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Hi there, thank you so much for taking the time to answer these questions.
First off, my son is now 2yrs 1month, and is still suffering quite badly from reflux. He is currently on losec 25mg a day and while on the medicine he is a perfectly normal boy, off the medicine, he is clingy, cranky, agressive, screams, hits. Before we went on the losec he had a lot of ear infections and also sleep apnea, which have both cleared since being on the losec.
We have been tested and he has a Boix Ochoa score of 32, what does this mean? He refluxed 156 times in 24 hours, but 142 of them were during the awake time.
I just feel that the whole reflux thing is going no where, it isn't bad enough to have the fundo, but not good enough that it isn't always there in the back of my mind. I really don't want him on medicine for ever either.
Well my first question is, can you tell me a Boix Ochoa score of 32 is bad?
Since starting the losec Parker has had extreme myclonic jerks, which they are thinking of sedating him at night for, I beleive that this is side effect of the losec, have you ever heard this?
We are going to do a trial wean of the med in January, if this doesn't work, what would you suggest.
Once again, thanks for your help.
Hi Scarlet,
Thanks for contacting us, and we are happy to help in any way we can. It sounds like things have been particularly tough with your son all this time, and I can appreciate how you feel like you are getting nowhere. I know for me, I constantly pushed for answers, wanting to make my children’s’ lives better. It was really tough to have to come to terms with the fact that we may never have real answers, or a real cure. It’s hard to give up on that.
It is fantastic to hear how successful the losec is for your son, and I am so glad that it is able to control his reflux as well as it does. Can I presume he has had an endoscopy while on medication, to ensure there is no damage/inflammation from his ongoing reflux? Even though the signs may be controlled, I don’t think it necessarily means that all any inflammation is well controlled.
Was the pH probe done to confirm reflux, or for another reason? I don’t have a lot of information about the Boix Ochoa score; just enough to know it does confirm reflux, which I’m sure your doctors would have already explained. Was this performed while ON medication or when off it? The impact of that might be significant.
I have to say too, that I have never heard of myoclonic jerks as being a side effect of Losec, but as a reflux parent myself, that doesn’t mean much. Is he taking any other medication (such as Maxalon?) If the doctors have confirmed it is from the Losec, then have they explained anything else about it? Have you contacted Astra Zeneca to discuss that side effect with them as I would think it would have to be a rare side effect? Has he been on any of the other similar medications, like Zoton or Nexium? Perhaps they wouldn’t cause the same side effects?
Does he have any other issues? You said the sleep apnoea and ear infections have resolved since being on losec, but are there any other issues he continues to suffer from? Have the doctors discussed a fundo with you, or because he is so well controlled while on medications, have they studiously avoided it?
Sorry, I seem to have lots of questions for you, and very few answers. I do understand the position you are in, and wanting the situation resolved, but not knowing where to turn. The question of remaining on medication is a tricky one, but so is the surgery idea. It’s not great to think of your child being reliant on medication, especially given he gets side effects this early on, but surgery is no guarantee that medication will be stopped. My son had a fundo just before he turned 3 yrs old, and he remained on medication for quite a few years following that. I was thrilled that the fundo gave my son a chance at life, as he had a very poor quality of life before that, but it is a good example of needing to continue with medication despite surgery.
Making a decision to go ahead with reflux surgery is agonising as well, but perhaps there will come a time when you know you have to seriously consider it for your son.
I hope the trial wean goes successfully for your son. Does he struggle with the heat and humidity of summer? Often the weather extremes at that time of year can flare a lot of reflux, so if it is typically a bad time for him, it may be worth postponing for a few months until it is more comfortable. I would also avoid all times when he is teething, so if he still has more teeth to come through by then, it might be worth postponing once again. Everything needs to be stable and well controlled for a while before you try weaning, and I really hope it goes well for you. Please contact us again if you would like to discuss things further, or go to info@reflux.org.au and leave your phone number if you would like someone to give you a call. Sometimes it can really help just to talk to another parent who understands.
I hope that helps
Glenda
RISA Inc
It was really tough to have to come to terms with the fact that we may never have real answers, or a real cure. It’s hard to give up on that.
The question of remaining on medication is a tricky one, but so is the surgery idea. It’s not great to think of your child being reliant on medication, especially given he gets side effects this early on, but surgery is no guarantee that medication will be stopped.
This is so true, I think this is what I am struggling with now, I have waited and waited, and the solution is to wait some more.
Parker has had an endoscopy a year ago (at the same time as the probe, he was 14months), and at that time it was clean, this was before we started the losec and had been on zantac, so that was a good thing.
The pH probe was done to confirm reflux, at the time we were even unsure if this was his problems, looking back now, it was obvious, but I really didn't beleive that a child over one could have reflux, I had never heard of it before. It was performed off medications, but at this stage we were only on zantac and we stopped it 5 days before the procedure.
The drs haven't confirmed the jerks are from the medicine but they started soon after we commenced with the losec. The neurologist said that these types of jerks can be caused by medicines, but he has never heard of losec doing it, the paed. gastro said that it is highly unlikely to be the losec. The only way I can tell is if I stop the losec. i wil ring the manufacturers and see what they have to say about it.
The only other medicine he takes is flixotide, and sometimes mylanta and also zantac. We are trying some homeopathic medicines at the moment, but the jerks were there before that. I have noticed no improvement so far with the homeopathy.
Does he have other problems, well I think he does, but he is just not ever bad enough (which is a good thing), like eating, sometimes he just wont eat all day, but he is still 20% for weight, so they don't think this is a problem. He had 5 concurrent ear infections before the losec, and lost some hearing due to this, but since then has had no more ear infections and the hearing loss wasn't permanent. So apart from the incidental things now and again, on the losec he is really good, no disturbing problems (except the twitch)
The fundo has been mentioned but hasn't been suggested as an option, though she did say she doesn't want him on meds after 3. I think she thinks he is growing out of it, but I know he hasn't yet, it is deceiving, EVERYONE thinks he is great now because he is well behaved, no screaming etc, but if I even am late on a dose he can start getting wild. With the fudo she said it is hard because generally kids have other problems that make it cut and dried but for my son, he is doing OK, as long as he is on the med.
Did your son have a lot of reflux problems, so it was an easier decision to make, or was it similar to mine, where it is split right down the middle?
I will be making sure he is well enough for the wean and I think summer is best as he is less likely to get colds etc, so hopefully will be less likely to have reflux flares.
Thank you for your offer of support, I have in the past been to your website and am a member of one of the forums that you have a link to, this has been great for me to see that there are other people out there in similar situations. The only problem is as time goes on more and more are growing out of it and Parker is the same. It is also an American site, so they do things a bit different than here. Taking medicine for life seems to be no big thing.
I suppose the worst thing that silent reflux does it always makes you wonder if it is real, if I am making it up, maybe he is just a highly strung child, but then I see this perfect little boy, who can be so sweet turn into the devil sometimes and I know something is happening.
Thank you Glenda for taking the time to answer me so thoroughly, I hope I have answered all your questions and it gives you a little more insight into our situation.
Hi Scarlet,
I am really pleased you have made contact with us, because it sounds as though you feel so alone right now. Just having support from another parent who does understand can make the world of difference, and I am happy to help as much as I can, as is everyone at RISA. As reflux parents, we know only too well the emotional rollercoaster ride that goes with persistent reflux, as well as the lack of support and understanding that is common from family and friends. Most people don’t know much about reflux, though often presume they do, which can make it even worse.
Have the doctors wanted to investigate the jerks at all? I haven’t heard of them being related to losec, but it will be interesting to hear what the manufacturer says about them. Is it definitely muscle jerks, or could it be extreme restlessness, as that can sometimes go with sleep issues/reflux??
Re the eating, you mentioned- that is actually quite common with refluxers too, and some like your son are still able to maintain their weight (though goodness knows how). That is good that he is able to, but it also can make it harder for the doctors to understand how much eating can be an issue for him. If you give him any Mylanta prior to eating, does it help him eat more? Some kids can have a lot of nausea with their reflux, which can put them off eating (that may just explain why he isn’t so keen). Have the doctors ever considered using a motility medication to see if it affects his appetite?
You mention he takes flixotide; does he have any respiratory issues? Any coughing, spluttering, wheezing, croup, asthma or that kind of thing? They can often be related to reflux as well. What about sleeping? My son would wake up quite a few times overnight just for a drink of water- again reflux related. I found there were so many things that are often part of it all, but its not easy to see it is part of the reflux picture.
I know what you mean too, with people around you having children grow out of reflux, while you are left to deal with it still. There are so many things about reflux that make it really difficult to deal with, and that emotional rollercoaster never seems to stop. We get our hopes up, and then get disappointed, and it can feel sooo isolating when we don’t know anyone else going through the same thing. If you are interested in joining RISA, we have online parent groups, and ongoing support with coffee mornings (depending on where you are), informal get togethers, and regular newsletters etc. It might help with you feeling less isolated, which can help, but then again, just knowing there are a lot of parents who are going through the same thing can help too.
It is great that the losec is able to control his reflux so well, but please don’t feel as though you should have picked up on his reflux earlier. I went through a lot of guilt associated with one of my other children as well- my daughter’s reflux wasn’t diagnosed until she was 6. Looking back, it was SO obvious what the problem was, but nobody picked up on it at all. I get quite resentful, actually, when I think about it. She never ate very much, and I just thought she was extremely fussy. I thought she would rather go hungry than eat something she didn’t like, but it turns out she was just feeling lousy (poor kid). She had a lot of respiratory issues with hers too, as well as behavioural issues.
Are any of your family or friends understanding of the turmoil you are in? I can imagine they are very much like mine, in that they can see a normal toddler, and then wonder what on earth you are going on about. It is completely normal too by the way, to go through the -
“maybe I’m just exaggerating and there is nothing wrong after all”
“maybe it’s all in my head and I’m making it up”
“maybe he isn’t really that bad”
“maybe he’s just like this and there is nothing wrong, I just need to get used to the idea he is a high needs child”
... and on it goes...
I went through it, and so have lots of other parents I have spoken with. Trying to make peace with it in your head, but playing mind games at the same time.
My son had other issues, and the losec didn’t successfully control his reflux either- but that certainly didn’t make for an easy decision on a fundo for him, and it certainly didn’t stop me playing those mind games either. I don’t think a fundo is ever an easy decision for a parent to make, and I really wished someone else would make the decision for us. Most people could look at my son though, and think he was a ‘normal’ kid. Sure, he cried a lot and had temper tantrums, but they only saw him for a while. All kids do that, don’t they but they never see the big picture; kids don’t do that all day long.
I really wish there was more I could do for you. Please just believe in yourself, and believe in your instincts. Reflux can be a dreadful condition that erodes our self confidence, as well as impacting on our children’s lives, so please trust in yourself, and take one day at a time.
I hope that helps
Glenda
Thank you once again for your reply and kind words. You seem to know me so well.
I rang the losec manufacturers and they have not got on record anything of the nature I am describing with the twitches, but they took my number and said they will look into it. There are rare side effects like inability to sleep, wither way, the side effect would be rare. I will let you know if I hear anything.
I suppose I do feel a bit alone right now, I am very fortunate to have a really good supprt network, but every now and again I go through that worry, that I am having now.
Basically with the jerks it is wait and see again, we have had an EEG and it confirms that they are myclonic jerks, we see the neurologist next week to see what he thinks.
A motility medicine hasn't been offered and I am thinking this may be one of the problems, he is on erythromyacin, for a pneumonia and he is eating quite well at the moment, I know this med can help motility (and no the pneumonia is not reflux related, we have had it checked), I am actually going to the normal paed on Monday and asking about this. You are so right I really don't know how he is maintiaining his weight, somedays he eats next to nothing. He will have one bottle in the morning and he drinks it quite well I think cause it is soothing in the morning, and I supplement it with sustagen, these are the best caloried in the day he gets.
I haven't tried mylanta before feeding for a long time, but I may see if it works, it didn't in the past though. He is on flixotide for asthma, confirmed to be asthma and not reflux related from the probe. Basically he gets night coughing when he is not medicated. We are having a CF test next week, though the paed doesn't hink he has it, she just wants to rule it out.
All my family now understands what we are going through, butlike you said it is easy for them to forget, they see this happy kid who is great while he is on the med. I am sure they sometimes think that I over exaggerate it. And I am so grateful that he doesn't have anything mopre serious or have worse complications, but at the same time, just confused as to why.
I am now dealing with all the maybe questions, I have in the past done it and it was fine but seeing the gastro Dr again reminded me of it all again, and I just have to work through it.
Please just believe in yourself, and believe in your instincts. Reflux can be a dreadful condition that erodes our self confidence, as well as impacting on our children’s lives, so please trust in yourself, and take one day at a time.
This is so true, I do trust my instincts, but sometimes I need a quick shake, I know I have done so well to get to this point, but at the same time, I have had enough of waiting when I don't know what I am waiting for, there are so many what ifs and buts, and thats hard.
You don't have to worry about me, I will be fine, this is just temporary I think I have to just be patient until the wean and go from there, if it doesn't work though I will be asking for more answers!
Thank you again.
Hi Scarlet,
I am so pleased to hear that you have a great support network; it can make all the difference! While I don’t know you, I sure can identify with how you feel and I don’t think I’ll ever forget how it was! You are allowed to have moments/times where you feel sorry for yourself too by the way (even while being grateful it is nothing more serious). What you are dealing with IS very traumatic, and IS very tough to get your head around. It can make you feel so helpless too, so please allow yourself those times as you work out ways to cope with it all. I dare say it’s all part of the process.
Re the pneumonia and asthma- I have to say I am not convinced they aren’t reflux related in some way- it just seems to fit in the whole picture too neatly. In my experience too, no test is 100% accurate, and there are so many things about the human body that science has not yet worked out. Also, our respiratory doctor wasn’t convinced that my son’s asthma/pneumonias were reflux related either, but his airways improved dramatically when he had his fundo (which is of course why I am wondering with your son). Of course your doctors know a whole lot more about this than I do, but there is part of me just wanting to say just keep an open mind on the issue!
Interesting he is eating well on Erythromycin. Perhaps when this course is finished and he is completely well it could be worth asking your doctor if he could try a regular low dose to see if it improves the respiratory issues as well as his eating (and see what happens with his weight).
My kids were also tested for CF and immune deficiencies, so I can identify with all that part of it too; I hope you get the all clear like we did. I hope your neuro appt goes well next week, and you perhaps get some answers with the jerks. It’s one more thing to worry about though, isn’t it.
Glenda
You have exactly the right words to say! I can see that you truly understand where I am right now Talking this over and getting someplace in my head has truly helped me, thank you.
I am going to ask about the erythromyacin at the paeds on Mon, so hopefully we will get an answer, but like I said they sort of brush it off cause his weight is stable, but I know as a mother he mustn't be reaching all his nutritional standards.
I thought the pneumonia may be related, but I can only go on what the Drs say. I have an asthma/sleep specialist and she said she thinks that it is not related due to the fact that this is the first one, that it is going around and also that it cleared so nicely with the Erytromyacin, she said if it was reflux related, generally it would need two types of antibiotics. This Dr is so good, her daughter had reflux and she really listens to us.
With the asthma, we have a history in the family and my other son has similar symptoms to Parker. So I think he was always going to have it, BUT I do beleive that it is worse with the reflux and also makes the reflux worse. We are weaning off the flixotide about 2 months before the losec so that we can see how the losec wean goes fully, I have been given different strategies for this wean and hopefully the way it has been planned will work so we can get answers straight away.
Now is the waiting time....
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