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September 25, 2006 at 4:08 am #14197
Anonymous
InactiveImproving or behavioural? Need advice?
Well I am so confused…Here is my story..
Daniel was jumping off the breast crying at 5 weeks, so I went to a
Lactation nurse for advice, she suspected silent re-flux. HE was also so
unsettled and could not calm him during the day. So we went to the
Paediatrician at Daniel’s birth who prescribed Losec 1-mg twice a day. 8
weeks later we went back and at this point I visited another lactation
nurse to keep up the BF, and she thought he was also colicky plus
“extremely alert’ and kept telling me how hard he was to settle (i.e., the
full day there he only slept 40 minutes, and suggested we book into a
sleep centre. Also we decided to BF until he got fussy and then top him
up with EBM to ensure he was getting enough. We went to the sleep
centre (2 weeks ago), and the nurse reported he showed signs of re-flux
and was unsettled (again he only slept 40 minutes in the whole day). So
we went back to the Paediatrician who had both reports from the nurses.
He has put up his medication to 2-mg twice a day, plus 2-mg Zantac
twice a day and we add thickener and he has been on that for 4 days.
Now we see an improvement, slightly with his feeding, but he still fusses
and cries before we give him his bottle (EBM), but once we get him
started, he seems to take it okay. I have not been game to BF him during
the day, but he has always fed okay during the night. The last 3 nights,
however, he cried so much before his feed, the only way we could feed
him was walking around/rocking him at the same time. It seems he has a
meltdown sometimes! Now I am not sure if this is a behavioural problem
or he still hurts?
In summary, he doesn’t sleep more at night (6-8 hours) and still grunts/
gurgles/snorts and kicks madly for 20 minutes after his 4-am feed,
though can put himself to sleep. I still can’t get him to sleep during the
day on his own (I keep him on my lap, so he can get some sleep, but he is
very uneasy, often keeping one eye slit), he still had a few feeds where he
cries before I can get the bottle into him. He still shows tired signs from
the 1 hour mark from feeds. So really is he better and has developed
behavioural problems or is he still re-flux?
I really appreciate any feedback?
Thanks Sharron
September 25, 2006 at 6:55 am #14201InactiveHi Sharon,
Sorry that I have to keep this short, but it’s my 3 year old’s b-day today and I hear her stirring to get up….
My feeling is that the reflux is still not well controlled. Crying before feeds and needing “coaxing” to feed, is not a normal baby behaviour. Babies should want to eat, and they shouldn’t be afraid that food will hurt. Pulling off, arching, kicking, grunting, snorting, choking- these are all signs of reflux. I had a fussy FUSSY first baby, but she never exibited those behaviours while feeding. Feeding was what we did to help her out of her fussinesss (if she was crying, she’d stop when we went to feed her).
If Daniel is crying so much but doesn’t want to eat to the point that you need to carry him around and nurse at the same time to get him to feed, I would guess he’s still in pain. We had to do this with Hailey. Of course it is possible that he has a learned association that feeding hurts, but I have a feeling that he’s still in pain.
You mention that he’s on “2mg of losec twice daily”. Do you mean 2m or 2ml? Either way that’s a REALLY REALLY low dose. If it’s 2mg twice daily, that’s only 4mg a day, which by most standards is so low that it’s probably not even therapeutic. How much does he weigh? Check out http://www.marci-kids.com to find out more info about their dosing suggestions. They’re aggresive but most have found that their recommendations work if you can get your doc to prescribe it. But even by other standards (we were told here 1.4 mg/kg twice daily- which I still believe to be low), that your son’s dose probably isn’t doing much.
What kind of losec are you giving… is it the compound, the mups, or the capsules?
Good luck. I hope that you can get the feeding under control. We never had my daughter on a proper dose of meds (she started at 7.5 mg at 2 months old, then went up to 10mg losec at 3 months old, 20 mg at 6 months old, 22.5 prevacid at 8 months old, and 30 mg of prevacid at 9 months old). Until we got her onto 30mg she was suffering SO much it was heartbreaking, and unfortunately by that point, her feeding aversion was past the point of return.
Keep us posted.
September 25, 2006 at 8:27 am #14206hellbennt
Keymasterwelcome!!
I rather doubt it’s behavioral- most likely the losec is way too low
…please find the time to skim/read this
: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1glad you found us!
~laura
September 25, 2006 at 9:24 am #14208InactiveHi and welcome,
I agree with everyone else that you probably need a higher dose of losec, but I had one more thought: Do you elevate his mattress so he’s sleeping at an angle?? This really helped my son’s sleeping, even before he was on the correct meds.
September 25, 2006 at 9:36 am #14210Inactivesounds like that low dose isnt really helping the reflux. from the other post i read, it sounds like he is terrified to eat, because of the pain. i would show your doc marci-kids.com info and demand a higher dose of the PPI.
zantac was worthless for us.September 25, 2006 at 9:48 am #14211InactiveHello and welcome.
I agree with the others. His dose is way too low. Poor baby.
September 25, 2006 at 1:10 pm #14224InactiveAnyway you could see if a higher dose makes him feel better? Are you seperating the losec and zantac by 4 hours so they don’t cancel each other out? WE used zantac and prevacid for a few weeks before the prevacid fully kicked in.
At around 3 months old we started seeing a speach pathologist for feeding therapy because dd was starting to associated eating with pain. She would cry every time we started to feed her. I’m glad we caught it early before she started with aversions. It is a long process, but after a year she is doing better and getting discharged next month! I hope he feels better soon and can enjoy eating!
September 29, 2006 at 4:13 am #14575InactiveI am so glad I found this board..I feel like I am getting know where.
Thanks for your thoughts! It is a relief to speak with people who are in
the same boat.
I have pushed my Ped as far as he will go.
He is on Losec suspension 4ml of 2mg (8mg) per day plus 4ml Zantac per
day. We have tried thickner, and it has made no difference. He starts off
eating quite oaky in the beginning of the day, but as he gets more tired
during the day he won’t eat unless he is sleepy.
We have been referred to a GI specialist, but may have to wait a while, in
the meantime, I don’t know how I am going to get him to feed. I try the
bottle and BF, sometimes he is just not hungry.
I think he is associating feeding with pain, but why will he eat sometimes?
How do you cope with the feeding?
Lori – Happy birthday to Sarah! We are giving Daniel 2ml of 2mg Losec
suspension (8mg) per day and well he is still refusing some/most feeds,
except during the night. Can I ask how you coped with the feeding
aversion?
Heather, I do elevate his mattress and keep him upright for 30 minutes
after feeds.
Sarah – Can I ask how did the speech pathologist helped?
Thanks everyone!
Sharron
September 29, 2006 at 8:37 am #14581Keymastersharron,
from here: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;am p;PN=1
there’s a section of breastfeeding your gerdling & in that section there’s a link to a yahoogroup
this might help you as well as this group
hey, the more information the better
~laura
September 29, 2006 at 10:31 am #14584InactiveSharron, the speech pathologist helped us with strengthening her swallow because she had poor motor because she wouldn’t eat. She also had a mild swallowing dysfunction that comes along with prematurity and is common among refluxers. She would choke and gag alot when trying to drink.
She helped us by giving us different methods to use when trying to feed dd, as she got older we used alot of games and bubbles. I can’t really remember what we did when she was young.. I think it was postioning and choosing an environment that she could calmly eat in. We used the tv and music as distraction too, and definatley alot of praise. I know there are alot of posts about this… somewhere on this site.
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