At my wits end!

[furkids]

Hi,

My DS was diagnosed with reflux at 6 weeks and was prescribed Zantac which was useless. He projectile vomits it back up no matter which way we give it. So we stopped. He is now 12.5 weeks and has been fine as he was put in a brace for hip dysplasia which kept him upright all of the time. He has been out of it for 2 weeks and I am literally at my wits end.

He crys all the time, screaming endlessly as I try to get him to sleep, sleeps for 20 mins tops and wakes up screaming. He vomits after feeds, has violent wet hiccups, gags / chokes on the breast, arches his back, comfort sucks, you can literally hear him vomiting into his mouth as he trys to go to sleep (not that there's much of that during the day). He is better at night once he eventually goes to sleep.

We have propped his cot, bassinette up, prop him up on the floor, have hired a baby hammock because it seems to help a little and soothe him.

I originally tried Infant Gaviscon and Mylanta without success but have just started giving him Mylanta again today in the hope it will help him.

I am starting to spend as much time crying as he is and feel like I'm clutching at straws. I also have a long history of GERD and am on Losec daily. The Paed we were seeing just prescribed Zantac and said if that didnt work we just had to live with it.

I'm told you can give Losec to babies but am apprehensive as the dose is similar / same to what I'm on and I'm an adult. Do you think this is worth exploring?? Can I see a GP as the Paed is horrible??


Pls help :gloomy:

[RISA]

Hi,
Thanks for contacting our organisation, and congratulations on the birth of your beautiful little boy. Gosh, it sounds like things have b een really tough, but wonderful that you have been able to see how great he can be as well.

I'm sorry too that you don't feel supported with your paediatrician, and you have every right to see another doctor if you prefer. I found that it was extremely important to have that support from the doctors, and to know it was there was even helpful to me.

Your GP may be able to help, but i guess it depends on how much experience they have with reflux babies, and whether they feel comfortable treating him. You may like to see a paediatric gastroenterologist (paed gastro) as that is their specialty area.

Losec is quite frequently used in babies, and even in quite high doses. I believe it is because babies metabolise it very differently to adults, so while it seems to be an enormous dose, they aren't getting as much of it, if that makes sense. They may need to be careful in young bubs with it however, and they may like to keep an eye on it. if they do prescribe Losec, they may do blood tests etc, but it can be a really effective medication.

I know the thought of giving medication is often daunting, but there is another perspective that you may need to consider as well. What are the risks of NOT giving medication. Reflux can cause inflammation and even ulceration in young babies, and can also cause lots of other complications like feeding issues and respiratory issues.

It sounds like your bub is quite distressed a lot of the time, and sometimes, a vicious cycle develops. the less sleep he gets, the more likely he is to reflux, and the more reflux he gets, the less likely he is to sleep.

I don't know how much you know about reflux, but comfort feeding is very common, especially if it is around an hour later. That is when their stomach is most actively digesting their feed, and that is when they are refluxing most (and acid levels are highest). Some babies, in order to soothe the pain, learn to feed some more, which relieves it temporarily. Problem is, their tummy doesn't get a chance to empty, so an hour later, they demand anotehr feed. It isn't hunger driving it but discomfort.

Sometimes if that cycle can be broken you can get the feeds sorted out and the reflux can settle down quite significantly. Can you hold out the feed by distracting him, or offering him a dummy or your finger to suck on? Perhaps that would be a good time to offer antacids as well.

Do you use thickeners at all? After a breastfeed, you may be able to give him a spoonful of thickened milk (either breastmilk thickened with something like Karicare food thickener, or thickened formula). This doesn't generally stop refluxing, but can lessen vomiting and can help them feel more comfortable. It doesn't work for every b aby, but it may be worth trying if you are happy to consider it.

It is also really important for you to look after yourself too. Have you spoken with your doctor about how you are feeling? Whichever doctor you do talk to about your son, perhaps you can also mention how you are feeling too? it is really important that you get support for yourself, and I hope you get a break for yourself too.

If you need any suggestions about how to approach the doctor, or have any other concerns, please don't hesitate to contact us (here or via email so we can offer further support).

It is really important to follow your own instincts and do what you feel is right, and what you feel comfortable with.

I hope that helps

Glenda

[furkids]

Hi Glenda,

We finally got a referral to a paed gastro and after 8 weeks finally got in to see him (which was last week). He put DS (now 5.5 mths old) on Losec 5mg twice a day.

Now after a few days, DS really seemed to pick up. Was sleeping better at night and during the day, less crying, no wet hiccups or back arching, less comfort feeding. This went on for 4-5 days but over the last two days, he's back to his old self.

He wakes screaming inconsolably at night, not sleeping at all during the day, wet hiccups, comfort feeding, lots of vomitting, back arching.

How long does Losec take to work?
Can he still have good and bad days?
We think he might be teething - could this affect the drug?

Thanks - I'm a bit frustrated as I've sort of seen the light at the end of the tunnel and now been dumped back at the start.

[RISA]

Hi,
and wow, that was a long wait. I'm sorry it took so long to get in to see someone, but at the same time, glad that they listened and did something that helped.

I can totally understand your frustration ,and perhaps even devastation at the moment too. When things start going right, we start to think that finally things are better, or that we can cope, or we have worked out what to do, and if things then turn bad again, it can be quite devastating- our hopes are dashed quite horribly. It probably doesn't help much, but it is the usual reaction, and I did it myself far too many times to remember (even if I would forewarn myself it could happen).

So, to answer your questions- "How long does Losec take to work?" That is different in all babies- with some, the parents will notice a huge improvement straight away, while for others, there is no improvement for several weeks- maybe 4 or even longer. For others, Losec doesn't seem to make any difference, and for them either a change in medication, an increase in their dose, or something else entirely might help.

"Can he still have good and bad days?" Most definitely, unfortunately. It is very common to have a cycle of good and bad days with reflux, whether they are on medication or not. The good days are great, but the less than good days, as I said, can be tough to cope with, especially if you don't expect them. It may be a sign that his dose isn't quite high enough, but given that he only started it last week, it may just take a bit more time to get into his system.

"We think he might be teething - could this affect the drug?" I am not at all sure about the medication being affected, but teething can cause reflux to flare, which would account for the change you see. Sometimes our kids will need to have their medication increased during teething (or during other times when their reflux flares, such as vaccinations, illness, a change in their routine, or even crawling). You may want to talk to the doctor about it if it doesn't settle, so they can make the decision to make changes, or not, as they think necessary. He certainly sounds distressed by all of it again.

Other things that might help while he is teething, is to provide regular pain relief; give him something to chew on (mouthing toy); and give him something cold to suck/chew on (ice chips, ice wrapped in a washer).

It is still really important that you trust your instincts and if you think he needs something more to help him, then please contact your paed and let him know. You may be able to just put a phone call into them, so you end up just having a quick chat, rather than going in to see them.

I hope that helps,

Glenda

[furkids]

Hi Glenda,

Well its been 2 weeks on Losec and other than those few good days near the start, DS may as well not be on Losec at all.

He's pretty much back to his old behaviour, but more vomitting (if thats possible :eek: - he seems to vomit up entire feeds every couple of days). He has less crying episodes at night but still doesnt sleep for longer than 1 hour and you can hear him vomitting into his mouth. BUT he now wakes himself up choking / coughing on this.

He is also comfort feeding non stop - which is resulting in me getting blocked ducts and mastitis almost fortnightly (if not weekly)

I spoke to the paed gastro's office and they want us to keep going for a few more weeks and then come in and have him checked out!! Quite frustrating really!!

[RISA]

Hi,
I'm so sorry that things are still so rotten for you all :( I know just how hard it is to deal with. I know too, just how hard it is to be told to wait it out for a few more weeks, especially as you are the one who has to cope in the meantime!!! It can be soo difficult!!

Are you getting any support through all this, and some time out? It is really important that you are getting that, because what you are dealing with is so hard, and I'm sure you must be exhausted with next to no sleep. I have no idea why most people don't seem to understand how difficult that can be, but I do hope that you have been able to get some help through all of this.

Do you still think he may be teething? That can still be factor, and if so, then offer pain relief etc as you are able to. That can definitely affect the reflux, and even bubs who have been under control can be totally uncontrolled once again because of it.

I'm sorry that you have been getting sick too- esp with mastitis as that will make you feel dreadful!! I imagine being so exhausted and run down will affect your immunity too, so that you bounce from one illness to another :(

It may be that the medication will need to be increased. Is your doctor happy for you to use an antacid or other over the counter medication in the interim? They may be happy for you to use Mylanta or Infant Gaviscon to help him through, and if you use that, you may also be able to reduce the number of feeds he is having. Sometimes, just breaking that cycle can make a big difference too.

How are you giving the Losec? Are you using a capsule or the suspension? Did they give you any specific instructions to go along with it, as it does make a difference, depending on how you do it.

If you really can't wait the extra few weeks, and feel as though you might fall apart, then please contact the doctors again and let them know that. Even though they've asked you to wait a couple of weeks, if things have deteriorated so badly that you just can't do that, it is okay to let them know that. Keep in touch with them so they know exactly what is going on- it can help them take things more seriously. Keep a written record too, of what is going on- record his sleeps, crying, feeds, vomiting and other reflux signs etc. Sometimes they will take that more seriously than just going by what you say (not sure why though).

Sometimes too, it can help if you take a friend or family member with you, who will back you up- to agree that things really are that bad. That can also be helpful too.

One other thing, if medication is changed/increased and you still don't see much of a difference, then the doctor may consider whether food sensitivities are playing a role. Cows milk protein allergy/intolerance seems to be very common in reflux babies, and so is soy. If the medication doesn't work, they may consider that angle.

I know it probably seems like you are going through this on your own, but I hope it helps to know that there are heaps of other families who are struggling through this right now too. IF you need further support, and need to talk to other families, you may like to consider joining our organisation- just go to our website at www.reflux.org.au and follow the links.

I can't promise when it will be, but it does get better, even if it seems unlikely at the moment! Keep trusting your instincts,

Glenda