Please help. Someone? Anyone? Long thread alert

[fazsaeed]

Hi everyone, I'm new to this. My son (ds) is 18 months. He suffers from severe reflux since birth.

Ds was kept in hospital for a week "under observation" to watch his food intake. He was having less than 500 cals a day and needs 900 at his age.
He is less than 20lbs and has been this weight since October.They only change they've made is to his milk. It's a high calorie milk 300 in 7oz. Pain to give him. Have to water it down but it's stopping him from losing weight when he doesn't eat. He has round about 1/2-3/4 meal a day. When we came back from hospital it was like he missed food and ate well but now it's going down again.the other day He ate a bit of coco pops in the morning, few strands of plain boiled spaghetti and a few bites of chicken. For tea the kids had mc Donalds but he just chucked most of it on the floor. He ate lil bits of kfc chicken last week so I went out and tried him with that. He would bite it and spit it out. I'm trying to giving him dinner in the morning as he tolerates food better then and breakfast at dinner. Few bites of toast in morning. Few bites of home made pizza, refused chicken and mash and few bites of bread.
Been such a pain to feed. Today he's been in a lot of pain.

If he did this once a week i wouldn't be too bothered but it's once a week he eats over a meal in the day. It's a long term problem that I can't see the end off. Before he was getting worse I wanted a few more kids but now no way. Not until he's 'better' and I'm just so scared that the next will be like him. The stress of your child constantly not eating, losing intrest in food is horrific. He knows it hurts to eat so he's happy hungry. He has loads of energy so what he eats he burns off quick.

Advice/support? Some one who understands?

That's terrible that the nurse thought u didn't want him to eat! It's so hard because we don't want our kids to be distressed and have a fear of food, iv had the whole worry of thinking they might say I'm not feeding him or trying hard enough, dietician says I need to calm down as he won't eat if I'm stressed etc! he does go through wee phases of eating a bit better, gains weight then has a bad spell , my niece ( dh side of family) had an op when she was 5 because the acid was going into her lungs , causing her to have constant chest infections etc, she is 10 now and has never looked back since, she never had a problem eating though so her mun- my sil -has no advice for me whatsoever!
My son is on ranitidine, and carobel thickener in his milk, without his
Meds he won't eat at all, I can't get him to eat lumps , only purée and a few finger foods,
It's good u have the support of your parents, it's easier when someone understands and helps,
X

They were useless that day. It's such away for us to go that mum can't drive that far so dad has to.
Mum didn't come into consultants room as she was with ds and dad just told consultant that he's better. Wtf?!!
Dad doesn't realise what reflux is.
Ds has got a chest infection at the moment. He's had a fair bit of them too.
I'm going to question the correcting or tube thing as he needs him and your ds does too. Ask for ph probe to be done x

I will ask about ph probe, it's hard if ur dad doesn't understand, my family are the same, feel like I'm dealing with this on my own, I seem to have a really good week running up to hospital appt and then be goes downhill after, we need an appt when he's at his worst! I hope you get somewhere, x

Ph probe has to be done without any GERD drugs in the system. I think from memory DD had to be off them for a week.

Ranitidine is IMO not a very effective drug. Omeorazole MUPS is much better.

My DD improved once we switched to Nutrini Energy Multifibte as it was heavier,and as it was 1.5kcal per ml it meant that we needed less volume. Very important.

The g-tube won't stop the reflux, but it's a sneaky way of getting food into your kids. I think that once they start walking, things should improve for them, as gravity is very helpful. You do need to get the drugs looked at, though.

Chest infections are due to reflux and aspirating. BTW chest infections will eventually start to cause terrible lung problems, if it's not taken seriously enough. Get some advice on how to give physio to the chest area to shift any muck that will be lurking in the lungs to stop anything brewing.

Faz - talk to your Paed about getting Azithromycin as a prophylactic antibiotic that you take one dose three days a week, for chest issues. More than 4 chest infections would indicate a problem.

I am speaking from considerable personal experience.

I'm getting him weighed toddy. If he's lost more weight then I'm ringing through to hosp to speak to consultant.
Hope everyone had a good morning x

How did u get on today? X

He had few spoons of coco pops. 4 bites of dinner, few bites of tea and I've give him baby food mixed with soup in syringe. I know it's lil bits he's had but it's no where near half of required needed.
Hosp and clinic scales differ massively. Here it says he's put on loads of weight and at hosp it says he's lost weight but either way he's still lost weight.
What about you?
X

He has ate not bad today, refused breakfast but took 4oz milk,
half jar of baby food and half a yoghurt at lunch , dinner he ate his soup happily for a change, and 2 spoonfulls of yogurt, sounded better in my head, as I read it back it really isn't much at all,
that's very true about the scales at hosp and doctors being different , my wee one is so happy sometimes it's easy to forget what's normal eating, it's only when I see other baby's eating I realise it's not right, hoping to see speech and language this week and take it from there x

Id love it if ds ate yoghurt. He screams at it.
Drs are happy with dc eating so little. Its just not fair.
He's got such a horrible chest atm he doesn't need antibiotics as of yet because he's not getting temp keeping very close eye on him
X

I hope it doesn't come to anything, sending hugs!

Hope you have an easy night
X

He is always ok at night other than last week his reflux seemed to bother him whilst lying flat , but was ok last night, up this morning fed 4oz milk at 5.30 and at 7.30 tried to give him his weetabix - 1 spoonful and he was sick up his whole bottle from earlier ! So he's off to childminders unfed and I'm at work worrying :( taking him to get weighed tomoro but I hate the health visitors they avoid me because he's not a normal baby, drives me mad! x

Awww. Poor lil baby. Dont lay him flat as it's easier for food and drink to come up.
Try what I'm doing.
Baby food/ blended normal food via medicine syringe in mouth
X

sallybear when you give your dc the fortini at night does it make their tummy swell a lot?!
I know you feed via tube but the end result is it the same? My ds tummy swells loads...
Thanks
X

So sorry you are going through this, unfortunately I remember it all to well.

DS had a Nissen's Fundoplication at 2 years 3 months due to severe reflux, it was diagnosed via an endoscopy; the gastro paed didn't bother with a PH probe as the scope was conclusive enough as it showed the loose muscle causing the reflux and the resulting oesophagitis.

DS was also dairy intolerant and to be honest I've never heard of it being diagnosed via biopsies; it was only coeliac disease that DS had excluded via biopsy, the milk intolerance was treated with hypoallergenic formula and a strict dairy-free diet.

Dr Mike Thomson is a well renown reflux expert so you're in good hands with him; what has he said so far?

I don't want to sound doom and gloom but the surgery isn't a quick fix and will only be offered as a last resort; it comes with side effects and certainly isn't a cure. Hope I don't come across as being harsh when I say that, but it comes from bitter experience I'm afraid.

Sally is also right about ranitidine, it's not as effective as a Proton Pump Inhibitor such as Omeprazole or Lansoprazole.

Excuse awful typos, sorry!

Hi flyingfig,
Yep he's on ppi- omeperzole.
Dr Thomson has increased his dose to 25mg.
Domperidone did nothing
He is si scared of eating its horrific.
I'm feeding him food with a syringe as I think he thinks I'm giving meds so it won't hurt... He still gets pain, still very uncomfortable after feeds but feeding him is easier as he's not eating himself I'm doing it, very minimal effort required on his side.
Dr Thomson said he was going to put g tube in ds to feed him but did nothing. He's been this weight for 5 months. I'm just gob smacked that the health professionals have been happy with this.
I know it's not guaranteed with the surgery but I need to believe that there's something that will work to keep me sane
X

Dd's reflux which hadn't been a huge problem got a lot worse when she had her gastrostomy, if her ph study had shown a lot of reflux she would have had a fundoplication when she had her gastrostomy.

I know quite a few children who have had success with eliminating dairy from their diet, Peptamen Jnr is a dairy and lactose free formula which has 1.5 kcal per ml and I'm sure there are others, Alpro +1 is also quite good on calories compared to a lot of the other soya milks too. Dd has hemp oil and flaxseed oil mixed with her feeds and these are around 80kcals per 10mls.

I dont mean to be rude or ignorant but can I ask why your dc had gtube if reflux wasn't that bad? I know gtube is used with other medical probs.
Im just not happy with the way he has to suffer:(

My DD is no longer tube fed, no longer has a tube and doesn't reflux after food. She grew out of it. She does have night time reflux though, which has given her lung problems. We use ppi and antibiotic to keep her healthy.

Nutrini never made her tummy bloat. We did use Pepti Jr. but switched to the Nutrini Multi Fibre as we needed to give her fibre. There is an amazing blender called Vitamix which is perfect for tube fed kids, as it blends down food to put through a tube. There are websites where parents have published their blended food recipes and diets. John Lewis were selling them before Christmas.

I still think though that McTimoney Chiropractic therapy is worth a go. If it can gently iron out the kinks skeletally then you may find that it has a positive effect on sleep, pain and feeding issues.

Thanks for the reply Sally.
I'm happy to hear that she's better than before.
I just thought that because the milk was thicker ( even when watered down) it causes very bad bloating. At times his tummy comes so out it's scary.
He's seeing his normal pead next week and dietician will mention it to them
X

I've just googled it for my local area
Going to hopefully book and see when they can book him in x

My DD had a gtube, because she couldn't swallow as she had a massive cleft palate, very small jaw with a normal sized tongue. As she had a tracheostomy for respiratory issues caused by the small jaw, it was hard for her to manage breathing and feeding.

Oooh. They checked ds for cleft. Thank you x x