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.

Monday, 31 May 2010

It's only taken 3 years!!!

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.

Friday, 21 May 2010

Amelia's Story

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...

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!

Monday, 17 May 2010

Introducing Sophie (part 3)

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)

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)

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....

Friday, 14 May 2010

Introduction

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.
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