reflux :cry:

Was wondering if any of you mummies with lo's suffering from reflux had any tips as we are running out of ideas.
Oskar is 25weeks +2 old and is really struggling with reflux. It started almost straight away but I was told he was just a sicky baby. By 8weeks old the hv agreed that he needed some gaviscon so i went to gp. Then a cycle started of him getting worse me going back them doing nothing except giving lactulose so it got to the point where he had gaviscon for reflux that made him sooooo constipated he would bleed (and he was still sick) so they gave him lactulose to try and counteract the problem (alot of lactulose but not doing that good a job!) But the lactulose had 2 side affects 1. it is making his acid worse due to the sugars in it 2. He is screaming in pain from stomach pains from the lactulose.
He has dropped down the percentiles and is now hovering just below 25thpercentile image which considering he started into the world at a painful 8lb12oz has caused them concern. He screams in pain for hours on end and is still sick during and after every feed (I am still bf) he is sick during the night whenever he lays down despite the cot being tilted so I end up holding him upright to sleep.
The drs didnt seem to pay much attention to me so when I went back again a week and a half ago I asked my mum to go as well as she looks after him 3days a week while I work so has to deal with it as well.
The dr now has decided that maybe he needs something else and has finally referred him to the paedatrician to be prescribed stronger drugs which apparently gps arent licensed to prescribe.
While waiting for the appointment she told me to start weaning him as it will make it better - we had already started but he wont take any purees etc hates the spoon and spits everything out. He doesnt take bottles very well when I am at work and has been known to go all day while I am at work not having anything whasoever.
I have finally got the appointment through to find that I have got to wait until July 7th to see someone :\?

So he has got to suffer in pain for over a month until we get to see someone for some medication.

I know I have gone on moaning for a long time just wondered if anyone had any ideas of how to help him in the mean time (and my washing machine!!!!!)

Sorry for such a long post.

Posts

  • Ok it is TOTALLY unreasonable that you have to wait this long! Ring whoever you have been reffered to and demand the appt is made sooner!!! Really truely scream and stamp and cry until you and your lo get what you need.

    I would stop with the early weaning ( personally) as it doesn't make reflux better for ALL babies and he is obv not enjoying or maybe even ready for it!

    Please please please fight fight fight fight for your lo - you can get that appt earlier!!!
  • I spent all day yesterday phoning to try and get an earlier appointment and they were very obstinant. They will not give an earlier appointment and said I was lucky to get one that early as an emergency as the waiting list is 8weeks!!!!!
    I phoned drs and they said there was nothngi they could do.

    I dont think weaning is particulary helping his acid as he brings any food he has eaten up as well. He is very interested in food but seems to hate the spoon but will sneakily try to take things of peoples plates when we are not watching and shove it in his mouth to chew!!!
  • maybe go down the BLW route then rather than the purees? Sorry the appt won't get moved sooner! If the gaviscon is bunging him up THAT much and not stopping the symptoms would it be worth stopping that till the appt or does it help a bit at least?
  • By the sounds of your post, can I assume that Oskar has never been put on renitadine? My son has reflux and has had it since he was 3wks. He is now 6 months. After a big battle, albeit much shorter than yours, I had him prescribed renitadine. He was a changed baby within 24 hrs. I still give it to him now, but am looking to wean him off it. He has been on solids for a month now. I only introduced solids before the 6 month mark because he was showing every sign that he was ready to move on. I have been very weary of his reflux so took it slow and he seems ok, if not better than when he was just on the milk. But every baby is different. Oskar may not be taking to the solids because he is in pain.
    Back in the beginning, the gaviscon did nothing for him and I was also afraid of the constipation that could result from it having read others' stories. Your poor little man. The renitadine (when my son was prescribed it in December) was not a licenced drug - as in it was not yet approved. However, gps CAN still prescribe it. Just not all of them will (ie usually those who just dont know anything about it and dont feel comfortable). Can you try another gp as waiting another month seems so unfair on you both? Can your hv step back in and put some pressure on? Although mine was useless, the one thing she did for me was pressure the gp to do something for my son. I cannot believe that you have been putting up with this for 4 months!!
  • Sim75 - no we havent had ranitidine I have seen 3 different drs and none of them will prescribe anything but gaviscon.
    Our health visitor is useless as well and has said just wait!

    Maximum+1 - we have decided to try the blw route as he is just not into purees and spoons. At the moment he is still very sick with food but he is happier to try different tastes. We have reduced gaviscon due to bunging up as the constipation was making him bleed - we only use it when it is essential e.g before bed and if he is really sick but he still needs lactulose twice a day evenif he has 1 dose of gaviscon,

    lara- i have tried everything but have no joy for an app earlier, the thought of being sick free sounds like bliss and with no meds.

    marnie - i know what you mean they seem to be useless and all in my surgery refuse to prescribe anything else.
    I will keep it in mind about the slow bowel as my ds1 has movicol for a similar problem. It is interesting because Oskar had problems from the beginning first with his blood sugars not levelling properly requiring him to be fed every hour. He then had a few weeks where he would poo up to 12times a day and then all of a sudden it just stopped and his sicky ways got worse since then he goes about once a week which I know is normal for a bf baby but that once a week is a struggle for him due to meds so I will def mention it at appointment.
    I think I will have to do some searching on the internet for reflux to look for foods to avoid as he is trying new foods (not purees anymore as I have given up with them coming back up as they go down)

    From everybody that has replied thank you and it seems to be apparent that drs are not too keen on admitting the problems of reflux and helping to sort it quickly. I will just have to keep going with the sea of sickness until the appointment and keep trying to get weight on him so that he doesnt fall behind.
    At least there is 1 thing to laugh about - when I am feeding him in public under a blanket people always give me funny looks as he makes a lot of grunting, groaning and general pain noises as well as snuffling so it looks like I am either suffocating him or that he is turning into a cannibal and is literally eating me!!!!!

    Thank you to all that has replied I can see that hopefully there will be a light at the end of what seems to have been a very long tunnel!
  • please keep us updated when you do finally gett hat appointment. I hope it improves for you all!
  • I really feel for you. After seeing the results of renitadine on my own son, and then on 3 of his cousins (it's common on my hubby's side, he gets it too!!) I cannot rate it enough.

    Interestingly, one paed we visited told me that there are meds (e.g. antacids like renitadine/zantac) that can relieve the pain from the acid burn, but nothing can stop the throwing up. Im not sure whether I agree with this or not, but my son started off with silent reflux and it then turned into him throwing up, which later eased.

    As for foods to avoid, I was careful with anything acidic when we started. So no tomatoes (which Ive now been able to introduce no problems). I just think about what stirs my hubby's reflux up. Beer is another but I doubt you would consider offering that to Oskar!! (My son isn't allowed it either!)
  • We have had the same problem, we have been lucky that the infant gaviscon hasnt caused constipation but Olivia is 7 1/2 months old and yesterday we finally got changed to something else, with the infant gaviscon she was still being sick after the feeds and juice also made her sick, the solids only came up becuase the juice or milk was coming up so weaning did not make it any worse for us. Olivia doesnt have acid reflux either so the vomiting while distressing for us doesnt bother at all. They decided to try a thickener on her so we are now using something called Thick and Easy (I think the make is Hormel) and they have also given us the juice in it. She tried the milk thickener this morning and she has only been sick the once, for Olivia this is great because she is normally sick constantly between feeds. GP's can prescribe reflux medication they should be trying other things first before they refer you, I think your gp is a bit on the lazy side, I hope something gets sorted for you soon xxx
  • We went through it all with my LO, we had tried gaviscon, renitidine, domperidone etc and nothing was working.

    We were on staydown milk for a while which did help but then she started being really sick again and weight was dropping.

    We weaned at 5 months on the advice of our Gp and it worked well for us, she wouldnt bring up foor but milk was still really bad..

    What cracked it for us was seeing a different Gp and he prescribed a feed thickener called Carobel, made by cow and gate. By adding this to her milk it pretty much stopped the reflux within a week.

    She is now 11 months old, and been off the carobel for around a month and the reflux has gone completely.

    Our Gp seems to think that if you can find something that works for a month or so, then it gives their stomachs a chance to settle and heal, which in itself can resolve the problem.
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