Please help – LOSEC not working – nothing working!

[Anonymous]

Hi all

Hoping that someone out there might have gone through what we’re going through and have some advice about what worked for them??

Our daughter developed severe silent reflux at 5 and a half months – around the time of weaning her. She is now nearly 11 months and her silent reflux is still terrible.

She wakes up almost every hour through the night – has done for the last 5 months – she sits bolt upright with a cry of pain and wheezes badly, passes wind, swallows constantly, sticks her tongue in and out and left to right in a strange pointy way, arches her head back, rubs at her eyes and nose and claws at her ears and hair.

Gaviscon made no difference – just constipated her, Zantac helped a bit but stopped working after a few weeks and she’s now on Losec mups tablets, 10mg a day and has been for nearly 2 months but they’re not working either. We had 2 good nights 2 weeks after starting Losec where she only woke a couple of times and went back to sleep easily – and I got so excited thinking there was light at the end of the tunnel – but then things went downhill again.

Without the medication she’s in a lot more pain and it takes much longer to settle her, but with the medication she still wakes constantly and I’m ending up breastfeeding her about 5 times a night as it’s the only thing that comforts and gets her back to sleep – most times nothing else works even though I try all other options first.

I’m pretty sure she’s milk protein intolerant so neither of us have had dairy for about 6 months as she’s exclusively breastfed. I also cut out soya, citrus and wheat from both our diets for about 3 months – reintroduced soya and it didn’t make much difference, then reintroduced wheat and after a few days she started having really bad trapped wind so have cut it out again. I’ve also noticed she gets bad tummy pain/trapped wind after grapes, blueberries, potato, pepper, aubergine and houmous…. it’s becoming a total nightmare trying to feed her a range of food as she reacts badly to so much – she’s mostly just eating apple, fish, rice, spinach and avocado at the moment.

Just don’t know where to go from here – can’t go on like this though as the lack of sleep is really taking it’s toll, every night is just torture. It’s been hard to get anyone to take the reflux seriously as DD is the happiest, friendliest baby ever in the daytime and the reflux doesn’t seem to bother her so much then. She’s also a very big healthy baby in all other respects so it was a huge struggle to get the GP to refer us to hospital and they kept trying to tell me it was behavioural and she was being naughty and not wanting to sleep even though I told them when she wakes up in pain she desperately tries to get herself back to sleep again and doesn’t want to wake up, but is just too uncomfortable.

She’s had a barium swallow test and a lung xray which didn’t reveal anything and is due for a follow up with the London Lewisham hospital consultant at end June and appointment at the Kings College London allergy clinic at the beginning of August but I can’t wait till then…. would be soooo grateful for some advice from anyone that’s been here and found a way to make it better.

I’m wondering whether I should increase the Losecs Mups dose (currently 10mg and DD weighs about 25lb), or try a different PPI or stop breastfeeding and put her on a formula? Or something else I haven’t thought of?? Any suggestions would be soooooo gratefully received. Oh have also tried putting her to sleep on her front, raising the bed etc etc – all the usuals but none of this makes any difference.

Thanks in advance for any advice!

Miriam

[Anonymous]

This sounds alot like what my sounds started at 8 weeks.. The chest x-ray showed bronchitis though.. BUT the first x-ray showed nothing then the next day it showed it in his lungs. He would get cleared up and start over again within 2 weeks. They would take chest x-rays daily and they kept getting worse. He then had a swallow study done. His was completely silent too. We talked to i don’t know how many specialists which kept telling us they couldn’t do anything and he would grow out of it. FINALLY we talked to a surgeon.. They did a fundalication and placed a G button.. This was done 6 weeks ago.. A couple days ago he passed a swallow study and is back drinking out of the bottle at 5 1/2 months. Yes it took us a while to finally get it done.. Whatever you do just keep pushing the doctors. My son was admitted 7 times in 4 months to finally get something done, and we were at Children’s hospital. I so feel your frustration,, But seriously push for the fundalication,, you will have a much happier baby!! I wish you the best of luck! Feel free to ask any questions!

[Anonymous]

Thanks so much for the info – I’ll definitely look into it.

[Anonymous]

Have you considered adding caracream to the losec? Nothing worked for my son prior to that. Do some reading on http://www.Marci-kids.com. Are you giving the losec on an empty stomach and feeding 30 min later?

[Anonymous]

Hi thanks for reply. Not sure if caracream is available in UK – will have a look. Yes doing the empty tummy 30 min rule. Can I ask what dose your son was on?

[Anonymous]

It sounds like a lot of the issues that my daughter was having with her allergies. It’s a major pain, but if you can’t get in to see an allergist prior to August, you may want to try the Dr. Sears elimination diet. Or you could choose 5 or 6 of her favorite foods (that also provide enough nutrients for you). Eat only those foods for 2 weeks. If things improve then you’ve probably eliminated something that has caused allergic reactions. If not, cut out one of the foods and give it another 2 weeks. Keep going until things improve. (Of course, the downside to this plan is that you may end up with only 2 foods to eat.) Once things improve, gradually start adding back in. You need to wait 2 weeks with each new food (feeding it daily) to see if it causes issues. Some children react right away, but a lot of kids take several days to react to a food – either because their body tends to delay reactions (this was the case with my daughter) or because it takes a while for the food protein to build up in the system.

Hopefully, the allergist will help provide some answers for you! Our allergist saved my sanity!

[Anonymous]

Ryan was on 30 mg a day split 15 in the morning and 15 at night. Didn’t seem to help him much. Once I started mixing it with caracream this completely changed for him and I was able to drop him to 15 mg. Caracream is not sold in stores. You can only get it from the university of MO. The patient education site is sweep.marcikids.com. The retail site is http://www.refluxsolutions.com. I don’t know if they ship over seas but you can ask. Check to see if Zegrid is available in the UK. If so you are set. Zegrid is losec mixed with caracream.

[hellbennt]

MSPI ‘Main’ page:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2697

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

THIS IS REALLY IMPORTANT:

Erin‘s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

More Erin: https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395

Erin post: https://www.infantreflux.org/forum/forum_posts.asp?TID=13576

Great anne post: https://www.infantreflux.org/forum/forum_posts.asp?TID=9242

Exposure to foods & blood testing: https://www.infantreflux.org/forum/forum_posts.asp?TID=12993

Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638

Another Sheri explanation- intolerance/allergy post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442

Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815

(sue again, replying to gina- breastfeeding info to (TED)https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=1

probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

erin posts that mentions enzymes:
https://www.infantreflux.org/forum/forum_posts.asp?TID=12781&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12610&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12227&KW=enzyme

Post from me:
https://www.infantreflux.org/forum/forum_posts.asp?TID=12200&KW=enzyme

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