anyone have an older baby still with bad reflux?

[mad4myboys]

11 month old ds2 has bad reflux and on omeperazole and domperidone plus neocate. His consultant thinks he is'turning a corner' and that his age will help over the next few months (ds1 hadit till 1)

Im seeing no improvment. The worst part of it is the night wakings. He wakes every few hours from the reflux(he was in kings hosp few weeks ago for more indepth ph study which showed his night wakings were due to reflux) so there is no 'sleep training' or anything i can do about it. I cant even think about this going on for even longer. REally taking its toll on me.

this place i am going is near gatwick...

where does it say its based on cows milk? pot says a nutritionally complete amino acid based pwdered infant formula with long chain polyunsaturated fatty acids blah blah for the dietary management of infants with cow milk allergy, multiple food protein intolerance and other conditions where an elemental diet is recommended.

So really on paper it is the best milk for him...

Sorry to hear life is tough.

DS2 had bad reflux although we never went down the non-dairy route (I bf him).

He woke a LOT in the night til about 15mths when he had an ear operation (not sure of the English terminology) where he had grommits put in, his ears drained and his adenoids? taken out.

He had been having ear infections non-stop all winter because of his reflux.

We had our first night's sleep a couple of days after the operation.

I'm not saying it has been perfect ever since, but he IS sleeping through the night now (at 2.8)!

Not sure if it's an age thing but hopefully there's light at the end of the tunnel for you.

Can certainly sympathise with the broken nights and think your idea of offering water sounds good (I night-weaned DS2 off bf around a year and it helped a bit).

My life-saver has been afternoon naps (for me!) at the weekend and whenever else I can.

good luck

that was from neocate website..

here

Aminoacids, that would be proteins broken down to the aminoacids building blocks - but you still start with protein. To absorb them you would need enzymes, it might be that he is overloaded with some aminoacids from the formula that he is unable to absorb properly.

nightcat, sorry im not the brightest at the science bit. Are you saying necoate is based on cows milk?

Based on their description, I would say yes, although obviously it's been processed to break down the protein to aminoacids. You could email them to find out more?

Ingredients below from their US website, it also contains corn syrup, maybe he reacts to corn?

Unflavoured:
Corn Syrup Solids, Fractionated Coconut Oil, Canola Oil, High Oleic Safflower Oil, L-Arginine, L-Glutamine, L-Lysine-L-Aspartate, Tripotassium Citrate, L-Leucine, L-Phenylalanine, Dicalcium Phosphate, L-Proline, L-Valine, Glycine, L-Isoleucine, N-Acetyl L-Methionine, Tricalcium Phosphate, L-Threonine, Mono and Diglycerides, L-Histidine, L-Serine, Sodium Chloride, L-Alanine, Magnesium Acetate, Choline Bitartrate, L-Tryptophan, L-Tyrosine, Diacetyl Tartaric Acid Esters of Mono and Diglycerides, M-Inositol, L-Ascorbic Acid, L-Cystine, Propylene Glycol Alginate, Taurine, Ferrous Sulfate, L-Carnitine, Zinc Sulfate, DL-Alpha Tocopherol Acetate, Niacinamide, Calcium-D-Pantothenate, Manganese Sulfate, Cupric Sulfate, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Vitamin A Acetate, Folic Acid, Potassium Iodide, Chromium Chloride, Sodium Molybdate, Sodium Selenite, Phylloquinone, D-Biotin, Vitamin D3, Cyanocobalamin.

Amino acid-based: Neocate contains free amino acids , the building blocks for all protein. Free amino acids are ?man made? and do not come from animal or soy protein. Therefore, Neocate is much less likely to cause an allergic reaction.

just found that on website...

are you in the US then? I got that bit of info from their uk website. Also the ingredients on the pot are diff to your list..

I am in UK, just couldn't see ingredients on their UK website, don't have a pot to look at, but you might as well take it with you on Friday.
My ds is having aminoacid test soon so I am interested in the subject. When he had an electronic test (SCIO) it did come up that he was aminoacid deficient, but the free-form aminoacids were not suitable for him at the time.

wow! i had no idea you could be amino deficient!! What are his symptoms again? He's quite abit older than my ds isnt he? Im wondering if anything will show up like that on friday.

btw, the ingredients on his pot dont have corn in it. It is mainly glucose, sunflower oil, coconut oil etc etc and there are about 70 ingredients listed!

My DD seems to have grown out of her reflux recently (17 months). She was on omeprazole until 1 month ago. I do think walking helps alot, so hopefully you will see an improvement soon.

I would suggest not giving milk when he wakes at night. It might help at first, simply because the liquid going down will wash the acid down with it. But then the milk in his stomach will stimulate more acid production.

I also changed when my DD had her evening milk. We used to do the usual bath, bottle, story, bed routine. I changed it to milk at about 5.30pm followed by a snack if still hungry, then bath etc. There is at least one hour inbetween finishing milk and bedtime. This means that she does not have a stomach full of milk when she is lying down. I think it helps because milk refluxes more than solids and also I feel uncomfortable going to bed with a really full stomach.

It is so tough to deal with when you are tired. I hope you get some improvement soon.

Hi, we have spoke on here before I think (on a reflux thread a while back), I am going through the same. DS, 11 months, still on Losec and domperidone, still bad silent reflux. Won't eat textured/lumpy food. Still 'chokes' and splutters very often, scares me to death. Can hear the refluxing coming up and being swallowed down almost non stop. It's been a real hard year. Seems to have got worse now he is crawling etc. I am not sure he will ever grow out of it and I will ever get him on real food.

I am always hearing people say 'oh my baby had reflux, was sick everywhere!!" but DS isn't really sick, it is the constant choking, not sleeping AT ALL some nights and irritibility that is hard, sick is not the problem.

hi jellybeans, we are the same. ds2 is rarely sick. silent reflux is worse than normal as it means the acid comes u[ then swallowed down again so more pain etc for them.

mumtoem, its odd as i give milk b4 bed and from when he goes down is the best sleep he has undisturbed, it starts around 11pmish....i know it isnt just habit as his recent ph study showed it was reflux episode that woke him

Oh yes we avoided milk before bed too, even bf.

He just had a normal dinner with us at 6.30 - 7pm and then bed at 8-8.30ish.

hmm so whats that all about with the milk and my ds then??

When Ds was tiny he used to feed and feed all evening til about 11pm and then sleep for a long stretch then.

Then after that he basically woke every hour.

i dont understand why he is getting worse over the last few days. The only thing that is different is the double dose of omeperazole but it has never done anything to him. As in you wouldnt know he was on it at all. Never improved, never made worse...when he had to come off it the other week before he had the ph study done (5 days before admittance) he was no difference at all

My DD would also get worse about 4 hours after going to bed. I don't know why, but having the milk earlier did seem to help.

Is your DS teething? That always made things worse for us.

Also, how do give the omeprazole? I had the capsules with granules inside. I would add the granules to a few spoons of apple puree, before food. To get the most effect from omeprazole it needs to be given with something acidic and on an empty stomach.

all formula are milk derived, I think. The hypoallergenic formulae like neocate are heavily processed. They are recommended for reflux but you could try pepti junior or nutramigen. You could also look at digestive enzymes. The Mandimart website sells a wide range, there might be something there or ask in Holland and Barrett.

As reflux is worse when lying down once babies start walking it may improve. The valve at the top of the stomach is weak in babies but gets stronger as they grow, hence they do usually grow out of reflux eventually. I's very hard until they do, my friend is going through this with her premature baby.

I looked up omeprazole (wiki) and in one place it says that it inhibits stomach ability to produce gastric acid (which as far as I understand would interfere with digestion of milk) and in another it lists side effects as "headache, diarrhea, abdominal pain, nausea, dizziness, trouble awakening and sleep deprivation".
Long-term antiantacids are not good as they mess up digestion further down in the gut.

I meant antacids

nightcat you are so knowledgeable (sp) i admire all you know.

i rang my gp this morning to ask her thoughts on me ringing consultant etc and she said she really didnt know what to suggest with ds so i have left message with his secetary to ring me back. It has been 10 days on double dose. Im convinced the reflux is worse since then.

Last night instead of settling in bed which i have been doing for last few days, I have got him out of bed, taken downstairs and given him a proper drink of milk. This resulted in a waking of midnight, 3am and 5am. That was so much better than the night before. Really dont understand. The other thing im worried about is that one of his teeth are discoloured now for a few months, people said (also on here) that he prob just had a knock as that can happen and it would go. It is still the same and asked gp if it could be the acid and she said yes it could and take him to dentist as they would know one way or another so am taking him next week.

mad we are in exactly the same position with DD who is 7mo. Reflux seems to have become progressively worse. Very good GP who is supportive. Comfort tends to be the best formula I hae used, even more so than prescribed ones. We do see the cranial osteopath and have seen some results from it (although have been going since DD was 9 weeks!) Interestingly with DD solids are also coming back up (along with the milk)

yes food does come up with ds2 but not that often, normally acid that comes out as sick. The food probably coming up as hasnt had a chance to digest it. So horrible isnt it

spoke to consultant this evening. He said nothing else they can do. suggested trying to give the evening omperazole last thing instead of before dinner, if that doesnt make a diff give both doses last thing...really still dont think this is going to make a difference. He said he wouldnt operate on a baby this young for reflux (which i understand) and that there isnt anything else i can do other than wait for him to grow out of it. Feel v low now.