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.

Friday, 30 July 2010

Sophie's psychologist appointment.

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

Saturday, 24 July 2010

Diary of Graz

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.

Wednesday, 21 July 2010

Update After Open Day

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

Monday, 19 July 2010

Nicky and Becky.

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

Thursday, 15 July 2010

Thanks

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.

Monday, 12 July 2010

Last Day At Jo Jingles

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

Monday, 5 July 2010

Open day.

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

Thursday, 1 July 2010

Going To The Doctors

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.
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