Reflux, tube feeds, cleft palate and weaning anyone?

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Hello all.

I'm new to this (not parenting, asking for help in forums) and have been told that Mumsnet is the way forward re advice so here goes.......

My 9 month old son has a very wide cleft palate, amoungst other issues and is currently on month 5 of weaning. Like others, I was told by his docs to wean early due to his conditions. However, I am getting a bit worried that I will never get him to "eat". He has reflux and has never taken milk from a bottle or cup. He has no sucking reflex. Trust me when I tell you that I have done everything that I have been asked to by his army of healthcare professionals, and read every book / leaflet I could get my hands on. My daughter did weaning in her sleep but had no health concerns to deal with. I feel a bit dispondent now if I'm honest and scared that I'm going to get into trouble for the lack of progress. I'm sure this is something he will pick up!!

He is due for his first palate op in 2 weeks but the few times we've seen his Speech Therapsit, she's insisted he be tube free. Fine, I would love not to have to pass a tube down his throat via his nose on a regular basis but I could just do with any help you lovely ladies may have? Any advice, tips etc? Or dads, sorry!!

I've tried smooth puree, lumpier textures, finger food, at the table with us, toothbrush now he has teeth, cups, bottles, high chairs, pinics on the floor, eating with him, playing choo choo or aeroplanes etc. telly v's no telly. Most of the time he is happy ot have it in his mouth but then it comes out of his nose and he chokes, making it scary for him. As you can imagine, bit tired now and fast running out of ideas. Oh and he has a milk allergy.

He has 4 200ml tube feeds per day via a pump which can take up to an hour if the reflux kicks in and solids in between, more of a taster really.

I'd love to hear from anyone who could help. Thank you in advance!!

Hi Riven

Agreed! And yes, I do give him a break and never force him, just wanted and tips really but all of his care teams insist that I keep at it as once the op is done, he'll have to re learn anyway so why not just keep giving him litle tastes. Idiots.

Anyway, since it's me that cares for him 24/7 I do go with his flow. I just feel so bad some days that he's not where he should be, is that daft? Especially when his CCN and HV and even the CLAPA team go on and on and on about weaning. What I'd give for a magic wand. Not long to go til the op - that's another huge fear but a long story!

DD had her cleft palate repaired when she was 1, she is now 9. I was also more worried about her cleft repair than her knee or hip surgery. But after the breathing tubes where removed she recovered really quickly. Good luck for the operation I know your DS will make a quick recovery. Children always do.
Sorry no advice about feeding as DD only had a tube when she was born for 3 weeks and then used the haberman teats and managed to eat normal baby food.
I am sure things will get easier and less stressful after the cleft has been repaired.

Thank you. Glad your DD was ok with it all - did she have an NPA airway in? Is that what you mean by breathing tube?

Not sure what it was called. It was tubes in her nose because of swelling in her throat. To help her breathe for the 24 hours after surgery.

Hi there,
I don't usually look at this site much, but I am glad that I found your post. My situation is very similar to your except I am 2 year down the line. My girl (cleft palate) was NG tube fed until 7 months and never managed to drink until she could manage an open cup. It was very difficult to wean her because she was getting upset by food up her nose and distraction was the only technique that helped. We bought an (expensive!) adjustable high chair that we put on a slope for her eating - gravity helped with the swallowing. For her she managed solids only if they were exactly the right consistency, and absolutely smooth, but I know that all cleft babies have their own ways. Some have managed better by having finger foods that dissolve, and some have no problems. Feeding and weight gain has been a nightmare for us, so I really sympathise with your situation. Really it was a struggle when we were at your stage, but things did slowly improve as she got older. I was wondering if you'd like to find the cleft palate forum FaceForward? The forum has saved my sanity on many occasions, and it is great to be in touch with those in the same situation and those who can tell you that there is eventually light at the end of the tunnel. Take care

I should have asked - are you allowed the op while he is still tube fed? We had to be tube free, so kind of had to push the weaning. If you don't have to push it then I would 100% agree with your approach to just give him tasters and play, keep it fun (ha - easy said!!).

I'm so sorry, just re-read your message and saw that you do have to be NG tube free like us fir the op. All I can advise other than the distraction and slopping chair is to make sure that his reflux medication is as effective as possible, since the reflux really puts them off too. Make sure that you are avoiding any acidic foods which are sore on their noses - starch based foods seem to work better. Good luck with the op in two weeks.

Hey Boboma

Hoorah!! Someone who knows what it's like!!

Update on the tube free situation - he won't be tube free. I have told them that it's tough, I've been trying for 24 weeks to get him tube free and he won't take ANY fluid orally because his reflux vomits taste like his Pepti Junior milk so associates the two! They'll just have to work around him! Harsh? Pain in the @rse mummy? You bet. There are times when one of his team just rattles me and that happended with the SLT (who had never met him before, knew nothing about him either).

He doesn't have anything acidic already. His CLAPA nurse pre-warned me about that so I look like a shoplifter whenever I buy organic jars for him! Studying every label! He's the same re smooth foods, the smoother the better. I try to make stuff at home whenever I can too. It's just so hard when you get all these "your baby should be eating / doing....." things through from baby clubs you joined before he was born!

He sits in a slightly reclined chair or on my knee so I lean him forward a bit, or back. It does help!!

So lovely to hear your story and I'm glad you reached the light a the end of the tunnel - some days I wonder if I will!!! I'll check out face forward too, thank you so much!

Mitchell81 - yep, sounds like an NPA. He had one until he was 4 months anyway so a doddle! Hospital have said to expect one too. Thanks

PS - We found out yesterday that he has fairly bad glue ear and needs re testing in 4 months time. Deep joy!!

Hi again,
Good for you for saying that you need to keep the tube for the op. We were told that we HAD to be tube free and then a few weeks later I read on FaceForward that they were doing a study at Great Ormand Street to see if placing a tube for all little ones for their ops helped with recovery. I was a bit miffed! I think that they don't like to re-pass a tube immediately after the surgery though (which makes sense for infection risk) but if you manage to keep the one down that is already there then that should be great. It will help with the meds after the op too 'cause it is a bit harsh asking a little baby who has just had mouth surgery to swallow ibuprofen!!
It sounds like reflux is causing real hassles for your boy. Its such a shame - a vicious cicle of learning that eating is painful, the NG making the reflux worse and missing out on oral development. Try to ignore what everyone says that he 'should' be doing - a cleft palate, reflux and NG tube means that 'normal' is another world sometimes!
My little girl has gone from being off the bottom of the graph weightwise and being completely non-orally fed to a girl who is 9th centile and eats three meals a day and cup of milk. We still have to blend her meat food, distract a fair bit while feeding and be careful with textures and she is very very picky, but having coped with what you are now, I don't care! Life is really much easier now, and we are also getting support to address her oral development (speech therapy and play food therapy). I find that no-one understands these issues other than cleft mums, and I tend not to even try to talk about them to other toddler mum friends (its just frustrating), and as for professionals who tell you what should be normal!!!!

Anyway, hope to see you on FaceForward sometime and I hope that the op goes very well. Trust me, you will get there..... x

Thank you so much. Had a v bad night/early morning and was feeling sssooooooo fed up with clearing up vomit and watching him in pain until I read your post. DS is sleeping so I thought I'd have 5 minutes online! I can't wait to be where you are now. Just to have a tiny degree of normality in the day would be nice but we've just had a v rough ride in hospital with his heart so as long as he is here, and safe - I can cope with anything!!!!!!

Nice to hear that you get support for your little girl and that she has progressed so well. As you say, "normal" is not a word parents like us can use!! And besides, normal is so overated!!

Thanks again! x