and narrowing in her foodpipe also, so until we know how functionable it is, could do with solid foods that break up easily in the mouth or dissolve.

She will put pieces of carrot and apple to her mouth and gently bite, but if anything gets into her mouth and she cant get it out (talking the smallest of crumbs) she starts to gag and try and be sick. Obviously I dont want to rush this stage with her but just wondered if anyone has any advice, anything at all!

Either email or comment if you have any ideas, suggestions or just words of encouragement. All will be appreciated.

Many thanks

Gemma x

Amelia's Holiday

2010-06-13T20:43:00.003+01:00

Hi
Just got back from our weeks holiday in Woolacombe in Devon.Amelia had a brilliant time swimming, dancing going on the beach and rolling down the sand dunes and her favourite was digging holes and jumping in .She even went in the sea which she wouldn't do last time.

The difference to a couple of years ago is incredible.I remember travelling down to our hols knowing that we would have to stop to tube feed her and then when we started off again ten minutes later having to stop again because she'd been sick as she was after nearly every feed.On the beach having to constantly watch the tape on her face incase it started to come off and having to keep the sand away from it.I have pictures of on holiday when the tube had come out and she had red marks on her face where it had been stuck to her face with tape.

As for swimming that was a no no really as the tape could get wet and the tube could come out.Basically you were always worrying about the tape coming off or the tube coming out and having to repass it.Or the sickness.

How different it is today.I want people to know there can be light at the end of the tunnel as if someone had told me 2 years ago that Amelia would be eating ice cream on her hols i wouldn't of believed them.Or eating her fish and chips in the pub at tea time.

Oh well back to our usual routine tomorrow and Amelia is back to school nursery in the afternoon.No more sunny(yes sunny) Woolacombe till we go again in September.

Sorry for the lack of blogs.

2010-06-13T18:54:00.009+01:00

Hi all

We'd like to apologise for our lack of blogs. Ann has been on holiday and I have been in hospital with Sophie (cf stuff).

We'll post a more detailed blog in due course but i'll leave you with a couple of pictures of Sophie for the time being. Please continue to email us, comment/ask questions and share your stories with us.

Sophie has turned into a right tea belly lately. She's starting to drink properly now instead of taking it via a teaspoon.

Okay so she might not be eating veg yet but she's become very interested in helping her grandad grow some. We'll see what happens when they have grown!

This one makes me smile and also shows that she is just like any other little girl despite her problems eating.

Amelia's story in pictures!

2010-06-03T21:22:00.009+01:00

Hi all, here is Amelia's journey in photographs.

The first photo is of Amelia with her ng tube. As you can tell, Amelia always had a smile even with that horrible thing!

The second picture is of Amelia and I at one of the many therapy sessions at Graz.

The third picture is of Amelia's first tastes of soup at Graz!

The final picture is of Amelia aged three and tube free for one and a half years!

Please get in touch if any of this is familiar to you. There is light at the end of the tunnel.

Ann.

It's only taken 3 years!!!

2010-05-31T14:09:00.010+01:00

This was Sophie before her nissen fundoplication at approx 4 months of age with her NG tube. She's sat in her bumbo chair which is a lifesaver for babies with reflux. She is having her milk slowly via a feeding pump to minimise the vomitting. At this time she couldn't even put her fingers in her mouth without being sick and was already severely oral phobic.

This is Sophie a few weeks ago at her grandads house enjoying one of her favourite foods. She still has neocate milk via her mic-key button but the progress she has made is awesome!

If you are going through a similar experience we just want you to know things do improve over time. I just wish we had had a crystal ball when we were at our lowest to see that things would get easier.

Please feel free to get in touch with us.

Amelia's Story

2010-05-21T16:54:00.003+01:00

Amelia from the day she was born didn't take enough milk.When we came home I felt that it wasn't right and aired my concerns to the health visitor and Doctor but didn't really get any advise from them.The doctor just was not bothered at all.
After 7 weeks and Amelia's weight going down we decided that we had to go private to get some answers.We saw a Doctor who got us an appointment in an NHS hospital the next day.We were kept in the hospital for about 4 weeks doing different tests and it was decided an ng tube was to be inserted.Each time it was feeding time a nurse would come and watch me feed her and give there advice.(That being to lie her down to feed her and basically force feeding her.Which when they did it she did feed sometimes and when I tried she didn't.I felt such a failure not being able to feed her.)So eventually it went to more tube feeds than oral feeds. That is where the sickness started.Nearly every feed she was sick and we were told it was reflux.(Now in Amelias case we know it wasn't reflux but once again we believed the people who were supposed to know about these issues.We believe it was the tube that was making her sick.)
In tests it was found Amelia had a malrotation of the bowel so she went into another hospital for an operation and told when she came round she would be really hungry.She was not interested at all and so we were then sent back to the first hospital to sort out the feeding problem.
Basically we were told there was nothing more they could do for the feeding issue and sent home Amelia with a ng tube.
Amelia was seen by a speech therapist in yet another hospital once in a blue moon and a doctor the same. We had a community nurse who we could call and was very good the only thing that worried me there was she showed me how to insert the ng tube in about 5 minutes so you felt then that it was left to you to do it in future with little knowledge of how to do it.
We were told by one doctor that Amelia wasn't eating because she wanted to be a model when she grew up.A very good joke I don't think.Then we were told that she could have the tube until she was 5 and then they would give her a peg and a operation to stop her being sick.
That meant holding my daughter down inserting that tube( as it was coming out every day) for another 3.5 years. So again no support or good advice from any professional.I couldn't go on like this any longer and felt completely at a loss as what to do.
Luckily at the same time a relative saw a programme of a girl who didn't eat and went to Graz in Austria where they helped her.We contacted the professor at Graz and booked Amelia as an outpatient.(Can I just say that no Doctor or health visitor or community nurse supported us on this and basically got very funny with us about going.There was only one physchologist who said go for it and it would work and she has been a great support to our family.It is just a shame we only got to get to see her just before going to Graz and hadn't had her support from the beginning.)
So off we go to Graz very scared and not knowing what to expect.What can I say about Graz?
It is a brilliant place with a fantastic team who understand what you are going through.Doctors who actually talk to you properly and not look at you as though you are a mad mother.
Three weeks of occupational therapists,physio,speech therapist and play picnics. All the time being monitored by the team and the milk being reduced.Not easy but worth every second of being there as Amelia came home eating little bits and drinking.She actually had to say good bye to the ng tube and throw it in the bin.
Amelia is now 3.5 years and she was at Graz when she was 18 months old.She has not had an ng tube in since and now eats a variety of food and drink.
What was the difference between Graz and here in England?
If an ng tube is put in over there they have a plan on what they are doing instead of putting the ng tube in being the answer.They have a team working together where as here you go from one doctor in one hospital to another doctor in another hospital who don't communicate on what is happening.There needs to be doctors who understand about feeding problems.
If I had listened to the doctors here Amelia would still have a ng tube,still being sick and in 2 years would be given a peg and a fundliplication operation all at the cost of the NHS and also completely not needed.By the way the sickness stopped the minute the tube was taken out.
Because I wanted to keep this as short as possible so I don't bore people there is alot of Amelias life experiences I have left out but can I say I am very dissappointed in how issues regarding feeding are dealt with and it really needs addressing.It has been a long and hard road but luckily for us we have come out of it alright.
Please do not give up hope if your child has feeding problems as there can be light at the end of that tunnel.
Ann

My top ten tips to survive feeding problems...

2010-05-21T13:53:00.003+01:00

10) Stay calm. Talk to other people in your situation (it does help!)

9) Contact the appropriate medical professional (gp,health visitor or consultant)

8) Establish cause of the feeding problem if possible and get the level of the problem assessed so an appropriate plan can be made.

7) Allow desensitisation to progress at the childs rate, not yours.

6) Allow your child to explore different textures with their hands.

5) If your child will taste foods, dont be concerned about it being the 'wrong' type of food. Give them what they want, it's all about exploring. If your child is old enough, let them be involved in choosing and preparing food.

4) Always prepare your child a meal whether they eat or not and have snacks available throughout the day.

3) Relax and stay calm around you child, if they take nothing it's fine and they will try again another time.

2) Keep a diary of everything your child touches, tastes etc. It's such a long process you may not notice the progress!

1) Patience, you will need a lot of this as there is no quick fix. Lots of time and effort is needed but I promise you, the rewards are worth it!

Introducing Sophie (part 3)

2010-05-17T16:07:00.002+01:00

Once back at the hospital Sophie was trialled on an array of milks, infatrini, paediasure and others which I cant remember now.
All made her vomitting worse so she was eventually put on neocate milk. This was created for astronauts as it is absorbed higher up in the digestion tract and doesn't sit in the stomach for long. We saw a slight improvement withthe vomitting but she was still really unsettled and at this point would not take any milk orally. She also couldn't tolerate a dummy in her mouth, this would make her gag and then be sick. Infact, even if she put her fingers in her mouth she would be sick. She was now oral phobic (oral aversion).

A Ph study was ordered. This is where a tube is passed up the nose and down into the stomach (just like an ng tube) and is left in place for 24 hours and it records data into a small computer. It shows how much acid is present and whether it is backflowing up the oesophagus (reflux). Sophies results were normal? Noone actually believed this so a barium swallow test was ordered. This is where dye is swallowed to see how the stomach acid reacts to it.

As soon as the dye was squirted into Sophies mouth, swallowed and hit her stomach, it shot back out and up her oesophagus about 3/4 of the way up. We finally got a diagnosis. She had severe reflux.

As a consequence of her TOF, her stomach muscles hadn't developed properly at the opening of her stomach (fundus) so therefore, she had no muscles to tighten when milk entered her stomach and it was this that was causing the severe reflux.

The only option we had was for Sophie to have an operation called a nissen fundoplication. The surgeons would take a small flap from her stomach and wrap it around her oesophagus and stitch it back down. As she breathed in and her diaphragm lifted up it would pull the sling tight and act like a sling. This would create enough tension to tighten the opening to her stomach and keep all stomach contents where they were supposed to be.

The op was a sucess, as a side effect, Sophie can never be sick again. She can try to be but nothing can get out of her stomach.

Unfortunatly though, it didnt cure her oral phobia as the damage had been done. She associated anything going into her mouth as causing pain and we have had a very long battle (which we still haven't won) to de-sensitise her mouth so she could put her fingers in without gagging and use toys etc to teethe.

At 5 months of age, she didn't even weigh 12 lbs. Once the operation was completed and she had healed, the weight piled on. We continued to NG feed for a further 12 months and then she had a PEG tube inserted into her stomach. This has recently been changed to a Mic-key button.

Sophie is now 3 years old and will happily clean her teeth, will put a few spoonfuls of a variety of foods into her mouth and is also taking small sips of drink.
It's a very slow process and once damage is done, there is no quick cure to get your child to eat.

The main problems we have experienced is everyone appears to be an expert on how to get a child with feeding problems to eat. This is very often not the case. We had so many professionals involved we didn't know who to listen to.

Eventually we met the right professional and it is thanks to her, Sophie has made so much progress and is coming on leaps and bounds.

I will leave it here for now as I have wrote a small novel between the three blogs. If you have any questions, do not hesitate to ask.
I'm hoping the other parents involved in this blog will tell their childrens stories very soon.

Until then I wish you all well.

Gemma x

Introducing Sophie (part 2)

2010-05-17T15:44:00.002+01:00

Following on from the previous blog...

Sophies oesophagus closed again after being home for 2 weeks. This time things were slightly different. Leading up to the full closure, she began to get really unhappy after milk feeds, drawing her knees to her stomach, crying, fidgeting. Colic we were told so we went into colic treatment mode. I have to say, nothing helped. She also wouldn't take as much milk per feed.

When back at the hospital, they again diagnosed a stricture and performed a dilatation.
Afterwards at home things were very different. She would vomit after every feed, i'm talking full projectile vomit not little spit ups. It was like a scene from the exorcist. Consequently her intake of milk got less and less until she was only taking about 80 mls of milk per feed (She was taking 160-180 mls).

Again the chesty sounds returned and we were back at the hospital. Unfortunately her surgeon was off so we had to make do with junior doctors to treat her. The third dilatation was performed. This time we stayed in for a little while to try and get to the bottom of what was going on. I suggested reflux to the team but they were reluctant to do anything until her surgeon was back. Sophie was already taking ranitidine, domperidone. gaviscon and omeprazole.

Home we were sent and cue the chesty sounds appearing again after about a month this time. Anyone see a pattern forming here?

Back to the hospital we go.

Dilatation number 4 is performed and Sophie will only take approximately 20 mls of milk per feed. My husband and I point blank refuse to take Sophie home like this as she was losing weight and very very unsettled.
Again her surgeon was off and finally a ward sister listened to us and fought with the doctors to pass an NG tube so we could get some nutrition into our shrinking child.

Eventually we were sent home but by this time, Sophie was taking less than 10 mls of milk orally and vomitting all the time, even inbetween feeds. Her surgeon phoned us up at home as he had seen that we had been in twice while he was off work. As soon as he heard how little milk she was taking we were advised to bring her straight into hospital for tests....

Introducing Sophie (part 1)

2010-05-17T15:17:00.003+01:00

I will begin to share Sophies story with you but will split the blog into three sections to make it easier to read.

Sophie was born with a Tracheoesophageal fistula and oesophageal atresia (http://en.wikipedia.org/wiki/Tracheoesophageal_fistula).

This was corrected at 36 hours of age via a major operation, which left her on a ventilator for a further 36 hours. Once awake and battling sepsis, we began the task of establishing oral feeding. She had a tube called a TAT stitched into her foodpipe which is similar to an NG tube while her repair healed.

After 3 weeks, she did begin to take more milk orally than via the tube. At this time, we were told that Sophie had cystic fibrosis which was discovered via the guthrie test. (although this is a major part of Sophies life, I wont discuss it via this blog).
After 4 weeks, sophie had the tube removed and we came home. After a week, she began to develop chesty symptoms but on examination her chest was clear. What had happened to cause the chesty sound? I had a battle to get her doctors to take us seriously and I was so scared to feed her as that magnified the noise. I thought I was drowning my child. Unknown to me I was!

We were transferred back to her TOF hospital and they diagnosed a stricture. Where they had repaired Sophies oesophagus, the join known as the anastomosis had become inflammed and her oesophagus had completely closed. This meant any milk she took would either come back up out of her mouth or go down into her lung.

Sophie had her oesophagus stretched known as a dilatation and she began to feed 'normally' again and we were sent home thinking this was the end.

Little did we know....

Introduction

2010-05-14T19:16:00.003+01:00

Hello, we are a group of parents with one thing in common - our children have all had problems with feeding/eating including having tubes inserted when problems have occured.

The information available to find a solution to childrens feeding problems is very limited and there is a lot of conflicting advice. This can lead to frustration and also making the situation much worse.

We hope that our experiences can help prevent other families experiencing the heartache we have. We have created this blog to offer support, advice and to make people know that they are not alone. This blog will link to future projects and give updates. We will also use the blog to update information regarding our feeding support group.

Please feel free to comment, ask questions and tell us your own personal stories.

We'll be adding our childrens stories in future blogs.

Gemma.