Well I went to the Dr yesterday morning armed with what you ladies have told me. He agreed that JD probably got worse because he not only lowered his dose but changed it to a suspension. So we are back on 20mg losec tablets a day PLUS 2ml Zantac 3 times a day. He said he was meeting the gastro specialist last night and was going to request an urgent time slot instead of December as we have now. He ordered blood tests which we did this morning. That was horrible. JD was so brave! He is checking everything, particularly something to do with the immune system. He should have the results on Monday. He said that it is very rare that a sever case of reflux that JD has is so persistent and has classified his case as aggressive, requiring immediate medical attention. That scared me, but he also said we can fix this. I wonder if it was me crying begging him to help my little boy, since he has suffered so much for so long I told him I just want someone to do the right thing and help him instead of making him suffer more.
Can you believe that JD's right grommet (that was only inserted a month ago) is now infected. He said his body could be trying to reject it as it sees it as a foreign object. I am now concerned again, about his hearing in that ear!
We will call Dr on Monday and see if anything interesting came from the results. I will keep you all posted. Please Keep my baby bear in your prayers.
Sound like you have a good Dr who is willing to listen to you. Xx Fingers crossed for better times ahead.
Jack seems to have gone in reverse this week. Yesterday was as though he'd never had losec in his life. He was really squirmy to feed & the crying was just like before. He's been coughing & sneezing more this week, and gradually building up to this. Poor kid. We think it could have something to do with his vaccinations. Maybe one or all of them have his tummy all out of sorts. His poo has been burning his bum again, too. It's really acidic. But weirdly, he slept for 9hours last night!?! Both DH & I thought the other one had gotten up to feed him at 2am... but no, he had slept until 5am.
I'll wait until monday, but then I'll call out Paed (who is in Perth - 6hours from us!) & tell him what's been happening. I'm down in Perth at the end of the week, so I can see him then if I need.
wow, reading this thread is like hearing myself talking out loud, our story is exactly like everyone else's. We're actually currently in a baby clinic at the moment to get help with trying to settle Finn, but it seems we might just need to change his medication. He is six weeks old and has been on Zantac for just over two weeks now but I really don't think it's doing anything. We saw a GP yesterday (we're here for a 5 day stay because Finn is impossible to get to sleep and seems to be in constant pain during the day time. Oddly, like some of your babies, he sleeps well at night...) and I asked her to prescribe Losec but she just said talk to our paediatrician week, I was so mad!!
Anyway, hope you don't mind me butting in but it's so encouraging to read stories of Losec working - it gives me great hope that I might have my gorgeous smiley baby all the time
Entreat, I think you are on the right track with the immunisations, they always generally do a number on refluxers, most probably because it is like giving them a little bit of an illness, it just makes them worse.
The other thing I can suggest is that he is coming down with something, don't worry, if it worked before it will again, use mylanta in the mean time.
Welcome Lise! I like this little reflux support page we have going.
Jack had a great day yesterday (first day swimming!) & slept really well. He even put himself to bed properly at 5pm (sleeping until 11pm)! Then from 1am onwards he was in a lot of pain and then really unsettled. I think I had 2 hours sleep for the night. Hopefully this wont last, or I'll be seeing the Dr about PND before too long.
You're right Entreat, this is a really good little group we have here, wonder if the mods could make it a sticky one?????
Missy has had a mixed night last night too - slept for a while and then up at midnight too. I'm pretty tired today and am just about to jump into bed with her. Poor wee things!
Puppies so good to hear that your doctor listened to your concerns and acted on them, that is really refreshing as I initially thought he may not have any reflux idea! I hope the switch back starts to make him feel a little better.
In terms of having reflux at his age, it is a little rarer but I have a 6 year old with it and this from someone who was repeatedly told that they outgrow it by 12 months. I am a member of a US reflux support site and it was only there that I found that there are tons of kids who don't outgrow it on cue and that it isn't abnormal.
All I can say is things do get better, although you may still need medication they do get better as they get older.
By fix it, I would be concerned he would be recommending surgery, there is a surgery for reflux, the fundoplication, but I strongly suggest that you research it fully before ever going ahead. For us, we have refused because most kids who have it, still need to be on medication, which would be the only reason for us to have it, so what is the point. A fundo should only be given if there are life threatening complications and it is your last shot.
With the blood tests, that too is pretty standard for longer refluxers, first off any meds can affect absorption so you may find he has low iron or vitamins, like vit D, the immune is also pretty standard by this age. Don't be alarmed if it is low, most immune conditions are grown out of by 5 or 6.
Also if he is to be on losec for long term, look at getting him to see a naturopath, they can give better quality children specific vitamins that can help, like I said losec stops absorption, we only just started seeing a naturopath for Parker this year (when he was 5) but he has been really well since (other winters gets sick a lot).
Well after a terrible night, the night before last where I did not get any sleep and ended up driving JD around at 1.30am in the morning just to try and get him to stop crying and sleep. Anyway, its been getting worse.
HOWEVER; Dr Freelander called yesterday afternoon and said that the results came back from one of the blood tests confirming that JD had a moderate/sever milk allergy, and has been probably causing his reflux and exzema. We are going to Westmead childrens hospital this morning to get allergy tests done. We are hoping this will confirm the milk allergy and let us know if there are any others. Then we are going to see Dr Freelander after to show him the results and he is going to give us a special formula, which I suspect that it is the same thing we had him on before he went onto full cream milk at 12 months. HA formula.
I am now rattling my brains on how I am going to fed my son as diary was almost his entire diet, other than sandwiches. So I will be spending a lot of time working on this and will probably look for a dietition for children.
SO although its good news, it makes me feel like a terrible mother, I feel like I was making him sick, because that is almost all I was feeding him because he likes it so much... I know, how was I to know, but again I just wish someone would have investigated this option earlier and then he would not be suffering all this time.
I will keep you posted on the results of todays tests.
His ***** test for allergies confirmed he has a moderate allergy to milk, nuts, eggs and dust. Dr says that this is probably the reason for a lot of his health problems (exzema, asthma, reflux etc). He gave me a authorised script for a formula called Neocate Advanced. And I am waiting for an appointment for the Peadiatric dietitician and gastro specialist.
Its nice to have some answers at last. BUT JD does not like his formula, its stinks! Since diary was his main food group I am not sure how I am going to feed him. I am scared for his health and weigh now. I hope the dietitician can help me.
Glad you have a diagnosis Puppies! That's a great start. There are lots of good milk replacements out there. Obviously soy (which I can't stand), but there's also rice milk & oat milk. Oh, and Goats milk, which is meant to be suitable too. I've tried oat milk - it tastes like someone has washed rolled oats in water. Kind of sweet & floury to taste. Not at all like milk, but acceptable.
I find Jack refluxes badly in his car seat, so driving isn't a good option for us. However, I know when the acids are burning or not based on if he cries or goes to sleep! The losec must be working again because although he was having a crabby morning, we put him in the car to go for lunch & he went straight back to sleep.
Oh - and get this... I put Jack in his cot just now as I really needed to go to the bathroom. He's still there & hasn't cried. I can hear him sucking his hand, but as long as he's not upset, I'm leaving him there! Normally, he would not tolerate being put down at all. There is hope yet!
Jack, well done for being a good boy for your mummy!
JD can not have soy product, rice milk or even goats milk. Its the protein that is the problem. Gosh I have so much to learn. I just hope that I get time to research ad keep up with work and my uni assignments as well...
I am happy for an answer, now I just have to figure out what he can and WILL eat. The Neocate formula is meant to be pretty good for essentials, but I want my boy to thrive!
Lets see he goes tonight and over the weekend and pray they found the problem at last and he wont need that aweful surgery!
Awww, Puppies,it's good that you have some answers but sounds like you'll have your hands full figuring out what will help your little man!
Entreat - yay to Jack for lying down for a while!!
I took missy to the chiro again today - it's helping so much and we are even talking of reducing her losec, which makes me happy as I hate having her on medication when she is so little. I'm reducing it a tiny bit and have an appointment to see the chiro again in 2 weeks so that she can see how she's going. This is all under the supervision of our GP. My paed was completely unsupportive of us going to chiro and was unprofessionally scathing of chiros in general. Ugh. Anyway, the chiro has helped missy way more than the paed did so I am sticking with it!!
MummaSue, you obviously find the chiro works? I've had someone recommend an osteo, have you tried that? To be honest I don't really know what either of them would do so would be interested to hear what happens at the chiro....
puppies - glad you've got some answers and hoping it's not too painful trying to work out what JD can eat. I can imagine you'd be wanting to avoid surgery at all costs if possible.
entreat - have you had any more luck with putting Jack down in his cot? We can sometimes put Finn down if we time it right but he hardly ever goes to sleep by himself, at most we might get a few minutes of him lying there looking around before he starts exercising his vocal cords
scarlet121 - thanks for the heads up about the immunisations. Finn is having his first shots on Monday so good to know not to expect the nice sleepy babies everyone else talked about!
Well Finn started Losec on Tuesday, he's on the liquid form. I think I can see a very slight difference thus far though hoping things continue to improve. Can I ask a question - are you all still breastfeeding your bubs? I've had to top Finn up with formula bottles a couple of times and he seems so much happier when I do, as in, he doesn't fight the feed, doesn't fuss, does a big burp at the end and then goes to sleep on my shoulder! I gave him a bottle after his 11:30 feed (he had both sides twice and was still fussing so I gave him a bottle and he had 100ml - am wondering if he's not getting enough milk from me or if he's just a pig??? Babies stop drinking when they're full right???) and he's STILL asleep... Anyway, just trying to work out if I should persevere with feeding him or switch to bottles so your thoughts on your own experiences would be most appreciated.
Hey Lise, I have heard that an osteo helps too but I was recommended a chiro who specialises in babies by a friend who is a chiro in NZ so I took her to that. It is definitely helping. I don't know how but it is. I have been reducing her losec this week and am seeing no changes for the worst which is excellent - it means that her reflux is improving.
To answer your question about breast feeding, from what I am aware and what I have read, it is better to keep breast feeding. But maybe head on over to the breastfeeding threads and ask the same question. Barb and some of the other ladies will be able to help you out on that front giving you good advice on what you're thinking. At the end of the day it is entirely your decision and you are just doing what is right for Finn!
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He was really squirmy to feed & the crying was just like before. He's been coughing & sneezing more this week, and gradually building up to this. Poor kid. We think it could have something to do with his vaccinations. Maybe one or all of them have his tummy all out of sorts. His poo has been burning his bum again, too. It's really acidic. But weirdly, he slept for 9hours last night!?! Both DH & I thought the other one had gotten up to feed him at 2am... but no, he had slept until 5am.
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