Big reflux problems

[sazman]

Wondered if anyone can help?! To cut a long story short my DS2 who is now 14 weeks old has had major reflux probs since about 1 week old. He has been in hospital 3 times due to the severity and very poor weight gain. Anyway, after trying various medications and formulas..Ranitidine, Gaviscon, Dom peridone and Enfamil...none of which worked for very long...i started him on a thickener called Carobel a few weeks ago and the results were amazing. The constant vomiting he suffered before was virtually reduced to none at all, he was much more settled and started sleeping through the night (as he was no longer starving!)That first week on the Carobel he gained a huge 10 ounces in weight! Prior to this he was gaining just 2 or 3 per week(when on the Enfamil and still vomiting loads) After the second week on the Carobel though, he'd only gained 3 ounces. This puzzled me as he was still hardly vomiting compared to previously. At this point i have upped his intake of formula as thought maybe he needs more calories now he is finally getting bigger and more active. I mix the Carobel with Cow n Gate first stage formula. Does anyone have similar experiences and suggestions for the poor weight gain again?? His poos have increased on the Carobel to 3 or 4 a day..they are v sloppy and large in amount so perhaps this is the reason for continued slow weight gain?? It seems if it's not coming out of one end it's coming out of the other! Could it be the Carobel causing this increased pooing or maybe the Cow n Gate?? Is it worth swapping to a different formula?? I would be greatful for any advice or suggestions...thank you!

I have had similar problems with my little boy. he is 5 weeks old.

He is on aptimil easy digest, very good milk, health visitors and doctors vouch for this milk. my baby is now constipated due to the gaviscon, he has got to see a peditrition to be put on higher medication but i took him hospital last night as i was worried about him and it is just bad reflux and the gaviscon isnt working properly.

its horrible isnt it as they cry all the time and all the other symptoms. Its not nice to see them in pain.

sazman - sorry to hear about your DS's problem. I had this severe reflux with DD1. I found the medications equally useless. In the end 2 things helped -

1. changing to a hypoallergenic formula - we had to see a private paed gastroenterologist for this initially as DD wasn't failure to thrive (though low weight gain, huge amounts of pain and screaming and throwing up) - GP was then happy to prescribe it. Reflux is often made worse by a dairy intolerance so it may be worth looking into.
2. Milk thickeners which you are already doing. DD had to have hers pretty thick til she was about 9 months but it did probably make the biggest single difference. However we had problems with Carobel - it caused an awful upset gut which it sounds like your DS may also have? It might be worth trying something called Nestargel - it is a similar thing but a bit more of a faff as you have to heat it to make it up but in our case it was worth it. They dont often stock it at the pharmacist but can order it in within a day or so. The only reason i could find for the problem with Carobel was maltodextrin which isnt in Nestargel (both are carob based).

It sounds to me like the first week weight gain might just have been some catching up and that he is going to settle down to something inbetween. At 14weeks i would really advise against weighing on a weekly basis as it will go up and down and cause you to worry unnecessarily ( I know as i've bee there!).

It will get better - it is just a horrible rocky road for a while, but it will go away (it just doesnt seem like it now).

Thanx jasper for your words of encouragement. It makes you feel better just knowing that someone else knows what you're going through.I did wonder about the maltodextrin in the Carobel so think am going to give the Nestargel a try. He had a really upset tummy again in the night...it's unbelievable the amount of poo such a little one is producing!! I will phone pharmacy to order today. Did you try it on the advice of a medical professional?? Am wondering whether to take him to docs again but don't want to be prescribed more medicine which i know won't work!

sazman - it does sound like the nestargel is worth a go. No - i had given up on professionals by this point and was lurking on reflux boards online :-) Its made by Nestle and is for the same thing as carobel but just not as convenient to use so I suppose you wouldnt bother with it if carobel worked ok. But there is no doubt that carobel upset my Lo's tummy.

Were his poos ok before the Carobel? If so then changing to Nestargel may solve the problem. If not then it may be that diary intolerance is contributing to the reflux and depending on how receptive your GP is, it might be worth asking if they will let you trial a hypoallergenic milk like Nutramigen (you can buy it yourself but its very pricey). My DD ended up on Neocate which is even more expensive but we did have some initial improvement on nutramigen. It tastes absolutely vile though. My DD is still on a version of Neocate now (aged 3.5 yrs) as she still has mild dairy intolerance (funnily enough she wont touch milk anyway as she thinks it tastes wierd!).

hth

ps meant to ask - is the poo a bit green and frothy?

www.paediatricgastroenterologist.co.uk/development.htm

you might find this article useful reading. This is the guy we saw.

Hi Jasper,
Thanx for all that info..that's a very interesting article and might be worth considering a hypoallergenic milk for him. I'm going to try the Nestargel first though. I have ordered it today at my pharmacy and will hopefully be in tomorrow. My friend was telling me that Maltodextrin is the stuff present in many chewing gums and mints which tends to have a laxative effect so that may well explain all the pooing! Fingers crossed for the Nestargel...i will let you know how he gets on with it. Thank you again.
P.s...he didn't have any poo probs before the Carobel and the poo isn't green and frothy...just thick, creamy and plentiful!!

Hi Jasper,
Got the Nestargel and going to try it shortly! Can i ask you a few questions about it please?
Step 1 says to put the quantity of cold water required for the feed in a pan. Does this mean normal cold tap water?
It says to let it cool to about 40 degrees. Did you check the temp with a thermometer to be exact or is it just a case of it being cool enough for baby to drink??
Once it is made and in the bottle ready to feed does it have to be drunk immediately or can it wait a little?? Am just thinking about if we are going anywhere and preparing it in advance as may not always have access to a pan and stove!!
Thanx, Saz

HI there
will try to help but fraid it was a few years ago.
I think i made up 24hrs worth and kept it in the fridge as its such a faff (but there again if it makes no difference you can just go back to carobel).

I would have used normal tap water. Certainly wouldnt have checked temperature so i assume its just a question of when it is the right temp for baby. You will have to play around with the quantities to get the right thickness for your son. DD had it quite thick so we had to go up a teat size so she could still get it out. As far as i remember you treat it as you would a normal bottle of formula once made up ie fine kept refridgerated. Once you get used to it it isnt that much trouble - you just have to find a way of doing it that works for you.

Really sorry but my memory of it is quite hazy (luckily escaped the reflux this time around and able to bf).

I tried to find the instructions on the web so i could refresh my memory but no luck

Thanx again,
Will make a couple up this afternoon and see how he goes on with it. It doesn't say on the instructions to drink immediately like it does on the Carobel so presume it's ok to keep a while. Will let you know how we get on!

hi there - sorry for some reason it wouldnt let me post earlier. I hope it has helped. I definitely did not make up one bottle at a time so it must have been ok to keep.

Hi
Well so far so good! He's keeping it down well and is already much less windy! He's had 3 bottles of it so far and is sleeping soundly now...bliss!

Hi Jasper,
just to let you know my LO is doing well on the Nestargel...he had a huge weight gain again this week despite still doing very sloppy poos(they nearly always leak out of the nappy) Not sure what to do about this as not sure whether it's the Nestargel/Carobel or maybe a bit of an intolerence to cows milk formula?? His reflux is almost cured now he's on the Nestargel and he no longer shows signs of discomfort which the reflux used to cause...infact he is a much happier, settled baby who is finally filling out and catching up with others his age! My only concern now is the poo and whether it's normal or not. He has a check up appointment at the hospital on Friday and i'm worried that if i tell them about the poo they might tell me to stop the Nestargel and try and put him back on reflux meds again which i know won't work!! He usually does 3 of these sloppy poos a day but they don't cause him any distress or discomfort. Do you think this is normal? I'd much rather this than all that vomiting any day!It occasionally looks slightly frothy but is yellow in colour...sorry to be so graphic! Any more advice?? Sorry to go on!

Hi Sazman,
Sorry - been away. Glad to hear that the Nestargel is working and your LO is doing better.

re poo,. Its hard to sa without seeing. You said there were no problems pre Carobel/Nestargel? I would be surprised if the Nestargel is the problem though.... I thought that if there was an intolerance issue with milk that it normally turned the poo slightly green but it would be worth checking. It might be worth trying him on a hypoallergenic formal to rule dairy intolerance out (you can buy Nutramigen over the counter but it tastes disgusting so the problem might be acceptability).

Just reread your post and see you had a hospital appt. How did it go?

Hi Jasper,
Just to let you know he had his hospital app and fortunately did a poo there and then so i was able to show the paediatrition! He said it looked ok and didn't seem in the least bit concerned and since the app the pooing has actually slowed down some and no longer leaks everywhere!...so for the mo i'll keep things exactly as they are as he's still gaining really well on the Nestargel. Thanks again for all the advice!

Glad it helped and all is going well :-)