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Topic: Don't Know What to Do
Okay, Ds is a little over 11 weeks old. He has had reflux since week 2-3. He also has a dairy intolerance (seems okay with soy so far).
We started with Zantac, which I am fairly sure wasn’t helping much and may actually have been contributing to sudden projectile vomitting (which stopped after we stopped the Zantac).We then spent a full month on Axid (15 mg. twice a day). At first it seemed okay, then not so much. Upon further reflection, I think it never really totally controlled the reflux, based on the symptoms.Last week, we switched to Prevacid solutabs (7.5 mg) once a day. (Ds was 11lbs. 9 oz. as of Sept. 21). I would say that we have not noticed a difference, and perhaps things are worse. (I have read and read and read tons here…I know this can be normal and what Marci recommends regarding dosing).Here are my Ds’s symptoms. I guess what I’m wondering is, based on what I’m observing, are we definitely talking about reflux, is it particularly bad or just more average….Nursing Ds is like wrestling at least a good 80% of the time. Sometimes he’s perfectly calm and it’s “easy”, most of the time he stiffens up, then relaxes, arches his back, throws his head back, straightens his legs almost like he’s trying to push off something and then back to trying to nurse….over and over again. He will also fuss and thrash around.Sometimes he will gnaw on his fists when I know he’s hungry and it’s physically hard to turn his head toward the breast.He chews on his fist all the time, more and more lately.He will arch his back/stiffen up when burping and sometimes just while sitting/being held, sometimes with fussing, sometimes without.He is sometimes hard to maniulate into a sitting position and will sometimes stiffen from that to a standing (supported of course) position.He has been increasingly hard to get to sleep. I used to be able to nurse him to sleep, then lay him down and walk away and that was it. Now, it can take several attempts to get him to stay asleep. That being said, he will sleep (on a crib wedge) in his crib very well at night. He usually only wakes once, maybe twice, to eat over night.He also chokes/gags/coughs and spits up (sometimes still projectile) all throughout the day, particularly at feedings.I honestly think he has a lot of the signs of Sandifers as well as reflux and I am planning to try to videotape a feeding session to catch these behaviors. I’m planning to see my pedi again to discuss all this (yet again…so far she’s being great) and I’m willing to show her this website and their research, but I have to be perfectly honest here, I don’t even know how I feel about it. I want Ds to be healthy and comfortable, but I am also cautious and trying to do what is best for DS.Add to this that the Prevacid that Ds is currently on is hard to get him to take (I see little beads on his face all the time as he spits some of it back out) and the timing is so hard. He wants/needs to eat every 2 hours during the day, sometimes it’s more often. Trying to find one time when his tummy is empty to give him the Prevacid is hard enough, let alone forcing him to wait 30 minutes to eat when he’s hungry. At this age, there’s just no rationalizing and not enough to distract.Any thoughts/ Any Been there, done thats? I don’t really know what I need, just mostly to get all this out somewhere.Thanks,ChristinaDs #2, 7.5 mg. of Prevacid as of a week ago (previously tried Zantac and Axid) Have done an upper GI to rule out pyloric stenosis; refused ReglanHi all, I haven’t been around for awhile. I have Bo who is now 10 months old, just shy of 20#, on prevacid capsules 7.5 mg 2x/day with caracream. He was sleeping better a few months ago (only waking 2-3x/night). But, then started waking up to 10x/night. I am exhausted. The ped won’t increase his prevacid. I am still breastfeeding. He is only solids also. I did the real strict diet for awhile with not much change. I started addind some similac sensitive about 2 months ago because he was still nursing soooo much. He liked it, but then the more frequent waking started happening. Maybe due to formula? But he also has been on more solids too. What do I do? I don’t know what is causing him to wake up all the time. Maybe teething, but advil doesn’t help. Please help!!!!
hi & welcome!
you’ve found a great place!the key to all of
this is RESEARCH and, of course, support!http://www.marci-kids.com is at the
FOREFRONT of research of PPI use and dosing in infants/todders. You might want
to start there to see if PPI dose is ‘proper’then, hop back here
to learn HOW to get that proper dose, if need be, and what FORM of PPI and HOW to administer…
Prevacid 101(last post on
the page): https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1unfortunately the
majority of drs & pharmacists don’t know…babies metabolisms’ are much
faster than adults, so the drugs work differently with them…after medication,
you might then want to look at diet…I have a LOT MORE
TO SAY! and most of it is here: Groupie Intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853it’s looong, but
PLEASE read/skim/scroll through it & refer back to it, as it TRULY will help
you!so glad you found
us!~laura
ps: when
you get a moment, please go to the upper right-hand corner of this screen and
click on ‘settings’ and from there you can edit your signature and let us know
how old baby is, what formula or breastfeeding, MSPI or not, what meds and what
doses and form of meds and how you’re administering-thanks!hellbennt2009-09-25 17:34:34
Lori, yes yes provide resources! that’s what’s so great about this place! we come together to find out how best to help one another!!
I’m posting a link- it’ll wind up garbeld bcse when I copy & paste from MS word to Mozilla it gets wonky, but here goes [edited to add- the link that’s important works
– it’s the la leche league int’l one, lli.org]:
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mso-bidi-language:#0400;}great resources for moms
breastfeeding allergy babies on the LLLI website:
http://forums.llli.org/forumdisplay.php?f=37
hellbennt2009-09-24 07:52:34
Hi
Sorry I havent introduced myself but just quickly I wanted to asked if anyone has tried Losec and if so when did it start to work?My little boy is 5 months old as as very bad silent reflux, he only sleeps in 20 min blocks (3-4times)during the day and wakes up every hour at night. He is constantly clawing at me and arching back and things are just going from bad to worse. I cant even get into a paed until November. Each day it is a battle just to get him to take any milk. Stopped breastfeeding about 3 weeks ago thinking I wasnt giving him enough
He starts to cry when as we are sitting down in his feeding chair which tells me he is starting to associate the bottle with pain. Today I was lucky to get 400ml yesterday 300ml and the day before 100 ml. Have also been advised to not give him any food and focus on the milk. I am also doing everything else- sit him up after a feed, raised his bed ect. Also have tried Zantac, worked for a little while. Sorry for the long story just wanted to know if anyone has had similar problems and any experiences with losec as we have started him on this today. Thank you
sal75 2009-09-24 06:02:34 I guess I will just start at the beginning…..
Jacob was born full term, healthy nearly 9 lbs. He had a two vessel
cord at birth that we knew was there since his 20 week Ultrasound. He
seemed healthy at birth and when we went home. He had a couple times in
the hospital when he would swallow allot, like he could not get his
throat cleared. The nurse did suction him out once with a tiny little
tube, and he had some really thick mucus stuff in his throat. We went
home as planned and he seemed just fine. When he was 6 days old we had
to call 911 because he had thrown up and was choking. He kept gasping
and could not seem to catch his breath. We were taking by ambulance to
the er, they gave him oxygen on the way there and did numerous tests in
the er, cat scan, xray, ekg etc.. all were fine. We were transferred to
another hospital and admitted for 2 days. He was treated for mild
jaundice, put on reflux precautions and monitored. We were sent home on
an apnea monitor just for peace of mind. The ped took a stool sample at
one of our visits right after the first hospital stay and said that he
had traces of blood in his stool and to eliminate soy and dairy from my
diet to see if that helps the reflux. Little did I know I was doing it
all wrong….I was only eliminating the obvious sources, cheese, milk,
ice cream etc…not reading labels.
For the next 20ish days he did OK, random gulping gasping episodes,
puking etc. He was always fussy, turning himself red in the face while
stiffening his body and crying in pain and quite a few apnea alarms
with low hr too. When he was 28 days old he had another choking episode
and his arms and legs turned purple. We were rushed back to the er and
transferred again to another hospital. We were admitted and stayed 10
days. They did a myriad of tests starting with a modified barium
swallow and upper gi. The upper gi came out normal but the swallow test
showed he was aspirating. I was completely devastated when they told me
I would have to stop nursing and use bottles so that his milk could be
thickened to nectar consistency. They brought me a breast pump and the
insanity began. I have 3 other children who all breastfed for long
time. I cried for days telling the nurses I just did not know how to
bottle feed. I pumped everything for him, he has never had any formula.
They then started doing a bunch of other tests, genetic testing, urine
tests, ph probe ( which the old gi said was normal, but I could tell by
reading the number on the screen and looking at him, it was not normal.
Every time the number dipped, he would want to eat to sooth his tummy).
Before the ph probe they put him on Zantac, and for the first time he
seemed like a normal happy baby… his fussiness was gone!!!! Then they
had us go off of it for 5 days before the ph probe. It took almost 2
full weeks when we got back on it for it to fully work again. His dose
has been changed 3 times, from 1ml to 2 ml then to 2.5 ml, all 2 times
a day. He is still doing well on 2.5 ml at nearly 18 lbs. 6 weeks later
they did another swallow study and he was still aspirating, however
they moved him from a 4oz to 1 pack nectar to a 8 oz to 1 pack nectar
consistency and told me that I should be eliminating soy, dairy, eggs,
wheat and nuts from my diet. So for just over a week I ate nearly
nothing… it was horrible!!! We went to see the new GI and he changed
that saying there would be no way I could keep up my milk supply and
calories on that diet and put me on a dairy and soy free diet thinking
that they are two very common allergies and to start with that. He had
me talk to a nutritionist and they gave me a big list of all the stuff
I could not eat and to look for in labels… helpful info! So then my
pediatrician called me with a report from them downloading my apnea
monitor and told me he had had 13 short episodes of apnea with
bradycardia and 3 prolonged episodes with bradycardia. She asked when
my next apt with the apnea clinic was, to which I responded, I have
never been to one.. what is it? So, we made an apt with the apnea
clinic, and pulminologist. After being asked about 100 questions by 3
diff doctors there they came to the conclusion that they would want to
do a bronchoscopy because when he aspirates he does not cough, choke or
anything… considered it to be silent aspiration and they wanted to
see if there was a physical reason for it and to check the lipid
levels. Next we had another swallow study, a week before the
bronchoscopy. He seemed to do better, at least he was not frank
aspirating right away like the last two, however once they got to the
fatigue part of the testing he started having delayed swallow and
laryngeal penetrations. They changed his thickness to 6 oz to 1 packet
of nectar and told me not to breastfeed anymore even once a day. I
called and talked to the apnea/pulm nurse and she said that since I had
already been nursing once a day to just continue it and they would know
more after the bronch. So, they do the bronch, and tell me he has mild
tracheomalacia. His lipid index was 106. I was then told once again not
to nurse even once a day… at this point I am absolutely a messs..
emotionally and physically… I want to nurse my baby.. it is what I
know how to do. So then the very next day the apnea nurse calls again
and said that the pulminologist took a further look at his chart and
thinks that he is not only a
spirating on swallow but refluxing and aspirating also. They are
talking about changing his meds and or adding new meds to stop the
reflux altogether and then doing another bronchoscopy to check the
lipid number again. So now here I am waiting for the results of the EDG
and sigmoidoscopy from the GI, who I have left 3 messages with. I asked
the apnea nurse how they will know if it is the breastfeeding that was
causing the high lipid or reflux aspiration if they take away the
breastfeeding and change his meds, she said they won’t. I am hoping and
praying that someday I will get to nurse him again. It hurts… so bad
to have to give him a bottle. My last baby and I am missing it all.
WHY????? WHy did this have to happen to my baby? I also noticed that
occasionally he has stridor, when eating. He used to sound all gurgly
after nursing laying down, he no longer does. So many ways I thought he
was better but now it seems like everything is worse. Please.. if you
have any suggestions or comments or anything… I just need support….
I want to know my baby is going to be ok and that he will outgrow this
quick. It is killing our family, my other kids are suffering and I am
knee deep in post pardum depression.hi & welcome!
you’ve found a great place!your doctor sounds very old fashioned?I ask this because you cannot mix cereal & breastmilk bcse the breastmilk contains enzymes (amalyse) that will break down the cereal…you most likely don’t have to thicken- thickening is ‘controversial’ and can be cause for debate; there are those who swear it helped their babies…also, there are ‘particular’ cases when thickening is called for: 1) to add calories if baby is vomitting & weight gain is an issue. If this is the case, then you’d see a nutritionist/dietician and most likely find other ways to add extra calories 2) to help prevent aspiration- this is discovered by an actual test called a Swallow Study where the baby is ‘studied’ while drinking and they watch how (the mechanics) the baby swallows and look to see if any liquid is getting into the lungs (aspiration) while baby drinks. if aspiration is the case, then there are actual thickening agents that are used that are prescribed in exact consistancies (ex: ‘honey’ or ‘nectar’ consistancies)all this being said, the key to all of this is RESEARCH and, of course, support!
here’s a conversion chart to check how many kilos your lo (loved one/little one) is: conversion chart: http://www.sfca.co.uk/match/kilolbs.htm.having your baby’s weight in kilos will help you check your baby’s doses
http://www.marci-kids.com is at the FOREFRONT of research of PPI (meds like prevacid, prilosec, nexium) use and dosing in infants/todders. You might want to start there to see if PPI dose is ‘proper’
then, hop back here to learn HOW to get that proper dose, if need be, and what FORM of PPI and HOW to administer…
Prevacid 101(last post on the page): https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1
unfortunately, the majority of drs & pharmacists don’t know…babies metabolisms’ are much faster than adults, so the drugs work differently with them…
you can slo check the zantac dose:after medication, you might then want to look at diet…
I have a LOT MORE TO SAY! and most of it is here:there is even a link from Groupie Intro for finding a dr near you
.(Anyone else reading this who has not posted their dr on that link: PLEASE do, as it helps others! the good AND the bad…thanks!!)
Groupie Intro is looong, but PLEASE read/skim/scroll through it & refer back to it, as it TRULY will help you!
so glad you found us!
~laura
ps: when you get a moment, please go to the upper right-hand corner of this screen and click on ‘settings’ and from there you can edit your signature and let us know how old baby is, what formula or breastfeeding, MSPI or not, what meds and what doses and form of meds and how you’re administering-thanks!
hellbennt2009-09-20 19:59:19
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