Problems with narrowing of the Oesophagus in a 9mth old.

[sillysow]

Hi

I am hoping that there is someone else on here that can talk to me about their experience of this.

My baby - since weaning has had problems with feeding - and after some undrestandable mis-diagnoses they have found that she has a narrowing of her oesophagus.

She has already had the gastroscopy to show this, and had one attempt at dilation which made a small improvement. She can now eat very thin purees - but nothing even remotely thick or textured.

We had an outpatients appt today - and they have scheduled her for another dilation next week. They have also spoken of referring her to Great Ormond Street to have further tests done which they are equiped to do.

At present they are not sure whether it will be a case of mulitple further dilations - or open surgery.

I guess we are not entirely sure of the cause yet either.

Can someone talk to me please?

[Jellykat]

Thats really scary , Sorry i don't know anything about this .

Bumping for you, hope someone will have some answers/experience.

Good luck x

[sillysow]

Thank you JellyKat- I'm hoping someone on here has some experience of this.

[auntevil]

Sorry no experience either, but would be interested in hearing if anyone has any info for you, so bumping again.
Good luck

[hackneyzoo]

Hi Silly, my DS has something vaguely similar with regards to a narrowing of the oesophagus, however his is caused by a tumour. We didn't notice a problem with his eating until he started weaning, by this point his tumour had just been picked up anyway.

He is now coming up to two and up until very recently has pretty much survived on milk and very thin puree, anything lumpy or too textured would make him gag and come straight back up, or get stuck and have to be removed surgically. I just wanted to reassure you that he is non-plussed by it, it has not put him off food, and recently he has been able to eat more. He also did pretty well on a limited diet and seemed to get most of what he needed from formula and was never under weight.

DS is under the care of GOSH and they are brilliant. Sorry can't help much with experience of your baby's condition but hope she is ok and someone comes along with some direct experience. Feel free to message me if I can help at all or you have any questions.

x

[sillysow]

Hi auntevil and hackneyzoo

hackneyzoo, firstly so sorry to hear of your sons problems. Can I ask how the tumour became apparent? With DD they plan to try and dilate the oesophagus again on weds, and will send a referall to GOSH for an internal ultrasound scan to try and get a better picture of the problem so to speak. They were originally thinking of doing an MRI or CT but have decided that this wouldnt be effective as the problem starts 18cms from her lips - so quite a long way down.

At her worst she couldnt eat any thin/loose solids at all - I guess it all got inflamed too. At the moment she copes well with thin/loose/fine purees so we are sticking with that and formula as long as we can.

I am glad that your DS is non-plussed by it that is a relief.

Thanks for your responses.

[hackneyzoo]

Hi Silly, we noticed DS held his left arm in a strange postion and favoured his right over his left all the time. Initially they thougt he might have some nerve damage stemmming from (very straightforward) delivery, but tests bought up nothing. They did a CT scan and saw a mass, so he ad an mri and found a tumour in his neck. They still haven't diagnosed over a year later, so it's a pretty rare anomaly I think. The tumour distorts his oesophagus hence the difficulty with swallowing. owever it appears to be benign and is not growing so he seems to be out growing it.

Managed to work out a few 'safe' foods that DS could chew but would dissolve so he got used to chewing, e.g. organix carrot stix crisps...not very healthy but...! Also found that as he got more and more teeth he figured out how to chew things properly so he could swallow them, think having most of his teeth made a big difference when he was around 18 months.

[sillysow]

Bumpety Bump anyone?

[MrsDavie2010]

hi, i'm not sure if i will get a response, (fingers crossed) but this is the only thread on line i can find, my son has recently had a barium swallow and it showed he may have narrowing of his oesophagus... they are now planning on doing a MRI. I'm very confused, teddy is 7 months old and we have been going back and forth from the hospital about his breathing since he was born. he has recently started on solids and struggled and constantly screams....
i'm not sure what i'm asking if any thing at all... just a life line to know more i guess. thanks in advance xx

[narmada]

Mrsdavie, sorry you and Teddie are struggling.

I guess they don't have many answers for you yet as to why there might be a stricture. Does he have reflux at all?

[steppemum]

Hi,
my dd2 had a narrowing of the oesophagus caused by scarring. She drank russian vinegar (75% acid) at 18 months and it healed, but narrowed as it healed. Fortunately the tissue was healthy and soft, just very narrow. We were living overseas, and had to return to UK for treatment. By the time she had treatment she was on milk and thin purees.

She had a barium swallow which diagnosed the narrowing. Then she had an endoscopy stretch. Basically the endoscope stretches as it goes down, and there is a little camera on it and they can use different sizes to stretch it and then a bit more and a bit more etc.

Her oesophagus was down to 1mm. So the first time they stretched her up using 3 different sizes, up to about 5mm. The consultant told us that it would shrink down a bit before the next stretch. He was expecting it to go down to about 3mm. Then the next one would go up a bit further to about 8mm and then shrink to 5mm and so on, until it was the right size (at 18 months it should have been about 10-15mm)

He could only go up 3 sizes at a time. If he went too far he risked perforating the oesophagus, which is really serious and to be avoided at all costs.

After each stretch she could eat much more, and then over the next 3 weeks we would gradually have to go back to milk and puree.
Unfortunately, for dd, it shrank back to 1 mm every time. After 8 stretches the consultant started to talk about putting in a stent (like a wire mesh tube) to hold it open, but he really wasn't keen to do such an interventionist operation. Fortunately the ninth stretch held open at 5 mm and so after 13 stretches her throat was finally sorted. She was then 2.5years old. Over the next couple of years she has been mostly able to eat anything, but occasionally she would go through a phase of food getting stuck , especially if she is worried about something so she is tense. It seems to be her weak spot.

She is now 5 and is totally fine and able to eat anything, and it seems to be growing normally as she grows, so she probably won't need any more (it is possible that it doesn't grow and she would need one every 2-3 years).

I have a friend whose daughter has to have stretches after being born with a problem, and in her case the area to be stretched is due to a scar after an operation. But her case is pretty similar to my dds, in terms of the treatment she had.

In between stretches when she was only on milk, we were prescribed special high nutrient milk which was a complete meal.

MrsDavie - my friend's daughter had a malformation which was a thin tube (has a special name which I can't remember) which went from her bronchial tube to her oesophagus. She had other things to, but she had ongoing coughing and breathing issues which they coudln't get to the bottom of, and it turned out to be this tube. It meant that liquid was going into her lungs when she ate. When they removed it the was dramatic overnight improvement.

Don't know if any of that helps. We were at Bristol Children's hospital, consultant was amazing, can't remember his name

[steppemum]

sorry that was so mammoth!

forgot to say, the stretches had to be at 3 week intervals, to try and do the next one before it had shrunk back too far, so that you can build on what went before.

[steppemum]

as to food for a bit further along, melt in the mouth food is good. (don't real in shock) but chocolate buttons are great, texture, taste and nice, so they want to eat things and try them because they have good food experiences. Try every type of yogurty/custardy pudding. Cheesywotsits apparently are good once they are old enough (my dd didn't like them)

I home made all my babyfood and was organic and no sweets and chocolate etc, but I realised that dd needed food to be a positive experience if she was going to get through without having food issues. She loves her food now (and still loves chocolate buttons)

[steppemum]

or even reel in shock?