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Severe reflux and CMPI, weight loss and now talking feeding tubes. Can someone help?

(17 Posts)
raininginbaltimore Fri 07-Dec-12 11:11:55

DD is now 18 weeks. She has reflux and cmpi. She spent five days in hospital when she was 10 weeks for projectile vomiting and refusal to feed. She was tube fed and then given IV fluids. This led to her diagnosis.

She is on neocate milk. She has lanzoprazole, ranitidine, domperidone. After an appointment with consultant yesterday she is now on erythromycin and a high calorie med. She has had problems gaining weight and had now lost weight. We have started weaning under guidance of a dietician.

We have been told that the next step is tube, most likely through her abdomen. She just has days where she refuses to feed and it becomes one long battle. We have periods where she feeds ok, but she is so sick as well. I am really worried and drained. Has anyone been here?

narmada Fri 07-Dec-12 12:04:14

Oh raining, no advice but just wanted to give you a virtuall hug. Life is unfair sometimes, you have had a hard time - I remember you from your other threads.

It sounds like they've thrown the full whack of stuff at her, meds wise.
Are you 100% sure it's not a taste-aversion problem to the neocate - it's disgusting. Have you tried heavily flavouring it with something (crusha syrup for example)?

What other investigations has she had aside from those around reflux/ CMPI? I am presuming that they have ruled out stuff like pyloric stenosis at this stage or anatomical issues other than reflux (e.g., submucosal cleft palate).

What's the high cal supplement? I take it it's not milk-based?

raininginbaltimore Fri 07-Dec-12 14:50:15

She had an ultrasound for pyloric stenosis in hospital. She has been referred for barium meal and a camera swallow. She has been seen by speech and language, and they say anatomically her swallow appears ok.

She does seem ok with taste, we had trouble to start with but then she took to it. She will take milk, but has these cycles where she just won't feed, or is really sick.

raininginbaltimore Fri 07-Dec-12 14:54:50

Oh the high calorie thing is called Calgon. It is chalky white.

narmada Fri 07-Dec-12 17:14:01

Is it duocal?? I thought calgon was washing machine descaler grin

If it is pretty sure it`s protein free so no CMP.

Oh raining I wish I could offer words of wisdom but am all out of ideas. Hope the barium swallow yields some info.

In the meantime take heart from my ftiend's little girl who had all the problems you describe - but without the periods of comparatively good feeding - and is now a full of beans, hyper-intelligent, very dainty but healthy 3 year old. It is so stressful. I don't think medics understand the half of it most times.....

raininginbaltimore Fri 07-Dec-12 19:11:54

Sorry it's called calogen! I'm not giving her Calgon!

DameSaggarmakersbottomknocker Fri 07-Dec-12 19:18:00

How is she when she's ng fed raining. Is she still sick?

My dd had calogen and maxijul (which is a powder) whilst ng fed for 12 months. She did have reflux but it wasn't her primary problem. Has she had the swallow test yet?

redwellybluewelly Fri 07-Dec-12 19:25:56

There is a tube feeding support group on facebook and on the MN special need children topic. I know it's the last thing yup want but post there and post in allergies.

My DD is cmpi, she is a dainty two year old but reacts to any animal dairy or soya. We avoided tube feeds by a whicsker at one point she she started to lose a lot of weight. We didnt use hypo formulas as I breastfed on demand and cut all trace of dairy and soy from my diet. Not all hypo are the same and some are hard to digest, it sounds like to need a part digested oneed to help her gut heal, the cycle of sickness suggests to me that an additional trigger hasn't yet been found?

raininginbaltimore Fri 07-Dec-12 19:27:42

The last time she was NG fed she was still sick. They had to give her IV fluids. They tested her stools, but found no bug that was causing the vomiting. It took a few weeks but we managed to get her feeding again.

She hasn't had the swallow test yet, consultant has put on urgent referral. Going back in a week. We have a few good days and the. It gets gradually worse. Last week I nearly took her to docs as she had gone 18 hours and just screamed whenever we tried to feed her.

raininginbaltimore Fri 07-Dec-12 19:31:17

X-posts. I think I feel bad that I can't breast feed her (medication). She's had two good feeds today and taken the calogen ok twice.

Two of the meds are to push feed through her system quicker and it is working, she is pooing nearly every day now instead of every three days.

redwellybluewelly Fri 07-Dec-12 19:51:23

You need to be seen at GOSH, they are the experts in paediatric gastrointestinal issues (long story but many children who have the birth injury my DD has are tube fed due to unsafe swallow) so i do appreciate how difficult this must be.

I will come back later but I do strongly advise posting where I said, you will get some very good feedback I am certain.

blondefriend Sun 09-Dec-12 21:03:01

How long have you been on the Neocate? My DS was 100% ng-tube fed until 10 months. He needed to be on Neocate for 6 weeks before the vomiting stopped and then he suddenly started eating 2 weeks after that. His immune system had taken such a battering of so long on EBM that it took that long to clear him up. The vomiting is closely linked with the oral aversion. If you can stop that then the eating/drinking should follow. It is a very hard time and I sympathise with you completely. If it helps my boy now eats well and although is still CMPI (and soya) he can eat a relatively normal diet. Good luck.

raininginbaltimore Mon 10-Dec-12 08:00:48

She has been on Neocate for 8 weeks now. It is the gagging and choking when feeding, and often when feeding that worries me. She is sick a lot, but not projectile. It doesn't seem to bother her much at the time. But it is just constant, running out of her mouth.

We've had a mixed weekend, the gagging and cough is worse. She is feeding more often but not much more than 1-2oz.

gordonpym Mon 10-Dec-12 20:52:11

This NZ site is 100% about reflux from mild to extremely severe. I used to browse it a lot when DS2 was a baby, There is even a dedicated forum.
Now DS2 is 6 and I can assure you it does go better!

raininginbaltimore Wed 12-Dec-12 20:11:01

Tomorrow we are back hospital for weigh in. She has only managed her required amount of milk one day. Most days she is down by 200mls. sad

OpheliasWeepingWillow Sun 16-Dec-12 04:13:22

No advice but hand holding - reflux in horrible

shufflebum Sun 16-Dec-12 06:07:28

If you're on Facebook, look up the Reflux Room. Some very knowledgeable mums on there.

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